Oso High Endurance Sports -- Biting Back at ALS

                                                                
 

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1 Day to Tomorrow: 2013 (next up:  Ski Season)


"1 Day to Tomorrow" represents a new perspective in this series, intended to be a reminder that time shouldn't be wished away--even when we are looking forward to something. The day numbering is ascending rather than descending, because none of us know how much time we have, and the growing number will remind us to be grateful for the delicious living we've been given--in our case because of the fact that what I got on July 28, 2010 was an ALS diagnosis and not the front bumper of a city garbage truck.


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Days 1260-1265, December 26-31, 2013. Angel Fire is a special place for our family. We built the cabin in 2004, and it immediately became the place we went to do things. We came here to ski (both alpine and nordic, sometimes in the same day), hike, run, snowshoe, mountain bike, road bike, hunt deer and elk (with the camera), play tennis, basketball, ping pong, floor hockey, golf, frisbee golf, board games and sardines. We built trails and forts in the woods. We cut down some trees and carved our initials in others.

We dreamed of bringing grandchildren here and doing it all over again.

All that has changed.

I can still get on the road tandem, and on a stationary recumbent in the exercise room, and this week we will learn whether there is enough duct tape in the Moreno Valley to secure me into a bi-ski for a ride down the mountain. In the best case, I will be immobilized for our friend Paul Mohr to carefully steer me down. My only remaining physical assets that can be useful in skiing are the muscles in my legs, but the equipment for adaptive skiing for people who can't ski standing up is designed for the most common user -- someone with no practical lower body strength. This means the legs are strapped in place, and the upper body strength determines how control of the ski is allocated between the skier and the instructor. And we know how that works out in my case.

The first part of the week up here has been a combination of heart lifting and heart breaking. I desperately want to be with my family as they soak up the alpine air, but I love that the hard work Jean and I put in to make the cabin a reality is giving so much joy to so many people and it will continue to do so long after my time expires. Also, one of my dreams for this place was to sit and watch people come and go and have fun when I was too old to join them. I hadn't been thinking "too old" would come at 53, but this is otherwise pretty close to what I had in mind.

So 2013 is a wrap. Tomorrow we start figuring out how to get me on the mountain. A year ago, I would not have predicted we were going to have another ski season. Tomorrow, also, is the start of a new year for this blog series, it will be 2014: One Day to Tomorrow. Please stay with us!

Days 1263 -1264, December  29-30, 2013. Emotional lability is my second favorite thing about ALS. It causes inappropriate laughing and crying. Happily, while I get the former, I don't get the latter. But what, exactly, would constitute "inappropriate" crying for someone who has ALS? That was a rhetorical question. 
It's easy to sing in the church choir if you have a fabulous voice. But people who sing in the church choir and are not all that good at it should get a free pass to Heaven even if they have a couple of Commandment violations. There is no glory in this, and most other worshippers can't think of the right words to say when they bump into William Hung in the doughnut line, so they just don't say anything at all. I have a genuine special place in my heart for folks who are willing to do this to make sure we have music. 
You know where this is heading. 
Imagine how uncomfortable I could become when emotional lability decided to pop up when our William Hung stood for his solo on Sunday. I tried biting my lip, closing my eyes tight and praying, jamming my hand into a sharp metal piece on my wheelchair, and I even envisioned unspeakable cruelty being inflicted on a puppy. Nothing worked. 
Right there in the front row, in front of God and everyone. A big ear-to-ear Cheshire grin. Even when it's at its innocuous and somewhat amusing best, ALS sucks.

Days 1260-1262, December  26-28, 2013. [Note: This starts off sounding like a biking story. If you are inclined to skip biking stories, scan down to the part about mercury and ALS. That part is not about biking]

I'm Not Dead Yet (Part Deux). Part One (Uno/Eine/Un) was December 23. Today we hit the streets with John, Michael and Captain Dan for 33 miles on a beautiful New Mexico winter day. 

Notwithstanding the experience of the 23rd, when I hit a spot of bother right at the start of the ride, I attributed the difficulty to my impending demise, ignoring the possibility of environmental, equipment or other factors that might explain the very sluggish early miles with a sprightly tailwind (such as a hangover captain). 
As I have whimpered, complained and whined previously, the power capacity of the legs beneath me is not what it once was. Not that long ago, I could push 250 watts for 20 minutes, take a ten minute break, and do it again. Now, I'm doing that session at around 105 watts. For Virginia Tech engineering graduates, this means the bike goes slower. 
While slow, therefore, comes as no surprise, the computer on the tandem was reporting about 20% off what I currently expect. In comparing one tandem ride to another, I have to eliminate variables as much as possible. This means I need to look for rides with similar weather conditions, courses and equipment setups. It's also important to take account of my recent workouts, nutritional state,and overall level of enthusiasm. The biggest variable, of course, is the captain. And even when comparing apples to apples (Captain Dan to Captain Dan), I have to consider the individual performance variables that affect his speed (not that it applies to Captain Dan, but a captain might be affected by factors including but not limited to: hangovers). As you can readily appreciate, this is an art, not a science. 
An art, much like developing a treatment for ALS. The most recent theory I have heard from an actual medical doctor -- who claims to be a "holistic neurosurgeon", which sounds utterly impossible -- is that I have most likely been poisoned by a placental transfer of mercury from my mother, on account of because of the fillings in her teeth. Aside from the facts that I have been tested twice for exposure to mercury and other heavy metals, and that my mom grew up in Colorado Springs, where flouride occurs naturally in the water, and she had no fillings... Aside from these facts, I feel that Dr. Costello almost certainly has ALS by the short hairs. Although, to be fair, she did warn me not to count my chickens before they hatch -- her cure rate with ALS is "not 100%". So, I am prudently holding back my entry fee for the 2014 Leadville Trail 100 until we see the results of the urine tests she plans to do after I empty my bladder and then take two pills she said will "bring out the mercury in my system". I'm taking her at her word that the pills contain something other than mercury, because if they were just mercury, it wouldn't be necessary to send my piss off to someone in Alabama. I bet if the pills were just mercury, even a lab in Albuquerque could figure it out. Plus, if she were feeding mercury to her patients, I am thinking she wouldn't be able to afford the sweet raven black Mercedes because her malpractice premiums would be cost prohibitive. And it is not only ALS patients getting the pills. Every patient who left the office while I was there was toting a packet of the pills. So,if something funny was up, then the next thing after the comma would be "defendant" not "M.D." Right? 
Anyway, back to comparing bike rides. I'm pretty good at figuring out the variables, and, with a tailwind heading north on the bike path, Dan and I should be faster than 14 mph, which is about all we could muster. I could tell it wasn't an issue of Dan's motivation because I could see his clavicles rising and falling at a pace that told me he was humping it pretty good. With John and Michael on the front of our petite peloton, giving us the benefit of a draft, we were tickling 15 mph, but I simply could not hold the level of effort for long. Holy smokes -- what would happen if we hit the inevitable headwind!? No one will be willing to ride with me anymore. We'll be in single digits if we back down to a reasonable level of effort! I'm going to be very upset if my heart explodes going 14. All these thoughts (and more) occurred to me in the 3.75 miles before Captain Dan pulled over to figure out what the heck was wrong with the tandem. 
Throughout the course of my withering athletic abilities, it has been my practice to look first to my equipment for an explanation. Only rarely has equipment provided the reason. It's interesting to me that twice this week I have bypassed the opportunity to blame the bikes, looking instead in the mirror for someone to insult, only to find the equipment was the villain. Perhaps I have turned a corner in accepting my circumstances. Perhaps this is like when I started having dreams where I had ALS, only it is now finally something my conscious brain is willing to own. 
Perhaps my excessive use of the word "perhaps" has reminded me of the greatest break-up letter anyone has ever written to another person. It has. I was the recipient of the masterpiece. After describing an unnamed person who was definitely me, the woman went on: "If you see that friend of mine, tell him he is missed. Perhaps he will care. Perhaps not. Either way, be sure to tell him there is an asshole living in his house."
Clever girl. 

Days 1258-1259, December 24-25, 2013. When we stop learning, we are goners. I've read somewhere something like that. Well, today's lesson hit its mark and stuck.

What we learned today carried over from the workout on the 23rd... Do not connect the negative to the positive and the positive to the negative on the RT 300. Of course, I'm talking about the left vs right error described in yesterday's entry.

When I got out of bed today, I discovered soreness with few equals in my history on bikes. All that comes to mind is the day after the Leadville 100.

Bikes leave me tired after a hard effort, but rarely sore. Today I feel like my quads, hamstrings and calf muscles were pounded with meat tenderizing tools for several hours. No, that's not it. More like I woke up yesterday, after having not run a step since December 2010, walked outside where the temperature was 30 degrees, put on track spikes, and sprinted 400 metres without stretching. Naked.

Note to self: "left" goes to the left leg; "right" goes to the right leg.

Day 1257, December 23, 2013. I'm not dead yet! There are workouts that are reliable yardsticks of the progress of my disease. The nature of the workout has changed over time. In 2010 there was the Leadville 100. The verdict that day was I was ahead of the game, as my time on the day was 10 minutes faster than two years earlier. In 2011, I mostly focused on a handful of bike workouts where my power output could be measured. That is when I first saw ALS impacting my leg/cardio performances. The slices taken out of me, however, were modest. In 2012, I was on the suicycle, and I was getting faster all the way through August. That was partially attributable to the fact I was on a learning curve since the suicycle was new in April. On the power meter indoors during at that time, I continued watching the power decline, but not at a very alarming rate. By August, though, when I began slowing on the suicycle, the pace of the drop in power was becoming somewhat creepy. To make matters worse, by that time (still August 2012) I could no longer navigate the stairs at my health club, and all the cardio equipment, including my power metered bike are upstairs. So, I couldn't really verify what seemed to be happening on the road.
Bike performance is rarely tracked by times. There are virtually no "record" times for road biking because road conditions vary so much from route to route, and because wind has such a huge impact on speed.
Power output, however, don't lie. No, it don't. The guy who can put down the biggest pile of watts over any amount of time, is the baddest ass. So, if you have a reliable way to track wattage, you know without question whether you are more or less of a stud than you were at any point in history.
Once I lost the ability to climb the stairs at the club, I lost my ability to track my power. Until September of 2013, that is. In September, I started physical therapy at Health South. They have a machine that is essentially a bike. I sit in my wheelchair, which is locked to the "RT 300", and I am strapped to the pedals in a way that neutralizes my messed up reflexes. Then, we slap six electrodes on each leg (on the quads, hamstrings and tibial muscles). As you spin the pedals, the very smart computer in the RT 300 applies stimulation to the muscles involved in the various parts of the stroke. Take the left leg for example. With the knee at its highest point, the quads and tibial muscles fire right about when the stimulation is applied to the muscles. At the same point in the stroke, the hamstrings are relaxed and the stimulation is off. Meanwhile, in the right leg, the opposite is happening at any given moment. So this is a perfectly coordinated dance, much as the sun and the moon acknowledge each other while they move in both opposition and concordance. Poetic, no? Mine? No.

So, I have ridden with and without stimulation, and the stim seems to provide an advantage of about 2%. If -- and this is a big "if" -- the electrodes are correctly applied to the legs. Well, today's workout taught us what happens if the electrodes are stuck where they don't belong; specifically, what happens if every electrode is applied to the wrong leg. The error went unnoticed for quite a while.
From the moment we hit the "go" button, I struggled. My pedal strokes resembled squares more than the desired circles. My heart rate was stupidly high, about 10% above normal for this effort. My breathing was labored. For all the effort, the numbers on the screen seemed to be taunting my struggle with the RT300. My cadence was low, as were the readouts for every other measure of my labor. I was panicked. Was this the day my remaining physical abilities would put me on notice they were going to abandon me, too? How long would it be to my last ride? I had been assuming that day was months down the road. Perhaps this meant the final ride was only days or weeks away.
All these thoughts went through my mind until it dawned on me -- the stimulation was wrong. All wrong. Exactly the opposite of what it should be. How could this happen? Is the RT 300 broken? Finally, my hypoxic brain tumbled to the obvious explanation.
I was so relieved the grim reaper was not staring at me through the window, I had the electrodes reattached to the proper appendages, and did the whole workout again. Every day is a gift. Even with ALS.
I can think of five friends who have passed away in the last two years who had no reason to think their time was short. Each of them expressed sympathy for me when I was diagnosed. At that time, all indications were they would live to be very old and wrinkled. And then I went and outlived them.
I sort of always assumed I would live to be at least 82. That's average for men in the United States. My only grandparent who didn't make it to 90 smoked for 50 years (and he saw quite a bit of 76).
Every issue of the newspaper has stories about people who had no idea how short their time was... Until yesterday. Don't be fooled. Lots of numbers go into an average. Every day is a gift. Especially with ALS. Merry Christmas!!
 

Day 1256, December 22, 2013. The close of the tax year is coming right up. Please consider making a tax-deductible donation to the ALS Association. Click here to donate now! Thanks to so many of you for your donations in the past.
As I have written before, it always feels better when I am doing something to fight ALS. Sometimes that means experiments with drugs; other times that is writing creative insults about ALS; and sometimes it's helping the ALS Association.
ALSA provides research grants for promising science, they educate the public and people who have ALS about the disease and what is available for treatment (uh, nothing) and how to make life a little bit easier when you have ALS. They also provide equipment to people who have ALS to help out where insurance doesn't exist or won't cover. I have borrowed lots of equipment from ALSA's magic closet. I have tried things before making a buying decision; I've used stuff while waiting for insurance to do what insurance does (occasionally, I have thought the delay was intentionally calculated to see if I might die before they had to buy something new); and I've borrowed replacement items when mine were in for repair.
We have about $50,000 worth of adaptive gadgets in our home. People who don't have the insurance or dough to hook themselves up with these items often turn to ALSA for help. You can see why ALSA needs bucks. Big ones.
Thanks for thinking about it during the holidays! Hohoho.
 

Day 1255, December 21, 2013. Physical therapy and occupational therapy have come to an end. At least unless we want to pay for it without the assistance of our insurance. Truth is, if we thought it was making a difference, we would pay for it. If I started on September 9th, with optimism my latest drug experiment would pan out. The thinking was, if the new drug was building muscle, PT and OT would help us see the benefits easily.
The decline has continued, however, and I would say the pace is about the same as well. Plus, the benefits of PT and OT continue without the formal program. For the OT part, the routine was electronic muscle stimulation coupled with exercise. Happily, I am so weak that no special equipment is necessary to simulate weight training. For instance, to simulate biceps curls, all you have to do is put my elbow on the table, lift my hand up until it's something near 90 degrees to the tablespoons, and then let go and start your watch. You stop the watch when my wrist hits the case table. If the watch runs longer, then The Gun is getting stronger. We have the technology and personnel to make this happen. Second, the PT piece was always the same machine, and the nice folks at the PT place are letting me continue using the equipment. Do not tell the insurers. And, if you were tempted, notice how I have not mentioned the name of the joint? That is because I don't want to jeopardize the very sweet deal I have at Health South. Damn! Now I went and said the name.
Well, don't ask for the same deal and use my name. Thanks.

Days -1253-1254, December 19-20, 2013. Today's topic is a status report or "bitch list". From the top down, here goes:
Days -1250-1252, December -16-18, 2013. Sports Update. The Lobos flew off to phrigid Philly last week, and ran into a buzzsaw in the form of Notre Dame Friday night. It was a pretty solid performance from the Irish, and the Lobos were a much better team than was apparent from the match. Sweet season for the first go around for Jimmy. They have the holidays off, and then they are right back at it for an abbreviated Spring season that includes several exhibition games. So Jimmy takes off his redshirt this week and he will be free to compete for playing time in the Spring. Game on.
At AHS, Abby is having a breakthrough early season. She has knocked a solid 1.5 seconds off her best 50 freestyle, and is earning the extra water the old fashioned way -- she drags in from practice and often snags a two-hour nap before she turns to calculus and singing (usually simultaneously) for the evening.

  • My right eyebrow hangs lower than the left. This is from atrophy of the tiny muscles in my forehead that hold up the rest of my face. I didn't say this was a list of things that matter much; it's just a list, that's all. My right eyelid is getting weak. When I'm tired late in the day, my right eye opens more slowly than the other one. When I wake up and I still need more sleep, my right eye is slow to open or it doesn't even bother. This is a handy development, though. It's an objective way of knowing whether it is time to get up. If both eyes open together, it's time. If not, close them both and try again later.
  • My mouth. Where shall I begin? There is the talking thing. Here is me rapping. Click here. Chewing is difficult, mostly because my tongue isn't strong enough to make the food go where the teeth are waiting for something to dig into. Opening my mouth is not as impressive as it once was.
  • Weak jaw muscles. This is a problem when I'm in for service such as having my teeth brushed or -- heaven help me -- cleaned. No Gitmo inmate has been through worse. See, my tongue and throat do not have the combined strength necessary to keep much water from pouring directly into my lungs. So, once there's more than two drops of fluid in there (give or take), it's a full-on waterboarding.
  • Swallowing is not that difficult, but it requires great concentrations or it can easily become a "let's-call-9-1-1" moment. To reduce the risk of these incidents, I opt for softer foods such as milk. I can have more substantial stuff (enchiladas, stews, rice, cereal, pasta, bread, for example), but, the time required increases with the substantial-ness of the item. My favorite food to eat when I'm focused and well-rested is steak. It needs to be rare enough that it charges you when the fork goes in, but a tender, under-cooked piece of beef soaked in olive oil brings great joy. Even more if Jean chews it up first.
  • Goo management is a challenge because I can no longer conjure up a goober that would make the Liberty Bell sing. Indeed, stuff that winds up gargling around in my throat can be coughed up just far enough that I don't inhale it, but not far enough to gain control of it to spit. Another goo management hurdle is dealing with plain old saliva.
  • So far, the worst problem that arises is when I have food or drink in my mouth and life calls upon me to laugh. My lips are not strong enough to allow me to gently smile while maintaining a barrier to fluid escaping from my mouth. This can leave a mark on the carpet. Same problem surfaces if I am looking down when a chuckle materializes. This most often occurs when I am "walking".  Bitch, bitch, bitch, huh?
  • My neck has become a royal pain in the neck. The first time I noticed a problem was May 2011, during the 12 Hours of Mesa Verde, when I rode under the direction of Captain Brent. The problem progressed on the bike up to the near DNF at Paracycling Nationals this July. Off the bike, I began having notable fatigue in the neck later in 2011. Now I am rarely far from neck support. I use an airplane-type neck pillow when I sit in a chair, my wheelchair has a headrest, as does the tandem, and I can no longer lift my head off a pillow, which means I always have neck support in bed. When I eat, I don't take bites with my head resting because of the desire to avoid having unchewed food simply slide down, unmolested, until coming to a strong stop in an inconvenient place like halfway down. Sooooo, this means I need to balance my head right between chin-falls-to-the-chest and skull-drops-back-on-the-headrest. The distance between the two is about 15 mm. I make every effort to err toward the latter because people are inclined to think there is a cognitive impairment when the other thing happens.
  • My arms have almost nothing left. I am aware I have been saying this for a long time. As I predicted back in 2011 when I was whining about my arms, I do now think of that time as the "good old days". And there will probably come a time when we look back on what my arms can do now with wistful fondness. A sample of what they can do now is: drag my hands across a relatively flat surface with a low coefficient of friction (a sheet, but not a lumpy couch cushion); or shrug my shoulders; or push away from something with about 20 pounds of force (this is an almost useless talent, as I need to be helped into a position to do that); or pull my arms back; hold on a second -- I have drifted back into putting a positive spin on the topic, while I promised a bitch list...
  • My shoulders hurt like bloody hell because the muscles that support them are all but gone; and my right elbow burns whenever my arm is bent (yeah, that's pretty much all day, owing to the fact I'm in a wheelchair or a recliner any time I'm not on the tandem. Bitch, bitch, bitch.
  • My hands have only a small amount of measurable grip strength left (9 lbs on the right, and 5 on the left by dynamometer if you are keeping track). Practically speaking, that's enough to give a perceptible squeeze of someone's hands,but not enough to hang on to a tennis ball placed in my hands. The only other thing I can do with my hands is raise the middle finger on my left hand about a half inch. This is a way I can express disapproval or disdain. It's standard ASL (American Sign Language). Bitch, bitch, bitch.
  • My core is fading as well. I can't sit up on the side of the bed without someone supporting my arms. Sit-ups? Yeah, I've done my last one of those.
  • Walking is also not going to happen. It has been around six months since I last took a step on my own. When I need to move to or from my wheelchair, someone grabs my wrists while I shuffle forward. I can't sidestep anymore because my hip abductors are no longer up to the task. When I'm in bed I am having difficulty uncrossing my feet because of the work slow down in my hip flexors and abs.
  • On the bike, I'm clearly losing power, but the current array of adaptive devices is keeping me on the machine. At the physical therapy facility, I am riding a machine that provides electronic stimulation to my quads, hamstrings and anterior tibial muscles while I ride. It's a short but intense workout that really provides my best cardio work.
  • My whole body twitches. These are subtle twitches, more like the jump of an eyebrow than a head fake. But they are everywhere. The only reason they have not made me totally insane is I have been successful at compartmentalizing them as Magic Fingers without the box for quarters. The other way to look at them is like Chinese water torture, or being poked by the index fingers of about one hundred little men simultaneously. I see no upside to looking at it that way, so Magic Fingers is my final answer.
  • Breathing is the big one with ALS. If the diaphragm doesn't have the goods to make the airbags fill up, the lungs collapse bit by bit until you can't get rid of CO2 fast enough. The tests on my respiratory function have been no cause for immediate alarm, but the numbers have been slowly drifting down. I'm at 67% of "normal" for my age and weight, etc., but I've never been "normal" in terms of measures of vital capacity (I've always tested below 100%). The first test after my diagnosis put my FVC (forced vital capacity) at 85%. When do problems become apparent? Like most things with ALS, the answer is "it depends". The first clue is when subjective difficulties arise. Often the first sign is shortness of breath while on the back in bed. I haven't had that yet, but I am seeing some subtle changes. If my bike stuff is particularly tight around the home of my diaphragm, I will tend to pant a little. When I blow my nose or sniff, the customary power seems missing. Could I be overly sensitive? Well, the answer is "yes", but Schneebeck's First Law of ALS is "It's Not Your Imagination, and It Won't Go Away". That has been the case with every relevant symptom for at least four years.

Other than those items, I have no complaints. And, quite frankly, my list is not bad when you compare it to where lots of people are by the time they have had ALS for as long as I have, if you know what I mean.
Bitch, bitch, bitch. Right?

 

Days 1247-1249, December 13-15, 2013. Lucky ALS patients (the ones who don't get taken down by something else first) eventually lose enough respiratory function that they have a fairly crappy choice to make. They can either go into a hospice program with very little chance of coming out the other side, or they can opt for breathing support. You're probably thinking "breathing support" means mouth-to-mouth delivered by Heidi Klum. This was my understanding when I agreed to the whole ALS thing. I'm learning now that it's almost but not quite that good.

In fact, what they do is cut a hole somewhere in your neck that is the plug-in port for a mechanical ventilator. Think Christopher Reeve, complete with the smoking hot scarf that covers the hose.

One of the benefits of ventilators you might not have already have thought of is that, while you can't cough with a vent, you do still build up goo in your throat that has to come out or you drown in the goo.

I should pause for a moment. Have you ever gone back to read something you wrote a long time ago, and found yourself thinking "dear me, I was a major dumbass when I wrote that puppy"? Well, I have.

A few years ago, I had a secretary who wanted very much to kill me. This seemed to be her plan from her very first day on the job. Initially, I was puzzled by this because, well, I had just given the thumbs-up to hiring her. Sophomorically, I expected this would buy me some goodwill for a period of time. At some point down the road a bit, I decided she must have been told that I had not been in favor of her hiring initially. What happened was one of my partners sat in on the interview (ostensibly to protect me from myself because I had a string of unfortunate hiring decisions, but I now suspect as a practical joke) and gave a strong recommendation in favor of making the hire. This information must have been leaked to the secretary, resulting in the relationship starting off with me having no goodwill in the bank.

Well, her first day at the desk went badly. The usual order of things was I would draft a letter by way of an email to my secretary. Perhaps like this:

"Please do a letter to Fred Chavez in the Gonzales case -- Fred: I reviewed the settlement offer that you sent, asking that I present it to my client. It is clear that you and I differ significantly in our assessments of the likelihood that your client will ultimately prevail in establishing that my client has any liability, and that we further disagree about the appropriate method for calculating the damages that would be recovered, if any."

Then the secretary would fill in the address, add a greeting and a closing, and otherwise make it a presentable letter. The next time I would see it would be as a final document ready for my signature.

On my new secretary's debut at her desk, I sent an e-mail to her something like the pretend one I typed above. She printed out the e-mail and put it back on my desk with an emphatic "X" scrawled through each occurrence of the word "that", and a handwritten note asking whether it was OK to finalize the letter.

I had a number of reactions to the piece of paper before me, and to the red marks mocking my grammar.

Whether there is a rule with respect to the proper use of the word "that", or her suggested revisions were merely more efficient, is something I never investigated; however, because I was already growing afaraid of her, I immediately adopted her preferred approach and never went back. You can review the whole of the blog entries over the past two and a half years, and I bet you won't find a half dozen extraneous uses of "that".

Perhaps it was my moronic overuse of the word; perhaps it was her clandestine knowledge I had not been in favor of hiring her; maybe it was both. Whatever the explanation, it was abundantly clear I did not deserve to live. It's also equally clear I have gotten way off track here, so I'm stopping now. The point I was trying to make is you can look at any piece of my writing -- e-mails, letters, briefs, etc -- and know, by looking only at my use of the word "that", whether it was written before or after the day my new secretary darkened my doorway for the first time as an employee of the law firm.

