Oso High Endurance Sports -- Biting Back at ALS

                                                                
 

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1 Day to Tomorrow: 2012 (next up: Ski season, December 26, 2012)


"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 902 and 903, December 30-31, 2012. My wife is 53 years old, my son is 18, our daughters are32 and 16, my dad is 75 and my mom is in the same neighborhood. When any of them spend time with me, they all have to feed me. The math just don't add up.
And, 2-1/2 years after diagnosis, I'm beginning to look like one of the lucky ones.
Animal models evaluating neural stem cell treatments show increases in survival of about 400%, along with dramatic improvements in motor performance and respiratory function. Reports from early human trials are not showing any troublesome safety issues, and impressive evidence of efficacy.
In cancer research, as soon as one mouse perks up, "compassionate use" expanded access to experimental treatments becomes commonplace. How long will it take for stem cell therapies to make it to ALS patients? The math just don't add up.
Wanna do something that might help? Sign this online petition.   https://petitions.whitehouse.gov/petition/stop-fda-over-reach-regulating-our-own-stem-cells/csQ6V3KK

For 2013, please click here!

Day 901, December 29, 2012. What do you do with the spoiled milk? Do you toss it, or do you put it back in the fridge to see how it is tomorrow? We decided to put my skiing back in the fridge, and guess what happened? It got better.
I was pretty heartbroken over how things went on the 27th, but I was getting used to the new reality that I would never ski again. The problem with my helmet was real, but how much of a difference would it make if we could conquer the problem? On the 27th, my legs shook like I'd been dipped in the Arctic Sea. Had I been nervous or was that a flash fatigue? We skied about 400 vertical feet in an hour. One ride on the chair what would mean five times that amount of skiing.
The sensible thing would be to call my friends at ski school and see whether we could get our hands on the bi-ski. Then I could sit down and enjoy some gravity thrills in relative comfort and safety. The sensible thing would have been to go to Leadville in 2011 to watch some friends do the LT 100.Racing the suicycle is most certainly not sensible. We're saving sensible for later in 2013 or possibly 2014.
So we headed for the slopes again, having learned a few lessons. We put on my skis at the truck instead of having me walk out to the actual ski slope. That slashed about a half hour off the prep time.

We got moving quickly and it went well for the entire distance we covered on the 27th. Then I sort of tipped over, smacking my melon hard as usual. We asked Abby to drive the truck to where we had bailed last time.
After a few minutes on the ground, though, I started feeling like I could keep going, so we sent Abby to the base of the area. By the time we got to the base, however, I was looking at the chair with longing, and off we went. Abby was now chasing us up the mountain in the truck.
The only route from the summit to where we park is very easy, with only one steep section. We stopped just before that little pitch our family calls "video tape hill". What happened next is in dispute. The story to which I am sticking is that a Texan was about to hit me, and Jean saw it coming. With cat-like reflexes, Jean pulled me from certain disaster and laid me gently on the snow. There is another less credible version of the events that calls into question Jean's conduct and motive. This is Jimmy's version. I doubt Jimmy would be an advocate of the "tackle scenario" if Jean still fed, dressed and bathed him. Jean does all these things for me. I reject the "tackle scenario". I'm not implying there is a connection between the two; I'm just saying how it is.
Getting me off the snow is like trying to pick up a body bag filled with jello, while the zipper is open. It's a minimum two person job unless one person happens to be packing a hoist.
Jimmy and Jean did the lifting while Dad protected us from uphill traffic. I really don't do anything other than grunt.
We made it to the car without further incident. So 2000 vertical feet in about two hours. In March of this year, we skied 40000 feet in one day.
None of this was very pretty at all. You know those little plastic toys that have some sort of human figure standing on a plastic base, and the when you press the underside of the base, the figure collapses, but when you release the pressure on the base, the little dude springs back to attention because his joints are held together by strings? That's me skiing. The feet stay put, but the body bouncers randomly across the surface of the snow.  Click here for video on The You Tube: 
When I can force my legs to relax, I can actually make some smooth turns. The problem is that it is difficult to force relaxation. Watch Joe Biden.
I'm glad we put skiing back in the fridge, but my team looked like they had spent the afternoon watching someone dismember a puppy. As best I can tell, that had something to do with the way my head bounces when it hits the snow.

Days 899and 900, December 27-28,2012. Welllll... I skied and I was standing up. Sometimes. That is the best spin that can be applied to what happened when we took to the snow.
It took 45 minutes to get from the car to the snow about 20 meters away. I had practiced walking in ski boots, but there was more snow in the street than in our living room. It was very hard work, even with Jean and Jimmy hauling me by the elbows. By the time we got to the place where people traditionally don their skis, I was winded, sweating and my neck was fatigued from staring down at my toes for the half hour from the car. Jimmy spent a long time cleaning snow off the bottom of my boots so I could clip in.
While Jimmy and I shuffled across the flat to where the snow turned downhill, I was practically giddy with the fact I hadn't fallen on my face. As we got closer, my nerves went from full alert all the way to being-led-to-the-executioner-panic.
I dropped over the edge and into my first, very wobbly turn, then another, and another. Then I initiated a right turn that wouldn't quit until my tips were working their way back uphill, which is not the correct direction when skiing. At that point I stalled and fell backward downhill. My head hit pretty hard, but my helmet was up to the task, and the snowy surface was far more welcoming than the Prague asphalt. On the other hand, my helmet created a problem. My neck is continuing to get weaker, and it was not up to the task of holding up my head plus the weight of the helmet. When I began moving, my head would dip down under gravity's influence the way yours might right as the roller coaster hits the bottom of a long descent and shoots skyward again.
To get my head up, I had to pull back with my torso, which put my weight way back toward the tails of my skis. This is not where you want your weight when skiing unless the stuff upon which you are skiing is water. Then I would pull my body forward with my quads, and guess what would flop forward again? Yep, the melon. After a few rounds of this, I'd had enough. We caught a ride from ski patrol to a place where we could wait for Jimmy to come to the rescue with the truck.
Overall, not as bad as I had feared, but not as good as I had hoped.
On Friday, I napped and hung out with Abby while Jimmy and Jean skied. It was the first time I've ever stayed in while any part of our family skied. You know what I missed? It wasn't the mountains or standing at the top of a run where I could see pillows of snow waiting under me and all the way to Colorado ahead of me. It was sitting on the chairlift with my family.
We raised our kids on Angel Fire's chairlifts. We taught them, learned about them, played with them and made up inside family stories and jokes with them. Jimmy was ten and Abby was eight when we started skiing here. Whatever we had going on in our lives in Albuquerque took a back seat to skiing every weekend from Christmas to Spring Break.
I was prepared for skiing to come to an end. For two full seasons I've been able to see it and feel it coming. I've stood quiet over empty slopes, closed my eyes and filled my lungs with delicious, cold air. I have memorized details of our mountain in a very different way than before ALS. I have relished every turn, bump powder stash and crowded thoroughfare the area has to offer. But I was not prepared for this.

 Day-898, December 26, 2012. Ski season awaits. Tomorrow. We arrived in Angel Fire this evening, and, after we figured out how to get the wheelchair over the wall of snow in front of the door,.we sat down to negotiate the terms of our day tomorrow. To say that my family is skeptical of my plan to try stand-up skiing is like saying that Wayne LaPierre -- the most dangerous man on the planet -- is an a-hole. Their skepticism, like Senor NRA's a-holishness, is an inadequate word. An understatement of monumental proportion.
Here are a few lines of transcript from the mauling I received this evening:
Jimmy: "what is the percentage chance you will get seriously injured tomorrow?"
Me: "1%".
Jimmy: "You're mental".
I'll just stop there. That's the conversation in a nutshell.

Day 897, December 25, 2012. Merry Christmas!

 

Day 896, December 24, 2012. Memories. I spend more time wrapped up in them these days. Not in a sadly nostalgic way, but more like going through old videos. I have a fair amount of quiet time on my hands and I'm trying to take advantage of it. I'm naturally an early riser. So is Jean. If you use a club or perhaps a large dog as an aid, that is.

Every morning I wake up before 7, and I have a choice to make. I can roust Jean to help me out of bed, and she will do it with some measure of enthusiasm, ranging from "of course, darling" to "die, beeyotch", depending how many times I woke her during the night with my thrashing. Or I can make a deposit in the Bannon Bank of Goodwill by lying quietly until the sun peaks in the window (currently about 8:15).

This morning I pulled out the cerebral tape of last Christmas Eve. We were in the Virgin Islands on a sailboat we chartered. For Christmas Eve we had selected a harbor that is very crowded and festive. Jimmy's second and third Christmases were spent in North Gorda Sound and, as Christmas approached when he was three, we had to do some work to get him to understand the Caribbean version of Santa (a black man about 6 foot-6, 140 pounds) was not likely to slide down our chimney.

Jean and I were sitting on the bow not long after dark, when an unlit dinghy approached, shifted into neutral and drifted by while a tiny angel's voice sang "Silent Night". As the small boat slipped past the stern of ours, it puttered back into gear, disappeared into the silent night.

Merry Christmas or whatever floats your holiday boat.

Days 894-895, December 22-23, 2012. "Every other Tuesday". More than two years ago, Jim Chynoweth and Andy Schultz, a family friend and a friend from my practice, separately suggested getting together regularly -- Jim for happy hours and Andy for breakfasts. Freshly diagnosed with ALS, I tried to not think about the parallels to "Tuesdays with Morrie". And these meetings have been very different than the book.

Before ALS, Andy (technically my most direct competitor -- but actually, a closer friend and ally than some of my own partners) and I met sporadically for a social meal at some place near our offices, both of which are located in the same part of Albuquerque's understated downtown. We talked about our families and our jobs mostly, but sometimes drifted into other topics. At one of these meetings, referring to our respective firms' historically competitive (sometimes openly hostile) relationship, Andy said "you know, we probably shouldn't even be friends". In the mid-1980's, our firms (at least many of the individuals within them) would have frowned upon such fraternization and -- heaven forbid -- referral of work to one another. Andy and I had the outlook of our predecessors who grew up practicing when every lawyer in town knew every other lawyer in town. Back then, opponents and competitors shared professional and social interests, lifestyle, and -- if the stories are to be believed -- occasionally, spouses.

Ken Harrigan, from Modrall Sperling, and Bruce Hall, from Rodey, were local legends while I was focused on trying to develop a decent swing for my law school softball league, and Andy was working with Justice White at the U. S. Supreme Court (Andy is an over-achiever; by contrast, I always felt I had wasted time if my final grade exceeded 89.6% -- Andy was right, we really shouldn't have become friends).

By the way, despite how it might read, nothing above should be interpreted to mean that Ken and Bruce were sharing spouses back in the Summer of Love. However, they were and are close friends despite having several easy-to-articulate reasons why they shouldn't have been on much more than polite speaking terms. Something happened between the firms between 1968 and 1986 that left a gulf between them, and there are many generations of lawyers at both firms who would not help one another out of a jammed bathroom stall.

My guess is that it had everything to do with an annual tradition that ended abruptly in the 1980's -- the Modrall-Rodey football game. The one time I played I discovered it was not like any other touch football game I had seen since Mom moved us away from the ghetto in 1973. Defenders would throw whatever they had at a ball carrier, almost invariably knocking him to the ground, then reach down with two hands to touch the runner. Sometimes they would even add a kick to the ribs for good measure.

Whatever the source of the talk-to-the-hand attitude, neither Andy nor I had been on the giving or receiving end (well I did sink a knee into a Rodey receiver who was on the ground, but it was not apparent that there was malice intended (there was)). As I was saying...

Jim and I met when our infant sons were attending a day care together. During circle time one afternoon, Jimmy taught his friends a disparaging phrase about fathers that a mother might utter in a frustrated moment, perhaps -- just possibly -- when her husband was out riding his mountain bike.

Whatever its origin, the administration of the methodist church was unimpressed by Jimmy's wordsmithing. Same for most of the parents. Jim, however, saw the humor.

Jean and Jim's wife, Hilma, became friends talking about girl stuff and later were founding members of the "Hot Running Moms", a group that could be identified long before they could seen by their flock-of-seagulls song.

When Jim and I started getting together every other Tuesday I could lift my own beer mug, tie my shoes and sing "Rapper's Delight" (even the verse about Lois Lane and Superman).

Tim Holm brings fried chicken and we watch Monday Night Football. Anna O'Connell organized a group that brings dinners on Tuesdays. Jennifer Anderson does the same with a group of Modrall lawyers on Thursdays. We don't deserve this, but we gladly accept.

So, Jim came to the house Tuesday with his guitar. The only musical interest I ever pursued (aside from striving to assemble the ultimate Eagles mix cassette tape when I was in college) was guitar.

I was a miserable failure as a guitarist from a musical perspective, but that never stopped me. I picked it up when I was a junior at JMU. I played every day by myself and with a group of friends on Saturday nights. The weekend sessions often went all night because they might not even get going until midnight when people returned from dates, studying or working. Of the many inadequacies under which I labored, my voice was the most problematic. I learned just how bad it was on the bus travelling for track. Our entertainment was primarily listening to one of our decathletes sing. Phil Vassar could sing anything and he always sounded like whoever had originally recorded whatever he was singing, only better. George Benson, Meat Loaf, Lionel Ritchie, Aretha Franklin, you name it. Therron Phipps would join in on Motown and gospel tunes. That sounded nice. Others would join in and people would frown, especially if I was involved. Phil became a Nashville recording star ("Just Another Day in Paradise"). Phipps became a cop ("Doug, check this out, they gave me a gun!").

So, I would arrive at Wine-Price Hall sometime after midnight, play the guitar with enthusiasm, and mumble the lyrics like the weak link in the church choir who signed up to sing because chicks dig it. Which, not surprisingly, is why I started playing guitar.

Jim does not share my agony in this arena. He arrived at 5:30 and played a half-hour worth of music for an hour, because we kept asking for encores (including four performances of "Christmas with the Family" ("A Redneck Christmas")).

An early Christmas present.

Day 893, December 21, 2012. Looks like a beautiful day to ride the suicycle. The weather forecast was wrong.

Days 891-892, December 19-20, 2012. A funny thing happened on the way to the shower. I haven't weighed myself in many weeks, so I hopped on the scale. A beefy 157 before dinner. Since I usually weigh in right before before bed with dinner and the fourth meal packed in, we'll go ahead and call this "160", which is steady for well over a year.

A sudden assault on my senses (a loud noise, a slap on the back, an ice cube, having a finger slammed in a car door, etc) can cause my entire body to go rigid. This leaves me like a blowfish -- utterly unable to respond to the environment.

You could knock me over with a small sample of cashmere. But you wouldn't have to because, unless I happened to tip against a nearby wall located exactly perpendicular to my fall path, I would already be on the ground.

I got one foot half off the scale, but it came down on the corner of the scale, which stimulated a tickle reaction. I became a 4x4 post, tilted into a glancing blow off the sink, and headed for the floor. Jean tightened her grip on my hands, but 160 is greater than her petiteness, plus I had some momentum, so she never had a chance. This is probably on account of the fact that force equals mass times acceleration, and my mass was accelerating. She did, however slow my fall considerably, which meant the impact was uneventful and didn't leave a mark.

Now what? Try this: lay down on the floor on your back and get up. Good. Now, do it again, only this time, don't use your arms to help. I'm guessing you got to a sitting position and ran out of ideas about then. Now enlist the aid of a fit but tiny person to help. Time to call 911, no?

We discovered the wheelchair is more than just a stylish ride. Jean brought the chair up behind my head and lowered the footrests to the floor like a forklift. You can probably see where this is heading, and you are correct. Jean helped me sit up, moved the chair right behind me, slid the footrests under my butt, and hit the "up" button on the control panel. Voila!

 

You can't find this kind of stuff in the owner's manual. Just another reason to tell people to read this blog. It's a "value-added" feature of osohigh.com.

The end of the year is right around the corner. Will you please consider making a donation to the ALS Association? I am one of the lucky people with ALS (inartfully worded, but you mean what I know). Lots of people face ALS without insurance, family, friends or income. All of us face ALS with scientists struggling to find the dough to perform research targeting treatment and cure. The ALS Association provides patient services of all manner, and also directly funds ALS research.

What do I mean by "patient services"? Here's the example of the week. My $12,000 computer that knows what I'm thinking just by looking into my eyes isn't working. That's a serious blow to my ability to communicate. Kerrie Copelin, the Executive Director of the local ALSA chapter, showed up with a unit I can use until the manufacturer repairs my machine.

If you can, please donate to ALSA by clicking on the ALSA logo right here...

Days 887-890, December 15-18, 2012. Go freaking figure. Cold weather came suddenly this week. Jean and I decided to go to the health club, put me on a stationary bike and let her attend her favorite group S&M class ("kickboxing" is, I think, what they call this one). Stationary bikes are low-risk and fairly straightforward pieces of exercise equipment. They are far more stable than the suicycle and possess roughly equivalent geometric characteristics. All-in-all, even though I last used a spin bike over a year ago, I didn't anticipate a problem. This is becoming a familiar sequence: get ready to do something (e.g. walk, blow nose, scratch nose, pick nose, who knows...); think through required steps; conclude I should be able to do the thing; try the thing; wind up in a tight spot with no apparent and graceful way out (e.g. thinking I'm a badass because I got out of my jeans to change into bike stuff, realizing I can't get the bike shorts on or get back into the jeans, and remembering the only people in the house are me and the guy who came to spray for ants).