As I was saying, I have often reviewed old writings and wondered why my prior clients didn't demand their money back. There is a very good chance someone reading this now will say something like "dear me, the guy who wrote this is a major dumbass". One basis for coming to that conclusion could be the fact I have never spoken to an actual healthcare provider about how ventilation works. I'm open to being corrected, and I hope I'm wrong and vents are really rather fun and easy to operate. But the way I understand it is when you have that goo in your throat, it has to be removed by mechanical suction. Keeping in mind that you can't ask someone to do it for you on account of because you have a vent in your throat, and/or because ALS has finished screwing up your ability to talk.

Anyway, by the numbers, I should reach the decision point in 12 to 18 months. Possibly more; possibly less. Estimates are that fewer than 3% of ALS people wind up on ventilation. Jean and I had a brief discussion about this a few days ago, and two extreme viewpoints came to mind. On one hand, why not get one? I mean people can live on them for a very long time. I've read about one guy who has been on a vent for 12 years. Christopher Reeve wasn't a big pussy who cashed in his chips when he found out he had to use a vent. How selfish would it be to give the message to my family that, when things got difficult, I bailed? There is one big difference between me and Christopher Reeve. In truth, there are several (including the whole Superman thing), but one of them is high level quadriplegics (like Superman) can't feel anything below the level of the injury; while people with ALS get to enjoy every itch, muscle cramp, ache or pain. But let's set that aside. So the argument goes, don't be a weenie -- suck on the vent, watch TV, write on your fancy eye tracking computer, and enjoy seeing your family grow. Right?

On the other hand, speaking of selfish, you've already been treated to several years of travel, biking, friends bringing food and fun to your house, and thinking and writing about the big picture while your family and friends waited hand and foot on you. Hey man, it isn't all about you. At some point, enough is enough. How selfish are you, anyway? Let people get on with their lives already.

I and we are not at either extreme, and probably won't get there. At some point the right thing to do will just become clear. And that's where we left it.

Less than 24 hours after we left it there, I found myself in a conversation with a woman whose husband had ALS. She offered this bit of advice: "do NOT get a [vent]". With that ambiguous comment still hanging in the room, she added, "that was the worst three months of the whole experience".

We'll just leave it there for now, hmm-kay?

The takeaway from this blog entry: do not overuse the word "that". It just might save your life.

Day 1246, December 12, 2013. UNM Sports Update. Jimmy's Lobos soccer team has breezed through the NCAA Tournament's first rounds by stopping George Mason, Penn State and Washington without conceding a goal. Tomorrow is the first game of the Final Four in Philadelphia. UNM takes on Notre Dame. If they win this one, they get the winner of Virginia and Maryland on Sunday. Woof woof woof.

Days 1241-1245, December 7-11, 2013. Ho Ho, Ho. Christmas weather has arrived. Christmas in Chicago, that is. A low pressure system is just sitting here. It was cute at first. We woke up to snow last Thursday. But by Saturday we still hadn't seen the sun. In New Mexico we have about three cloudy days a year. This was three in a row. I have never seen that in Albuquerque.

The bike gang was so disoriented by the situation that we planned a ride for Saturday on the unstated assumption that the clouds would part at some point. This did not happen. Even bundled up like this, we were not ready for what was coming.

 

Days 1239-1240, December 5-6, 2013. The Spirit of New Mexico. Every year, the Albuquerque Journal and the Chamber of Commerce present five awards they call the "Spirit of New Mexico Awards". They recognize public service that has been the subject of an article published by the Albuquerque Journal. And Oso High received one of the awards for 2013, which is completely cool.

The awards were given out at a luncheon on Tuesday, for which we dressed up and wore some socks. Modrall Sperling bought and filled (!) two tables. They also bought a table for our family, which we filled. Tim Holm bought a table for the bike crew. So we could count on 40 friendly faces, but there were far more than just those.

To say we were not worthy is a big, honking understatement. The other awards went to a female doctor who is responsible, statewide, for the examination of children who are victims of sexual battery. In addition to the daily burden of her occupation, she also has to be sure to avoid smiling in any picture relating to her occupation. Even when she is receiving an award for what she does. Another was presented to a man who tracked down two minute 16 mm films of greetings shot of family members for 248 New Mexico Air National Guard personnel serving in Vietnam. Then he digitally converted them. And then he began hunting for the veterans. I don't know how he spent the rest of the afternoon... A third went to a woman who finds a way to get food to the pets of homeless people. The final went to a man who might never get lucky again (at least not with his wife) because of how the presentation went down. Mr. Mechenbier is a pig rancher -- perhaps I should say he is a rancher who raises pigs -- who founded a home for orphaned children, particularly focused on keeping sibling groups together (that doesn't happen often when left to the State). Well, while Mike is a successful businessman who undoubtedly has good judgment in many key contexts, he really dropped a load on Tuesday. First, when he was on stage receiving his award, he decided to recognize his wife (good call, right?), so he described her as the person who handles the artificial insemination of the pigs. Note to self, huh? But he couldn't leave well enough alone. While the room was still chuckling over the pig-poking comment, he asked her to join him on the stage for photos. Before presenting her to Chamber and Journal folks and Senator Jeff Bingaman, he paused and asked his wife (right there by the microphone) whether she had washed her hands. I have been known to sacrifice short term domestic tranquility for a good laugh, but this one could have ramifications beyond the car ride home.

Click here for the Oso High part of the program.

 

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Days 1230 -1239, November 25 –December 04, 2013. El Tour de Living Room. The weather people called it a "perfect storm". If, by "perfect", they meant "sufficiently frightening forecast to funk up your plan to ride El Tour de Tucson", they were right. By Thursday evening at 5 pm, the prediction for Saturday was a "100% chance of heavy rain". Based on that, we decided to bag it, but we were pretty reluctant to do so, which led us to assign John the task of looking at the weather again at 4:30 in the morning to assess whether there had been enough improvement in the forecast to prompt us to reconsider. As it turned out, John didn't even see the need to get a second opinion. By then, the outlook was 100% likelihood of heavy rain on both Friday and Saturday. Nice. Perfect day for the drive, and a nearly ideal opportunity for hypothermia on the ride. By my reckoning, the worst possible outcome would have been to make the decision to do the drive, and then decide the weather there was too awful to ride. If, hypothetically, we had decided to drive to Tucson, that would have been what happened (click here or here or here for samples of what we missed); however, I was way wrong about what the worst possible outcome could have been. A 59 year-old Tucsonian went to El Tour on Saturday, got hit by a car, and will never have another Thanksgiving with his family. The fact I missed out on my last opportunity to ride in El Tour seems silly in comparison.

Not only that, but back in Burque, we had come up with an alternate and far more comfortable plan for Saturday. Our first thought was to map out a century of our own in and around Albuquerque. A quick weather check put that idea right in the crapper. The call was for a high of 32 with some snow and very high winds. No better for Sunday. Back to the drawing board.

In 2006, I rode El Tour in 4:34. It was an almost perfect day for me. The conditions were close to ideal. I rode for over two hours with the lead group. There was a bad moment at around one hour when I underestimated how hard the group would attack a descent. I sat up to have a snack during what I thought would be a rather pedestrian pace down a long hill. Right about that second the hammer went down, and the pace instantly went over 40. I was completely unprepared for this, and, as I was trying to shove my oatmeal raisin cookie into my shorts, I got spit right out the back of the pack. Over the next few minutes, I chased at a level above the point when my "check engine" light comes on. I looked down and saw my computer was reporting the highest heart rate I had ever seen attributed to me. As my despair sunk in, it was exacerbated by my assessment of the riders who would become my new compadres. We were a bedraggled bunch -- all similarly-situated with tongues dragging on the pavement. Even though we were ahead of several thousand riders, it seemed that the day was a gigantic flop, and I would probably have no choice but to sell all of my bikes and take up bowling (again). As the weight of what had happened settled on my shoulders, I looked up and saw the big gang had slowed the way a group of racers will in a civilized race like the Tour de France when the group agrees upon taking break to tinkle. This happens in an event like El Tour de Tucson like, well, never. In fact, for a mysterious reason, the lead police vehicles had decided to slow the group for exactly as long as I needed to reel in my tongue and clean the gravel off. This gave me another blissful hour in the warm embrace of the lead pack.

When my status as an imposter finally spat me from the bunch, I was better prepared for the inevitable, and I quickly found my people for the remaining half of the race. And so it went all day -- I narrowly missed some crashes, gastric distress and other unpleasantries, and finished in 4:34.

Thus, 4:34 seemed like a good choice for how long to ride. On a trainer. In the living room. Watching college football. Voila! El Tour de Living Room.

While the organizers of the event in Tucson encouraged riders to gather for a 7 am start, there was no similar pressure in the living room. So we slept until around 10, then wandered in the direction of the living room for a couple of hours, finally starting at about 2:00.

During the afternoon, there were several different members of the little peloton, but I always had company and someone who could make the many equipment adjustments I needed to stay relatively comfy in my machine.

Late in the afternoon, I decided to look to the 2008 edition of El Tour for the inspiration. That was the year Jean and I rode our tandem the length of the course in 4:40. No drama. No suffering. In this way, 2008 was much like El Tour de Living Room, except that I had a far superior view of my beautiful wife this time around.

Days 1227-1229, November 22-24, 2013. A funny thing happened on the way to Tucson. Actually, it was before we left for Tucson. The National Weather Service decided there was a 100% chance of "heavy rain" Friday night, and a 90% chance of "heavy rain" for all day Saturday.

I know what you're thinking. I'm thinking the same thing, and I'm disappointed in myself for what both of us are thinking.

Days 1225-1226, November 20-21, 2013. I have picked on one of our priests, Father Jimmy, on two occasions (click here or here) if you want to see how. Not today. Father Jimmy read this quote -- not once, but twice -- during Mass on Sunday.

"Somebody should tell us, right at the start of our lives, that we are dying. Then we might live to the limit, every minute of every day. Do it! I say. Whatever you want to do, do it now! There are only so many tomorrows."

           -Pope John Paul  VI

For almost three years, I have been writing this blog -- pounds of words, if you were to print it all out -- and that is the essential point I have been trying to make. And JP6 put it into five sentences somewhere around 50 years ago. This must be why actual writers do a little research on their topics before they start typing. According to The Google, if I had done 0.55 seconds of looking, I could have found the JP6 quote and saved myself some serious time.

On the other hand, if I had done that, I would have missed out on significant self-reflection. For example, click here.

Before the first Oso High Mountain Bike Race in 2011, a reporter for Angel Fire's local newspaper wrote that, in 2010, I had received my "death sentence". In truth, I received that on July 26, 1960, the day I was born. Like everyone else, the next morning, I woke up one day closer to the end. As JP6 said, there are only so many tomorrows.

While we are on the topic of faith, I have a couple of words about that. When my faith is strongest, I know that, after I die, I will be in some sort of paradise. So, why try so hard to hang on? Because God screwed the pooch by giving me paradise in this life.  

Jean is the love of my life -- my best friend and soul mate. She is a perfect companion for the many adventures we have shared, and she is so many things I am not. As put so eloquently by Austin Powers' nemesis Dr. Evil, "you complete me". Our children have arrived at the Delightful Young Adult station on life's train route without first spending a couple of years at the Arrogant and Obnoxious Teenager stop. Even with Jimmy soaking up life as a pampered D-1 athlete, we are still getting a couple family dinners every week. And our family dinners have never been a series of no-eye-contact-low-volume-mumbled-please-pass-the-gruel-type dinners. Ours are full-on choke-on-your-food entertainment. Every night Abby wants a 15 minute tuck-in conversation with Jean, and, when Jimmy was having a girlfriend crisis recently, the first (and probably only) person from whom he sought advice was Jean. Now, guys, raise your hand if your mom was even on the emergency call list when you were in college... Yeah, that's what I thought -- you got drunk and had a buddy drive to a girls' college, where you picked up his girlfriend and a terribly poorly-chosen date she lined up for you, and then you went to a bar in rural Pennsylvania to hear Otis Day and the Nights, and two large men announced they were going to dance with your dates while yet another large man sat at your table stirring his Jack Daniels with a switchblade.

So when an angel came to me in a 2010 dream I don't remember and told me that it was time to go to paradise, I must have said something to her such as "kiss my ass", which she presumably reported to God, which explains how I got ALS.

Then people start rallying around me -- my immediate family, my parents, friends (including some I didn't even know I had). After three years, I'm still on the bike, Oso High has raised over a quarter of a million bucks to fight the disease, people bring us dinner twice a week, and we have two completely perfect caregivers who have become dear friends -- our nephew Nick Pisano, and Melonie Huntsman, a nursing student brought by a different angel who didn't get the memo.

So the first angel comes back after my hands have been taken, and I can't walk or roll over in bed without help, and she has a smirk when she asks "how bout now, bitch?", and I politely decline again.

Understandably frustrated, God has started messing up other lives. Sort of like when the villain can't get cooperation from the hero, so he puts the gun to the girl's head.

How much of this will I put up with before I finally say "OK"? How about when no one in the house is getting any sleep? How about when Nick's life has been on hold for a whole year? Or when Melonie graduates from nursing school and keeps working for us instead of getting a job with luxury perks such as health insurance? Or when Abby picks UNM over a full ride to Stanford because she can't bear to be away from home while we have this gigantic mess to deal with? Or will it be when I have to make the horrendous choice between checking out or going on a ventilator because I can't breathe on my own any more?

And this is what happens when my faith is at its strongest.

What we know every day is there are only so many tomorrows. And tomorrow we leave for Tucson and our 111 mile ride. Oh yeah. Maybe JP6 has some advice for RG3. With my Washington Savages (yes, I think the name is shameful and should be changed) sitting at 3-7, RG3 should be doing some research.

Days 1220-1224, November 15-19, 2013. Back in the early days of this website, events for which we were preparing never crept up on me because the "Days" were set up to count down to the event -- a daily reminder of the upcoming thing.

The current numbering system marks the time that has passed since my "end of the world" diagnosis. And the number helps us keep in mind that the diagnosis was not the end of the world; in fact, while it was not part of the grand family plan, it has launched some great adventures. I'm committed to this system.

However, Tucson has managed to sneak up on me. I feel like we need another long ride and about ten more days to be sure we have the equipment and practical issues handled. And I had that feeling before Jean skidded to a stop on the bike path Sunday. Now we are trying to figure out where Jean will be by the day of the ride.

111 miles has always been a pretty long way for me, but it was less intimidating back when I could ride it in about 4-1/2 hours. This weekend, at 4-1/2 hours, we will probably still be looking forward to seeing the halfway point. The course closes at 11 hours and experience tells the team that we need to keep the deadline in mind all day. A year ago I remember thinking we should be able to knock out Tucson's course in about eight hours. It didn't work out that way, as we rolled in at 9-1/2 hours. Since then, I have been unpleasantly surprised by the clock after too many rides to count.

The truth is I am losing leg power at a pace that should make it possible to sit next to me and watch my quads shrink. Have a look at the photo I posted recently (day 1204) of the devices that have solved the knee knocking problem. The perspective is not immediately apparent, but my left leg is higher/closer to the camera than the right. Why is the left quad so small in comparison to the right? Because it is evaporating, that's why.

The pace of the loss of strength is creepy. In August, Dan and I rode our two fastest times ever on a route we have ridden four days a week for over a year. In October and November we have put in some of the slowest times ever. It's prompted me to check the bike for frozen hubs, rubbing brakes, a rusty chain, sabotage, and a fat man duct taped to the frame under my seat. No luck. This leaves the only reasonable explanation.

So we are unlikely to take any nap stops during the day.

Days 1218-1219, November 13-14, 2013. If you're gonna ride a century, you do have to train. With less than a month until Tucson, we decided to go out for 60 miles on Sunday. At 10 in the morning.

At 4 in the pm, we called it a day with 39.3 miles under our belts. Six hours; 39.3 miles. At that pace, we will need a calendar to keep track of our ride time in Tucson.

We can do better. Here are the problems we encountered (a partial list): 1) Not everyone showed up at 10. I get to say this all sanctimoniously because I was ready on time for the second time in three years. How did I accomplish this? Well, here's a hint -- Jean was still in her bathrobe at 10. 2) After I was loaded onto the tandem, we discovered that one of the key rollers over which the three miles of chain must pass was effed up. However, we have plenty of engineering, plumbing, building and medical device expertise, plus a world-class room worker, a cell phone and the phone number for Charlie at Two Wheel Drive, so this only held us up for a half hour or so.

3) Several of us had to pee again by the time the roller was rolling again. 4) My headrest, seatback, leg straps,other leg straps and arm slings all needed adjustments. 5) Jean had a flat, Nick went back to help her, and he had a flat while he was doing so. 6) The tandem had to go up a hill. And the big one the very next thing after... 7) Jean shrieked "oh, #%$! Oh #%$! Oh my God in Heaven! Oh #&%!" What all that meant was that Jean got too close to a guard rail (so close, in fact, that she hit it), corrected to the right, which was, sadly, where the tandem was. This put Jean on the concrete real good.

Because we are blessed with friends like Dr. Tony Pachelli at New Mexico Orthopaedics, we knew by Monday afternoon that Jean had suffered a separated shoulder. A fairly long-term owee for sure, but not the sort of thing that requires any mechanical repair work. Day-to-day, she can avoid almost all the pain as long as long she doesn't do anything silly like lift something heavy. Something like a husband, for example.

Other than those things, it was a fabulous ride.

Days 1216-1217, November 11-12, 2013. We can't keep our eyes off the wreck. Imagine seeing the cars when they are still spinning. This is why we can't avert our eyes when we see the latest self-inflicted harm from Miley Cyrus. Is this why people read this blog series? Are they waiting for the moment when I look like a little kid who has let his balloon float away -- initially proud and glowing, but quickly fading to a cold realization of defeat when he discovers that the balloon is not coming back?

I don't think that's it. I think people read because they are curious what it would be like to stare down both barrels while completely lucid. While the thoughts are unimpaired, but the body just will not cooperate. While most people my age are assessing a career exit strategy for ten or twelve years down the road. While many of those people are wondering whether they bit off more than they should have tried to chew with private school tuition or a second home or an expensive mistress, extravagant hobby, bad habit, unfortunate career choice, elongated adolescence, impulsive car buying, day trading, eBay or bad luck.

Many people have asked me (more artfully) "how can you stay so positive?" The answer is simple: it surprised me, too, and if you ever wind up in a similar boat, you will surprise yourself, too. If you have a positive outlook on things before whatever poop storm comes your way, you will probably conclude, as I did, there is no other way to be. Even after the poop storm hits

Days 1205-1215, October 31-  November 10, 2013. Halloween. Oh, yeah. This is one of those stories best told with pictures with one exception. Our nephew, Joe Friedrich, shared "dude in the coffin" duty with our other nephew, Nick Pisano. As the stream of hundreds of trick-or-treating kids slowed to a trickle, Joe stood in the kitchen telling the story of the father who called Joe a "x$@&ing #%&hole". Jean asked if the terrified child was tiny, and Joe responded incredulously "no way -- it was at least this big [gesturing to a level about 24 inches from the floor]!"

Hey, it was Halloween. If you didn't want your kids to be scared, it would have been a good idea to go to houses that did not have a guy dressed like a vampire reaching out of a coffin to grab kids waiting for candy, or a pregnant zombie whose belly gets ripped open by a screaming demon child trying to get out, or a slutty cop savagely beating a prisoner whose eyes have been gouged out and who has a bloody knife buried to the hilt in his chest, or a gigantic rat that attacks kids who are headed toward the candy bowl that actually had only dog bones in it, or a zombie guarding the bowl, or a dead and unquestionably disgusting guy who springs from the grave every time the rat attacks.

If you didn't want your kids to get scared, you might have been smart to skip houses like that. Our house was was like that. Oh, and I forgot the zombie baby sitting on the porch swing eating a brain.

   

  

  

  

  

 

Day 1204, October 30, 2013. Just like that -- problem solved. The boys got to work on this one, and we are back in business. The nice folks at Giv-Mohr, Paul's company, brought it to life, and it has been tested, fine-tuned and refined. It's ready for El Tour.

The beauty of the innovative product is its elegant simplicity. It can be put into place, taken out of service or adjusted in an instant. Voila!

There has never been a disabled athlete with a better support team.

Days 1201-3, October 27-29, 2013. The Day of the Tread. 80 miles on a perfect Fall day. All of it. The whole day. The villain of the event was my knee tracking problem. What a day, though.

Our crew was John Blueher, Dan Porto, Paul Mohr, Michael Donovan, Nick Pisano, Damian Calvert, Chris and Joanna Eckstein, Jean and me. Everyone gathered in the front yard for our 7 am departure, which occurred promptly at 730. Coincidentally, that was also the time the ride started at the place designated as the start line, which was not our driveway. My use of the word "driveway" is a cheap foreshadow of something that you will read about in a few minutes.

So we were a bit behind. We took a little shortcut and joined in with the tail end of the riders heading out for 80 or 100 miles.

From the moment I loaded into the tandem, I knew I had a problem with my knees. The cold air made me instantly tight. ALS tight is different than the regular kind of tight. When I was being lowered into the seat, Dan had to put one hand behind my knee and push down on my shin in order to cause my knee to bend. And once I was in my seat, my knees slammed together as if I had just dropped my glasses while sitting on the toilet.

The problem here is what I described in my story about the Tour de Acoma last month. My hip abductors (the muscles that let you step sideways) are weaker than the adductors (the muscles that help you bring your knees together). I have had an imbalance since the mid 1990's, when I rehabilitated the adductors after a groin injury from hurdling.

At the time, my doctor told that, "unlike love and marriage, every groin pull will be with you for life." After suffering the indignity of walking around with an ice pack stuffed into my sweats to chill the affected area (a side effect of which was to refrigerate nearby structures that had nothing to do with the injury, but that have an aversion to cold), I vowed to make my groin bullet proof by making it so strong that hurdling could not make it unhappy ever again.

In the process, I did something I had never before done in the weight room. I got so strong on the adductor machine that I could lift the whole stack of weights. This is significant but embarrassing at the same time. When you work out on machines in a health club, the machines generally make a clanging sound from the plates slapping together, or they make no sound at all if the person doesn't allow the plates to come together. It's different, though, if you lift the whole stack, because all that's under the bottom plate is two rubber stumps that absorb the weight of the stack. In the down stroke, the plates make a dull and distinctive "thud" that transmits through the air and the floor in such a manner that everyone in the room knows what just happened. Each person in the room will casually find the source of the familiar sound. There is no less impressive machine for a man to achieve this level of strength on than the adductor machine, and I will now tell you why.

In the James Bond movie "Goldeneye", the villain Xenia Zergevnia Onatopp is a Soviet black widow who dispatches her lovers by crushing them, sometimes in flagrante, between her powerful thighs. Onatopp could undoubtedly have done the stack on the adductor machine -- an impressive if not intriguing talent for a woman, but a curious if not suspicious accomplishment  for a man. For this reason, I made it my practice to lower the stack gently.

The imbalance between the opposing muscle groups persisted through my 40's and accompanied me to ALS. It was truly unfortunate when the noticeable weakness first surfaced in the already-weaker abductors late in 2012.

Sunday morning, the problem was apparent to everyone when my knees had to be pried apart to stretch my adductors. Once we rolled out, it was clear that the problem would plague us all day. With each pedal rotation, my left knee would cross under my right knee and vice versa. Sometimes as they passed one another they would bang against each other, but every time, the inside of my right lower leg would hit the metal cage of the front derailleur or scrape along the chain. 80 miles, and about 50 revolutions per minute.

We fought it for a long time by stopping frequently to stretch, but this approach never had a chance against my Onatopp inner thighs. And there were plenty of distractions, including the golden ribbon of cottonwoods along the Rio Grande and fabulous costumes on the riders. Just in our group of ten, we had Wonder Woman, Charlie Brown, Jack Sparrow, a man with an open wound down the length of his exposed spinal cord, Senora del Muerte, a KISS zombie, a non-specific zombie and a skeleton dressed up like a female bike racer in drag. Oh, and two guys dressed up like John Blueher and Dan Porto.

 

During the day, all three captains (Jean, Dan and Damian) spent time in the tandem. My already compromised power production was hampered further by the knee tracking issue. This slowed our progress considerably, as did the numerous stops. However, this was a team effort and we always had people in front taking the wind off us, and Chris (and sometimes Nick, Paul and Michael) gave hands-on help by actually putting a hand on the back of the tandem and pushing. I can only imagine how the low backs felt Monday morning.

As the afternoon wore on, we ticked away the miles (more slowly than expected) and I made an error in an important mathematical calculation related to my nutrition. My breakfast was 1000 calories. My first food stop was at mile 25, which was right on schedule. However, without thinking about it much, I asked for what added up to another 1000 calories. Then, relying on the same calculation (simplified: 2+2=2), I had another 1000 calories dumped in at 43 miles and again at 64 miles. So that brought the total to 3000 calories, not including breakfast. That was almost double what I consumed during my most gluttonous Leadville 100.

 

There were consequences for my bad math. My body did not want the surplus, and it made a concerted effort to dispose of the overage between miles 65 and 82. It was a truly epic battle.

We decided to bypass the actual finish line and wrap up our ride at the house. While this was certain to be less exciting than the mariachi band and balloons awaiting us at Embassy Suites, at least some of us had enjoyed enough stimulation for a day.

As it turned out, however, we were not done with exciting moments. We had one more coming. I'm not going to say who was at the helm of the tandem because that might sound like a complaint and I do not complain about anyone who is willing to take on 70 Pounds of Steaming Funk. Even if he or she ejects me from the back seat onto my head on the concrete. You may have guessed that is what happened, and if you did, you would be wrong because that would sound like a complaint.

What happened is that we turned into our driveway at our personal home at the perfect turning radius to allow the forces of nature (centrifugal force, primarily) to lift me from the tandem, an operation that normally requires two people and presents a significant risk of lumbar strains.

 

It was a fitting way to end the day, some 8-1/2 hours after we rolled out. For about 17 miles it had been difficult to think about anything other than getting off the tandem because of the aforementioned gastrointestinal distress. Be careful what you ask for.

We finished our day with enchiladas on the back porch. We agreed there will be no Tour de Tucson for us unless we figure out how to control the legs. The engineering team is on it.

Days 1197-1200, October 23-26, 2013. "What is this?" Where did it come from?" And, most importantly, "What does it want?"

These are the questions that come immediately to mind when I catch a glimpse of my belly in a mirror these days. You see, I've never had a gut, not even a little one. I have been on a year-round training plan for one thing or another since the summer of 1975, right after 8th grade. Once I hit six feet in 1976, I have weighed between 160 and 165 pounds -- at the high end when I was running track, and at the low end when I was running distance. [If you have noticed some schizophrenia in my use of punctuation, you are not alone; however, editing what I write with my eyes is a pain in the neck, so I let some errors slide.]

Remember the window shades that were mounted on spring-loaded cylinders, and when you wanted them to go up, you pulled down slightly and they would lock when you stopped going up? The cool thing about them (particularly if they were in your classroom) was that, if you pulled down and then released the bottom, the shade would fly up and go thwappa-thwappa-thwap around the cylinder. This is what seems to have happened in my lower abdomen. There was muscle from about two inches to about six inches below my navel that is gone. It happened quite suddenly, right about the same time as a cylindrical jelly roll appeared below my belly button. Thwappa-thwappa-thwap.

Days 1194-96, October 20-22, 2013. Long training rides are important when you prepare for a "century" -- a ride in excess of 100 miles. Not for the reasons that probably come to mind for a non-cyclist, such as building strength and endurance. For a long ride you will need many things you might not think of until you have taken a long ride.

For example, a long training ride may reveal that you will need a different nutrition plan for the distance over 80 miles; or that you will require a bottle of Advil at 75 miles; or that your intestines will spontaneously empty at 90 miles. These are all important things to know about before you put on nice clean clothes for your century.

With ALS a passenger, the list of things that are important to know is constantly changing (by which I mean "getting longer"). This Fall, I have added a few items to the list, such as: (a) my knees smash into each other with unpredictable regularity at some point during most rides; (b) my arms need to be stretched frequently, and I can count on the need to arise about two minutes after we complete a stop for some other purpose; and (c) on longer rides it is not possible to infuse enough calories into me to keep up with my insatiable demand for food.

Saturday morning, we went 53 miles in about four and a half hours, including several leisurely breaks. It was pretty mellow for me and gave me a fairly high level of confidence that I can be ready for Tucson in about a month. On the other hand, today we went out for a quick 16 miles that should have been uneventful, and the knee-bashing was out of hand for the entire duration of the ride. I have no idea what brings it on or what makes it go away. Saturday, I had the problem for the first leg of about 14 miles, and then it vanished and did not resurface. Go figure.

Days 1186-93, October 10-19, 2013. [EDITORIAL EXPLANATION: From time to time, albeit rarely, I have asked for pre-publication input from various sources. This entry was subjected to such review. Each reviewing person had the same reaction: "I agree with you, but you can't publish it.., AND I laughed my ass off." This presented me with a dilemma. How could I both publish it for the point I was trying to make (and for the comedic value it has), and avoid the obviously objectionable content? What follows is my attempt to do exactly that. If you read it and think I'm vaguely describing a conversation I had with you, you are wrong. The person I'm talking about in the story that follows does not read or know about this website.]

I have been debating for several days whether to write about this topic. As with many other close calls, I decided to err on the side of more is more, figuring that people will continue to cut me significant slack because either (a) I have a fatal disease, or (b) at some level, you assume ALS must cause brain damage. The risk I'm running is that you may read this and conclude that I am the sort of guy who, if fed Viagra, would not experience the desired outcome; but, instead, would just grow three inches taller. If you catch my drift. Heck, you might conclude that from the fact I just used that illustration. With the warnings thus served, I continue.

In the entire time I've had ALS, it has never occured to me to say to someone "you think you've got problems -- try this one on!" Two exceptions: the first was last football season when the Dallas Cowboys billionaire owner (who would grow three inches taller on Viagra) was literally whimpering about something having to do with football on ESPN. The second was last week when I was talking with a woman about nothing in particular.

The other person: How are you doing?

Me: I'm good. How about you?

[Here I have redacted material relating to the conversation that my reviewers (and I) agree was objectionable.]

Now, I have lots of friends and acquaintances who have shared their problems with me. Many of them have said something like "I shouldn't be complaining to you." And I've written on several occasions that suffering is suffering. It is a matter of perspective. If you are a football player and you have a sprained ankle, that is real suffering. So, too, if you like to go for a jog at lunch time, or do your own grocery shopping, or hop on a pogo stick. But there is a limit on this concept, and I found it somewhere south of a rich man sitting in the luxury suite of his billion dollar stadium whining about his billion dollar football team not getting to the playoffs. I also found it last week. [Here I have redacted a description of the reasons why the conversation was so bizarre, by any standard, really, but doubly ironic when considered in the context of having taken place between this person and another human with ALS.] As they say on ESPN, "C'mon, man!"

Perspective is a powerful coping mechanism. It enables someone in my boat to say "it could be worse -- I could have been hit by a bus or I could have pancreatic cancer." It allows someone with pancreatic cancer to say "at least I didn't get hit by a bus." And it allows someone who is about to get hit by a bus to say "at least I didn't have pancreatic cancer or ALS." To not have any sense of perspective would be a real curse. To be unable to see that essentially everyone has it worse than you (when life has delivered exactly what you asked for) would be debilitating. And your friends and family might, at some point, start saying "c'mon man!"

Days 1184-1185, October 10-11, 2013. This picture of our matching tats is overdue.

 

So, I have had two interesting interactions with the world is this week. On Tuesday, Jean and I went to vote after a lovely and breezy ride with the boys. The polls closed at 7, and we rolled into the driveway from the ride at 6:40 pm, so we skipped showers and even changing clothes, and showed up to cast our ballots in our cycling costumes.

When we arrived, we were shown the back of the line inside an elementary school basketball court. The line snaked through the gym in such a manner that everyone in line had -- and took -- a good look at me. No one asked, but they all seemed to have the same question. "Let's see: power wheelchair, arms don't seem to work, can't walk, cycling uniform... Uh... WTF?"

Jean had gone to talk with some friends while I inexplicably felt compelled to hold our places in line (last and next to last). I felt naked the way I do in occasional dreams where I find myself inappropriately, well, naked. I'm not the only one who has those dreams, right? Right?

If I had been standing up, I would have looked nervously at my feet and shuffled them. Instead, I studied the joystick on the wheelchair as if it were leaking pizza sauce. Then I decided to go on the offensive. I scanned the room for anyone looking at me, and when I found someone, I made direct eye contact. Not a menacing mad-dog, gang member glare, but a sincere, perhaps pleading gaze that politely asked "why must you entertain yourself by looking at my bare ass?" This approach was both effective and fun.

Tonight, one of my law partners, Sam Adams, came to the house with her twins to drop off a delicious meal she had prepared for us. The kids played outside while Sam and I caught up. By the time they came in, I had a question for them. Sam said "so, you guys, Mr, Doug's brain works just fine. In fact, he's really smart. The problem is his muscles don't do what his brain tells them to do. So, remember how we were talking about the tongue being a muscle? Well, Doug's tongue and the other muscles in his throat don't work so well, and that makes it difficult for him to talk and to be understood."

 This is not completely medically accurate (there are intermediaries between the brain and the muscles -- the motor neurons -- and they are supposed to pass the messages from the brain to the muscles, but they don't do their jobs), but it's ALS in a nutshell, isn't it?

Sam's explanation rolled off the kids like water off a duck's back. They listened closely, answered my questions, and we had a nice little chat.

Waiting for something immeasurably profound? I don't have it; however, I do have an observation. Talking about ALS is better than the other thing. Got a friend with cancer? I'll wager a box of Krispy Kremes that's what your friend thinks, too.

Days 1182-1183, October 8-9, 2013. If you missed it yesterday, check out this six minute video on The YouTube from our team ride last week. Click here.

Today we took a 50-miler on a beautiful but breezy day. It's part of a plan. Our crew for El Tour de Tucson is going to change. Now we will have Jean, John, Dan, Paul, Nick, Michael, possibly Jean's sister Lorrie, and a third captain -- Damian Calvert. And we are adding a new event -- the Day of the Tread. There is a dispute among teammates a as to which distance we will ride. The relevant options are 64, 80 or 100 miles. The smart money is on Jean making the final decision, and she wants to do 80.

Day of the Tread is the Sunday before Halloween. Costumes are required.

 

Days 1175-1181, October 1-7, 2013. Physical therapy is a mixed bag. Sometimes I feel like I'm making progress (i.e. getting stronger), but then I get smacked back down by something I see or do. On Thursday I was all pumped because of my performance on the "bench press" (this is a young woman holding one of my hands while I sit in my wheelchair and push forward, while she turns the pages of Vogue with her other hand). I moved to a different part of the gym, where a group of inpatients worked in a group exercise.

I need to set the scene. My PT facility serves outpatients like me and also inpatients from the facility's attached bread and butter rehabilitation hospital. The hospital's raison d'etre is Medicare. Old people find they can't function in their homes, so their children start looking at retirement homes and discover, to their shock, that "retirement homes" have, as their primary function, the mission to erase any positive net worth held by the Greatest Generation. Burdened with this realization, the kids need time to circle the wagons to come up with a plan to house and feed Granny (jello), while preserving some of Granny's estate. You know, for future generations.

As a temporary fix, they discover that Medicare will pay for a luxurious stay in a rehabilitation hospital for such time as Granny is making progress. Thus, Granny and her new friends find themselves in "group" PT. By the way, Granny is no dummy, and she has been spending some of her ample free time comparing notes with her companions in her new, temporary hood and she knows what the kids are planning. Consequently, Granny is pissed and plotting the murder of her offspring. This is the mood she brings with her to "group" PT. And there are seven more with the same attitude gathered together for "group" PT.

In the middle of the circle a man with what looks like the worst job in Bernalillo County sits on a stool so he can spin to keep track of his charges during every repetition.

The old people are all in wheelchairs, sort of crumpled down as if gravity doubled on them when they checked in to the hospital. No smiles. It's as though they are not really present. And, since they are all scheming multiple killings, that's true in a very real way.

Overall  the scene is very depressing. Coming from me, that's saying something. The workout gets started, and each person holds a weight in each hand. They range from one pound to five. The therapist tells them to lift one hand at a time over their heads. I watched a few reps before it occurred to me -- it would take a medical miracle for me to be able to do what they were doing. These sad people could individually kill me with their bare hands. They could smoke me at 100 meters. I would lose to them by forfeit in checkers or dominos.

I rarely see myself in a mirror. Literally or figuratively. Other people shave me, brush my hair and teeth, and, when I'm near a mirror, I'm usually at counter height, which means the most I see is my head. Even though I'm on a ridiculous machine -- a recumbent tandem trike -- we pass more bikes than vice-versa. This allows me to feel much the same as I did before ALS. Every night I have 10 hours of dreams where, though I have ALS, I speak clearly and I can walk and run. In a song Harry Chapin recorded that you never heard, he sings about a teenage musician who doesn't see himself the way the world does. "His voice is Chicken Little's, but he's hearing Paul Revere". It's better that way. This week I saw myself in a full-length mirror and through the eyes of Granny and her pals. I'd rather watch the Dallas Cowboys.

 

Check out this video on the YouTube from our ride with Sport Systems Mountain Top Cycling. It's six minutes. Enjoy the ride. Click here.

Days 1168-74, September 24-30, 2013. Just add beer. It's the time of year bike racers call the "off-season". That means the obsessive adherence to a training plan comes to a brief pause. Except for one category of riders -- those who just found their form at the end of the racing calendar. For these people, their is no down time. Getting to race form at the end was not the plan, they have no idea why it happened, and they are unwilling to risk going soft. They will try to carry the same fitness into the new year, and they will scour the internet for races they can enter in January and February in Arizona. There is a fairly obvious reason I know this -- mine occurred in the Fall of 2007. There is a less obvious reason I know this -- my fastest suicycle racing took place in August and September last year. With ALS on board, I tried to keep riding fast on my ubiquitous "use it or lose it" theory. That went fine until January 31, when I went KO on a training ride.

We get an off-season this time around. Tuesday we went for a ride to the balloon park. The wind coming back was going to be substantial in our faces. Jean spoke up. "How about a stop at Nexus?" [a local brew pub that had the marketing sense to poke a hole in their fence out onto the bike path]. We had never done this in the hundreds of times we have passed by the inviting hole. It would mess up our average speed for the ride. But it was the off-season to a magnitude I've never had one before, soooo...

We rolled up to the Nexus patio. I stayed on the trike. Everyone ordered up a beer except me (because beer tastes like wastewater to me, thanks to ALS -- and I mean the high level nasty stuff in the first pond, not the slightly bitter brew in the third pond that is fit for watering the alfalfa fields), and we enjoyed the sunset over I-25. I optimistically took a sip of Jean's. It tasted like the first pond swill from Chernobyl. I made a face consistent with this observation.

A few days later, we were joined by a group of our friends from our race team, Sport Systems MountainTop Cycling, for a Saturday morning ride. Team rides in the off-season are usually not very intense. This would probably be a nice fit. Then Damian Calvert and Jean discovered, about ten miles in, that Damian could fit his feet into Jean's shoes. I do not mean this figuratively. What this meant was that Damian and Jean could swap rides -- Jean off the tandem and onto Damian's cyclocross bike, and Damian would be my new captain.

I was instantly happy I had taken Friday off. Damian has won the New Mexico Mountain Bike Series a ridiculous ten years in a row. And that's the Pro category. He turned 40 this year. Last weekend, he won one of the Series events in Gallup. That's a big "so what?" given his history. What made that day remarkable was that the guy in second place, one second behind Damian, was Levi Leipheimer. Levi is one of the best cyclists in the world. He stood on the podium at the Tour de France. He has perhaps the most impressive cycling resume in US history aside from that of the most infamous doper in the sport's history. Levi is also a doper who cut a deal as part of the deflowering of Armstrong. Levi is a roadie, true, but he also won the Leadville Trail 100 Mountain Bike Race in 2009.

And the guy who beat him like a rabid dog last week settled into the captain's seat on the tandem. This was going to be a ride.

 

The southbound return leg was fast, as expected. We held a pace at or near 25 mph for six miles. That was fun for everyone. Damian could have gone faster, but my maximum pedal cadence before my legs start to freeze up is about 65 rpm, and that translates to about 25 mph.

Northbound, we got to see Damian unplugged, because we had a nasty stiff headwind that kept the speed in check, so we were both at full power and held around 18 mph even with the wind.

Overall, it was a very fun 33 mile morning, capped off with beer and Krispy Kreme doughnuts in our driveway. Off-season bike rides. Just add beer. Or Diet Coke for me, since it doesn't taste like Chernobyl well water.

   

Days 1163 - 1167, September 19 - 23, 2013. El Tour de Acoma. Some days on a bike are just not that great no matter how grateful you are to be on the bike. Today was one of those days.

It started last night. We went out to Acoma to spend the night so we would not have any trouble making it to the start on time. Bad assumption.

The first sign of a problem came when we sat down for dinner. Instead of going for the tasty and nutritious offerings of the casino hotel's buffet, we decided to bring trays of enchiladas from our favorite restaurant, Duran's Station. We also brought a cooler of beer, two bottles of wine, and a carb-rich bottle of rum.

Shortly after settling in to tables around the pool, the Bluehers, Dan Porto, Paul Mohr, Nick Pisano, Jean and I said prayers that were rudely interrupted by hotel security. "We have been informed this group may have alcohol in your possession." He shuffled his feet. This was not his first rodeo, but it might have been his second. He continued, "do you have alcohol in your possession?"

At this point I'm going to stop using specific names because of the potential that there may be an ongoing investigation.

A Person at the Table said "yes -- is that a problem?" Now, the problem with that answer is that the person who delivered it -- in truth, everyone at the table -- knew that the Acoma Pueblo is dry. No alcohol anywhere, especially at the sacred casino hotel.

The Heat responded that, yes, that was a problem because of what I just said, and the alcohol at the table and in our rooms would have to be confiscated. Another Person at the Table apologized profusely for our ignorance of this important local custom, and he dutifully slid his Solo cup toward The Authorities.

Next we were asked about the contents of the cooler on the ground. Yet Another Person at the Table said that we had a few beers in the box for after the race. The expressed implication of the discussion was that only the one person with the Solo cup dared to imbibe on the eve of the race. The whole and complete truth was that there were three glasses of rum, a glass of wine, and one more beer on the table, all of which either looked like iced tea or had been casually relocated behind bags of sopapillas. Oh, and two bottles of wine in a bag beside the table.

I'm able to righteously tell this story because ALS has taken away my taste for beer and wine, which means my cup actually had Diet Coke in it. And I was not involved in the negotiations with The Man because I sound like a Navajo, not a member of the Acoma Pueblo. [The foregoing is neither insensitive nor racist; to the contrary, it is almost perfectly descriptive. We discovered -- in an inappropriate manner, I have to admit -- that I have both the tonal quality and the articulative precision of an 85 year old Navajo man. We tested the hypothesis on the few Navajo phrases we could cobble together over enchiladas and contraband drinks. Too bad there isn't a Rosetta Stone for Navajo. I could be a Navajo rap artist.]

When a backup officer appeared, the conversation was focused on whether it would be acceptable to simply put the smuggled intoxicants into one of our vehicles, which, one of the People reasoned, are not Indian Country. This argument failed, but the charm behind it ultimately found a home, and The Heat was placated by the removal of approximately one half of the group's alcohol to our truck. Thus emboldened, we ate our meal, then retired to our hotel room, where the remainder of the alcohol was consumed as we prepared for the race.

On race morning, our task was simple, and the list was short:  hydrate, eat and poop. Our hotel room was no more than 200 meters from the start line.

We nevertheless missed the nice man with a watch say "go". As would be true all day, I was the problem. I had difficulty with one of the three items on the to-do list. Once the race got going -- well, once we got going -- I immediately had a difficulty. Hip abductors are the muscles that allow you to step sideways. On a bike, they work in opposition to the hip adductors -- the muscles that bring your feet together -- to keep your legs pumping straight up and down. Without healthy abductors, your knees would bang into the bike's main tube. The tandem doesn't have a bar between the riders' knees, so unhealthy hip abductors lead to knees banging together.

Guess what? Yep, my hip abductors are fading. I have been dealing with this in training by stretching my opposing muscles (the adductors) before each ride. But the race was already underway, so there was no time for that. In hindsight, the extra time would have been well-spent because I wound up with my knees smashing together every pedal stroke for the next 50 miles. On the right leg, the resulting angle of tracking means my right calf rubs against the derailleur and the chain with each rotation. By mile 15, this had opened up a nice gash on my calf.

Why not just stop and stretch? Did that. The problem is that once the pattern starts, about all that can be done is damage control. So at 15, we stopped to apply a protective cover to my leg.

At about 20 miles we were all together, including three more who joined us early this morning -- Pauline Esquivel Lucero, Michael Donovan, and our occasional tandem captain, Anna O'Connell. So we took a picture.

 

From there, the only obstacles were a big hill, wind, rain, and the smackdown battle royale of my dueling knees. The scenery was spectacular, and people of Acoma were delightful and supportive throughout the ride. You know, because the ones we encountered on the course had no idea we are wanted by the Pueblo for smuggling.

 

 

Days 1160-62, September 16-18, 2013. "Koo koo koo". "Kow koo K". "KKK" (I'm not making this up -- she actually had me say that out loud). Welcome to speech therapy.

From the beginning of this POS disease, I've heard that speech therapy for ALS patients consists of finding the right devices to speak for you when the time comes, and conserving the voice until then. With not much to lose, I have decided to buck that advice.

To do this, I found a speech therapist willing to ignore all she knows about ALS, and treat me like a stroke patient. The result? Too early to say, but we haven't had to clean my vocal cords up off the floor as we were warned.

Same theory and similar plan with physical therapy and occupational therapy and I have hired a personal trainer for work in the weight room.

This is all linked to my drug experiment I wrote about early last month. Chances are very long that I'm seeing anything other than a small placebo effect, but, once again, doing something feels better than doing jack other than watching Grey's Anatomy and my hands as they shrivel up.

The result? Too early to tell, but... (1) four fingers and one thumb that would not move a month ago now move one degree or another; (2) my leg press max has bumped up from 170 to 200; (3) this is totally subjective, but my ability to manage stuff in my mouth and to swallow has improved -- notably, I haven't had a choking incident in more than a month. Having written this without knocking on wood, of course, seals my fate to choke to death on a Rice Krispy, probably before you read this; and (4) again, completely not scientific, but I think the melon is becoming easier to hold up (if this is true, it could be on account of because my neck is getting stronger, or it might be due to the fact my brain is rotting and thereby lightening the load on my neck).

All this comes with a gigantic caveat or two: (1) before a month ago, I wasn't trying to get better at any of these things; (2) with ALS the siren's song of believing something has a reason to get better is intoxicating, which means the potential for a placebo effect is enormous; (3) this has not been tried on mice; (4) during the same time, my ability to walk (which I only try when someone is holding on) has continued to decline.

However I already consider the experiment a success because I've eaten more steak in the past month than in the past year, and, if someone moves my hand to the right spot, I have enough coordinated finger flexion strength that I can once again... Scratch my nuts!

Days 1159-1161, September 13-15, 2013. "In the dark, all cats are gray." In 1743, Benjamin Franklin wrote this in a letter to a friend extolling the many virtues he perceived in "becoming intimate" with older women. Another piece of wisdom contained in the manuscript was that older women are so "grateful" for the favor. While we will never know for sure, I feel there is a good chance Slick Benjamin, who was an obvious gift of the divine to the ladies(see figure 1), penned this classic whilst enjoying a sparked bowl of 18th Century medicinal herbs.

 Figure 1

Anyway, lest we miss the genius of his writing for being distracted by the short term folly of his politics if the letter ever made its way to the gentle hands of one of his female companions (of whatever age), I want to focus on the cats. In some contexts, two things that are truly substantively and qualitatively different, can appear to be the same. Thus, we turn to today's training ride. Three years into ALS, a bike ride is very different than it was before. But I leaned back on my headrest today and focused on just hammering along, taking in the same sights, smells and sounds I enjoyed hundreds of times when I didn't know ALS was cooking somewhere deep inside my brain. He It was oddly relaxing and peaceful. I can't wait to do it again.

If you look at them just right, all cats really are gray.

Days 1156-58, September 10-12, 2013. So we are getting ready for the Tour de Acoma coming up next weekend. Our training has been fairly simple. Hard, short rides on weekdays, and gradually longer rides on Saturdays. We have had three rides of 50 miles or more; Acoma is 50; ergo, we are ready. Jean and Dan will share time as captain of the tandem, each spending about half the ride on Dan's Italian steed.

On the topic of Italians, our nephew, Nick Pisano, will be riding his first 50 either during this week's Saturday training ride or at Acoma. There is some doubt about whether he will be able to receive sufficient nourishment by then, what with having served as the women's eye candy at his brother's wedding this weekend. On the topic of Irish people having too much to drink, I need to point out that, once I typed in the first seven words of this sentence, the computer predicted the next four words. Count the words carefully and then imagine how funny it would or would not be if the software is as knowledgeable about other stereotypes of national origin.

The technology available to ALS patients is a never-ending source of entertainment.

So Acoma will be a re-do of last year's event. However, we have made significant improvements to the gearing and the captains will be tag-teaming, so we should be markedly faster, even with another year of ALS on board. I'm trying to come up with a way to make the ride an apples-to-apples comparison, but I don't have a great idea about how to do so. After thinking about it for a while, I have come up with some reliable comparators. I will conclude that my ALS is going away if any of the following are true: (a) we go faster than last year.

I mean what the hell, right? Even if it's only for a day and not based on valid science (or any science, to be frank), a vacation from reality is pretty harmless, que no? Also, reality -- even with ALS -- is just not that bad. Since 2010, the year I was diagnosed, my law firm has seen the following befall five of our partners, all of whom were younger than 63:

(a) ALS; (b) cancer; (c) cancer; (d) brain tumor; (e) cancer.

Three of the five of us are gone. Each of the three had to endure brain surgery or wretching, gut-emptying, strength-sapping chemo. Meanwhile, I'm riding five days a week, and people call me names like "inspirational", "courageous", and "moronic" (think suicycle). We have gone to the Virgin Islands, Rome, Montreal, Prague, Georgia, Wisconsin and more. We have a house full of family and/or friends almost every night. People cook for us, bring flowers and play live music in our living room.

And I haven't had to work a day in nearly two years.

There is a pretty powerful argument here that we have been dealt a relatively decent hand.

There is also pretty good reason someone should have a careful look at what, in the name of Judas H. Priest is in the agua down at the Modrall Sperling law firm.

 

Susan Stockstill

1951-2013

Days 1151-55, September 5-9, 2013. Guess what we did today?