Out of an abundance of caution, we asked Abby to come with us so Jean wouldn't have to worry about me while she was down the hall kicking John Boehner in the nuts (symbolically). Abby could hang out on the sofa outside the bike room and work on some homework.

Only it didn't exactly work out that way. Getting on was a three person job. I put one shoe on the pedal on my side of the bike, put my hands on the bars, and tried to step over the frame's low point which was barely a foot off the floor. When I put some weight on the bars, my arms buckled and my chest dropped down immediately, spared a collapse to the floor by slamming to a stop on the bars. And that was with Jean and Abby supporting me from each side. "Are you stuck?", Jean asked.

I can tell lots of things I can't do prompt an "are you kidding?" reaction from people who see me. I suppose it may have its roots in people knowing about my extracurricular activities, but it does sting when someone extends a mitt to shake my hand and there's a pregnant pause where my hand vibrates a little but doesn't move.

I was stuck. With one foot on a pedal, one foot on the floor, both hands on the bars, and my chest on the bars, I couldn't push myself back upright. And so it went.

Finally sitting up, we discovered I couldn't adequately rest my hands on the bars because of the length and downward angle of the required reach. We made adjustments in the positioning of the bars, the seat height, and its fore and aft location.

By this time, Jean's class was half over, so I pretended we were all set, and sent her on her way. I started pedaling but it didn't go well, and Abby never got her teeth into her homework.

If I leaned forward on the bars, my shoulders and elbows quivered under the weight, and I couldn't breathe clearly because my neck sagged under the weight of my melon, causing my windpipe to crimp. I could sit up straight with my arms dangling at my sides, but that caused stupid pain in my shoulders from the weight of my arms pulling on my defenseless shoulders.

To deal with this, Abby slid two empty bikes up to my sides and adjusted the seats so I could rest a hand on each bike. I was pedaling again.

After only about a half hour from when we first got started putting me on the bike, I began breathing a bit harder than normal.

Abby sat down and opened her homework.

ALS causes an increase in saliva production. At least that's what the doctors tell us. I know I didn't go to medical school, but let's think about an alternative. ALS is a neuromuscular disease. Every symptom except two (saliva and emotional liability) attributed to ALS is essentiality weakness of muscles. The tongue is a muscle. The esophagus is surrounded by muscles. Together, the tongue and esophageal musculature make swallowing happen. Saliva is removed from the mouthulary region when you gob, spit, expectorate, hawk loogies or... swallow. If you are not so good at the foregoing, then more slimy stuff remains in the boca. Which leads us to ponder whether ALS -- the muscle disease -- causes the salivary glands (which are not muscles) to overproduce saliva, or causes the tongue and throat (yep, they are muscles) to under-remove saliva. I'm just sayin'.

Anyway, there's a lot of slobber to deal with. In the rest of my life, I manage this little treat by keeping my mouth closed (like a classic type-A, heart attack waiting to happen middle management white guy) until I'm ready to speak, then I swallow hard twice before speaking. On the bike I just spit a lot, which is why the guys who ride with me refer to the area within 20 feet behind the suicycle as the "splash zone".

With my mouth open to facilitate breathing, I could neither contain nor wantonly give flight to my secretions. This is not a new problem for me when training indoors. Back in the day I packed an empty water bottle as a holding tank. A year ago I was keeping a towel handy. I can't pick up a towel and bring it to my face, so I needed a new solution. Abby closed her book and brought me a towel every two or three minutes.

Do you have the whole picture? Sitting up straight as a board; two bikes I'm not riding pulled in close with one hand on each saddle; spitting in my daughter's palm every now and then. Now, I need to add one more element. A class was going to be starting soon.

As people filed in to set up their bikes I repeatedly received two lines of nonverbal communication: "first come, first served on the bikes, pal, so stop trying to save two for your friends", and "that is soooo, soooo nasty".

It was clearly time to go home. Abby scraped me off the bike and back into the wheelchair, which reminds me of a joke.

Bob walks into a bar and sits down on a stool next to a guy who had obviously been there for a while. They strike up a conversation and after a few drinks, Bob watches in amusement as his new friend slithers off his stool, collapsing to the floor. Bob revives the man enough to find out where he lives so Bob could drive him home, as he was obviously in no shape to do this on his own.

So Bob loads the man into his car and drives him home. When they arrive at the house, Bob smacks the man around a bit, hoping his wife won't have to watch Bob drag the nearly unconscious man to the front door. No dice.

When the man's wife opens the door, she shakes her head in disappointment and says "thank you so much for bringing him home, but one thing -- where's his wheelchair?"

I'm not certain why my story about the health club reminded me of that joke.

Days 885-886, December 13-14, 2012. Good news from USA Paralympics! I'm on the National Team for 2013! This will be a sweet deal... As long as the suicycle and I remain on speaking terms. And as long as Jean's seemingly boundless patience holds. And as long as our supply of gauze holds. First up -- a winter training camp in January near Orlando!

Days 883-884, December 11-12, 2012. I have figured out a handy way to make it easier to be grateful for the abilities that remain, even in the face of continuing deterioration. This gadget works sometimes, but not always.

In scanning through some of the blog from its early days, I found many mocking references to my waning upper body strength. What I wouldn't give to have that strength now... I've found this perspective isn't very helpful in getting me to focus on the miracle of today. It's a familiar conversation adults have with themselves, and it goes something like this. You see an old photograph. You were younger and more fit. Life was less complicated. Sharks feared you. Women/men swooned at your feet. Bass lept into your boat. And you were the most interesting man/woman in the world.

When you look at the photo, one, some or all of the following occur to you: (1) you were such a [stud/hottie]; (2) you thank God you didn't marry the person next to you in the photo; (3) why the Hell did you marry the person next to you in the photo?; (4) those were the days; (5) if I knew then what I know now, I would have... What each of these has in common is the focus on the past – we look back and congratulate or chastise ourselves for how we have conducted ourselves. We don't tend to identify the lessons that we might have learned and apply them to the future. How often have you looked at the old photo and said to yourself "I was a [stud/hottie] back then, and, jeepers, ten years from now I will think I was, relatively speaking, a[stud/hottie] today; ergo, rather than moping over what I've lost, I should celebrate what I have." That's just not the knee-jerk reaction when you are 55 years old, sitting in your office with your gut keeping your desk drawer closed, looking at pictures of you and the blonde Tri-Delta from a private Massachusetts girls' school, standing on the beach, Spring Break 1977, is it?

I have a little helper.

My left arm has become weaker than my right. For example, when I'm on my back in bed with my arms at my sides, my left arm won't lift up, but my right will. So if I need to lift my left arm, I reach over with my right hand and grab my left. This, as you can easily imagine, makes it quite easy to be grateful for the ability I have remaining in my right arm.

I'm working on applying this concept to what's left of my voice, gait, manual dexterity and a host of other abilities under seige. And who would have thunk munching a soapapilla doused with honey, salted and dipped in red chile could feel like a miracle? In truth, that's not a good example because such a thing is a miracle on par with a painting of Mary that weeps actual tears. How about green beans?

Days 877-882, December 5-10, 2012. "My pleasure." That's what Geoff Mather said when we thanked him for doing what was needed to get me and the wheelchair from the truck into his home for a "book club" meeting last night. What it really was is something other than "pleasure". I think a more accurate description would be "designing and building a suspension bridge in one day". That's it.

Let's start with "book club". Several years ago, Jean was invited by Meg Meister to join a book club. I met Jean and Meg at the same moment in the summer of 1987, when the two of them darkened the doorway to my office to introduce themselves. That should have told me something right then.

See, the way summer clerks introduce themselves at Modrall Sperling back in the day was they would cling to the skirt of their summer advisor (a young lawyer), waving a shy "hi-ya" as they poked their noses into lawyer offices. At least that's how I did it. Not these chicks. They were the confident and not silent type that made the dinosaurs of the legal community rue the day girls were allowed to go to law school. Meg is a Texan -- no need to even ask. Bluebonnets accompany her every syllable. Jean was wearing a sleeveless green sweater with a whisper of "aww, yeah".  I mean, it's not like I was checking her out or anything. I was a professional. I'm just saying how it was.

So Meg invited Jean to join the book club. And, at that time, it was a book club. After Jean became a member, the book club became a "book club", mostly because Jean never read the book. She would show up, they would have loads of fun, but the book wouldn't even come up.

This went on for a couple of years until Jean was invited to convert her membership to "honorary" status. The group resumed operating as a book club, and Jean receives an annual invitation to the Christmas party.

There we were, talking about the party coming up last night, and it occurred to us we should check in with the Mather family about access to their home with the wheelchair.

Geoff and Ellen Mather’s mansion is cradled in the palms of the Sandia Mountains' foothills. This is not an easy way to build a house. Lives and limbs can be lost. So can lots of perfectly valid credit cards. This home is a work of art. A work of art with many stairs.