Hint no. 1:

Hint no. 2:

Hint no. 3:

All Abby wanted for her 17th birthday was to get matching tattoos. The two of us. Done. It's a sculpture we have in the backyard that represents Earth --specifically, all the places our family has traveled on it.

So much for sailing through airport security. And I guess I'll never be a federal judge.

Days 1149-1150, September 3-4, 2013. "What's this?"

It can sneak up on you when you have ALS. Things change a little bit every day, and, at some point you quit checking. We spent a relaxed weekend at the cabin in Angel Fire. Jimmy joined us Saturday after the Lobos' post-game training session (UNM beat Villanova 7-2 Friday night).

Monday morning Jimmy needed to be on the field by zero dark thirty, so he rolled out of the cabin about four hours before. He came to our room to say good-bye. With no moon out the window, it was dark as the inside of a cow when Jimmy went searching for my forehead to plant a kiss. His hand found my right shoulder. He examined it, then turned his hand 90 degrees and tried once again before asking "what's this?"

After Jimmy was out the door, I rolled to my left side, where my left arm could be pressed to the right and I could feel my right shoulder. If I didn't know better, I would have mistaken it for a knee, or possibly a large heel. There is no meat to it; only bone thin taut things that must be tendons or, perhaps, wires.

Where did the shoulder go and why can't my doctors fix it? It's a different jolt of reality when you come face-to-face with something ALS has done, as opposed to just understanding what it will do in the future.

Five years and two weeks ago, my left biceps began twitching. The rest of my body joined in beginning in late 2009. The biceps has, meanwhile, never stopped bouncing, jerking and flickering. Does it drive me nuts? No, but only because I have trained myself to think of these "fasciculations" as a free and perpetual form of Magic Fingers.

So ALS has been doing unto my body for nearly 10% of my life and it still surprises me? Hey, what's this? It looks like that pouch thing that hangs under a pelican's bill. Ohhhh... That's my triceps. And my biceps, I suppose.

 

Days -, August -, 2013. The Sandia Peak Omnium. My bike race team, Sport Systems MountainTop Cycling, sponsors a race every summer at the Sandia Peak Ski Area. The past three years, the event has been a fund-raiser for the ALS Association. I'm pretty sure this has something to do with the fact that I have ALS.
We decided to go up to the mountain to see the awards ceremony after a bike ride. Sometime late in the planning process, it occurred to me that we could just ride up to the race.
Dan Porto agreed to captain the tandem after a coin toss with Jean, which she lost four or five times before she just told Dan he had to do it. The ride from Cedar Crest to the ski area is a bit shy of seven miles, but, of great importance to the riders of 65 Pounds of Grinding Uphill Funk (the new name for the tandem, hereinafter "65 PGUF"), the road gains nearly 2,000 vertical feet in elevation over that distance.
The group for the ride was Dan, Paul Mohr, me, and our nephew Nick Pisano. Nick visited New Mexico last November and then again in June to help take care of me while Jean and her sisters were creating a rum shortage on the island of St. John (on this topic, Jean has asked me to correct a previous utterance to the effect that this suarez was nine days and nights, when it was actually only seven periods of 24 hours each -- I have now done that, though in fairness I must point out that the debauchery was free to run amok, and did in fact run amok, for two days in Atlanta before moving offshore). I digress. I was talking about Nick.
He decided to move to New Mexico, into Jimmy's room specifically. Nick had been in New Mexico's rarified air for less than a week when he agreed to give this a try, and he held up like a champ -- like a roadie, in fact.

     
The plan was for Dan to leave in his truck immediately upon our arrival at the ski area, but after our very hard effort to store potential energy in 65 PGUF, Dan couldn't bear to leave the unleashing of the energy to someone who had not earned the trip back down. One hour and ten minutes up; 17 minutes down. 
 

Days 1137-1138, August 22-23, 2013. The Anointing of the Sick. I don't know whether that's a Catholic thing or bigger. They do it at our church and Jean asked whether I wanted to go. I expected that I would roll up to the front of the church with a handful of old people with walkers or canes. The priest would put a blessed oil on my forehead and that would be the end of the anointment.

When the priest invited the "sick" to come forward, probably 1/3 of the congregation moved from their seats. As it turns out, all manner of suffering amounts to "sick" in our church. Just like in the real world.

Lots of suffering -- most of it, from the looks of our line of people at church -- is invisible. My situation is anything but invisible. In the silver lining department, I suppose that is a plus. Wherever I go people smile and offer to help (except the handful of people who are so uncomfortable seeing someone in my boat that they pretend not to see me with an urgency that suggests a condition like mine might be contracted through light rays). I have support coming from so many directions I don't even say "thank you" every time I receive an act of generosity.

Nope, having ALS doesn't give me a monopoly on suffering. In fact, from the looks of things at our church, I'd say that being over 50 is a nearly surefire path to some form of misery. Get a helmet.

Days 1135-1136, August 20-21, 2013. Many times during Jimmy's involvement in sports, I have watched him play a game and I have shook my head and thought what I had just seen was more impressive than the whole of my play at whatever level. Here's what I mean. If the game was baseball and Jimmy was 12 years old, I might say to myself "he did more in that game than I did in all of little league". The truth is you could pick almost any game he ever played right through high school and that would be true. It was really only his most lame performances of his career that would not qualify. I'm not making this up. I'm not even exaggerating.

Jimmy will redshirt this season. That means he will train as a member of the UNM Soccer team, but he will not use one of his four years of college athletic eligibility so long as he does not play in an actual game. He can play in exhibition matches. There was one of those last night, and Jimmy got 15 minutes of action.

He looked instantly at home in the Lobos goal. Goalkeepers tend to yell at their defense a lot. It is usually quite difficult to hear what they are saying, and, from the body language I have seen between keepers and their teammates, I have come to believe the things the keepers say carry the force of recommendations or requests. Anyway, whatever goalkeepers say, Jimmy was doing that and the other Lobos didn't seem to mind.

With about three minutes remaining in the game, I felt Jimmy had made no mistakes -- probably a perfect way to be able to describe a first appearance for your number 11 team. I actually thought through this: should I wish for the time to melt off the clock without a mistake from our boy, or wish for the opposition to get a good run at the Lobos and give Jimmy a chance to find out a little about where he fits in Division I?

I knew what I would hope if I were in his shoes. But I figured he would want that chance. Right now.

Near the two-minute mark, GCU turned the ball toward Jimmy in the midfield. Jimmy stood about six yards out. There were a couple of quick touches, then a missile headed toward Jimmy with a clever little bend on it, streaking to the top of the Lobos goal. Click here.

The game ended and Jimmy trotted to the Lobos sideline. He was met halfway by his coach who locked him in a in a bearhug.

Yep, in his first minutes in the goal for the Lobos, Jimmy has done more to impress than I did in four years on JMU's track. That YouTube clip showed you the goalkeeper's equivalent of a freshman strolling onto a football field and launching a 70 yard touchdown pass.

As parents, can we want anything more than to see our kids growing up smarter, better looking and nicer than us?

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Days 1133-1134, August 18-19, 2013. A portrait of myself is something I've always never wanted to have. My view is that they reach their highest and best use sitting on an easel right next to the casket. So I've been in no hurry to see my mug in oil.

Then Jeff Luque, who is an artist -- both with bike tools and a paint brush -- showed up for one of our evening rides.

After a 16 mile loop we rolled back into the front yard, where we tell lies about our mastery of the Universe and discuss equipment modifications that might extend the length of this party. The speed of a cycle at any given rate of pedal cadence is a function of the number of teeth on the front chain ring, the number of teeth on the rear gear sprocket, and the circumference of the rear tire. The tandem was delivered with a front big ring with 52 teeth. This did not produce enough speed. At about 19 mph, we would find ourselves spinning our feet at a ridiculous pace and going no faster. To address the problem, we bought a new big ring with 64 teeth.

About that time, I was beginning to have problems with fast cadences because my legs were becoming increasingly spastic, meaning that, as the speed of a voluntary movement increased, my body would fight against the movement to make it happen more slowly. For example, if I were to kick something annoying -- a cat, perhaps -- then the contraction of my quadriceps muscles, which would start my foot moving forward, would, through the magic of ALS, trigger an involuntary contraction of my hamstring muscles to counteract the voluntary attempt to launch the cat. This phenomenon, spasticity, also explains why I am at a high risk of falling. If you trip on the carpet, you correct your balance by stepping forward aggressively with the same foot. When I try this, my hamstrings fight my effort to step forward and I wind up face down on the floor.

How this plays out on the bike is not surprising, but is inconvenient. As I begin a downstroke with my right foot, my right quad engages. This is good. Immediately, in response, my right hamstrings fire to attempt to slow the downward force. This is bad. Meanwhile, not far away, in my left leg, a similar but opposite process is underway. As the right leg is downstroking, the left leg is on the upstroke. This is largely a hamstring-initiated thing, as the left hamstrings pull the pedal across the bottom of the pedaling circle and begin the movement of the pedal up. You have probably guessed what happens next (unless you studied at Virginia Tech). The quads fight against what the hamstrings are trying to do. As you repeat the sequences, what comes out the other end is a slower cadence.

Currently, my Happy Cadence is around 55 rpm. At that cadence, the tandem will go about 20 mph. At that cadence/speed, I am relaxed. Too relaxed. My legs want to push a heavier gear. My heart wants to go faster.

We need a bigger front chain ring.

We replaced the 64 with a 72-toothed monster last November. Beyond 80 teeth is the territory of custom work, but there is an off-the-shelf 80 available. Whether to go beyond 80 was the topic of our post-ride discussion the day Jeff rode with us.

At some point, Jeff explained how he needed something from his truck, and he returned with this:

 

No top hat, no suit, no dour and pensive expression on my face, and no farm implements, eye glasses or writing instruments in my hands. Instead, a big grin that came with putting on a Team USA jersey for the first time, and a reflection in my sunglasses faithfully reproduced by the artist, who could not have known it was Jean taking the picture Jeff used as his model for the painting.

We will happily find a place for it until they have to put it next to the thing. And it will look good there, too. Thanks, Jeff.

Days 1131-1132, August 16-17, 2013. The Cigar and Rye Ride. I'm not exactly sure where the idea came from, but it was instantly popular as a perfect way to send our friend Keith Bone off to his new assignment at corporate headquarters for General Mills in Minneapolis. The gang gathered at our house Wednesday evening and buzzed out the bike path, right past the General Mills Albuquerque plant so Keith could get one last whiff of cooking Count Chocula. We turned back at the Balloon Park, then ate a trough of enchiladas Tim Holm brought over from Duran's Station, along with cigars and rye whiskey (not me, man).

This is how roadies usually end their rides. Well, like we did, or at a yogurt bar (low fat).

Days 1127-30, August 12-15, 2013. A mostly empty nest. Jimmy is moving into his dorm room today at UNM after a 6am training session. We had a family dinner last night to send him off, and to usher Abby into her junior year at Burque High.

I woke up this morning grateful for UNM having brought Jimmy into the soccer team. Absent that, he would be getting on a plane sometime soon to head off to somewhere faraway and the next time we saw each other, he would spend the first few hours getting his arms around what I could no longer do, and trying to figure out how to decipher my updated/downgraded voice. Seeing him more frequently from his new place 5 minutes from home will spare both of us that pain. Plus, there is no kid heading off to college this Fall who is more stoked about his or her deal than Jimmy.

 

 Let's see: a nearly full academic scholarship, and a spot on a top-20 soccer team. Add to that he's going to school with his girlfriend of three years, and -- the kicker -- he gets to drive my Dodge Magnum. Yeah, the one with the Hemi.

Life is good for young James. I'm grateful I got to see him reach this moment.

Days 1117-26, August 2-11, 2013. So I started an experimental medication on the 9th. That's not exactly correct. It's more accurate to say I started an experiment with medication on the 9th. It is enough of an experiment, in fact, that I won't say what it is because someone might read about it on the blog, try it, die, and then sue me. My threshold for what is worth shot has become very low. The thinking behind that is something like so: if I do nothing, ALS is definitely going to kill me; ergo, anything that probably won't kick my bucket today that someone who went to medical school thinks might help is a reasonable plan.

What I'm doing is not the important thing; what is important is that I'm doing something. Something is better than nothing.

Here is a partial list of the things I've tried that have all Failed: methyl cobalamine; dexpramipexole; acyclovir; pyridostigmine; riluzole; electronic stimulation of my tongue; a wild variety of supplements; and cheetah blood.

I have studied countless clinical trials, tried (without success) to get into several of them, and I have chronicled the demise of my various functional abilities in this blog and on several spreadsheets.

Each new experiment brings a new opportunity to identify my baseline condition against which the future will be measured to see whether the experiment has any merit.

This time, I recorded my weight, blood pressure, pulse, maximum capabilities in terms of certain weight exercises, and movement of various body parts. We videotaped some activities, including my recitation of a verse of "Rapper's Delight" to document my voice (the verse about going to a friend's house to eat and the food just ain't no good, I mean the macaroni's soggy, the peas all mushed and the chicken tastes like wood).

The only thing that popped up in this process that was interesting is that I have not lost any strength in my quads, glutes or calves in about a year. Meanwhile, I can no longer walk without assistance, my upper body has become weaker than the force of gravity, and it's hard to chew an avocado (and not for the reason that you're thinking).

Why the quads, calves and butt? An old refrain: use it or lose it. It's no coincidence that the muscles that are holding up best are the keys to cycling. Yet more evidence in my nose-thumbing at the standard of care when it comes to exercise and ALS.

Day 1116, August 1, 2013. One mile for each year. While we were in Angel Fire, our friend Michael Donovan, who shares a birthday with me, decided we should ride a mile for each year. With me as a no-show, that left Michael (and Damian Calvert, and sometimes Mason Calvert to ride the 103 miles -- 50 for Michael, and 53 for me).

Days 1110-1115, July 26-31, 2013. The birthday party that just kept going. While we were growing up, I could always count on my best friend, Trip Sommers, for a great time on my birthday (and certain other special days, including without limitation, the month of February).

Fun fact about the software in my fancy eye tracking system: as I type, it predicts what word comes next in the context of the several words most recently entered in the document. Today I wrote an email to someone who I respect deeply and am fortunate to count among my friends. He has been practicing law since about the time I was born, and most lawyers in New Mexico would identify him or one of my former partners as the best civil defense lawyer in the State. It is time for both Bruce Hall and Ken Harrigan to retire to give others a shot at the title. More democratic; less oligarchical. Anyway, as I was saying, I was responding to an email from Bruce, who for some reason I cannot fathom, was under the impression I am a fan of Satan's Team -- the New York Yankees. Anxious to correct this libelous misapprehension ASAP, I was paying particularly close attention to the time-saving word prediction feature of my Dynavox and noted the following extremely high level of artificial intelligence possessed by this wonderful machine: when I typed in two phrases -- "I despise the" and "my loathing of the", the first word predicted by the machine was "Yankees". What will they think of next?

But I digress. So Trip Sommers is now a high ranking official in the Drug Enforcement Administration in Atlanta. His wife, Divah, was a classmate of ours, both at Chantilly High and at James Madison University. Their kids, Katie and Michael, are a teacher and a law student, respectively. The whole family, including Katie's husband Ryan, met us (plus Mom, Aunt Bea, Steve & Lorrie and Maureen) at the cabin in Angel Fire for a long weekend of festivities and loads of storytelling.

Good for the soul.

   

 

 


 

Days 1108-09, July 24-25, 2013. ALS is not the same in any two people. You hear that a lot as an ALS patient, but I still compare myself to others, especially John Dunbar. John passed away last week. We have been almost stride for stride since we met a bit over two years ago. The only significant difference (and it's a big one) is John's lungs began fading quickly over a year ago.

At that time, John was still riding his recumbent tandem -- lots of miles -- and his legs stayed strong even as we both wound up taking delivery of power wheelchairs the same week.

Meanwhile, I was training to race the suicycle. When I trained for bike racing back in the day, I was pretty geeky about my program. I probably had only one day a week that the ride didn't address a specific part of my racing profile. That meant my rides had loads of variation from day to day.

The suicycle training program was very different. Every time I got on the thing until about June I rode a 15 or 20km time trial. Balls out, the whole way every time. On the days I was on the tandem, I kept track of my data with a high level of attention. I was always on the lookout for the slightest sign that ALS was slowing me down. Eventually, of course, it got me on the suicycle, but I remain convinced the real culprit was the effect of my inability to control the machine rather than a decline in my ability to power the thing. The former problem resided in my arms, the latter would be my legs. My evidence for the distinction has been that the times on the tandem are still level or getting faster. True, there are two people on a tandem, but I've factored that in and the numbers still look good.

The big picture? I think the intensity of the cycling is responsible for my respiratory function staying relatively high. How long will that hold?

Many times in the blogs I have quoted Buddha: "Suffering comes from resisting what is". Turns out that wasn't Buddha. But there is a similar teaching in Buddhism. And in a good number of other theologies and philosophical writings. Since its origin is uncertain (and it is grammatically incorrect because the sentence ends with the preposition "it" -- properly structuring the words would be quite easy, e.g. "suffering comes from resisting what is, bitch"), I have decided to modify it to make it sound less like something Yoda might say, correct the grammar, and clarify the message. Thus, I may be quoted as having written "suffering comes from resisting the truth".

In this way, denial is the enemy of peace of mind. [you can also quote me on that, because I just made that mofo up... bitch] A few months ago, I wrote about my fantasy that ALS would just go away, and that is a fun thought, but giving it too much airtime is dangerous. Given that nobody has ever been cured of ALS in the history of ever, isn't it a better idea to accept that fact as applicable to me, be realistic about what I have left, and live each day accordingly?

Well, here goes. Every region of the body that ALS targets is compromised in my case. I have yet to suffer from shortness of breath, but the numbers don't lie, that's coming. Tomorrow is my 53rd birthday. I'm going to say the likelihood of having a 54th is about 50-50, and a 55th is not likely.

There, I said it (bitch). So, how should we spend today? How long will my time trial-enhanced diaphragm hold out keeping me comfy? No idea about the last one, but I'm not about to slow down. In fact, it's about time for bike shoes...

Every day, then: 1) think about the finite time left; 2) decide how to use this day; and 3) be grateful for the heads-up.

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Days 1100-07, July 16-23, 2013. So John Dunbar, like everyone before him, died before an effective treatment could be brought to market. I have wasted little time or energy being angry about ALS or my unfortunate luck in snagging a piece of this almost uniquely devastating disease (while ALS sucks big camel johnsons, it's really not the worst draw -- to wit: Huntington's disease, which is pretty much ALS plus dementia). But the availability of experimental treatment options is one that makes my blood sizzle.

Start with the fact that, if you get ALS, it will kill you unless something gets you faster. Stephen Hawking is a high profile red herring. Hawking was diagnosed in 1963. He has a motor neuron disease, but it ain't ALS. People with ALS don't live 50 years after diagnosis. Hawking himself acknowledged as much in an interview last year. So let's forget about a life with a plateaued disease and computers running your multi-faceted empire. That's just not the way ALS works.

What other diseases of mid-life have such a hopeless prognosis? Pancreatic cancer comes to mind, but I cannot come up with a long list.

Here is the drug development pipeline in a nutshell. Step 1: research scientist comes up with a theory -- let's say "di-hydrogen oxide relieves constipation". He or she finds grad students to help test the theory. Grad students find plugged up mice (or they plug them up manually), and give them di-hydrogen oxide. Well, half of them get di-hydrogen oxide, while the other half get placebo. Did di-hydrogen oxide help more than placebo? The grad students write a paper discussing same. If it is well-written, the scientist adds his or her name to the paper (first in the list of authors). If the paper is crap, the scientist gives appropriate feedback (a grade of "B" because grad students always get A's or B's), then the scientist tries again the next semester. Step 1 takes a year or more.

Step 2: (assuming the paper was not crap, and assuming the test revealed that mice on di-hydrogen oxide found blissful relief from di-hydrogen oxide) the scientist looks for an appropriate conference on constipation at which to present the results. At the same time, the scientist hunts for a learned and peer-reviewed journal to publish the paper, because this will get his or her department head off his or her ass for not having published any research since word of the affair with the undergrad research assistant got out over a year ago. Step 2 takes about a year.

Step 3: find a drug company willing to pay for human testing. Step 3 can take years.

Step 4: Phase I clinical trial. This is a safety investigation. Efficacy will be observed but is not established by a Phase I. FDA has to approve the plan, participants must be recruited, and the plan has to be executed. Results need to be analyzed and published. Depending on the time needed to evaluate safety in patient use, Step 4 might run from 6 months to years.

Step 5: (assuming di-hydrogen oxide didn't kill anyone) more people in a study that still primarily addresses safety, but does give more information about safety. This Phase II study will examine different doses, looking for adverse events and effectiveness. Often, Phase II studies raise more questions than they answer. This means more Phase II studies may be necessary. Phase II can easily take years, and almost always takes at least a year.

Step 6: (if di-hydrogen oxide still isn't killing people, and seems to be unclogging them better than placebo) Phase III testing. This will be a big study with lots of people, and probably several dose options. It will also last a long time if the drug is one that may be taken over a long period of time. Publication, presentations, and an application to FDA for approval to market the drug at a minimum. Phase III is often well over a year.

If it all went well, di-hydrogen oxide is on the market only about six years after the first mouse obtained glorious relief. In the meantime, millions of humans were suffering from constipation with access to only less effective treatments. Is this OK? That is an ethics question that depends on an examination of the risk-benefit factors.

In our example, constipation is a pain in the ass (oh, yes it is) but is a killer only in extreme circumstances, and there are treatments on the market. So the level of risk we should be willing to tolerate prior to accumulating solid proof of safety and efficacy will be relatively low.

Now let's talk ALS. If you get it, you are going to die. So when experimental treatments are showing promise in the context of ALS, we will have more tolerance for risk. Right? Wrong. The rules (with minor exceptions) are the same for a drug that might eradicate cancer as for one that might help grow longer eyelashes.

That said, there is a process that can be utilized to allow "compassionate use" of a drug that is in the pipeline. To do this requires the cooperation of FDA and the manufacturer. And guess which one of them is usually the turd in the punch bowl? Hint:not FDA.

Why wouldn't a manufacturer jump at the chance to increase the use of the drug sooner? The trial process essentially allows the sponsor to hand pick the patients. This, of course, maximizes the likelihood of positive results. The cost, in the context of ALS, will be about 5,000 lives per year while the cure is in the pipeline. A necessary cost? Let's look at a real life example.

A company called NeuralStem has developed a stem cell therapy that was stalled by George W. The Phase I took place and at Emory University in Atlanta. More than half of the patients responded to very low dose injections of stem cells into their spines. By "responded to" I mean they have had no progression of the disease in more than two years since the injections. One patient has actually seen improved function. Here is how the principal investigator describes Mr. Harada on the University of Michigan's website:

Ted Harada, a 40-year-old man diagnosed with ALS, who received stem cell implantations to his spinal cord in two separate surgeries as part of the first-ever FDA-approved trial of a stem cell therapy for ALS, talked last week with Crain’s Detroit business reporter Tom Henderson.  Harada said he’s still feeling the positive effects he attributes to his second surgery, which took place last August.

“I’ve been doing great and feeling great.” Harada told Henderson. “Just now, the left leg showed a little bit of weakness returning, but I’m still so much better than I was before the surgeries. It’s the first time, since August, they’ve noticed any slight weakness.

“It’s clear from the data that the injections reversed my symptoms and slowed down the progression of the disease. I’ve received a blessing. I almost forget I have ALS. I don’t have the constant reminder of having to use the canes. Now, I don’t think about ALS every day. Every couple of days something happens and I think, `Oh, yeah, I have ALS.’ ”

Taubman Institute Director Dr. Eva Feldman received FDA approval in April to move the trial to Phase II, which will study efficacy as well as safety.  Patient recruitment has not yet started for that phase of the trial.

No therapy anywhere ever has either stopped or reversed ALS symptoms in even a single patient before this trial. Moreover, the trial revealed no adverse events of significance. Plug this into a risk: benefit computer and I come up with a risk factor of zero,and a benefit factor of infinity. But please check my math.

So when can the rest of us try it? Phase II will enroll 18 patients...

That curdles my milk.    

Days 1094-99, July 10-15, 2013. John Dunbar served his country. He was a husband. He was an engineer. He loved mountain biking and sought out adventure. John was diagnosed with ALS in April 2010, just a few months before me. He attempted Leadville with me in 2011. He beat me the only time we raced our powered wheelchairs. John passed away on Friday. ALS sucks.

Days 1084 -1093, June 30- July 9, 2013. Wisconsin. Get some coffee, it was a busy week.

Part I: The North Woods. Jean, Jimmy and I flew to Minneapolis on Friday, where John, Dan and Paul picked us up. They looked surprisingly bright-eyed, what with having driven 21 hours hauling the tandem, the suicycle, and the rest of our stuff. Three hours later, we were at a fish fry near John's family cabin.

We checked in to a lodge in nearby Seeley, Wisconsin and woke up to wild rice and blueberry pancakes right at the crack of 11 am.

   

After a 25-ish mile ride over rolling Wisconsin roads, we gathered up for steak grilled for us by Cindy's crew at the Sawmill Saloon. Jean made lots of friends at the Sawmill, and, when the rest of us were ready to head for bed, Jimmy shouldered his mom and carried her back to the lodge.

Sunday morning (you know, after the blueberry pancakes), we drove to Bayfield, a charming Lake Superior port town. We rolled onto a waiting ferry to Madeline Island, where we (when I say "we" in a context other than actual pedaling of a cycle, I generally mean John, Dan, Paul and/or Jimmy) unloaded the bikes and toured the narrow island. For the first time, Jimmy was my captain on the tandem, and we chewed up the miles happily, stopping only briefly (until mosquitoes began to inflict damage) at the far end of the island.

   

Back to the lodge for more fabulous food, especially the deep fried, buttered cheese curds. After chain-eating four baskets of the Wisconsin delicacies, along with several pizzas, we headed for yet another mosquito-dodging trip to the lodge.

We gave some serious thought to canceling the next leg of the trip, but decided the 20 or so people we were meeting in Madison might not think too much of another five hours of driving even if they would be joining us in such a beautiful place. Also, Cindy (the owner of the Sawmill) had to be getting tired of us showing up for breakfast at 10:59 every morning for breakfast that ends at 11.

So "we" (here, I mean John) drove to Madison and dropped Jimmy off at the airport so he could head home to begin training with his UNM Soccer Lobos.

Part II: USA Cycling's Para Cycling Nationals.

After more cheese curds, we got ready for the course surveillance and, hopefully, a pre-ride. Where I left off last week was explaining that it appeared my climbing ability was limited to about 3% grade. The course profiles available online showed the nastiest hill with different grades -- 2% and 4%, respectively. Needless to say, I was looking forward to seeing it for myself.

Tuesday afternoon we headed to the course and drove a lap. The news was not good. There were two scary hills, both easily over 3%. We had picked up my dad at the airport on the way to the course, so we had plenty of hands available to do all the prep work. But would the ride be a very short one, or would I be able to make the length of the course? The suspense was killing me.

The first hill -- the smaller one -- was a slow grind, but I made it with little difficulty. Before I reached the top, however, I was fresh out of gears, which worried me a bit, because the next climb was considerably longer and steeper.

John and Dan were riding beside me, so I wasn't worried that I would just stop, roll backwards and smash into the Expedition behind. But a lot of people were in or on their way to Madison to see me ride, and I was really hoping I wouldn't have to say something like "yeaaah, well I discovered I can't climb that hill". To which they would respond, incredulously, "what hill -- you mean you can't climb THAT hill?!"

I tried not to look at it as we approached, but there it was staring at me like an angry linebacker. We started up,and I pretty quickly was out of gears. My Garmin reported 5% for the grade. That was good news and bad. On the one hand, it meant I could still climb 5%, but on the other hand, I was already playing above the rim, and still couldn't see the top. I was completely focused on maintaining a regular cadence as the climb continued, even after I ran out of easier gears. After what seemed like a very long time, I got to a point where I could start adding gears -- sweet! I would be able to ride the course!

As the afternoon wore on, John, Dan and I stopped several times to make some adjustments in the brakes and shifters that had the bike responding better to me than it has in many months.

The next day would be an actual rest day, and I would be able to spend some time with our dear friend Andy Kain, and one of Jean's sisters and her husband Eddie The Plumber (his actual name according to Joanne). They would all be arriving the next day.

On race day, with a few exceptions, things went as planned. I had heard that my two fellow T-1 competitors would not be riding, which meant that all I needed to do to win a second consecutive national TT title was exactly what I had done during the preride.

These pictures show most of the steps involved in getting me on the suicycle. It's a process that has steadily become more complicated (and dangerous) over the 15 months I have been on that thing.

   

   

  

The race began as planned. The shifting and braking were smooth. I crested the second hill without difficulty at 2.1 km, and quite suddenly everything turned to dog poop. I couldn't hold my head up as I descended from the high point. My field of vision was limited to an area from my feet to the front wheel. As I rolled down the hill, braking aggressively, my balance was clearly off. I had to get forward vision or it would be only a matter of time -- and not much of it -- before I hit the deck. I discovered that, if I could lean left, then pull my shoulders back quickly, my noggin would follow, if only momentarily. The problem with this, aside from it being a brief and temporary fix, was that my head would only come up high enough for me to see just over my glasses. My prescription glasses. That meant my best moments of vision over the remaining 6 km would be sort of sideways and definitely out of focus.

I came up with another approach. With my head hanging down I could readily make out the yellow center line, so, if I kept my wheels just right of the line, I could maintain a straight line. I took this a bit too far, however, at the halfway point where I needed to turn the bike around. The suicycle needs a whole two-lane road to pull a 180, but guess where I was? Yep, youbetcha, I was hugging the yellow. I gave it my best half-focused and very disoriented effort and wound up in the gravel on the far shoulder. A race official got me back on the road. I don't know what types of assistance lead to a DQ, but I figured he wouldn't help me out without being asked and then throw a penalty flag.

Once I was homeward bound, things did not improve. I was back to my yellow line, working my way to the finish, when I heard the first whistles from Team Oso High. I pulled off the road, where Paul helped adjust my head holder-upper to give me more support. This helped briefly, and then I saw Andy and received another adjustment. Again, this was only temporarily helpful, perhaps because my neck was done for the day, but it lasted long enough to let me see some of the difficult final descent. I crept toward the finish, l listened to the announcer tell of my impending completion of the race. After he covered my name, hometown, and every race in my amateur career, some of my better training rides, and my most significant home improvement projects, there was an awkward pause while I ground out the final crank turns needed to get me over the line.

 

I coasted to a barrier fence where I lifted my head long enough to see one familiar face -- National Team Coach Mike Durner, without whose help I would never have pulled on a Team USA jersey. Or, more accurately, stood there while Jean pulled it on me.

As usual, John and Dan showed up at the right moment (right before my head would have fallen right to the pavement this time). They held up my melon and jogged me back to the truck.

My time for the 9 km course was a comically slow 57 minutes. That is a little more than 20 minutes slower than my fastest 10 km RUN. Please read that sentence one more time.

From there we headed to the bar where the para-cycling awards would be distributed.

We had a room reserved where we would celebrate the retirement of the suicycle with the 20 or so Bannons who made the trip was from Peoria, Dad, John, Andy, Dan, Paul, the Freeman family, and our friends from the para-cycling world.

  

 

It was humbling to hear paralympians Greta Neimanas, Clark Rachafal and Sam Kavanaugh and Greg Miller talk about our time together over the last year. I think they must not have realized that only a few short hours before, it had taken me almost an hour to ride 9 kilometers. Good thing I was on a trike -- a bike might just tip over at that speed.

Here's a little secret about the race. You've seen it a dozen times on SportsCenter. The outfielder is drifting back for a routine fly ball. He catches a cleat in the grass, tumbles ass over tea kettle, pops back up just as the ball caroms off his shoulder, then his head, and settles softly into his glove. And so he winds up with a Top 10 Play by making something easy look impossible.

During the evening after the race, I heard people describe my ride as "inspirational", "determined", the product of "sheer willpower", and Coach Durner even thanked me for "doing something [I] shouldn't have been able to do". While I was and will always be grateful for the words, the truth is that, like the outfielder on Sportscenter, I nearly snatched defeat from the jaws of victory by forgetting to have someone tighten the belt that anchors my head holder-upper before I started my race. So I was too focused on smiling for the photo-ops, and I neglected to activate the oldest piece of adaptive equipment in my arsenal. The head holder-upper has been in use since before Leadville in 2011. D'oh.

So, that's it for the para-cycling experience. When I sat at dinner with Jean, Jimmy and Abby in January of last year and told them about my proposal, I had a pretty good idea where the bike part of the whole thing might lead, but it never occurred to me that any part of it would happen in 2013. And, like a famous dirtbag and scoundrel, I failed to appreciate that the most important pieces would be "not about the bike". The real beauty to the experience was the people who made it possible and/or more fun.

Thank you all.

Jean: Everything. Especially your love. Especially for not telling someone in some ER to pull the plug.

John Blueher, Dan Porto, Paul:Mohr: Teammates, mechanics, inventors and so many other roles.

Abby: Inventing and building the original grip substitute device.

Jimmy: Grip and shifter revisions, tubeless tire maintenance, weekly list of adjustments, design and construction of the reverse mount front hydraulic brake lever that put an end to endos.

Nick: Inventing and building the elephant ear shifter that allowed my knees to distinguish between big gears and little gears.

Andy Kain: Sherpa in Montreal, mechanic, keeping my head from falling off in Madison.

Chris Dineen: Inventing and building the head holder-upper.

Maureen Bannon: Sherpa in Rome, mechanic (!)

Mom, Dad, Aunt Bea, Aunt Barb: Support and mechanics in Augusta and Madison, and at the Olympic Training Center (Dad).

Steven Peace: Introducing me to the suicycle, giving me a steering damper made by Italian trolls, constantly encouraging and supporting me (except after the big crash in January when he encouraged me to take up video gaming).

Geoff at Trykit: Making my axle in time for me to get to Montreal where I qualified for the US National Team on what I now know to be the fastest course in the world.

Andy Porto: Fixing my axle after the "Guardrail Incident".

Damian Calvert and Michael Donovan: Training rides in 2012.

Sport Sytems (Duane, the Davids, Zack and Phil): Major mechanical work and great ideas.

Sport Sytems Mountaintop Cycling: Support of every kind every step of the way.

Brad at ZIPP:Hooking me up with a sweet 404/808 Firecrest wheel set that made a cool purring sound when I was fast.

Pam Fernandes and the OTC staff (except the tool who was famously quoted screaming at a group of disabled cyclists -- including me -- "what's wrong with you people?!", to which one quick thinker responded "where shall we start?"): Teaching the crash course on para-cycling in one nearly perfect week at the Center in Colorado Springs.

Coach Mike Durner: Getting me in the World Cup in Italy before he had ever seen me turn a pedal, putting me in a stars and stripes jersey for the World Cup final in Canada.

Team USA (particularly Greta Niemanas, Clark Rachafal, Dave Swanson, Ryan Boyle, Allyson Jones, Sam Kavanaugh, Steve Peace, Muffy Davis): Welcoming me to the team immediately and making the events in Rome, Augusta, Baie-Comeau and Madison that much more fun.

Whoever at the US Anti-Doping Agency selected me for out - of - competition testing in November, giving me such great material for the blog.

So I will submit my retirement papers to the USOC and USADA in the next couple of weeks. Just like Lance Armstrong did a few years back. Unlike Lance, however, that won't open the door to a doping program targeting a comeback. If only it were that easy...

Click here to sign or see our guestbook.

Days 1074-83, June 20-29, 2013. So we are running out of ideas for making the suicycle go and stop. This week's test rides were less than remarkably successful. Safety was not the issue. Turns out, it's very safe when it is going as fast as I can make it go.

We just don't have a good way to get power out of my legs and onto the pedals. So when I'm riding, my heart rate hardly elevates. What's happening? Well, I think grip is the problem. Imagine riding a bicycle where you maintained control over steering by having a rope wrapped around your wrist, with the other end looped over the handle bar, but your hands weren't holding the grips on the bars. Don't tell anyone at USA Cycling, but that is sort of what we have going on. So when I apply power, the first thing that happens is the wrist things stretch as far as they can. This is not much of a pull on my shoulders when I'm on a flat surface, but going uphill, it feels like I'm going to hear that suck-pop sound that a chicken thigh makes when you pull the leg off.

At a certain grade of climbing... The suicycle stops. How will this play out in Madison? If you have a background in physics, you may know without me explaining. For the rest of you, and for Virginia Tech graduate students in the physics department, here is the simple story. If I find myself on a hill with a grade of somewhere around 3%, the suicycle. Will stop.

If this happens, other riders will hurl insults at me as they go by, and after they have all gone by, I will turn around and ride back to the start. Unless... I had descended a 3% grade on the way out, in which case I will stop on the way up that hill. In this manner, I will be forever stuck between these two hills unless someone rescues me.

It would be prudent to find out about the gradient of the climbs in advance, no? Yes. And I have done that. There are two published profiles of the course. One shows the steepest climb at 2%. The other shows the steepest climb -- the same climb -- at 4%.

 

We have decided to go see for ourselves.

 

Days 1064-73, June 10-19, 2013. The Flying Couch.

Anna O'Connell is a financial adviser (ours, actually). She is also a game-for anything athlete. Several weeks ago, we took a spin around the park on the tandem. She brought dinner to us on Friday because she and her family are so nice and didn't want us to go hungry while Jean and her sisters are enjoying a rum-saturated ten day stay on St. John.

I asked if she would be willing to captain the tandem on Sunday. She was so excited, I felt certain she had not understood the question. So I asked again and she was in.

How shall I say this? There are some people who are taller than Anna. By the time I got outside to load into the tandem, every cushion and pillow we own was in the driveway, and there was a serious project underway. The goal of this undertaking: making Anna's feet reach the pedals of the tandem. The winning combination was cushions from a recliner on the back porch, a cushion from my living room recliner, and a pillow that was definitely designed to help someone recover from surgery on the lumbar spine or a joint replacement.

The visual effect: The Flying Couch. And off we went with a Father's Day entourage that included John's son,Clayton, and Jimmy.

Days 1057-63, June 3-9, 2013. The Oso High Mountain Bike Race.

A good time was had by all. The only problem was that more people didn't have a good time. Angel Fire took over the promotion of the race, and they insisted on making it part of a busy weekend of downhill mountain bike races that were already planned. Problems were four: 1) the date conflicted with a big mountain bike race in Vail; 2) the date conflicted with a big road bike race in Los Alamos; 3) Angel Fire forgot to advertise; and 4) Oso High is a cross-country event. Cross-country riders have about as much in common with downhillers as milers have with shot putters. They can ride the same bus, but there's no synergy in the mix. And, like the shot putters, the downhillers are responsible for the empty Big Mac boxes and most of the Jack Daniels bottles.

All of this is to say the Oso High fields were small, though fiercely competitive. Speaking of small, ten year-old Luke Mather was my hero. He completed the Cat 3 course in about 90 minutes. The route is four miles and includes 3 uphill sections I never negotiated cleanly when I was a Cat 1. The one mile downhill is nothing short of terrifying - tight twisted single track with trees slapping at you, rocks in unfortunate spots and ruts as deep as Luke waiting to swallow you up. Luke finished because he "kept thinking about Doug" while he was out there. I wish I could have been out there with you, Luke. The mountain EMT crew gave Luke's dad, Geoff, a "father of the year" recognition for sending Luke out on the course. I'm with Geoff, though, kids learn valuable lessons from horrible parent-mediated experiences. I would never have become the skier I was if my dad hadn't left me to ski "Organgrinder" on my own when I was Luke's age. Take it from me, Luke, you'll never forget Sunday's Oso High race!

Oso High in pictures!

  

 

 

Thanks for your support that helped us raise over $45,000 for the ALS Association!!

Days -, May - June 2, 2013. Nut cutting time on Nationals. Here's the scoop. USA Cycling's Para-Cycling Nationals is July 3-7 in Madison, Wisconsin. The time trial event is also serving as the selection event for this summer's UCI World Championships in Canada. The USA team will be the eight men and eight women who beat the national team standard for their class by the greatest margins. I will not be one of them. My goals for the event are more modest: 1) no body bag or ambulance exit from the race course; 2) not be the cause of a yellow flag delay in the race; 3) no crash; 4) qualify for the issuance of an official finish time; 5) have fun; 6) look cool; 7) win. In that order.

The keys to all of the above are the same -- smart bike modifications and controlling the increasingly pesky tremors in my legs. Today we are talking about the bike.

Problems: My hands are damned near useless. I have very little grip strength -- can't hold a tennis ball. My index fingers are actually paralyzed, as are my thumbs. My arms are very weak -- when I lay flat on my back with my arms at my sides, I can lift my hands to vertical (with my elbows still on the bed) if and only if I turn my palms up first. That is my only remaining measure of biceps strength. When I am standing with my hands at my sides, I can move them forward, to the sides or back about two inches. This limitation on a victorious fist pump is a real problem for a bike racer. My neck is not strong enough to hold up my head if I'm leaning forward. My legs shake like I'm standing on a paint mixer. That's about it.

Bike modifications completed or in the works: 1) Hydraulic front brake with the lever facing me. This is necessary on account of because my hands can't squeeze the brake levers but they can push. Hydraulic? Because this setup only works on the front wheel, so I need lots of stopping power from my one brake. 2) Grip assist devices.

These keep my hands from flying off the grips when I hit a dangerous road hazard such as a stripe painted on the asphalt or an ant. 3) Rear shifters. Electronic, you bet, but these puppies are the tiny little buttons near my palms that require only a light bump from my hands. 4) Steering dampers.

These find their utility in keeping the bike going more straight when my linguini-like upper extremities are not sufficient. I have two different steering dampers. The first was a gift from my friend and National teammate Steve Peace. It was made by Italians with a very short to-do list. The second is an expired bike inner tube. This is the one that works at the industrial strength I need. 5) The Head Keeper-Upper. This slick design provides support and flexibility by linking the back of my head to a belt at my waist with a bungee cord. When it was invented two years ago as I prepared for Leadville, it was a long bungee providing modest melon support. Over time we have reduced the length to get a bigger boost for my noggin, which is obviously getting heavier as I get smarter. 6) Front Shifter.

This is the newest innovative development for the suicycle. I can't activate the levers with my hands, so we are trying to give the job to my left knee. 7) The Sexy Socks. Everyone will be wearing these. Right after Hell freezes over. When my ankles extend beyond a certain point, an ALS present kicks in -- hyper reflexes that cause my legs to tremor violently. This happens once with every half stroke of the pedals. The sexy socks limit the extension of the ankles, thereby reducing the "clonus" reflexes reflex. Bam. Genius.

If any one of these systems fails on race day, I don't finish. Best case, I get picked up by a race official with donuts in his car. Worst case would be worse than no donuts.

The competition itself is way down on the priority list, but here is how it goes. I will be competing against the only other T-1 in the USA. His story is more fun than mine. He is getting better after a spinal cord injury. Jay is also much younger than me, so if he beats me, I will have that excuse working for me. I reserve the right to come up with more excuses as the event draws nearer.

Days 1043-51, May 20-28, 2013

  

A Travel Guide to New York City for People with ALS:

So we took a week long family vacation to the Big Apple. I could tell the story of the trip - it would be entertaining because we had Jimmy for a few days, both kids for a few days, and Abby for a few days, but you found this under ALS blogs, so I'm going to stay on topic, hmmkay?

Getting There. Pray for your wheelchair. And have the biggest person in your party give every baggage handler an intimidating stinkeye.

Getting Around. This is an excellent adventure.

Cabs. There are many accessible cabs, but they are not limited to serving people with disabilities, so you are in Darwinian competition with the rest of the travelling public. Good luck with that.

The New York Subway. In theory and on paper, the subway is accessible. The subway maps have an icon of a little person in a wheelchair next to each stop that has an elevator. This means you have to do some planning or you can find yourself stranded in an exit area with only stairwell access. About 20% of the stops have elevators. To make this even more exciting, at any point in time, about 50% of the elevators are out of service. And to further jack up the nervous system, this changes during the day for no apparent reason. In this manner, we boarded the subway at Times Square to go see the Mets suck (they didn't disappoint). Three short hours later, we returned to Times Square (same train, same station) and found the elevator we had used to come down to the tracks was out of service. Trapped. We had to take a train to Grand Central Station and walk the two miles back to our hotel. According to the Metropolitan Transit Authority website, on any given trip, a person who uses a wheelchair has a 100% chance of finding 50% of the needed elevators out of service about 76% of the time.

There is also the matter of the gap. There is a gap between a train and the loading platform. This is necessary and good. The gap will vary from place to place on a platform -- sometimes narrow, sometimes wide, sometimes up, sometimes down. And sometimes up and wide. We discovered this on our first platform, but we also observed that every platform has a handicapped loading area. Perhaps they have a little gap-spanning ramp in these locations? Nope. As far as we could tell, the only purpose for the handicapped loading area is to make it easier for the people from the morgue to find the people who don't clear the gap. The gap technique we used with success was to line up the chair straight on, close my eyes tight, and put the hammer down while Jimmy ran interference.

The Streets of New York City. The best way to navigate the City is the sidewalks. They are massively crowded but people are polite (or deathly afraid of a 350 pound chair with a distracted driver). There are, however, some hazards. Many of the curb cuts appear to have been carefully sculpted by drunk jackhammer operators with union grievances. The biggest street surprise, though, is the northwest corner of 57th and 7th, which has no curb cut at all. Every other corner we encountered in Manhattan had two cuts, but this one had none. And it's hard to imagine why. The intersection sits two blocks from Central Park, two blocks from Broadway, and five blocks from Times Square. The City people know about this corner. The last of the dozen or so times we went through this corner, I decided to take a shot at ramming the short curb to pop up on the sidewalk. A very large man saw the setup, stepped over and grabbed the chair with one hand, and up we went. And then he vanished. Abby and I stared at each other for a moment. The chair really weighs 350.

Things to Do. The Empire State Building is number one. A wheelchair means you don't wait in any lines anywhere. We arrived at about sunset. There were long lines for everything. We were whisked to the top in about as much time as it takes the night security guy when the building is empty.

The Mets. If you have ALS, they will lose if you go see them. But don't think you're special. They lose every night.

Central Park. Memorial Day was the sort of day they have in San Diego all year. In New York, such a day brings everyone to the Park. There must have been 100,000 people in the Park on Monday. And they were all following the rules, right down to bikers choosing the appropriate lanes ("slow" or "fast"). Abby, Jean and I took a five mile walk around the Park for about an hour and a half. I never saw a person with less physical ability than me. This made me mad and prompted me to ride a pissed off half hour on a stationary bike when we got back to the hotel. That helped. So did going to see Mamma Mia that night.

 

Shopping. Some of the high end jewelry stores are surprisingly not accessible, but check this out. I was hoping to pick up Rolex watches for John, Paul and Dan. The two stores recommended by our hotel concierge were not accessible. After the show Monday night we learned that there are Independent Rolex Dealers all over Manhattan, and they will come to you if you have ALS. We met two of them at 53rd and 7th. They had a wonderful selection of watches, and we found a perfect match for each of the bike guys. And we came in far under budget. The three watches combined set us back less than one half of one percent of the average retail price of a single Rolex Submariner at a brick and mortar store. Overhead is everything in the City. Here is a photograph of me with Mr. Johnson after we made our purchase.

 

More images from the Big Apple:

  

  

Days 1037-39, May 14-16, 2013. One of Jean's two sister's sisters named Mary (yes, you read that right) is visiting this week to help with graduation activities since I have the party-preparation utility of a shrub. Mary Lorraine (who goes by "Lorrie" to reduce confusion with the other Mary) is a runner (which also reduces confusion with the other Mary) and a physical therapist (further reducing confusion with the other Mary). With Jean busy at work and Dan out of town (increasing the price of rum in Wisconsin by depleting its supply), Lorrie offered to captain the tandem.

Lorrie was not a cyclist before the adventure. That has not changed, but she does have a great sense of humor. Here is a selection of quotes from the two hour cruise:

1. "Shift! "

2. "What should I do now?" "Pedal."

3. "Oh, sh&! I'm panicking".

4. "Right." "No, other right".

5. "Shift."

6. "Have I broken it?" "No, you have the brake on. "

7. "Shift. Shift." "Which way? " "Left... No, the other left."

8. "I can't understand you".

9. "Huh?"

10. "What?"

11. "Shift. "

 

Get the idea? Every now and then, when Lorrie was in the right gear and otherwise happy, she would relax and pedal. Here is a secret about Lorrie. If she chose to learn the tricks, and if she could shut up for a while, she could be a ferocious climber like her sister who is not Mary and who is about Jean's size and sleeps with me.

Days 1034-36, May 11-13, 2013.

AHS Sports Update.

Abby delivered a shocker in the finals of the 100 hurdles on Saturday. Her personal best coming into the meet was 18.0. In the preliminary round on Friday was she ran 18.02. Saturday morning a few things came together at just the right time, and she popped off a 16.46. Most athletes quality for the New Mexico State Meet the easy way -- by placing first or second in their district meets. Abby was third, but she's still going to State because her time met the demanding qualifying time standard for the State Meet.

Later on Saturday she picked up another third place in the 300 hurdles by running her second fastest time ever. Then her 1600 meter relay team snagged a place in the State Meet by taking second in the final event of the meet. Not bad for a sophomore. Heck, that wouldn't be too shabby for a senior! On to State next week.

Jimmy's club soccer team lost their final game Sunday and saw the season come to a stop.

However, at the AHS annual Sports Awards Banquet tonight, he was named Male Athlete of the Year! But check this out -- he was also tapped as the 2012-2013 Scholar-Athlete of the Year for his ridiculous GPA and multiple-sport awesomeness.

Proud parents? Oh, yeah.

Days 1030-33, May 7-10,2013. AHS Sports Update. Jimmy's club soccer team has qualified for the finals in the New Mexico State Cup, after running the table in round robin play. The championship match is Sunday.

Abby qualified for the finals in her district meet in both the 100m hurdles and the 300m hurdles. Looks like she's peaking at the right time. She ran a massive personal best in the longer race today. She goes to the finals seeded third in the 100s and second in the 300s. A second place in either will qualify her to run at the State Meet next week. Finals are tomorrow.

 

Day 1029, May 6, 2013.

My point of view: Andy Porto is the Hero of the Week.

Jean's point of view: Andy Porto is just another son of a motherless goat to earn a spot on Jean's Suicycle Sh@! List.

In the Bridge Incident I described two entries ago, there was damage to the trike I didn't mention. The rear axle, which is the part that makes it a trike and not a bike, was bent by the impact with the bridge's guardrail. This is also the part that you have to get custom-made by a machinist in England, who has a six month waiting list for such things. So it's bent.

When I was in high school in rural Northern Virginia, I had three favorite ball caps. "Dallas Sucks", "CAT" and "Vail". The first two suggested, quite emphatically, that I was a cracker or possibly a bit of a redneck. The third was either stolen or implied that I was only part cracker/redneck. The truth was that I was, like Chantilly, Virginia, itself, caught between two very different categories of people -- cracker/redneck and yuppie-in-development. A powerful argument can be made I was leaning toward the former when I add one more fact about the Vail hat. I didn't buy it in Vail; I bought the patch in Vail and I hand-stitched it onto an old cap after I cut off the original Exxon logo.