As if they had nothing better to do, Geoff apparently spent the day making the 20-ish steps from the driveway to the house accessible by wheelchair. He did this by combining a U-Haul-style portable ramp with a series of 5x5 plywood sheets he screwed together to negotiate two turns and up a 20% gradient.

 

Once I reached the top of the stairs, Geoff unscrewed two of the panels to get me over the threshold step. He was prepared to move more of the assembly into the house to let me roll from the entry level to the main living area, but that would mean putting this very industrial structure on the surface of the sweeping hardwood staircase that is the most visible area of the home from the front entry. The woodwork is hardwood, but not that hard.

I opted for a little help up the stairs and used my walker during "book club". Geoff seemed genuinely disappointed he didn't get to demonstrate the full versatility of his design. I think Ellen was okay with the way things went.

Jean, for her part, was witty and charming all evening. The members of the book club have to feel poorer for having relegated Jean to the "book club".

If only Jean would read the books. Jean is busy. That and, well, aww, yeah!

Day 876, December 4, 2012. Here's a sobering thought. Rick Majerus made it to 64.

News of Coach Majerus' passing this weekend led me to a number of depressing conclusions which can be summarized by this one example: Keith Richards will probably outlive me.

 

To invert a George Burns quote, if I'd known I would wind up with ALS I might not have taken such good care of myself.

Day 875, December 4, 2012. I have a complaint I'd like to submit. Put your head on your pillow and turn your head to one side until the ear on that side gets folded in half by the pillow. Now just leave it that way for a minute.

Thirty... Thirty-one. Nope. Go to sixty.

Annoying, no?

Now fix it. That was easy, wasn't it? You lifted your head a tiny bit while you turned your head a bit and it was all better. My problem: these are things I'm not very good at. This operation can take a full minute, plus the time it takes to get back to sleep. That adds up to a royal ass pain. It also poses a real threat that my ears will stay that way all Obama like. Will someone please print a copy of this and drop it in the complaint box?

Days 873-874, December 2-3, 2012. Jean is out of town for the weekend with her sisters -- hopefully getting reacquainted with what it's like to have a meal without having to feed two people.

Mom and Jimmy have been taking care of all my stuff, as we agreed before she left. There was one job that needed to be done that I felt no mom or son should have to do -- installation of my external catheters. I don't know exactly why I drew the line there -- there were so many choices.

Paul Mohr drew the short straw on this one, and, as luck would have it, we ran into a technical problem. Paul has been one of my primary innovators when it comes to biking. He is creative and resourceful and always thinking about better ways.

As it turns out, his inventive talent... Um... Extends beyond the realm of biking. Click here.

Days 870-872, November 29-December 1, 2012. "A self-licking ice cream cone". Something that has no purpose other than to serve itself. The Dallas Cowboys, for example. Also, to me, training with no purpose other than to train fits this description. What's the point to making yourself faster on a bike if you aren't going to race? By "race" I don't necessarily mean pinning a number on and answering "yo" when the USAC official does the roll call. Racing can be trying to smoke your buddy up the local iconic climb, sprinting clear of the Sunday group ride (even if no one else knows it's on). Click here.

But if you are just making yourself faster for the sake of being faster, like in a vacuum, I don't get it. Sure, you can argue that being more healthy will be a by-product and you will live longer. Yeah, that one just doesn't impress me much -- I've stopped wearing sunscreen.

So some of the post-Tucson rides have been less than inspiring. I'm hanging on to the bike by a couple of fingernails and not riding particularly fast. Today we turned a corner on the ice cream cone problem. The velcro wristbands I have been wearing have evolved from a just -in-case measure to an in-lieu-of-hands measure. We have gradually tightened the straps that wrap around the bars to bring my almost useless hands back toward the bars. The more pressure I can put on the bars, the better control I have over the machine and the more efficient my pedal stroke will be since less leg power will be necessary to remain upright and going in a straight line.

Today we almost nailed it by nearly getting my hands locked on to the bars so the suicycle goes where I go. The downside, of course, to this relationship is that I will always go where the suicycle goes. I think I'm prepared to concede that my next wreck on the suicycle will be my last. I don't mean that like I expect the next crash will take off my head; I'm thinking I should probably retire the suicycle instead of waiting for it to retire me.

Meanwhile, however, we're on the verge of a breakthrough that could keep me on the bike well into 2013. The likelihood of failure elevates the purpose of any journey. And it would be a shame to let the ice cream cones do all the licking just yet.

Days 867-869, November 26-28, 2012. What's next? Ski season is next, that's what. I have no earthly idea what it will look like for me and that question has invaded my dreams. I have had no fewer than four dreams about it. In each one I could ski standing up. That should be a good omen, right? Yeah, but I routinely have dreams where I have ALS, but I can talk, run or write normally. Then I wake up, fall flat on my face, drop a pen on my bare foot and yell out some unintelligible obscenity, and, just like that, I'm jolted back to reality. Consequently, I'm starting to take dreams with a grain of salt.

Here's some of the analysis I've worked through:  I have been falling over for no good reason for ten months. That's bad. I kept skiing for another two months after I started falling. That's good. Since ski season ended, I've gone from walking without assistance to using a walker part-time, then full-time, then using a wheelchair. That's bad. Before ski season ended, my balance was already too skronked up to ride a bike. That's good. My quads,hamstrings and calves are still stronger than most of the people who will ski at Angel Fire this season. That's good. If I can ski standing up, I may well be the only person in the Rockies who can do that but can't walk or scratch his ass. That's bad. Get the idea?

Now, why worry about this? If anyone knows that not being able to stand up skiing is not the end of the world when it comes to skiing, it's me. Between the mid-80's and 2011, I taught hundreds of ski lessons, and only one of my students could walk (he was blind). The equipment has progressed from a kayak with metal edges to a tight-fitting butt bucket supported by two independently articulating custom-designed skis. So what's the big deal?

Here's the turd in the adaptive skiing punch bowl. A ski day at our house has looked like this for the last eight years: get up 45 minutes before you plan to make your first turns, eat, get dressed, drive 3/4 of a mile to where our road dead-ends at the ski area, buckle your boots, and ski.

Because I have so much experience with adaptive skiing, I know what a big deal it is to get someone on the mountain with my limitations. See, sit-down skiers are overwhelmingly paraplegics. They will have limited to above normal upper body function. The equipment designs reflect this reality. Once a skier sits down, strong legs are useless because the equipment is designed for people whose legs don't work. If I sit down, then, I'm essentially an incomplete quadriplegic. It is possible for such a person to ski in a bi-ski,and here is a photo of a young woman we worked with in the early 1990's, Mollie.

 

The thing is the instructor's quads, shoulders and back have to control the speed and direction of a loosely connected unit weighing the total of both skiers plus the ski. The ski plus me will weigh about 190 pounds. So the person skiing behind me will have to be packing.

There will be some societal pressure on Jimmy to be that dude, and that doesn't seem fair to me. By the time I started doing that silliness, my knees and back had lived long and healthy lives, but Jimmy is so young. This is the sort of job that should be prison work detail for former SS officers. They, unfortunately, are in very short supply these days.

So, the two problems with bi-skiing are that it would totally change the character of a ski day, not just for me, but for the entire family, and it would not be fair to dump me onto Jimmy's young and impressionable joints. Thus, I fret over what awaits.

Well, this weekend, I got better preliminary news than I had expected. Maureen and Abby helped me get ski boots on, then skis. In the living room of course. Something wonderful happened. The fore and aft stability of skis is easy enough to understand, but they also provided lateral stability. I was more sure on my feet than I have been since last season.

You might be thinking "whoa, there, big guy, the coefficient of friction for carpet is astronomical when compared to snow". Of course, you would be right. But still, I expected to find myself in a big pile of ski stuff and Christmas decorations on the living room floor instead of doing pirouettes on my ski tips.

Cautious optimism is the word. The words.

Days 862-866, November 21-25, 2012. Happy Thanksgiving! Most of us spent the long weekend at the cabin in Angel Fire. Meanwhile, Jimmy went to a soccer tournament in Las Vegas to test out his ability to be the adult we know he can be amidst the ickiness of America's colon. It's true I'm not a big fan of Vegas. Jimmy is 18, which is frightening and wonderful.

At the cabin we were treated to almost 48 hours of the finest cuisine John Meister can dish out. After the Meisters’ departure on Saturday, we went back to TV dinners. Not. My mom made a soup that brought me back for thirds, and Jean's sister Maureen made gooey monkey balls that brought everyone back for thirds.

Stubborn. Determined. Stupid. I earned all three labels on the recumbent trike, the "Vortex". On Black Friday, I wanted to go out for a low altitude spin on my own. What could go wrong?

Well, at least two things could, as it turned out. First, the Vortex doesn't climb all that well. By that I don't mean it climbs like a frat boy on Saturday morning (slow and pausing frequently to puke). Rather, I mean it just stops if the pitch gets up around 10%. It's not under -powered; the problem is the weight is too far forward in relation to the drive wheel, so it loses traction (on dirt).

Jean didn't trust me (for good reason, I have to admit), so she led a small group to hike exactly where I was riding. Everything was going just fine, so they left a dog with me and headed home.

Right about the time they were out of sight, my rear wheel spun without purchase and I came to a stop in gravel less than an inch deep. I decided this would be a good time to shift into the small gears for the climb back to the cabin. This is when I discovered the second thing that could go wrong and did. When the bike was at the shop last week, an alert young man found my front shifter was perilously loose, and he did the responsible thing -- he tightened the mechanism. You might ask yourself "why was it loose, Doug, I mean that bolt like never comes loose?" And if you ask that, your point would be a fair one. The bolt was loose because ALS Boy wanted it that way on account of because I can't move the shift lever when it has traditional tension. So when the alert wrench dude at the shop tightened that sucker, he unintentionally cut my gear choices in half.

I figured all this out in the moment I reached for the shifter the second time. The first time, I thought my grip must have slipped. The second time, I knew I was hosed. In the next few minutes I tried many different ways of getting power onto the lever to make it move. The end came when I figured out how to make my left leg do the work. Once I lined everything up and hit the gas, the lever stayed right where it was, but the whole handle bar (to which the lever is attached) creaked as it moved from its position to a place so inconvenient had I would not be able to steer even if I got the machine rolling again.

It was a beautiful late afternoon, everyone knew where I was, and I had Chatel to keep me company. I slid deep into the seat, leaned my head back onto the rest, and closed my eyes to enjoy the warmth of the direct sunlight on my skin with the dog curled up beside me. Right in the middle of the road. All of Angel Fire's 88 miles of roads are low traffic in November, and this particular one is in an area that sees more elk than vehicles every day, so the likelihood of getting hit by a car was remote. I was far more likely to get trampled by the resident gang of elk, which would be a kind of cool way to go, so I relaxed and waited for Jean or Rudolph to show up.

Jean came first with Jessa and our other dog (I don't know how to say this without it sounding like we have a dog named "Jessa" -- which would be a ridiculous name for a golden retriever. We have a daughter named "Jessa", and she came to get me with Jean and our other dog. Dammit -- I did it again. Jean, Jessa and Blarney rescued me.  That’s better.

Having learned a lesson from the Friday ride, I decided Saturday's outing would be straight up the mountain. That way, if I spun out trying to get up something too steep, all I would have to do is turn around and coast home. What could go wrong?

Well, let me tell you. I could wrap my chain into a big knot around the rear derailleur in such a manner that the bike could not even coast. Guess what?

Chatel curled up next to me and we waited. And we saw a bald eagle fly overhead. Mom and Jean rescued us, then Jean and I continued up the mountain (after Jean untangled the chain). We kept going just long enough to put folks at the cabin into a panic about where in the heck we were. When we got home, Mom greeted us at the door wielding a large knife like she meant it. I decided to take Sunday as a day off the bike.

Days 857-861, November 16-20, 2012. Race day -- El Tour de Tucson! The logistics of bike racing are daunting. The logistics of bike racing with ALS Boy are comparable to what Santa has to deal with on Christmas Eve. We had a gang of nine, and everyone had plenty to do. Getting to the start line on time was a skin of our teeth operation that was set in motion by 9:00 AM, our agreed departure time on Friday.

Off like a herd of turtles not long before 11. This meant we could not stop for lunch in Hatch, New Mexico, where Sparky's serves the world's most completely awesome green chili cheeseburgers (and, according to the spouse of one of our teammates, where there are more flies than on a Mexican bride -- it's amazing this person has not gotten his or her cracker-white ass kicked real good given the amount of time he or she has lived in New Mexico. In fact, it's a bit of a shocker his or her husband or wife hasn't delivered such a hiney whipping ). So we had to keep booking to Tucson in order to get to the "Platinum"meeting.

Because there are thousands of riders at Tucson, the starting position you occupy can make or break your race. The last people in line don't move a muscle for over ten minutes after the man says "go". People qualify to start with the fastest 5% of the racers by riding Tucson in a time faster than what the race organization has designated as the Platinum qualifying time. Once a person has earned Platinum status, they keep it for three years, even if they develop ALS in the meantime. That, as you probably know, is what happened to me. I last hit the Platinum standard in 2009, so my Platinum status expires next month.

If you have Platinum, you use it, simple as that. The other starting areas are soooooo uncivilized in comparison. The price to pay, however, for access to Platinum is you have to attend a meeting at 6:30 the night before the race. This is not what you want to be doing at that time. You want to be eating. Or tinkering with an adjustment the bike shop made on Thursday that you haven't tested on the road -- the type of adjustment where a quarter of a turn with the screwdriver can make the difference between the bike going "hmmmmm" and "k-chunk-a-krack-awhacka-whack-whack". Based on years of experience with bike sounds, I can tell you one of those sounds is very bad. But if you are Platinum, there's no time for wrenching. Until after the meeting.  And until after dinner. This ensures you will start wrenching late at night under the illumination of a street light in the hotel parking lot. Platinum rocks.

As I was saying, no time for lunch because we would be late for Platinum. And if you are late for the meeting, they make you sign-in and stand in the back and wait until everyone else has gotten their passes before you get yours. And you have to write "I will not be late" on the blackboard 100 times. Platinum rocks.

Happily, Marcia had picked up breakfast burritos for the trip. Oh yeah.

John and Paul drove the entire trip -- 7-1/2 hours each way. That plus a day on the bike in between. Nonetheless, from behind scruffy beards and bloodshot eyes, they both claimed to have had fun. After the Platinum party, we stuck around at the event expo because Paul had found a set of wireless two-way headphones that might come in handy for Jean and me, in that Jean would be able to hear me anytime I said "mmlgrabpth" ("can we stop so I can take a leak? "), to which she would reply "I love you too", and I would say "rathflugerimishp" (yes, but I need to pee"), and she would nod and say "Tuesday sounds perfect".

So it's a good thing we found the woman at the Cardo booth. On a serious note, these things kick. Brenda is going to set us up with a set for use around the house. That way, I will be able to reach Jean from across the house: "mmgrblnghoderp" ("can you please come back here and help me take a leak?"), and she will be able to say "no joke -- I totally agree".

So by the time we reached Lorrie and Steve Park's house, it was very late, we hadn't eaten, and we hadn't even had a chance to consider the subject of our tinkering operation. They had prepared a feast for us (quite a while earlier, actually ). It turned out to be so good, we completely skipped the tinkering, opting instead for dealing with necessities like drinks, food, clothing and whether we had air in most of our tires.

The late bedtime resulted in a missed wake-up call, a late departure for the start and sneaking in to Platinum one minute before it closed. All because we didn't leave Albuquerque on time.

Jean, Nancy and I were the Platinum part of the crew, and, while Paul, Dan and John toiled in steerage, race officials took one look at us and decided we were a bad mix in the Platinum corral, so they moved us to the VIP section where we would be surrounded by sponsors, pudgy former pros, and a local TV weatherman as opposed to several hundred dehydrated and sleep-deprived Type-A's.

We got off the line fine, and made our way comfortably to the first river crossing at 8 miles. When I talk about a "river crossing" in the context of a road race, you might reasonably imagine a "bridge". Not at Tucson, hombres. In Tucson it means crossing a dry river bed. Here is the Laurel and Hardy version of the race leaders hitting the Santa Cruz (click here).

We also found the sand quickly. Indeed, my left ear found the sand once Steve and Nancy began pulling our rig. Out of the river and back on dry land, Steve offered up snacks and helped with a comfort issue until the boys rolled up.

  

With the gang of six assembled, we rolled out while Steve went to gather up Marcia and Lorrie for a rendezvous at mile 48, where they could help us navigate the second river crossing (also not a bridge).

As the "stoker", the rider on the back of a tandem, my job was simple, as I saw it -- turn the pedals, and occasionally offer Jean non-binding recommendations on gear selection. The latter was made considerably easier by our new headsets. It was adequate for me to simply whisper "darling, please shift" (it's possible I may have truncated this to "shift" from time to time). Somewhere in the middle of the race, I learned my captain and I had failed to completely communicate on the issue of job responsibilities. My headset crackled "I thought being captain meant I was in charge".

The second crossing is typically a mess -- lots of sand as loose as a long jump pit. It was a pleasant surprise to find 90% of it completely rideable. Our sherpas stuck with us to the end, which is where the only nastiness was, and we were all rolling again.

 

The day was about half done at that point, but that was essentially the end of the drama except for one broken chain, some cramps and various repetitive motion irritants suffered by several members of team Oso High.

Steve, Lorrie and Marcia kept us entertained by leapfrogging us for hours during the second half. One of the great things about Tucson is the support of spectators. Everyone roots for everyone... Almost. Click here for a moment Lorrie would like to have back.