Now think about all that for a moment.

Anyway, you can certainly take the boy out of Chantilly, but if he bought a pair of Dingo square-toed boots at Chantilly Cash-n-Carry, no amount of time or education will ever take the redneck engineer out of the boy. And that is how, only three days ago, Jimmy wound up standing on a pipe attached to the axle of the suicycle trying to bend it back into a straight line. All because of my baseball caps.

Fortunately, John came along right about the time I was thinking "so, if that won't work, maybe we should try the vise". He and Dan scooped up the trike and left to see Dan's brother Andy Porto, who used to be a machinist. That is apparently the equivalent of saying Tom Brady "used to be a quarterback". Andy was able to identify and fix the problem with the axle and the wheel (we didn't even know about that one). He did this to the 1/1000th of an inch.

Thus, Andy Porto has kept the suicycle on the road for another adventure, and earned the Hero of the Week title, and a spot on Jean's Sh@! List.

Days 1026-28, May 3-5, 2013. A Dream Returns Me to Denial. Back in the day when we were going through the diagnostic process that led us to ALS, I was the King of Denial. Right up to the moment when the nice man with the pink bow tie delivered the news, I expected him to say "this just doesn't look like ALS to me". In the nearly three years since, I have become a true believer. A couple of weeks ago, a wonderful thing happened. Or maybe it was terrible. It will be some time before I know which.

You know the kind of dream. You are cornered in the dark building by the monster preparing to take a bite out a moist and meaty part of your body. You wake up, your heart is hammering, you have sweat on your forehead, and you think "whew -- good thing that wasn't real". And suddenly everything around you takes on a glow because it's all better than being eaten.

So I had a dream that I was dreaming and woke up from the dream to discover that the whole ALS thing was a dream. It was a very happy dream indeed. Then, of course, I woke up for reals. And in the for reals world, I can't scratch my nuts when I wake up.

This got me thinking. What if ALS just went away? What are the Top Ten things I would want to do that I can write about in this PG-13-ish blog? Here they are, in no particular order.

1. Tell a story at the dinner table.

2. Take a walk in the park with Jean, holding hands.

3. Drive my old VW.

4. Bite into a green chili bacon cheeseburger in Hatch, New Mexico.

5. Pet our dogs.

6. Run.

7. Sing.

8. Type the last blog entry (with my fingers).

9. Hug everyone. And...

10. Scratch my nuts when I wake up.

The puzzling and sort of mystical part of this is that this dream has stuck with me, and popped up in the middle of the day. And I've repeatedly suspended disbelief and rolled with it. What this looks like is bizarre. I find myself -- on the tandem, for example -- watching people do things and looking forward to when I will be able to do those things again. When I'm in the zone, I fully believe I'm going to be the first person in the history of ever to recover from ALS. So I'm in intermittent denial, and it actually feels kind of good to go there.

Today during our luscious 30 mile ride, I saw people riding some sweet bikes and I found myself making note of a couple of equipment features that I will incorporate into the next bike I put together. Is this a bad idea? I think if I don't let it take over my outlook on life, it's a harmless vacation from ALS.

One more thing -- I forgot no. 11 on the Top Ten list:

11. Drink a beer.

Days 1022-1025, April 29-May 2, 2013. Proof that life ain't fair. Two stories.

No. 1. "It wasn't my fault." So I was wrapping up a training ride on the suicycle with John and Dan. We had under a mile to go. We needed to drop down a small hill, around a curve, across a bridge and into a quick right turn. It's a technically complex series of maneuvers for me these days. Braking, shifting, turning, and pedaling all within about five seconds.

As we dropped into the turn downhill, I discovered my brakes had been asked to slow me one too many times, which is to say they were not working.

Let's pause here for a moment. Bike brakes don't often just stop working. In all my years on bikes, this has happened... Uh... Welllll.... Once, including this one.

I had a quick choice to make -- embrace the speed and hope to make the turn without flipping the trike over (which would put my head into the guardrail on the bridge), or I could decrease the severity of my turn, in which case I would probably hit the guardrail (with the trike, not my melon). I elected option two, mostly because I had a feeling that my propensity to pull a turd out of a genie's bottle lately had not been exhausted.

I failed to appreciate the width of the suicycle when I made my selection. Instead of a scrunching sideswipe of the guardrail, the right rear wheel hit the guardrail head-on. I went from 10 or 12 mph to zero in about a quarter of an inch. My right wrist gave an immediate yelp. When we began assessing the damage the thing that stood out was -- HOLD UP, HERE. I'm going to FINISH This STORY ONLY IF YOU PINKY PROMISE NOT TO TELL JEAN. DEAL? GOOD. NOW, WHAT IF YOU ARE JEAN? WELL, IF YOU ARE JEAN, PLEASE CLICK RIGHT HERE. Now that we are all on the same page... The thing that stood out was that when John held out my right arm in such a manner that you would expect to see the top of my hand, what we saw was the palm. John expressed his concern right out loud. I attempted to appear nonplussed. I have to have someone move my hands to and from the bars anyway, so I asked Dan to put my hand back on the grip. To do this, he had to turn the palm down... FFFTH-POP! That is the sound your ulna (the bone that runs from the outside of your wrist to your elbow bone) makes when it pops back into the wristhole. Perfectly, I might add.

But I digress. The point of story no. 1 is I don't need a bike mishap caused by a mechanical failure. Truth told, I actually think I should be exempt.

Story no. 2. "It wasn't my fault". This is not a new story, so I will be quite quick. About two weeks ago I fell on my mouth in the backyard, and I whined about it in this blog in case you missed it.

Well, the stitches are gone, as is most of the blood, but if I were to travel by air, I would have to gate check my lower lip because it is still too big for the overhead storage compartment. When I leave the house in the wheelchair, we put my lip in a trailer. If we had a draft under the front door, we could stop it with my lip. It's big.

One consequence of this is that talking is even more difficult. This, I do not need. Remember the scene in The Godfather when the hitman, Luca Brasi, had rehearsed his expression of gratitude while waiting his turn for an audience with Don Corleone during the wedding (clicka righta here) ? Well, imagine what Luca would have sounded like with half the volume, the ability to sound out only one word at a time, and with a live salmon in his mouth. That is how I sound hauling this lip around.

Proof that life ain't fair.

Days 1019-21, April 26-28,2013. Montreal is off. We have a new plan, one that is arguably a dumber idea, but it will be fun and does not run the very real risk of being lame (like Montreal). And, U.S. Nationals seems like a much more respectable place to retire than a nearly-empty Formula One race track far from home.

U.S. Nationals will be in Madison, Wisconsin, in early July. I don't know much about the courses yet, which is risky, but we have a backup plan. Last summer, we went to World Cup events in Italy and Canada, and we had a ball hanging out with our teammates. Few, if any, of them will be in Montreal, but essentially the entire US Paracycling Team will be in Wisconsin because Nationals also serves as the trials for this year's world championships in Canada at the end of August.

If I can race in July, I will do so. If not, we can ride the bike-friendly roads of rural Wisconsin with John, Dan and Paul on the tandem. See, as if they haven't done enough to support my habit, John and Dan are going to drive to Wisconsin and pull a trailer with the tandem and the suicycle.

The likelihood of being able to race by July is slim, but "race" is a relative term. By "race" I really mean "pedal the bike the length of the course without rolling backward down a hill or bashing into a fixed object or the ground". The truth is I'm losing power in my legs, lots of it. That, along with the challenges that come with having inoperable hands, will make a finish less than a sure thing. Oh, and whatever treats ALS has in store for me over the next couple of months.

Why bother? I mean, why lose a minute of sleep trying to solve yet another engineering problem with the bike? Why look down even one more hill wondering whether I can keep the machine under control to the bottom? Why look up even one more hill wondering whether I can shift into a gear small enough to make it to the top? Why drag family and friends to Wisconsin to probably race against no one? Why endure the humiliation of hearing the PA announcer's voice echoing through the woods "there are still riders on the course", knowing he means me? I know suffering comes from resisting what is, and attempting to race in Wisconsin is totally resisting what is, so why go through it?

Two reasons: first, there is nothing cooler than a USA Cycling national medal, and whatever color they hang around my neck if I finish, I will have earned it more than any athletic award I've ever received. But more importantly, second, this is a marvelous opportunity to give two extended middle fingers to ALS in perhaps the last truly dramatic fashion I will have available.

The day will come when the most rebellious thing I can do is doughnuts in my wheelchair. Until then, I'm going to go ahead and resist what is. Sorry Buddha.

My thinking here is I never want anyone to say "he lost his battle with ALS". No, bro, I'm winning. ALS wanted me to sit my cracker-white ass down a long time ago.. At some point -- after Wisconsin -- I will stop resisting what is, all Buddha-like. And that's the plan.

Days 1015-18, April 22-25, 2013. We need an old priest and a young priest. My wheelchair is possessed and wants to kill me.

The evening started off pleasant enough. Jean was whipping up fajitas on the grill. Jimmy was alternating between juggling soccer balls and getting the patio table set for dinner. Abby was alternating between interpretive dancing to country music and helping with dinner.

Everything was on the table, the weather was perfect and it was time for a leisurely family dinner.

Someone (and I'm not going to say who, because this person feels responsible for what happened next) began helping me get a jacket on. I was standing immediately in front of my wheelchair, and I left the power "on" for the chair when I stood. This was just the break Satan and his complicit chair were hoping for. My jacket hooked the joy story stick and my chair attacked my heels, sending me straight to the concrete, face-first.

On the way down, I had some time to think. Specifically: 1) am I really going to land on my face on the concrete? 2) are my arms going to stay by my sides and do nothing to help out? 3) this one is going to hurt. BAM! My first thought after I made contact was "wow -- that was a terrible sound -- I wonder if my teeth are gone".

Abby had been close by, and had been able to grab my waist, which slowed my fall considerably, and must explain why I didn't break my nose, chin, either cheekbone or any teeth, and why I remained conscious. There was, however, a lot of blood. I bit though my lower lip with my two top front teeth. This is not as glamorous as it sounds.

Jean and John Blueher took me to the E.R. Jean did the driving for a good reason having to do with John, olives and vermouth. We picked the hospital located in the part of town we believed was least likely to have drive-by shootings on a Sunday evening. This strategy paid off, as we didn't even have to sit down in the waiting room. Four stitches was all the damage. I would have predicted more if provided the facts in advance. Abby says I look like a duck. I feel like this guy (click here).

                               

Day 1014 April 21, 2013. Tomorrow is going to be a day off. This afternoon, John, Dan,Paul, Jean and I rode from Manzano High to trailhead for the La Luz trail. Jean and I rode the tandem (65 lbs.), and everyone else rode their road bikes (15 lbs.). Just sayin.

 The two mile climb from Tramway Boulevard to the turnaround averages over 10%, and shoots skyward nearly as many vertical feet as we scaled over the course of 70 miles in Mesa two weeks ago.

A pedal stroke should be roughly circular. On the 12% sections, ours were pentagons, squares and even triangles. We came so close to stopping several times that vultures weren't just circling overhead, they were actually putting out utensils and pouring drinks.

Even when complaining (and, yes, she did), Jean was a stud, hammering through the most difficult 40 minutes I've spent on a bike.

The guys were weaving side-to-side, using the whole road so as to avoid tipping over. We were carving the absolute most direct route to the summit, crossing the yellow line if it might save six inches.

When we arrived at the parking lot, we immediately began congratulating ourselves on our mastery of the Universe, and then came the attempted buzz-kill. From beyond the final turn before the parking lot, it began faintly, then grew louder with each repetition. "whee-honk, whee-honk, WHee-honk, WHEE-HONK, WHEE-HONK... " The rider emerged from the curve, staggering with his machine into the parking area. He stopped, pulled his feet out of his pedals,and slumped over his bars. "WHEE-HONK, WHEE-HONK, WHEE-HONK..." As time passed it became clear he would neither vomit nor die,and he began to speak. Unintelligibly at first, then something about 31 minutes, then a full explanation of his ride -- 31 minutes from I-25 to where we were all gathered.

My quick math told me that, not only had we just struggled to keep from sliding backwards down a mountain road, but also Some Guy I had never seen before was at least as fast as I was at my best up that hill. This second kick in the ding-ding was particularly painful because I had allowed myself the luxurious fiction that no one is faster than me on that epic piece of New Mexico roadway. True, my evidentiary support for this notion had been less than rigorous (I avoided this ride when I was with people faster than me), but it was an enjoyable indulgence. Until yesterday.

My sadness over Mr. Whee-honk having burst this bubble went away quickly, though, because then we started downhill. The entire return trip was down, most of it with a significant tailwind. Outbound, our journey had taken almost an hour and a half; the return was barely over 30 minutes.

Tomorrow is a day off.

 Day 1013, April 20, 2013. AHS Sports Update. Abby is smoking up the track. Yesterday she placed 2nd (100 hurdles), 4th (300 hurdles) and 3rd (4x400 relay) at a big meet in Albuquerque. On the season, she has the 6th fastest time in the city for the 100 hurdles. The best part is she is having fun and looking stronger every week.

Jimmy had his "official visit" with the UNM Soccer team this week. He spent Thursday afternoon through Saturday with the team and coaches. Stoked. That's what Jimmy is about becoming a Lobo. Woof, woof, woof!

Days 1011 -1012, April 18 -19, 2013. The Walgreen's Incident. Sometimes the extent of my disabilities catches me flat footed. It may be hard to believe, but there are times when I am sitting in my wheelchair, and I fully expect to be able to stand up and walk across the room. Then, when I struggle for two minutes to bridge the two foot gap between my recliner and the wheelchair, I have a puzzled look of frustration on my face.

Tonight was date night, and we stopped at Walgreen's to pick up a new drug. I sat in the Pig (the only nickname there will ever be for any piece of adaptive equipment I ever have -- except possibly "the turd", which is what I'm about to start calling the eye tracking Dynavox computer). From my perch in the front seat of the Pig, I could see well into the store.

Jean was having an insurance adventure at the pharmacy, so I had time to do some anthropological research. The first thing that struck me was the sheer mass of the customers going through the overworked sliding doors. Of 24 people who went in, only four were not obviously overweight. Then my data took a surprising turn. Of the four normal-ish weight people, three came back out with cigarettes. "These people are all going to outlive me", was the first thing that came to mind. On the balance of probabilities, that's exactly right. Serves my smug ass right for all those years I had a massive superiority complex arising from my lunchtime workouts. As it turns out, I might be in the same boat if I had slurped down a plate of enchiladas, a scotch and a nice Cubano every noon.

Expanding my analysis, I turned my attention to a man standing outside the store. Like me, he had a good view inside the store. I couldn't decide which group he fit because his clothes were baggy. He seemed to have very full pockets in his hoodie. Unusually full. His hands never came out of the pockets.

Then a woman in the store caught my eye. She was in the majority group, morphologically speaking. She was smartly dressed in a sweatsuit that had a print that conjured up both leopard and t-rex images. She wielded a teal cell phone, and she seemed to be receiving a call from the Pentagon every 30 seconds or so. She would urgently slam the phone to her head, speak with an importantly furrowed brow for a moment, then return the phone to its holster, hanging precariously from an overburdened belt that must have had cosmetic purpose.

After two or three rounds of conversations with the Joint Chiefs, she turned to a shelf in the cosmetics section of the store and began shoveling merchandise into her shoulder bag. One item at a time at first, then quickly escalating to both hands full.

In my practice, Walgreen's was one of my favorite clients. I am also a good citizen. I was going to stop this crime!

Um... Or so I thought. My first plan was to run her down with my wheelchair. Except for the fact that I was ratchet-strapped into the Pig and the ramp has to be operated by someone from outside. Then I thought Jean might come out before the job was done. No luck. Maybe a Walgreen's employee would come outside to inventory the cases of water placed outside the store to lure potential customers inside. Yes! A female employee came through the sliding door and looked thoughtfully into the parking lot -- right at me! I made eye contact and motioned with my head for her to come to the truck. Yeah, that's going to work on a dark night. She turned a walked back in the store.

Jean's phone was on the dashboard... About a foot out of my reach. Oh, and I can't reach. And even if I could, I can't pick up, dial or be understood on the phone. I could get someone's attention with the horn! But I was strapped to my chair, can't open the latches, and the angle from me to the horn was just too severe to reach with my foot.

Resigned, I sat back and watched the deforestation of the cosmetics department continue. When the shoulder bag was filled, the Kremlin called, the woman answered and walked out the slider.

My frustration turned momentarily to hope, as the man with full hoodie pockets spun on his heel to follow her. My immediate thought: "brilliant! He's a store under cover detective! " Then he got it the passenger side of her sparkling new SUV with custom wheels that caught a reflection of every parking lot light as they rolled away from the store.

So the man in the hoodie had been an accomplice, not The Heat. And maybe what filled his pocket was a gun. And maybe there would have been a murder if the woman had been confronted. So, just maybe my having ALS and being stuck in my wheelchair in the Pig (with no heat and no way to turn it on) was a blessing in disguise and it saved a life tonight. I'm going to go with that one... Another silver lining.

Days 1008-1010, April 15-17, 2013. Perspective. Another way to say this is "some people have it worse than me", which sounds positively heartless and self-centered, so I will stick with "perspective".

Yesterday I went out with Dan and John on the suicycle. I had a hard time with the wind and my neck support device needs to provide more support (that caused me to spend half the ride with my head hanging down, able to see only about three feet in front of the bike). I'm having a very hard time making it two feet from my recliner to my wheelchair. I did not, however, run Boston and find out my family had been blown up watching me waddle in a bit over four hours after the start.

I don't have a seven year-old kid with a brain tumor.

I didn't discover I had breast cancer 16 months ago, fight it hard, and then find out last week that my liver had quit.

I didn't slip and fall in my garage when I was 44, bash my head on a concrete step and die while my wife and kids snoozed on a Saturday morning.

I do whine (mostly to myself) about my situation. I whimper about fairness, suffering, all I am missing or will miss, science, medicine and more. Sometimes I hear myself and it sounds like I will be the only person in the history of Earth to die.

I have spent over 5% of my life knowing I have ALS. Am I satisfied that I have truly lived with ALS? Heck yes I am. But it gets a little more challenging every day. That is why a little perspective reality check is a good thing from time to time.

Days 1004-1007, April 11-14, 2013. Introducing the adaptive equipment of the month. Behold. The sock.

So here is the background. I've been having increasing difficulty rolling over in bed. The problem? There are actually two of them. First, my arms are essentially no help. And if that weren't enough, they get in the way. Try it out -- let your arms go useless, and then try rolling. They really become a liability, am I right? Yes I am.

The second problem wouldn't have been on my list of the top 1000 things to fear about ALS, but check this out. My calluses are all gone. The ones from playing guitar, lifting weights, gripping handle bars, and walking. Yep, walking. My heels are as smooth as a baby's freshly minted, glistening white butt. They are as frictionless as snot mixed with olive oil and smeared on waxed paper. My heels.

Traction is important in the rolling over process. Especially if your arms don't work. And the heels are where the rubber meets the road. Or the sheets. Our sheets are Costco's finest Egyptian Cotton 50,000thread-count varnished bed clothing. They are, like my heels... Frictionless. This is a bad combination when I'm searching for rollover traction. Enter the common sock. Purchase some, put them on, and they provide the necessary purchase -- breaking the vicious frictionless cycle.

Why isn't there a book with this stuff in it?

Day 1003, April 10, 2013.  Dynavox Customer Service Sucks.

Dynavox is the manufacturer of my eye tracking computer. Sixteen thousand bucks. While Medicare (you - I don't pay taxes anymore) paid for mine, I still feel like Dynavox should be responsive to me. You know, as if I were the customer.

No axe to grind here. Just me telling how it was with Dynavox. On the off chance you know someone who may need one of these things.

The problem started in October. We have a local representative for the company here, but I learned early on that making an appointment with her is a step that can easily be skipped. When she comes over, she asks what the issue is, and then dials up tech support. So I skipped that step and called tech support.

They had no clue, which meant I had to talk to each of them over the course of several weeks until they concluded I needed to send it back. Now this is a big deal. I can't type at all anymore, and the voice recognition route is just downright entertaining. “Never fear, Mr. Schneebeck, while your computer is in for service, we will provide a loaner”. That is what they told me the first of December. By the end of February, no loaner had become available. I was beginning to get grouchy. I called to pester.  They assured me I was in line for a loaner. Seriously? You people make these things! Look behind you, dude!

Then, on a holy day early in March, the most wonderful thing happened. A box was delivered by a nice young man wearing brown, and it (the box) contained my loaner. That meant it was time to pack up mine and ship it to Dynavox, which we did the next day. Bad move. As the UPS truck rumbled away, we plugged in the loaner and discovered it had even more problems than mine.

Hours of tech support later, the loaner was declared a goner. Back in line for a new loaner.

ALSA to the rescue. Kerrie Copelin, ALSA's one woman crew in New Mexico, loaned me a full Dynavox unit that I've been using for everything except email.

Meanwhile, Dynavox tech support was bumbling along. Three weeks after they received my computer, they sent an e-mail asking for clarification about the problem. Then, in the midst of several unresolved exchanges of emails on this topic, I received an e-mail from tech support telling me the unit has been shipped to me.

The way this process has gone so far, I wouldn't be surprised to find a note in the box telling me they gave it their best shot, but right there in the middle of trying to fix it, the one year warranty expired...

 

Days 998-1002, April 5-9, 2013.  El Tour de Mesa! 

The riders: Jean, John Blueher, Paul Mohr, ALS Boy.

The Albuquerque crew: Dan Porto (plus Paul and John).

The supporters: Sheila and Ken Refner (post-race picnic feast), Lorrie and Steve Park (post post-race dinner and day after breakfast feasts).

The course: 70 miles, consisting of 21 pancake-flat miles, followed by 40 miles rolling with a total gain of 1800 feet, and then nine miles down and to the finish. The worst thing: the wake-up call at 4 a.M.

The best thing: The lush desert in bloom on the descent to Saguaro Lake.

The most amazing thing: That Paul, John, Jean and Dan would just do everything that had to happen to make it possible.

Some other things: We left home right on our 8 o'clock plan at 10:00.  New Mexico looks like it might burst into flames at any moment (and it will, based on the dismal winter precipitation, the near absence of high country snow pack, and the record high March temperatures that have turned what snow was up in the mountains into a very early runoff. Arizona, magically, looks like Chem Lawn has been tending to the whole damned state. Wild flowers blooming, desert grasses waving happily in the breeze, spectacular blossoming cactus and even fat coyotes.

It's like there was a war that the Army of Arizona won,and the peace treaty allowed them to pick what they wanted and leave the crap to the Nuevo Mexicanos.

Oh, yeah, and the Arizona roads have nicer pavement, too.

By the way, I'm not really a gratuitous New Mexico basher. The reverse is true on our eastern border, where all evidence suggests that the Army of Texas was skunked and had to keep Odessa.

We found our hotel, secured libations for everyone who doesn't have a feeding tube, and got the bikes ready. It might have been better to reverse the order of the last two, but it all worked out.

Saturday morning came before Friday night was over and, before we knew it, we were at the starting lineup -- arriving just in time to hear part of the Star Spangled Banner.

Jean did not want to do this ride, even when we called it a "ride", not a "race". Her bike training time had been... Uh, sparse. The times she had been on the tandem this year had been marred by howling winds and a fit problem that has been causing significant pain. To tell the truth, I never really gave her an option. Once Mesa hit the family calendar, it was happening, just as surely as the 6th of April. It's not like we had a lot of choices for tandem captain -- we needed someone hyper-fit with a good sense of humor, under a certain height, who wouldn't mind sleeping with me. Dan might have qualified, but he was off at a family reunion at the NRA's recently acquired State of Texas. Perhaps sensing our lack of alternatives, Jean declared on Friday morning that she would turn no pedal in anger; but instead would ride every stroke "with love".

And she delivered on that promise. The flat part of the course buzzed by in 1:09 for 21 miles. John and Paul rode to either side of us most of the time. Then we, and apparently everyone in front of us, stopped at a rest stop smartly equipped with three port-a-potties. 1400 riders and 3 holes. So we had a leisurely 17 minute rest before heading up the first of many hills.

The tandem climbs as well as I juggle. So the hills slowed our pace considerably, but we always remained within the window we had guesstimated before the ride. As the morning wore we found ourselves in the stunningly beautiful scenery of the desert in full spring bloom. It was easiest for me to enjoy the vistas from the back seat because the best lighting tended to come when we were descending, and everyone else had their hands full keeping us on the road.

The final climb that took us to the ten-to-go mark, was a long grind. Our "speed" hovered just under 6 mph, and we passed only one rider who wasn't walking. On this stretch, everyone had plenty of time to admire the flora, although Paul and John had to divert substantial attention to keeping their bikes upright.

We rolled across the finish line at five hours, fifteen minutes after the start. It was a beautiful ride at a very respectable moving average speed of almost 15 mph. Jean was completely up to the task in every way, and very much in the mood to celebrate after.

We spent the rest of the weekend replacing (plus some)the calories burned on Saturday.

The drive home even helped in this way, as we stopped at Sparky's for the greatest green chile cheeseburgers on the planet, and, uncharacteristically for Sparky's, no flies.  

Days 995-997,  April 2-4, 2013. So we are off to the race in Mesa tomorrow. And we have decided to give the suicycle a go in Montreal at the end of the month.

I feel like this takes us well beyond what a friend should be able to ask friends to do in good conscience.

We will have a gang of 6 in Mesa, and 7 in Montreal. Both trips are all day journeys for everyone involved, and both trips will require a ridiculous amount of pre-departure planning, along with astonishing schlepping demands.

For instance, this week Dan and John have spent two afternoons getting the tandem in race shape and making adjustments that will help us stay comfy for 70 miles. Meanwhile, Paul put his ingenuity to work and designed a device that he and my mom built to control my pesky reflexes.

The problem surfaces when my foot extends down just so. At that point, my calf begins contracting four or five times a second. This is highly annoying. Paul's new device prevents my foot from extending to that point, but allows me free movement through the pedal stroke. It has been tested on the tandem and I will use it Saturday. I'm hopeful it will be as effective on the suicycle.

  

The Montreal decision moment was a beautiful thing. Remember that moment in "My Cousin Vinny" when Vinny's nephew realized he was being accused of murder and he said, incredulously, "I shot the clerk?!" Then the prosecution used the words as a confession. It was a moment like that when Jean's words, (in fairness, uttered rhetorically), could be treated as an offer. Like the jerk I am not very deep inside, I said "well, if that's what you really want, honey..."

 

Day 994, April 1, 2013. Sports Update.  Jimmy has verbally committed to play soccer for the University of New Mexico. This is a huge deal. The Lobos are a perennial powerhouse, routinely in the NCAA top 20, and often higher. They played for the national title in 2004, and this past season had a disappointing early exit from the NCAA tournament when many futbol experts expected a deep run.  Earning a spot in the starting lineup will be the greatest athletic challenge he will ever shoulder. You remember what it was like when you walked on to play quarterback at Bama, right? The only difference here is that UNM wants Jimmy on the squad. Otherwise, your situation back in the day was about the same. 

Abby is off to the races in her sophomore track season. In only two meets and without much specific training, she has matched her best times from last season. I am coaching one day per week. It's something like having a duck sing the lead at the opera, but the girls gather close and listen carefully. And then they say "huh?"

Days 987-993, March 25 -31, 2013.  Montreal is still in limbo. We had another go at it with the homicidal tricycle this week, and it went fairly well. No brushing of skin on asphalt, among several bullets dodged. I rode faster than the week before. The reflex problem was a bit more controlled. So now we are trying to decide whether to pull the trigger and buy tickets.  No pressure. If I ride too slow to be credible, I let my own self down. If I crash, the crew will be (justifiably) thinking they told me so, but it would be bad form to just leave me there on the pavement and go have a Molson, so, practically speaking, they will have to clean up the mess. Thousands of otherwise useful dollars in airfare and hotels. No pressure. 

I keep trying to bait someone else into making the decision. They ain't biting that worm.  I'm going to have to pick... Tomorrow. Well not later than Tuesday. 

Meanwhile, there is something we are going to do. El Tour de Mesa, a 70 mile race-like thing in Arizona next Saturday. Looks like the team will be Paul Mohr, John Blueher, the captain of my tandem,  Jean, and me. Maybe Tim Holm, but there is an issue between him and the race organization people that might make that a bad idea unless Arizona closes that fruits and vegetables inspection point at the New Mexico border. By Friday morning. 

It's a nice course -- very flat. Until the hills, anyway. 700-800 bikes, the vast majority of which will finish well before us. There will be some changes from our last road show in November. Though the bikes and the adaptive equipment will be the same, my fuel will go in through my feeding tube, which sounds sort of creepy to me. I'll be like a jet refueling mid-air. Only not as fast. The reflexes are bothersome on the tandem as on the suicycle, and we are trying to figure out how to mechanically freeze my ankles. That's actually not as easy as it sounds.   

Days 980-986, March 19-24, 2013.  So the UCI's para-cycling race in Montreal is April 28. That's coming right up. We are still trying to figure out whether it's reasonable for me to throw down... Well, that's probably a bit dramatic -- how about "whether it's reasonable to fill out the entry form?" I don't know whether I was ever one to throw down, but, if I was, I'm certainly not anymore.  

So we need some fair assurance that I will be able to make the suicycle go, stop, turn and change gears. I have issues with each of these components except turning.  

Go. I have the power in my legs, but the reflex activity in my ankles is a massive distraction -- one of such magnitude that it interferes with bike handling. We are experimenting with massage, central nervous system depressants and a tranquilizer dart gun.  

Stop. This, I believe, is manageable for Montreal for the convenient reason that the course is flat enough that brakes are a nice touch but technically unnecessary.  

Changing gears. My racing trike has two sets of ten gears. There are two shifters -- one that shifts between the fast set and the slow set, and one that shifts between the ten gears in each set. I can operate the latter, but not the former. Again, thanks to the flat course contour in Montreal, this is a problem we can ignore for that event (note: I do have a plan for a schnoz-mounted solution to this problem).  

So, today we gave it another go. The reflex problem is really the king of the turds in the Montreal punch bowl, and it is significantly improved from last week but by no means can it be considered resolved or under control. Speed, though, was definitely up. Last time, my speed typically hovered around 11 mph, with a top reading of 13. Today those numbers were 13 and 16.  

One more try? The concensus is "yes". Well that's if a concensus is made up of the views of Paul Mohr, John Blueher, Dan Porto and me. And if you don't really factor in the views of Jean or any of my doctors.

Days 977-979, March 16-18, 2013. Have you ever really wanted to know where you stand in the big picture, and then you found out and you really wished you hadn't wondered?

When I was in college, my sort-of girlfriend had just dumped me (or notified me that she was not, and would not become my girlfriend). I made the mistake of going in for an exit interview. Worse yet, it was on her turf -- a remote family getaway with her mother and her best friend. If the invitation was hers, she  must have hated me very much. If I lobbied for the invitation, I was more pathetic than I recall.

As the discussion opened, I had no delusional thoughts that she would tell me how foolish she had been and fall into my arms. But I did hope she would return some of my self esteem. I lobbed a softball her way. I don't recall the words, but the gist was to offer her the opportunity to say the problem wasn't me; she just wasn't in the right space for a relationship. She could easily have lifted that ball out of the park by claiming it was just a matter of unfortunate circumstance. Instead of a gently arcing fly ball, she delivered a scorching hot line drive right back to my teeth -- a series of complaints, practically an itemized list of reasons neither she, nor any rational female would want to associate with me.

I truly wished I had not asked.

Last Friday, I listened to a webinar about a drug being tested for ALS that is believed to be capable of delivering more muscular bang for the nerve impulse buck. If so, it will make people stronger at every stage of the disease. That would be handy.

Researchers went through the theory, what they know so far from testing on animals and from early human trials. Then they went to the timetable, and that is when we found out what we wish we didn't know about where we stand in the big picture.

The timing could be all about the plight of patients facing one of the few diseases for which there is no treatment. They could have talked about balancing this pressing need with the necessary scientific rigor to ensure validity of the results. The timetable, however, was designed to enable the scientists to present the results at a December conference in Las Vegas.

I wish I hadn't asked. On the other hand, though, thank God for conferences in Vegas, right?

Days 975-976, March 14-15, 2013.  So let's talk about the bike. With a ride on the suicycle highlighting today's festivities, I woke up in a state of sheer terror this morning.

it reminded me of that time when I went backpacking all by myself and made my dog sleep outside my tent for my personal security and to guard the food I hung foolishly from a low tree branch, and I awoke to a sound that could only be a bear licking dog guts off his claws, and when I finally mustered the courage to open the tent, I found my beloved golden retriever Livingston snoring while a most grateful raccoon was just polishing off the last pop tart.

I wanted to sleep until departure time, and I almost succeeded. John, Paul and Dan picked me up and we headed for the trail by the Rio Grande.

The start of the ride was troubling. I was shaking so violently I could not hit the shifter button with my hand. The shaking is a function of ALS -- brisk reflexes cause the rapid and rhythmic contraction of my calves. The effect is similar to riding over railroad tracks... For ever.

Over the course of the ride, things improved, but not dramatically. Shifting was difficult and inefficient, though braking and turning were fine. The reflexes never resolved, but they eased up a bit. The most significant problem was certainly the reflex thing. And it must improve or racing would be silly -- my top speed today was a smoking 13 mph.

With ALS, improved performance is not a common thing, so what do I have in mind? Well, last February Jean and I went to San Diego, where we met our new friend Steve Peace, who introduced me to the suicycle. We took a short, easy ride that was nothing short of terrifying to me. You can go back and read the story from the first week of February 2012, but here's the summary: it took a massive stroke of luck to keep me and the trike from plunging into Mission Bay. Of the numerous problems I encountered that day, wildly hyperactive reflexes was one. Same situation arose when I got on my trike for the first time. The common thread in those rides was terror, which most assuredly was a factor today. And, get this, the reflex problem is more pronounced when I'm nervous. So, I have worked through this in the past. Maybe one more time? We'll give it another go on Tuesday.

Days 972 -974, March 11-13, 2013. Life sucks; get a helmet. This is what my month of practicing meditation has taught me. Doesn't sound very Buddhist, now, does it? Here's the analysis.

Life consists of a series of magic and tragic events. Some people are spared most of the tragic until relatively late in the game. I put myself in this category. I'm 52 years old, and I've been to barely a dozen funerals; haven't lost a parent or a dear friend; have healthy and happy kids and a perfect marriage to someone who is the life of any room she walks into. By the time most people are truly confronted with their own mortality, they have experienced so much grief and pain, they can call upon the past to help steer the ship. For some, this is an inevitable part of having lived a long life; and for some, it's a function of wading through deep doo-doo during a short and difficult journey.

Part of the price of admission is we all have to endure a certain amount of overripened crap. Buddhists, meditation gurus, shamans and others try to help us focus on now -- independent of how now compares to yesterday, or what now may mean about tomorrow. If you can genuinely learn that trick, you have accepted that pieces of life suck, and you have strapped on a very protective helmet.

Tomorrow I'm riding the suicycle-- no need to lament what or how I used to ride, and no point in fretting over his much longer I would be able to get lashed to the beast. But I do have a solid reason to wear a helmet. Yes, I do.

Days 968-971, March 7-10, 2013. There we were, minding our own business, rolling through an empty intersection, and when Dan and I hit the gas on the tandem, a nasty crunching sound was followed by an equally nasty growling sound. We had torn through a weld and into one of the tandem’s structural tubes. Even though modifications we have made to the tandem have nearly doubled the amount of power that can be applied to the machine, this was – obviously enough – a warranty issue. That’s the good news. The bad news about a warranty issue is that it typically takes weeks to resolve one. Then there is also the “how do we get home?” issue.

Dan, John and Paul cut through the latter problem with a combination of zip ties, duct tape and power bar wrappers. There was an amusing moment (from my comfortable seat on the back of the tandem) when Paul was on the phone with his office trying to track down some tools, Dan was on the phone with a welding shop trying to assess whether we should take the tandem there for an attempt at an immediate repair, and John was on the phone with the bike shop, Two Wheel Drive, discussing the warranty. All this was happening on the narrow shoulder of a heavily travelled road alongside a gravel pit, a concrete plant, and a road construction company.

After we limped home, the Brain Trust decided we should take the tandem to Two Wheel Drive. Dan and John loaded the tandem and a bottle of rum into Dan’s truck and drove away.

Two hours later, they reappeared, slightly rum-soaked, but justifiably proud to show us the fully-repaired tandem. In a highly unusual warranty claim process, the good folks at Two Wheel Drive disassembled a bike they had on the floor and replaced the broken tube on our tandem. Thus, what we feared would be weeks out of service turned into a few hours. For this kindness, we did our best to say thank you in the language of bike people.

 

DON’T FORGET! OSO HIGH MTB RACE IN ANGEL FIRE JUNE 8 -9!! MARK YOUR CALENDAR! MAKE RESERVATIONS EARLY BECAUSE IT’S A VERY BUSY WEEKEND AT THE RESORT. 575-366-6401.

Day 967, March 6, 2013. The Return of the Suicycle. Jean asked for a promise: "you won't ride if you feel unstable or if you think it's a bad idea." I responded with a counter offer: "I won't ride if it feels unstable or if I think it's a worse idea than it was five weeks ago". Jean gave a dismissive wave of her hand under a slightly disgusted frown, and returned to the crossword puzzle.

Paul, John and I made our way to Balloon Fiesta Park, mounted up, and took a few cautious circuits around the launch site. One of the three of us accurately described me as "nervous as a whore in church" before the ride, but, as things progressed, I became more comfy, and I was even able to determine that the ride was not a worse idea than it would have been five weeks ago. It clearly was a bad idea, but that was cast in stone when I bought the suicycle a year ago.

I think what this means is I'm going to race the thing at least once this season -- most likely the UCI event in Montreal. What, if anything, comes after that will be subject to negotiation, assuming, of course, that I keep the rubber side down between now and Montreal's Defi Sportif Alter Go (French for "sporting event utilizing modified equipment that is far more dangerous than normal stuff, such as the suicycle").

 

    

Day 966, March 5, 2013. When I said I'd be off the bike today resting, I was mistaken. Jean is heading out of town for a 36 hour assault on her liver and those of four of her sisters, so she was in a bribing mood, and bought my right to whine by offering a tandem ride on her last day in town.

We did a 16 mile sprint with our buddy John Blueher, and I took a vicious nap after.

AHS Sports Update. Jimmy is going to be playing college soccer. The question is: where? Your first clue as to schools in the running:

maybe southwest,

perhaps southeast or northwest,

but I've got my money

on one of '12's 16 best.

Day 965, March 4, 2013. So the post I put up yesterday represented the longest gap in postings since I opened the blogs over two years ago. Why for did that happen?

Here's the primary reason. Most days since the accident I have felt only like sleeping, riding or doing one other thing that relates (linguistically speaking) to the other two. I have not had any interest in sitting at the computer to take care of any of the things it can help me accomplish.

Bills have gone delinquent, emails unanswered, and I have even lost track of college basketball and the NFL combine.

I have descended into a swamp of recurrent anxiety. However, it appears I have only been visiting. In "Goldeneye", James Bond drives a motorcycle off the end of a runway that ends at the top of a cliff. He is in pursuit of an un-manned airplane that preceded him over the precipice. He abandons the cycle, goes into an aerodynamic tuck (which, as you would expect, makes him faster than an airplane), he enters the plane, seizes the control stick, and begins pulling up. His face is crimson, veins bulging from his temples and neck, eyeballs protruding and teeth clenched. At what seems like the last possible moment, the stick succumbs to his efforts and the plane begins to defy gravity.

Probably a bit dramatic, but, like 007, I feel myself regaining control. Keys to the recovery have included: 1) riding; 2) meditation; 3) riding; 4) that thing that is linguistically related to sleeping and riding; 5) riding; and 6) listening to a psychiatrist say "under the circumstances, I'd be more worried about you if you told me you weren't experiencing anxiety". Oh, and 7) Friday Night at the Movies, a budding tradition at our house that you want no part of if you're hoping to watch the movie (or if your cholesterol is high, because Tim Holm stops at KFC on his way).

Today is the fourth consecutive day I have been on the tandem. All of the rides have been fairly high levels of effort. We have put in about 70 miles. It has been the toughest stretch of days I've had in well over a year. And I want to go again tomorrow.

 

I'm not going to -- tomorrow I'm going to sleep, quite possibly all day. Wednesday, however, I'm going to get back on the suicycle with the help of John Blueher and Paul Mohr. I'm pretty sure I hope it goes well. I'm certain I hope to keep my melon off the deck.

Days 949-964, February 16-March 3, 2013. "Go the &#!@ to Sleep". A children’s book by Adam Mansbach, has a special place in our bedroom in the days since the suicycle crash of 1/31.

I don't mean to suggest the book is in our bedroom, but I do hear Jean recite the money line from the book at least one time each night, and sometimes many more.

Dig, if you will, a picture. Your husband lies next to you in your bed. He's 6'1", 160 and 52 years old. He can't lift either arm from his side to his nose. When he sets about the task of rolling to his side from his back, the opposite arm gets left behind like it's nailed to the mattress. Once he makes the roll, he will find himself on top of the sheets that had been hanging over his back. These sheets will bind him up like a straitjacket. Also, when he rolls, his pillows will slip from their correct location and result in a very real breathing hazard. He will initiate at least three significant repositioning sequences every night. For the rest of his life. Well, until he no longer has the strength to initiate a roll, after which you will have to roll him. Every piece of the step-by-step needed to accomplish the above falls in your lap. Every night. Even if you've had an objectively rotten day.

This is what Jean faces every night. And she is not, by nature, at her best during the middle of the night. When our children were nursing, a 3 AM squawk from a precious little one often was answered by a low level growl from Jean followed by the rustling sound of a pillow being pulled over her head. Our kids should worship mama for enduring labor and delivery, but I carried the water on answering the call of the midnight munchies.

So, when I roust sleeping beauty from blissfully slumbering, I know I'm grabbing a tiger by the tail. Jean's unfiltered reaction to "honey, please move my left hand from my ear to my hip" would be to scratch out my eyes and shove them down my throat, so I am grateful beyond measure that what's been happening is she quietly complies, then asks whether I need anything else, and then -- get this -- kisses me before she settles back into the sheets. Three times -- minimum -- every night.

When I'm feeling sorry for myself (and I'm doing that a lot more these days) I try to remember how lucky I am to be surrounded by so much love.

Last week, we were waiting outside UNMH's neurology clinic waiting for our turn at the ALS Clinic. The Clinic concept is a turn of compassion and genius. Specialists in areas of concern to ALS patients gather at the Clinic, and they rotate through the rooms where ALS patients are waiting. This is probably very effective in big cities where there are lots of ALS patients -- enough, perhaps, that a respiratory, physical, occupational or speech therapist might see ALS patients exclusively or at least predominately. That is most definitely not the case in New Mexico.

UNM Hospital estimates that there are about 80 people in the State living with ALS, about 50 of whom receive care at UNMH. If all of us went in every month, that wouldn't be full-time work for anyone. Of course, we don't go in every month on account of because of the fact that there is no treatment for ALS, so the only apparent purpose for scheduling a regular visit is so they know how long we live.

Where the therapists have lots of ALS knowledge, they are probably very helpful. Here, they are just very compassionate, friendly and nice.

I keep threatening to go to a big neuro center in Dallas for a Clinic visit. That would kill two birds with one airplane ticket. First, I could find out what the people with real experience know, and, second, I could stop by Cowboys Stadium to pee on the logo.

So there we were, waiting for our turn. A gentleman about my age said "excuse me, do you mind if I ask a personal question? Do you have ALS?" My instinctive response ("mind your business, you racist! ") was so obviously inappropriate, I resorted to the inconvenient truth ("yes").

The man walked with a cane, and his speech had the quality of mine during a time we now refer to wistfully as the "good old days". As we talked, we learned he was diagnosed a bit more than a year ago, and that he lives alone in Santa Fe. With respect to his living arrangements, he said, in a matter-of-fact tone "that will have to change".

What, exactly, does that mean? When I'm feeling sorry for myself, I need to remember just how good I've got it. The man we met at Clinic was on his own last night and this morning. Meanwhile, Hilma Chynoweth brought us a delicious enchilada dinner, while her husband, Jim, brother-in-law, Phil, and nephew, Jeff, played an acoustic concert in our living room. This morning, Jean helped me out of bed, got me dressed, fed, and on the stationary bike for a workout.

If, from time-to-time, Jean needs to tell me to "go the %@#$ to sleep", I think that's probably just fine.

If you have someone who needs to go the @!#% to sleep, click here.

Days 945-948, February 12-15, 2013. Here's a bike crash silver lining: I'm getting a little bit better every day, instead of the other thing. That is a big change from the usual order of things with ALS. I'm not sure I would go so far as to say a good crash every few weeks would be good for the soul, but, you know, I'm just saying.

A lot of riding this week. Monday, Wednesday, Friday and Saturday. All of it was on the tandem with some combination of Paul, John, Dan and Jean. The weather varied from k-rap to beautiful, unseasonably warm/exhibit "A" to climate change paper.

My legs feel good -- strong and durable. But my balance is all dopey. I'm falling back on the "use it or lose it" theory. Three days in the hospital during which I didn't walk a step took a toll. I'm walking slowly and tentatively with the walker, and I feel about as stable as North Korea.

AHS sports update. Abby's swim team season ended today as she set a personal best time for 50m, which put her right in the middle of the pack in her varsity district meet. We think this is sort of a big deal, as she spent the early season workouts essentially learning to swim, and made her way to varsity by working hard all season.

On the boy's side, Jimmy decided not to play baseball for the first time since he was four years old. This makes us sad, but not because he's been spending the extra time on X-Box. He is actually quite focused on the college soccer recruiting game. There are many complex scenarios, but the highest likelihood is that he will wind up playing collegiate soccer at a Division I or a Division III school. He is away in Phoenix this weekend playing in a showcase tournament designed to put players together with college programs. The star of the weekend's coaches in attendance from our boy's point of view is the head coach of our own UNM Lobos.

Last issue in our sports segment is track. Abby starts this coming week and there is an interesting question about whether I will be coaching this year. I'm more mobile than I was a year ago on account of because of my wheelchair. On the other hand, I have lost lots of ground in the "say whaaat?" category (meaning that people often say "what?" after I speak). We'll see.

Days 943-944, February 10-11, 2013. Have you ever bottomed out a vehicle on a rough road? Unless you performed a particularly enthusiastic bottoming out, your vehicle rebounded rather than forever scraping its underbelly along every road surface it encountered for the remainder of its serviceable life. For those blessed with reasonable resilience, the same is true of humans.

We might bottom out from time to time, but we typically recover to continue the relative smooth sailing of our day-to-day existence.

Good damned thing.

Today, with no specific triggering event, I bottomed out. It came to me while I was kicked back in my recliner watching re-runs of Breaking Bad. I broke into a cold sweat having nothing to do with the severed human head rigged by booby trapping to an exploding tortoise on the TV screen. My heart rate increased (also unrelated to the turtle bomb). I felt like a large man was seated on my trachea to the point I could see the air leaving the entire room.

I was convinced I was dying -- not just certainly and sooner than my life's plan, but imminently and with shocking speed. The wave of panic ebbed and flowed for hours until Jean and I settled in for a nap. I fully understand that nobody has ever gotten out of ALS alive, and the source of my distress wasn't a temporary lifting of the veil of denial. It was far more pragmatic. Things that came to mind were items from my to-do list. The files are not in order. I haven't written a list explaining what bills get paid automatically and which must be individually paid. Tell someone where the bones and the treasure map are buried. Then it went from there to things I haven't said to Jean, our kids, my parents, family, friends... At some point I began to realize I actually do have much more left to work on than my knowledge of Saul Goodman's many ethical transgressions committed in the course of providing legal advice to Walter White and Jesse Pinkman.

So, by the way, do you.

Maybe my experience bottoming out can do more than just scare the piss out of me. Have a look at your to-do list. Is the important stuff even on it?

Days 941-942, February 8-9, 2013. Back on the bike. The trike anyway. Well, the tandem anyway. This afternoon John Blueher and Dan Porto came over after their actual bike ride and got me into the tandem. I actually felt more comfortable than I have all day. My ribs are not an issue, and my right shoulder blade is supported adequately by the slings already in place on the tandem. We took a couple of laps around the park to see whether things work properly (yes) and the plan is to ride tomorrow. While we were in the garage, I had my first look at the suicycle since the accident. There were no claps of cranial thunder accompanied by flashbacks to the crash. Looking at the trike you would never know it was involved in a brain scrambling episode. It looks just perfectly happy and ready to go back out. It frankly looks a little pissed off at me for having ignored it for the last eight days. I tried to avoid eye contact but it's pretty irresistible.

I remain fascinated by the notion that the accident erased my memories from before the event. I understand that I might not remember the impact, but John and Paul have described some specific things that happened leading up to the crash that are nowhere on my hard drive.

I feel like I should be able to get back on the suicycle within a few days. There is a minor matter of negotiating with my family. But I'm a persuasive guy, so I feel good about the likelihood of success. The key arrow in my quiver is (uh oh, Jean was reading over my shoulder). As I was saying... My wife is the most beautiful woman in the world. The love of my life. My best friend. Okay, she went to open some wine and she's having a hard time picking between a cab and a pinot, so she's focused.

The winning argument, I think, will be that the accident was not my fault. Now, that could be spun against me ("you can't control when someone might wipe you out and the next one could be The Big One"), but I feel like I have a powerful retort for that ("pretty please..?") Uh oh, Jean got her wine.

Here's how I assess the situation. I wasn't very good at riding the machine before the crash, so it shouldn't take long to get back to where I was, and the email from USA Paralympics that showed up while I was all wacked out on banned substances explains the qualification criteria for the world events this summer, and I'm just stupid enough to think I might be able to be in the hunt for a spot on the US Team for the World Championships. I'd rather be suffering from delusions like this than trying to come up with my daily plan for being moved around enough to avoid getting pressure sores.

Days 933-940, January 31-February 7, 2013. "Boom, boom! OUT GO THE LIGHTS!" So Thursday afternoon was a beautiful day for a ride. John Blueher, Paul Mohr and I decided to take the suicycle to the bike path for a couple of 10km sprints.

The last thing that I remember (this is not take a good way to start a sentence that is not about falling asleep, and this sentence is not about falling asleep). The last thing I remember, we were southbound with about 2-1/2 miles remaining. I don't remember the crash. I don't remember something happening that caused the crash. I just remember riding along all Lance Armstrong-like (except slower and with my own blood and my own supply of testosterone), and then I remember being in the Emergency Room. Nothing in between. No white light. No dreams. No one asking "how many fingers am I holding up? " or "is the Dow above or below 12,000? ".

Riding, and then the ER.