In the last miles I was not in usual semi-brain dead zone that tends to appear late in a long effort. Indeed, I remember slices with extraordinary detail.  In 2010 we approached the finish feeling a bit down because it might/probably would be our last. In 2011, more of the same, plus gratitude for having been blessed with a one year victory lap. 2012 would not have been possible without the support of our fabulous friends and family. In the absence of a miracle, the book is closing on biking in all its forms and adaptations. Sounds kind of silly to be melancholy over bikes in light of everything we're facing, but bikes are all that separate me from spending the rest of my life in a chair, a wheelchair or a bed. While all this rolled about in my head, it was mixing in with an indescribable high for the thrill of getting yet another one-year victory lap.

Saturday night was for celebration, and we cut into the time set aside for that by pushing daylight with our ride, which we wrapped up in 9:29. After a day like that in the saddle, I was able to enjoy yet another Steve and Lorrie feast, and drifted off to the sound of laughter fueled by rum, wine and the pure joy of one of the Great Days.

Next up?  We'll see. I'm going to just let this one sink in for a while.

 

Days 855-856, November 15, 2012. NEWS FLASH FROM THE U.S. ANTI-DOPING AGENCY!

The United States Anti-Doping Agency collected the following Sample(s) from you

(Sample Number(s): 1555339) on 10/26/2012 as part of our Out of Competition

Testing Program. We are pleased to inform you that the reported results do not

indicate the presence of any prohibited substance and/or method.

This leaves me several hundred negative tests, a handful of bribes, and a dozen former teammates cleansing their souls from being in the same boat as Lance Armstrong (if you are one of his lawyers... Bring it! )

However, I am not skating scot-free yet. The USADA letter continues, ominously pointing out that they will be keeping my piss. Forever.

We may retest or reanalyze any Sample in accordance with the applicable rules, and therefore, we may

retain all associated data or Samples for future reference.

God bless America and her tax dollars!

NEWS FLASH from DISTRICT 5AAAAA! Jimmy is the District's Soccer Player of the Year!

Days 853-854, November 13-14, 2012. El Tour de Tucson. In 2004, I was just getting hooked on bikes when Tim Holm told me about El Tour. I did lots of math over the next year as I looked toward my first try at this 109 mile bad boy.

The brass at USACycling consider Tucson a "tour", not a "race" because some people wear funny costumes or ride bikes which have head tubes with a angle less than or equal to the tangent of the pythagoras of the tire circumference divided by bottom bracket times pi plus an avocado.

If you win Tucson and show up at USAC's office to ask for a Cat 1 license, they will tell you your trophy plus about three bucks will get you a cup of coffee at Starbucks -- not the one in our break room, pal, the one down the street.

But this is one pig that is no longer a pig once you put lipstick and a timing chip on it, it's a race. A chaotic one, to be sure, but it's a race. Usually there are about 5000 riders in the 111 mile event, and most of them will, at some point during the day, drop a water bottle that will scurry about randomly on the pavement under the pack of racers, sending two three to the hospital and 15 or 20 to the bike shop.

Jean and I will be riding one of the silly bikes, the tandem recumbent. Because of our low profile, water bottles will pose no threat. In fact, we may take a few extras with us to sprinkle around to spice things up during the monotony of a long day in the saddle.

We have quite the gang for this one -- Paul Mohr, John Blueher, Dan Porto, Nancy Fortin,Marcia Schick, Lorrie and Steve Park, Jean and me. I realize, by the way, how lucky I am when it comes to caregivers. Many people with ALS find the whole experience to be the most desperately lonely process imaginable. Strings of high-turnover home care providers and a constantly shifting list of needs can turn just managing ALS a full-time job. When I have a new challenge on one of the bikes I have a team to turn to. Just in the past month, I've had engineering problems resolved by Jimmy, Dad, Mike Archibeck, John, Paul, Dan, and five or six others at Sport Systems, Two Wheel Drive and SRAM. It's really a miracle and a blessing. I wonder whether I would be like them if I were in their shoes.

Saturday will be a celebration -- maybe a very long one -- of the role of friends and wheels in our lives. Why 111 miles? They have an 80, a 60 and so on. I think the point is to attempt something that should not be possible. At this point in ALS, just breathing in and out can be a challenge. How lucky am I to still have the legs and lungs to make the whole enchilada El Tour a possibility? And the friends to make it happen.

Day 852, November 12, 2012. In an epic disagreement between my friend, who I will not identify by name, and his girlfriend, my friend said something that led to the following exchange:

Her: "Are you calling me a [very bad word]?!

Him: "I'm not saying you are a [very bad word], I'm saying you're acting like a [very bad word]".

This is sort of what the conversation was like with the doctor at hospital #2 when he was asked his opinion about the tube that had been put in at hospital #1. "I'm not saying they did something wrong, but I would never do it this way... "

He then proceeded to fix most of the problem, and that gave us a much happier weekend. A weekend when it never once occurred to to me to refer to anyone at hospital #1 as a [very bad word].

Meanwhile, we had a great visit with one of Jean's sisters, Ginny, and her husband Tony and son Nick. Tony Pisano is a character -- equal parts Tony Soprano, Vinny Gambino, the Sicilian from the Princess Bride, Ellen DeGeneres, and a little bit of Greg Norman (the part that occasionally hits into the crowd and is caught in a close-up saying "@#%$!! " as he breaks a club over his caddie's head). There is nothing subtle about Tony. He has a very sweet side, but his passion is entertainment. Tony is a stand up comic from the moment he stands up until he pulls the plug at night.

He sprays humor all around him like the wild-eyed postal worker with who snapped and wound up standing on the counter, laughing hysterically, while he waved his crackling machine guns all around. Not every wisecrack hits a target, and some bounce back and hit him in the butt, but everyone in the room winds up doubled over at some point.

If Tony uses two shotguns blindfolded, their son Nick uses a sniper's rifle with a CIA-style night vision scope and a silencer in delivering his impossibly straight-faced wit. Sorry about all the movie references, but there's a scene in the original Indiana Jones where the ninja martial artist confronts Jones with a whirlwind of numchucks, knives and body parts (that's Tony), then Indy, looking mildly annoyed, pulls out a gun and shoots the ninja assassin (that's Nick).

Ginny hardly lets on how much the performances amuse or annoy her, but every once in a while she can't help herself. After so many years of this, she has become a tough audience. But that has raised the game. Twenty years ago, Tony was all about middle school locker room humor, and today the material is -- relatively -- sophisticated. And then there is Tony's hair. Even Bill Clinton is envious. If Tony were dashing down flights of stairs to flee a burning skyscraper, he would stop in a men's room on every floor to check it out.

What a great time -- I wish I could have stayed awake for the whole thing, but I had this problematic hole in my gut...

Days 849-851, November 9-11, 2012. Another AHS sports update. The most popular high school mascot name in the United States is "Bulldogs". Tonight it was the only mascot, as the AHS Bulldogs faced the Las Cruces Bulldawgs. The Dawgs were bigger, faster and stronger than the Dogs. Whether they were on offense or defense, there were more Dawgs than Dogs on the ball, and that translated into a final score of 4-1, marking the end of the Dogs' remarkable season.

The atmosphere was electric, like, well, high school football. The AHS drumline was there making lots of noise and keeping the student section rocking. Las Cruces fans made a strong showing, too, with a small drum section of their own, and a rowdy bunch of people who made the three hour drive up to root for the Dawgs. One voice of a Las Cruces father penetrated the cacophony and reached my ears clear as a bell. Over and over, he yelled "abroche los zapatos!! " All the Spanish I know (or think I know), I learned (or think I learned from words on retail store windows or comparisons to French.  Remember the shoemaker in Pinocchio? His name was "Geppetto", which I have decided must be linguistically related to "zapato" even though neither of these words are French and I don't speak Italian. I'm pretty sure I've seen "abroche" painted on doors that don't open when you pull on them. Putting all this knowledge together, I concluded that the father was encouraging his boy to "push the shoes". I spent a good part of the second half trying to figure out how that applied to the Dawgs performance on the field, and, as the gap in scoring grew, wishing the Dogs could do whatever that was.

With a little help from some of the internets, I now know it means "buckle the shoes", which I should have known because "abroche su cinturon" is what is printed right next to the seatbelt light on every Spanish-speaking aircraft I've ever been on. And, incidentally, while I was looking up how to spell ‘Geppetto”, I discovered he was  actually a woodcarver …  Anyway, the Las Cruces father's recommendation to his son now makes a bit more sense, and it did not unlock the secret to the Dawgs' game plan.

For his part, Jimmy had a good last game of his high school career. He had some high-flying, heroic stops, but it would have taken more heroics and a flawless game to turn the result. At the end of the game he had a very proud daddy. One of the greatest lessons sports have to offer is learning how to handle adversity. As much as culture has tried to rip disappointment and failure from the experience of growing up, any game where score is kept ends with half the players unhappy with the result. Real life is full of tiny to massive losses, and allowing our kids to enter adulthood expecting a gold star every day leaves them ill-prepared for the many times life will rip them a new three -bedroom, two bath, double wide butthole.