What we have been able to piece together is that we passed two kids who were trail-side talking. One was wearing white, the other was wearing the uniform of a local youth race team, Active Knowledge. The one who was in white looked at the suicycle and yelled "that's [really, really] awesome". Within a couple of minutes, the pair caught us, passing together in the left lane (there is not enough room on the path for me in one lane and two normal bikes passing me shoulder-to-shoulder in the left lane). One of the kids clipped the left rear wheel of suicycle with his right pedal, and all three of us went down. I went over my bars and landed on my face, right shoulder and and both knees, then flipped over to scrub my neck and ribs on the asphalt. In the end, the boys walked away. I took a ride to the trauma center at UNM Hospital.

There was damage: concussion; internal bleeding in the brain; bruised pancreas; five broken ribs; broken scapula, cuts and abrasions.

My 48 hours in the hospital are a morphine and oxycodone-inducuced fog. Same for most of the time after, but I do clearly recall the sound and sensation of a rib re-breaking on Tuesday night.

The good news... No damage to the suicycle.

Days 931-932, January 28-29, 2013. Jean says the blog hasn't been funny in "over a month". She must have overlooked what I said about Wayne LaPierre and the story about the beer's volcanic reaction with my feeding tube (among others).

However, we here at Oso High Endurance Sports are responsive to reader feedback (even when misguided or motivated by ire after catching me and my mom trying to figure out how to get me on a treadmill at the gym after having specifically refused to do so herself -- hypothetically speaking).

So... Here's an outtake from Lance Armstrong's interview with The Big O:

"Some of the accusations really make my blood boil... [chuckling] Good thing I have plenty more in the fridge".

Or... Dr. Ferrari's assessment of the confessions to Oprah: "That took a lot of ball".

How's that, haters?

Days 925-930, January 22-27, 2013. The one that got away. Ever notice how you remember the one that got away better/more clearly than the one you got? The fish, the girlfriend, the 90 that could have been an 89 if that putt had only fallen, the real estate deal that went south, the pass you dropped... Whatever arena -- the chance you missed.

Maybe I'm unusual that way, but I remember these things and more. I can describe in far more detail my fourth place finish in the 400m hurdles at the World Masters' Games (the one where I misjudged the tenth hurdle and wound up taking 19 steps between the ninth and tenth hurdles instead of 17 as I intended) than I can tell you about my first place finish in the World Masters' Games where every hurdle must have been just about right.

Same for my law practice. I remember the objections that were overruled but not the ones that were sustained; I remember the motions I lost with painful clarity, but little of those we won; trials; appeals; arbitrations. But the ones that really stick under my saddle are those that, in a fair and just world (where I was reasonably smart and quick on my feet), I should have won. The ones where the only explanation for the outcome is that something went terribly wrong and I should have been able to stop it.

In 26 years of practice, the big one was Title IX, the 1972 federal legislation that told schools they could not discriminate based on gender. This is the law that got girls and women, in droves, onto the courts, ball fields and tracks of our nation's schools. It was too long coming, well-conceived and beautifully written. In 1979, however, something happened that has allowed Title IX to become a favorite tool for man-haters and a favorite scapegoat for university beancounters. The language of the law is clear and simple:

No person in the United States shall, on the basis of sex, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any education program or activity receiving federal financial assistance.

The practical problem -- if you own a university, how do you know whether you are in compliance?

In '79, The Department of Health, Education and Welfare (now the Department of Education) announced a three-part test for determining compliance:

1. Providing athletic participation opportunities that are substantially proportionate to the student enrollment. This prong of the test is satisfied when participation opportunities for men and women are "substantially proportionate" to their respective undergraduate enrollment.

 2. Demonstrating a continual expansion of athletic opportunities for the underrepresented sex. This prong of the test is satisfied when an institution has a history and continuing practice of program expansion that is responsive to the developing interests and abilities of the underrepresented sex (typically female).

 3. Accommodating the interest and ability of underrepresented sex. This prong of the test is satisfied when an institution is meeting the interests and abilities of its female students even where there are disproportionately fewer females than males participating in sports.

So, if you owned a university, you could show how things were getting better for female athletes (whatever that means), you could construct an interest survey, or you could do a little math. And, assuming you had people on hand who could do 7th grade math, there would be no argument about whether you were in line with the law.

Guess what most schools chose as their path to compliance? Yep, prong 1 -- the "proportionality " test. Here's how it works. Let's say your university has 10,000 students, 55% of whom are female, and 45% of whom are male (this is about the national average). You count up the number of athletes you have in your various sports. If at least 55% of the athletes are female, you are golden.

As a result of Title IX, the number of student-athletes in our colleges and universities hit an all-time high in the late 1970s. The three-part test, however, began thirty years of declining participation in athletics early in the 1980s. The slide continues.

Why did this happen? Let's go back to our hypothetical. Assuming only 50% of the athletes turned out to be women, what do you do to get that number up to 55%? Do you add a women's ski team? No -- that's expensive. You start cutting men's programs. You start with wrestling because there is no women's equivalent. Not enough? Keep women's track but get rid of the men. Same with gymnastics, swimming and soccer. Do the numbers line up? Good. Send your report in to DOE, slap yourself on the back and move on to something else.

The next Fall you run the numbers again and you're back to 50% again. What the...?

When you dig into it, you find out that women are dropping out of track, swimming and gymnastics. Why? Because training, travelling and competing alongside the men was good for the team's performance, and, quite frankly, more fun. Scratch men's golf. Pour a glass of sixteen year-old single malt scotch and call it a day.

A moment for reflection. How has all this increased opportunity for women? There are no new sports for women, and actually fewer women participating. So let's seeee... Well that leaves more money in the athletic budget to spread around, right? More likely the savings wind up on the football field. That or the regents take credit for coming into compliance with Title IX AND saving almost a million bucks. No need to go through the details of how they saved the money in the press release.

The legal problem with the three-part test is that the test is a "rule". Government agencies are allowed to make rules to help enforce the laws they are required to implement. All they have to do is publish the proposed rule in the Federal Register, allow public comment and get congressional and presidential approval. You know, a lot like you did when you did that thing last week.

Here's the rub -- DOE never did this for the three-part test. Really.

So all you have to do is tell a judge about it right? Well, not exactly. When a university takes an action like killing a sport, a court will not even address questions about the legal basis for the action if there is a permissible factual basis underlying the decision. Something like cost. In virtually every situation where a university cut sports in the name of Title IX, the decision also included some reliance on the need to reduce athletic department expenditures. This financial issue was the skunk on the perfume counter. Constitutional and other arguments about the three-part test (the perfume) might have been lovely, but the courts never noticed because a university has vast discretion in how it spends its money. The finance skunk overwhelmed the niceties of the arguments about how the three-part test was a pile of crap.

Until James Madison got into the act. JMU, my beloved alma mater, announced the elimination of its men's track, gymnastics, swimming and wrestling programs in 2007. I waded into the fray with a couple of letters to my friend Linwood Rose, the university's president. Somehow I wound up linking up with a brilliant D.C. lawyer named Larry Joseph, who had been beating his head against the three-part test for over a decade. We teamed with my law school classmate Tom Miller in Roanoke, and we filed suit against the DOE and JMU on behalf of a group of students.

Why did we have a better shot than those who had gone before us? JMU's board of visitors gave us a gift. When they announced their decision, not only did the board not blame it on money, the board affirmatively stated that they had plenty of money and that Title IX was the one and only reason for eliminating the men's programs. The record was perfect for focusing the court on the three-part test. The facts in the case were so good for us that some of the more aggressive Title IX advocacy groups were actually suggesting that JMU was intentionally setting up the three-part test to get knocked down by our lawsuit.

When we went to court in Roanoke to ask for an order requiring JMU to rescind the cuts, JMU presented no witnesses and didn't even bother to cross-examine ours. We had a female pole vaulter talk about how the loss of the men's program would damage the women's team. Larry delivered a brilliant argument explaining the importance of the fact that DOE had never gone through the rulemaking process. I gave a tear-jerking constitutional equal protection talk while the defense attorneys stared at the ceiling. It couldn't have gone better. And we lost. We appealed to the Fourth Circuit in Richmond. We lost and were sent back to Roanoke, where we lost again. Back to the Fourth Circuit. Turns out they meant it the first time. Then we asked the Supreme Court to hear us. No. Game over. So now, if you go to JMU and you're good enough, you can run, swim and gymnasticize... As long as you are not a dude. And there are fewer women participating in JMU'S athletic programs than when I graduated in '82.

What happened here? I'm not asking why we lost, I'm puzzling over why the one that got away stings so much more than the one we got provides comfort.

I think it comes down to what is fair and just. I don't fret over losses that I should have lost. Those were fair and just results. If you are one of my kids reading this, what I hope you will take from this is: fight for what is fair and just -- it will save valuable space on your cerebral hard drive if you go ahead and win when you should. And, in every aspect of life, be very afraid of a sure thing. Oh, and if you become a lawyer and someone ever says to you "properly argued, you can't lose," become immediately sick and get someone to fill in for you.

Days 921-924, January 18-21, 2013. Back to the mountains. Another Angel Fire weekend with our family, Paul Mohr, John, Kim and Clayton Blueher. I got out twice -- Saturday and Monday. There was some falling, yes there was. But I felt like there was more stability generally. Except that time when we were getting off the lift and I went hard right between the electric panel and the trash cans. Well, and that time when I scrubbed my face on the snow in such a manner that I had to spit out chunks of ice crystals once someone turned me over. Except those times I was far more stable.

Apres ski on Saturday Paul, John and I learned an important lesson about my feeding tube. I have previously lamented that beer no longer tastes good. Every now and then, I have a sip or two that doesn't taste like ass, but I rarely get past the bottle's neck before I have to put it down. Such was the case Saturday evening. So I have a feeding tube - why not use it? Paul filled the big syringe with Sam Adams, and John stood back as Paul opened the valve to let the beer flow. It didn't work out the way we planned... The beer sprayed up in a geyser-like plume mixed with foam and some other stuff that just had to have been part of my lunch.

We spent a good while in a futile attempting to cobble together an explanation for what we had witnessed.

The remainder of the weekend was less mysterious. Sunday I spent 10 hours in a recliner watching football and resting up so we could head out again Monday instead of watching the inauguration.

One reflection on the day in the recliner, in the form of a note to self: don't do that again. It was terrible from so many angles. Everyone else was skiing or doing something sort of fun. The recliner is neither self-loading nor self-exiting. Which is to say, once I'm in it, I'm in it -- with or without a house fire -- until someone rescues me. Joints that don't move much anyway get stiff. Everything itches. Muscles get stale, by which I mean they get fatigued from doing so much nothing that they stop cycling out waste and the mitochondria all fall asleep which causes the body to release lactic acid that has the effect of creating a pain/fatigue sensation virtually indistinguishable from how I used to feel after working all day with a chainsaw.

I'm just like a shark -- gotta keep moving.

Days 918-920, January 15-17, 2013. I just re-read what I posted yesterday. Someone must have spiked my Diet Coke. The World Cup in Spain? Yeah, and monkeys might fly out of my butt, too.

I left out some important information that is pertinent to considering how much racing I should do. I have gotten much slower in the past few months. In August, I was doing 20km in about 42 minutes (the National Team standard is around 45 minutes). Now I'm pretty consistently popping off 20K in over 50 minutes.

What happened? Well, when I roll over at night, my medial femoral condyles (knee bones) bang in to one another, as do my ankle bones. Also, my tibias ("tibii"?) generate enough friction between them that I find myself wondering whether they might ignite (this happens at night when my wits could be somewhat scattered, and it is very dark). What I'm saying is there is evidence I'm losing muscle mass in my legs. As my speed began to falter I looked for any reason other than "getting slow". I ran each of the following up the flag pole: My shifter isn't working right. Tire pressure is low. I'm too tentative in turns because my brake levers are not properly positioned. I think my right brake is rubbing. I'm sitting up too high. My saddle position is too far high/low/forward/back. The handle bars are too wide/narrow/high/low. My cleats need to be mounted farther back. My chain needs lube. I should use my Zipp race wheels. My cadence is too slow/fast. I need more /less caffeine/muscle relaxer/nachos/french fries.

After over a month of carefully designed testing, I have ruled out every alternative cause, leaving me with the inescapable conclusion that I am just getting suddenly and dramatically slower. And the most likely cause, given the timing is my use of a wheelchair. True, I wasn't really walking around all that much before the chair arrived. And true, I might have fatally spilled my brains as a result of a bathroom fall by now if I didn't have the chair, but, as I've said before, the ALS muscle mass rule seems to be "use it or lose it". And that's during the easy part of ALS. At some point, the rule becomes "use it and lose it anyway".

After the World Cup in Rome last May, I drafted a blog entry saying, roughly, "this ain't Make-a-Wish, it's bike racing". I was all jacked up after Rome, convinced I could smoke the French rider if I got another shot at him. Jean correctly pointed out that I would go straight to Hell, without passing "GO" or collecting $200 if I published it in that fashion.

This year it ain't bike racing, it's Make-a-wish, and I’m fine with that. If I'm able to pull on that USA jersey and roll up to the starting line even once this season we'll go ahead and call it a "win" even if I wind up a distant DFL (that is bikespeak for "dead... last"). I'm throwing the party after if it turns out I can make the suicycle stop at the end of the race.


 


 

Days 914-917, January 11-14, 2013. Back on the suicycle. Christmas Eve was my last ride on the paracycling-legal, street-stupid, death accelerator we lovingly refer to as the "suicycle". Any time I'm off the thing for more than a week, there is a good chance the machine is lurking in the garage with a new problem for us to confront. The suicycle has a favorite target arena -- things I do with my hands, usually braking and shifting.

The surprise on tap for the first ride of 2013-- that there were no surprises. That's right, when John Blueher and Paul Mohr got me on the trike, I could still make it go and stop. Now I need to be clear. If you're getting a visual of me hopping on the trike and buzzing through city traffic, deftly handling the trike all Lance Armstrong-like, let's reset our cerebral cameras, hmmkay?

It takes two people (plus me) to get me on the trike, so that's a total of three (including me). Once my leg has been hoisted over the top tube and my shoes are clipped in to the pedals, I need to be secured to the handle bars. This, we accomplish with the assistance of velcro. Shifting is hit-or-miss. Braking is always terrifying, and the suicycle would always prefer to flip over rather than negotiate a turn (in large measure, this is due to the fact that I am the least aerodynamic thing to ever be placed astride a cycle, which positions my center of mass about six feet above my head).

Practically speaking, this means that I am reasonably safe riding a closed course that is arrow-straight, pancake-flat, baby's butt-smooth, and not being used by any other riders. There are lots of race courses that fit this description, especially like well in nowhere.

Speaking of Lance Armstrong, a year ago, he had seven more Tour de France wins than I did, and now we are tied. Not only that, but I'm eligible for this year's Tour. So I'd say that I have an edge on him right about now. Aaand in our three head-to-head matchups (Leadville 100 in '08 and '09, and the Tour of the Gila time trial in '09), guess what?!

So in the "next up" box above I have the start of the paracycling season in April. What will that look like? Good question. I decided to skip the Team USA Training Camp in Orlando next week because... Well, because I would be slower than all the other riders and therefore lonely during group rides. Here I can ride with Jean, John, Paul and Dan and I know the quality of the humor.

 

When the racing starts, all eyes will focus on the UCI World Championships in Baie-Comeau, Canada in September. In all likelihood, if I can still race by that time, I would qualify the Worlds, however, as with the same Paralympics in London, Team USA will be comprised of the athletes who are fastest, not in relation to each other, but in relation to the standard set for the ability classification for each athlete. My classification category is called "T-1", which means I ride a trike, which ranks first in terms of risk associated with paracycling. In absolute terms, T-1 is the slowest category of riders in paracycling. This means there is no place for me to downgrade to where my abilities will be more on par with others in the class. I'm already as downgraded as you can be.

The racing calendar looks like so:

  • Early April: Redlands Classic. California. Not part of the team's calendar, but would be fun because the event is massive (all disciplines of biking, ergo, much beer).
  • April 20: Greenville (SC) Paracycling Open.
  • April 28: Defi Sportif (Montreal) Intermediate level UCI paracycling event.
  • June: UCI World Cup event in Segovia, Spain.
  • July: USA Cycling Paralympic Nationals.
  • August: UCI World Cup event in Mantane, Canada.
  • September: UCI World Championships in Baie-Comeau, Canada.

If I were as healthy as last summer, I could theoretically do every event. But that ain't the way ALS works. More likely than not, the suicycle and I will be legally separated long before September. Also, I was lucky to leave Baie-Comeau with my skin last year, and even if I can still technically ride the suicycle eight months from now, I'm not going to get better at managing downhill chicane turns. Not gonna happen.

So I want to target an event to be my retirement event. I don't want to be too optimistic and then be disappointed if we don't make it. More importantly, I don't want to do the harm to domestic tranquility necessary to negotiate a lengthy travel schedule, only to have it fall apart from my end. So, after due consideration of the foregoing (consisting of staring at my computer for about five minutes after writing the previous sentence), here is the plan: I will race two of the April events (the two with the most flat/straight/smooth courses), Segovia (if flat/straight/smooth), and retire after USA Nationals in Wisconsin.

Please don't tell Jean any of this until I have a chance to negotiate. Thanks much.

Days 911-913, January 8-10, 2013. The health club continues to bear bad news. Early 2010 I was in the diagnostic process that eventually led to ALS. While I was convinced I had it right and the doctors were all wet, I began to see my upper body strength flagging dramatically. First went the pull-ups. In January, I was doing three sets of six with no assistance. By the end of April, I could no longer do any. It was frightening to go to the gym. I charted my workouts in the weight room three days per week. It was impossible to ignore the declining numbers. It would start with a given weight becoming more difficult ("hard ride yesterday", I could easily rationalize). Soon, I would have to peel off the plate and replace it with a smaller one, then smaller still, fewer reps, fewer sets, less weight, smaller bars, different apparatus, then, finally, no weight at all, no bars, and the inability to even move my body through the range of motion required for the exercise. A long process to be sure. I reached the end point with shoulder press and bench press late last year. I'm very close to that point with arm curls. And I'm just now peeling plates off on lower body exercises.

So not dozens, but hundreds of trips to the weight room have been as appealing as a perp walk. My training buddy, the grim reaper, always at my side and willing to help out by slipping off another plate. The card stock charts I have maintained at the club to meticulously track my regression are also a visual record of the disease. They begin with my sloppy but unimpaired notes from 2009, when I was keeping track of my left shoulder's recovery from an inverted mountain bike crash that left me wondering if I would learn the answer to this question before I passed out: "how many times can I cough without inhaling?" By the end the record is chicken scratch from me writing with a pencil clenched in my teeth.

Then I have the days I went in for a cardio workout and left with a brown bag filled with steaming, stinking yak turds and a small, timed explosive device. These results have generally come in less dramatic fashion. I might see a 5-10% drop in performance over several months, but nothing that would have me leave the club with my tail between my legs. Until recently. In 2012, my trips to the club tailed off. Partially this was from vanity. There is nothing chiseled or "cut" about my appearance. Through a t-shirt my arms seem to be connected to my torso by way of a nail, rather than a healthy ball and socket joint covered by layers of happy deltoid.

Mostly, though, I stopped going regularly because it was no longer practical to do so. I haven't driven a car since December 2011, so there is the problem of getting there. Once I got through the door, the challenges multiplied. I needed a movable bench for several exercises because the easy-to-use machines don't have resistance options low enough for my capabilities. I would drag a bench to a relatively private spot where a rack supported a bar I could use without a high likelihood I would wind up with the bar crushing my windpipe if I failed to lift it while it was loaded with a five pound plate on each end. By the time I gave up on my trips to the gym, I could no longer move the bench, which meant I would have to ask for help. My options were untenable. I could ask a relatively strong dude, but he would scoff at my weakness and make me feel bad. I could ask an obviously scrawny dude, but he would scoff at my weakness, and so would the strong dudes at the sight of me needing help from the girly man. Or I could ask for help from someone who would not appreciate my weakness -- someone who would also find the bench heavy. Perhaps a pudding-filled new year's resolution club member. But what if he or she couldn't do it without help? Then there would be the sight of the two of us struggling to move the 50 pound bench as if we were trying to boat a marlin. The only graceful way out of that would be to slap him or her on the back and offer a jolly "see, that wasn't so bad -- I hardly touched it -- you can definitely do that by yourself", and then walk off to the water fountain. Alright... Vanity was the only reason I quit going to the club.

The last time I went was about a month ago and I discovered I couldn't use an upright stationary bike. I went back today because it was cold outside. I figured I could get in a solid workout on a recumbent stationary. Jean needed a workout, too, so she could get me set up and then go do her thing.

Not so fast. I couldn't find a place for my arms. The bikes have arm rests, but they are narrow and the motion of my body was enough to dislodge them. My lap wasn't a bad choice, but when I put them there, I had no lateral support for my body to counter the rolling of my hips, and that left me rocking back and forth like I was shadow boxing. This is no way to ride a bike, so I tried to focus on the pivotal Mississippi basketball game showing on ESPN, but Jean picked up on the futility of my effort and we gave up. ALS ruined workouts for both of us tonight.

Day 910, January 7, 2013.

Robert Eckhart (second from the right).

 

Our 37 year old nephew. ALS sucks, but some forms of cancer suck way more. Robbie had one of those.

Days 907-909, January 4-6, 2013. After a couple of days off (with a recumbent indoor ride on Wednesday to help massage my bruised ribs), we armored up to try again. Jimmy has gone home to a goalkeeper camp at UNM. So we have my dad, Abby, one of her friends, and Jean. After thinking through the possibilities, we came to the conclusion that this might not be enough people power to get me vertical if I let the mountain get western on me again.

In 2008-10, I taught some adaptive lessons for Angel Fire. By the end of that time, my weight limit for students had plummeted from 250 to 100 pounds. Seeing no customers standing in line within my remaining competence, I turned in my "bend your knees" speech in early 2011.

We called our friends Robin Mays and his assistant Jessica at the Angel Fire Resort Ski School, and they loaned us an instructor with healthy intervertebral disks who promised to scrape me up if/when I smashed my melon onto the nearly bulletproof surface that is the result of thousands of guys named "Bubba" enjoying the two weeks of the holidays with about five inches of new snow.

We met Chris at the end of the road at 12:15. Jean breathed a deep sigh of relief when he showed up because she knew I would argue for going with or without him, and her heart wouldn't take it. In about an hour and a half we made the full lap from our road to the base, up to the summit and back to the truck. No crashes, which was a nice touch, and Jean told Chris (quite happily) that he had been "completely unnecessary". Chris looked sad but then looked happy again when Jean dumped the contents of her purse into his hands for a tip. Chris thanked her for the cash, declined the mascara and was on his way.

Video clips on The YouTube: skiing, click here; falling, click here. The skiing is from today, and the crash was several days ago. My dad intended to get some better quality video of a crash today, but I spoiled that plan by not falling. Or did I already mention that?

We are back from the cabin now and I've watched the skiing video many times over.

To be clear, this is me skiing (click here), and this is me walking (click here). It might be more amazing to me than to anyone else, but I ski waaaaay better than I walk.

Here are some observations about the skiing part of our holidays.

  • I ski better than I walk.
  • I was surprised I could ski at all.
  • I thought that, if I could ski, it would be easier than it was.
  • I have lost serious leg strength since March.
  • Being my ski buddy is horrifying.
  • Especially if you are my wife.
  • Walking me to the snow from the car is even worse.
  • I ski better than I walk.


 


 

Days 905-906, January 2-3, 2013. It's difficult sitting on my butt all day in Angel Fire. In the eight years we have had our cabin, I never missed a ski day to do something cliché like curl up by the fire with a book. I would go out with Jimmy an hour before the lifts opened, ski a full day, then go out with Jean for a sunset snowshoe (don't be fooled - these were not strolls through the forest; Jean is a Type-A hiker who drives a death march pace on snowshoes or cross-country skis). I would collapse into bed on Sundays when we got home and sleep the sleep of the dead, often staggering in to the office in desperate need of a weekend. I ate up the outdoors with an urgency that, in retrospect makes me wonder whether my subconscious knew that I didn't have forever to get in a lifetime of skiing.

Now I have lots of time for that book. If only I could actually hold a book... On the other hand, no one has insisted I drop ESPN to go clean the hot tub filters.


Day 904, January 1, 2013. This will be "The Year of...?" We are still working on that, but, for today, it is a year we have skied every day. That will change tomorrow based on how my head feels tonight.

From a technical standpoint, I skied better than the previous two efforts. On the easiest terrain, I'm skiing a tentative but sound wide-stance parallel turn, and occasionally sinking enough edge in to deliver a carved turn.

However, my margin of error is razor-thin, and if I tilt off the edge, the consequences are brutal. Two of my three falls today were ho-hum slides to my right hip at like zero mph. The damned thing is, I don't have the core or upper body strength to give the fall a ho-hum result. Instead, I fall like a tree, which means my head has the greatest velocity by the time it hits the ground. And, with no muscles strong enough to protect my noggin, it really bashes to the snow. As Jimmy said "you can't concuss yourself like that every day." Fair enough. How about every other day?

On more difficult terrain (and here we're not talking about difficult terrain; we're talking about more difficult terrain, as in the sort of hard parts of beginner runs), my turns are pretty static wedge turns that are also hypoxic (because I hold my breath).

My third crash today was a total face plant. I hooked a tip on the top of a small evergreen that was poking out of the snow, and I went down like I'd been blindsided by that South Carolina defensive end who knocked the head off the Michigan running back in the Something Bowl this week.

That one left a mark.

Time for a couple of days off.


For 2012, please click here!


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