When a kid takes a called third strike, I've seen three ways they respond: full temper tantrum, "I-couldn't-care-less" nonchalance, or Terminator-like "I'll be back" confidence. When I think back on my law career, the same is true of how my colleagues and I dealt with setbacks. While I had times when I kicked the copier or the Coke machine, and drove the long way home, hoping to find a cat to run over, I think my background as an athlete (especially as a hard-working but not very good one) helped me act like Arnold more often than I acted like Bobby Knight.

Tonight, Jimmy watched more balls settle into the net behind him than in the entire regular season. When the final whistle blew, he had the same choice to make as when he watched strike three hiss past his ten year -old knees. He made his decision in the instant he bent over to pick up his water bottle. When he stood back up, he was six feet tall and he jogged back to the Bulldogs' bench, pausing to offer a hand up to one of his teammates who had collapsed to the turf in despair. Then he led the team across the field in applause of gratitude for the Burque fans. Oh yeah.

 

Days 843-847, November 4-8, 2012. AHS sports update. The girls JV season ended with a nail-biter in the tournament championship. Locked at 0-0 at the end of regulation, the game was decided with a penalty kick shootout. Abby was the first shooter for the Bulldogs, and drilled her shot home in the right corner. She had two spectacular saves that should have been enough for the Dogs, but three Burque shots tracked right to Cleveland's keeper. Still, it was a great tournament and a great season for the Bulldogs and for our favorite Burque chica.

  

The boys are still at it. Their first round game in the 16-team state tournament was Saturday against Mayfield at AHS. The Trojans put on quite the display of Juarez -style street ball, collecting four yellow cards, one red, and deserving more. For a final exclamation point, after the final whistle, four Mayfield players sprinted across the field to attack Bulldog fans who had been -- shall we say -- enthusiastic in support of the home team. It didn't end well for the deflated Trojans, who also lost the game 4-2.

Tomorrow night the Bulldogs face off against the number four seed, Las Cruces. Tonight's team dinner took place in our back yard. It was fun watching the testosterone-fueled exuberance. They will remember tomorrow night for the rest of their lives, but they don't seem to know it, or they are too young to worry about it. If they play the game with the same spirit, they will have fun if nothing else, but this is a special group of young men. They reflect their makeup of their school -- black, white, hispanic, and recent immigrants from Mexico, Germany and Italy. Socioeconomically,they come from everywhere except the 1%. But they play like a band of brothers. And that should make Las Cruces very nervous.

Hole drilled in my stomach update. I'm sure this is for the best in the long run, but it's been a real pisser so far. Nurses (many Bannons and the home health nurse who is not a relative) have looked at the tube as if it had a forked tongue hanging out the end. Apparently, it's too small for an important intended purpose - - infusing ground up pills and small bites of prime rib -- and it is attached to my body by way of a surgical technique as consistent with today's standard of care as leeches and blood-letting.

So far, anything that enters my belly, through the tube or the way God intended, produces a stabbing cramp-like pain and/or sweating nausea. According to the several women who have opined on the topic, I am enjoying something akin to menstrual symptoms. I feel like I'm about to give birth to Chris Farley through my sternum. If that's what PMS precedes, it's a full-on miracle, and a testament to the power of motherly love, that males have not been slaughtered into extinction.

Days 840-842, November 1-3, 2012. Today I'm taking the pants off a Big ALS Lie. A feeding tube is a tube inserted into the stomach permanently by way of a hole poked through the abdomen. The outer end of the tube dangles freely so a big syringe filled with anything, regardless of its yummy score, can be plugged in to the tube so its contents can be squirted through the tube into the stomach.

For over a year, people have been suggesting or recommending I get one. Why? Well, it makes nutrition a snap. Instead of having to endure the monotony of chewing every Dougie-sized bite 30 to 50 times, one squeeze of the syringe can deliver 100 calories. And, the various recommenders continued, the procedure is "almost painless", "simple", "in and out", and "about as complex and uncomfortable as an ear-piercing".

Yeah, an ear-piercing where they use a railroad spike and drive it through the earlobe, skull, brain stuff, more skull and the other earlobe. That kind of ear-piercing. Or maybe an intestinectomy or a wild west-style bite-on-a-towel-soaked-in-whiskey bullet removal. Here's what I think they are banking on. By the time an ALS patient needs a tube, they are having tongue problems, so (a) they can't tell other people how much the surgery sucks, and (b) they can't scream. The surgeons are not dummies -- they wear masks so you can't see what they look like so you can run them down with your wheelchair later. In my case they even played a shell game with who would do the surgery. A surgeon came in to our room and explained the procedure, but he was unable to answer two questions that, in hindsight should have given us pause -- like enough pause to go home. To wit, "what anesthesia will you use" ("I don't know -- I'll have to look into that"), and "will you be doing the surgery?" ("I don't know").

In truth, there was no anesthesia because they don't give anesthesia to ALS patients because of the risk of the anesthesia critically depressing a comprised respiratory system. Sensible, but my vital capacity is still within the normal range -- as in normal for people who don't have ALS. I pointed this out when he said my vital capacity was 3.6 liters (I told him it was 4.3 and he mumbled then left the room).

We should have been more inquisitive, but we believed the ear-piercing characterization.

On that topic, we decided to go forward with this thing when we met with our neurologist three weeks ago. One of the things she told us was "they" have a new type of tube that disconnects at the skin when you aren't using the tube so as to reduce the Frankenstein factor. The only thing she omitted from this chat was that "they" doesn't include the surgeons at her hospital -- UNMH -- the one we were sitting in when we had this little talk.

The whole thing was a nightmare, from the medieval no anesthesia surgery to a night without a minute of sleep, to seeing a baker's dozen of doctors only two of whom are over 30, to our discovery about ten minutes before I was discharged that our nurse really doesn't know much about ALS.

In the long run this will be a sweet deal because I will be able to inject a rib eye.

   

Days 837-839, October 29-31, 2012. Happy Halloween!

 

Days 835-836, October 27-28, 2012. The Day of the Tread!  A 64 mile fund raising ride for our local children's hospital. Team Oso High for the day was Jean, Paul Mohr, Dan Porto, Michael Donovan and John Blueher (John has been sidelined by a back injury most likely incurred when he saved me -- with one arm and his lumbar spine -- from tipping over into some yard equipment, but he won't admit it ). John drove out to the halfway point to refuel us, and all I could do to show my thanks was nap in my lounger on the tandem.

By my standards, this was an uneventful ride. A pancake-flat course on a perfect New Mexico fall day. We are all preparing for El Tour de Tucson, which will be 111 miles only three weeks from now. It went well in that way, but I'm here to tell you Tucson will be a long day. Including our many leisurely stops, we averaged about 13 mph. This is slower than the average pace for a competitive race walker who is in a hurry to go a mile.

Tucson could take us over 8 hours at this rate. That's a long day at the office, and I only go that long without a nap when I'm asleep.

 

We do have one trick up our spandex that could make us more swift in Tucson. Speed on a bike is determined by the following formula:

W = Cv [K1 + {K2(Cv+Cw)(Cv+Cw)} + {10.32Em(s/100 + 1.01a/g)}]

Where:

  • W = power in watts
    • 1 W = 1 joule/sec
    • 69.78W = 1000 calories/min = 1 kilocal/min = 1 Calorie/min
    • 1 Calorie = 4186 joules
  • Cv = speed of cyclist in meters/sec
    • 1 mph = .447 meters/sec
    • 1 mph = 1.609 kilometeres/hr
  • K1 and K2 are constants (see table below)
  • Cw = headwind in meters/sec
  • Em = mass of cyclist and bicycle in kg
    • 1 pound = .4536 kg
  • s = slope or grade in %
  • a = acceleration of the bicycle in meters/(sec)(sec)
  • g = gravitational accel = 9.806 m/sec-sec at sea level

Simplified: speed = pedal RPMs x (number of teeth on the front chain ring x the inverse square root of the number of teeth on the rear chain ring x tire circumference + cos of the cube root of an African Ground Swallow).

Simplified further: The faster you turn the pedals with a bigger front chain ring, a smaller rear chain ring or a bigger rear wheel.

We can't use a bigger rear wheel or a smaller rear chain ring, so that leaves the front chain ring and the RPMs. Our RPMs are limited by ALS, because it is making the big muscle groups in my legs very stiff and they don't communicate well with each other. Practically speaking, this limits us to around 70 RPMs. Our pre-ALS spin speed was nearly 90. So that leaves the size of the front chain ring. A standard front chain ring has 52 teeth. You can get a big one with 56 teeth for maximizing downhill speed in time trials. We found a 73-tooth monster. It is like a manhole cover. Or a trash can lid. A hula hoop. A buzz saw. And it's going to be on the tandem next week!

Meanwhile my Dad and my second Mom Charlotte are in town for a visit and to fix all the stuff I have broken learning to drive the wheelchair in the house. That could take a while.

 

Day 834, October 26, 2012. The evening started off looking fairly innocuous. Jimmy played his final regular season soccer game with an 11-1 thumping of Rio Grande High (he didn't give up the goal). He ended the season as the number one-ranked goalkeeper in the state. The seedings for the state tournament will be announced Sunday. Abby didn't have any difficulty keeping the ball out of the net in the varsity's 7-0 win over Rio Grande. Tomorrow she will open the JV tournament and will play in both the JV and varsity tournaments.

Then we joined a group of friends to go to dinner with Tim Holm's mom on the north side of town. When we left the restaurant things got weird. Jean's phone receives my e-mails because she stole my phone to support her texting habit. We were sitting in the car outside the restaurant, and  I had a sudden urge to check my e-mails. I asked Jean to have a look, and she said "there is one from Nigeria." It read:

"Doug this is Cindy and I'm a DCO with your father and you've been selected for a competition testing. I am currently at your house forty two fifty Aspen Avenue. It is now eight thirty six. You have sixty minutes from now to report to this location for testing and I will conclude my attempt at nine thirty six which is sixty minutes from now. Thanks. Bye."

"DCO with my father?" I pondered out loud.

"Yes".

Then it occurred to me we have this fancy new voice mail system that transcribes messages with a voice recognition software and sends it to you as an e-mail. I asked if she was reading from an e-mail or a voice mail. It was a phone message. "DCO with your father?" I repeated to myself. Jean asked "delete?"

“Wait – that means DCO with USADA! NO! -- it's the doping people -- what time is it?! "

"8:50".

Missing a random drug test is almost as bad as flunking one. And if you miss more than one, it is exactly like having your pee test hot. So we decided to head straight home.

The rules are quite tight -- so much so you have to wonder how anyone ever gets away with anything. When I qualified for the National Team in April I became subject to drug testing, both in and out of competition. At that point, I was required to submit a "whereabouts report". As per its name, this report must iidentify where I can be found. Every minute. All day. Every day. If I change my plans -- say I decide lunch will be at Wendy's instead of at Lotaburger -- then I can e-mail or text the modification to USADA. I have submitted the reports as required, but I have to admit I have been less than meticulous about it. My reports have disclosed only that I'm "training" (every day from 9 to noon), or "at home" (the rest of the time).

I sort of figured they would get through all of these guys

 

before they got to me

 

That, however, is apparently not how it works. So if you are assuming they won't test you because you are too low profile to be on the radar, you better come up with a new plan, maybe something like jumping out the window to the alley and running naked to a nearby dumpster. There really can't be lower profile than paracycling class T-1.

If your new plan is to strap a bag of Marie Osmond's urine to your leg, that will also not spare you. This thought came to mind when I found myself trying to relax enough to fill the cup while I had some things working against me such as:

(a) I was balancing myself against a wall because standing up solo is something I do these days only when I am not doing or thinking about anything else. (b) my pants were required to be lowered to my knees and my shirt raised to my sternum (that is an honest-to-goodness actual rule). (c ) Jean was kneeling in front of me holding a cup while a man we had known for about three minutes looked on with a serious and critical eye to assure there was no hanky-panky. Do you have a visual? So forget about the Marie Osmond stunt if you're taking notes.

Through the whole process I was thinking about all the elite distance runners who live in Albuquerque for off-season altitude training, and how that must explain why USADA would spend your tax dollars sending two people from Lubbock, Texas to Albuquerque to bring home a briefcase full of piss. In the end, it's more puzzling still.

What USADA actually did was send two people from Lubbock, Texas to Albuquerque to fetch two bottles of it -- my "A" sample and my "B" sample.

Your tax dollars at work. I hope they don't know something I don't know. After these remarkably nice people left, it occurred to me "that protein powder Jean puts in my smoothies -- you know, the stuff that has 700 calories per teaspoon – what if it has dried cheetah blood or some other banned form of rocket fuel in it?” While testing someone whose hands have to be strapped to the bike to keep me on it may seem a lot like giving the 12 year-old with freckles and pig tails the cavity search while the bearded man with wild eyes chanting "death to America" strolls through the metal detector, I decided to enjoy the opportunity to feel like someone who could be a possible suspect.

Days 830-833, October 22-25, 2012. Do the ends justify the means?


I began the introduction to this blog series over a year and a half ago with:

We have no Lance Armstrong -- someone who battled the disease, won and went on to wage war on ALS.

As it turns out, cancer patients and advocates also have no Lance Armstrong because, according to the cycling brass here and abroad, after he was diagnosed with cancer, he never won another race and "deserves to be forgotten".

The cap has been put on the years of investigations, speculation and accusations. It's official -- Lance was a kingpin of the dirtiest era in the dirtiest sport (except body building, if they have any rules). If everyone was doping ten years ago, wasn't it a twisted but level playing field?

Here's my personal doping story. In 2008 and 2009, I was training very hard for an amateur cyclist. I was moving up in the ranks on the road and in the mountains. My training program was home made, but it was producing predictable results. The point of that preface is to explain how progress was measured in tiny increments. Once a week, I would ride the same 40 mile course hard. A good day might be 20 seconds faster than a day when I felt like I had been dipped in sewage before I got on the bike. I was Rainman on two wheels. At any moment, I could calculate how far I was from my best time, my worst time or my most recent time.

One day in 2009 I headed out for my three-gatorade lunch. It wasn't a special day. I hadn't taken a few days off or focused on that day in any way. At my first time check -- 10 miles -- I was a full minute ahead of my fastest day on record. Another minute ahead at 20, then a total of three and a half ahead at 30. More amazing to me was how strong I felt. It seemed I could go faster but I had been holding back a bit because I was worried I might blow up.

TI finished 5:15 faster than I ever had or ever would ride that route. I sat down at my computer to do important legal work, and I pulled up my training record. As I stared at the screen, daydreaming about going pro at 48 years old, I noticed the wrinkled DayQuil foil pack sitting on my desk beside the keyboard, and it all suddenly made sense.

The active decongestant in DayQuil, pseudoephedrine, is a banned substance in cycling. Among other things, it increases the heart rate, which can increase the amount of oxygen available to muscles to do things such as pedal a bike. I reviewed the data from my bike's computer and found my heart had been pounding away at a higher average rate than I would record for even brief periods of the highest intensity during a race.

In my training log, all the data from that day is accented by an asterisk. That was an accidental juicing at the hands of an over-the-counter medication, and a half dose at that. Imagine what a monster could be created with the good stuff and medical monitoring to achieve stunning results without detection. Imagine a guy who could ride away from the pro peloton and go solo for hours at a time while the best in the world struggled behind, unable to cut into the gap, despite having the massive advantage of drafting at their disposal. Imagine a rider, mammoth by professional cycling standards -- 160 pounds -- who could drop the hammer on a gaggle of powerhouses hauling 20 or 30 fewer pounds up the most vicious slopes in the Alps. Imagine a man who could do this year after year, winning the most difficult three-week race in the world a mind-boggling seven times in a row. [You can probably guess where this is heading, eh?] Imagine the first of these wins coming two years after cancer exploded throughout his body, ravaging almost every physiological system.

Yeah, all we will ever know for sure is that Lance Armstrong was the best chemically-enhanced cyclist in the world in a time when the rules relied more upon integrity than verification, and the most demanding of the rules apparently didn't apply to him.

Thinking about the things Lance did during his career in hindsight can make you chuckle, disappointed in yourself for not knowing at the time that the many feats he performed that seemed superhuman at the time were, in fact, superhuman. My favorite retrospective on Lance's career isn’t from Le Tour de France, though, it’s from the 2008 Leadville Trail 100 Mountain Bike Race. Armstrong had retired two years earlier, but hadn’t exactly spent his days watching South Park and eating gummy bears. He was riding a wave of public adoration through his fund-raising and participation in marathons and triathlons.

He couldn't resist the temptation, and he got back on the bike to race in Leadville. Leadville is a mountain bike race that is more accurately described as a bike race in the mountains. Its extreme reputation owes itself to the ridiculous elevation of the course, with a low point of over 9,000’, a high point of 12,500’, and which soars above 11,000’ five times. There is, however, nothing technically challenging about the course. 20 miles of the route is on asphalt, and the rest is on graded forest roads and jeep trails. There was, at that time, less than a mile of ho-hum single track. In short, a great course for a roadie.

Armstrong is an accomplished mountain bike racer, and was then living in a palace at altitude -- in nearby Aspen -- and his friends at Trek created an 18 pound rocket for him to ride. Lance placed second, behind a 45 year-old retired mountain bike racer.

When I look back on that day, I think those of us who were in Leadville were treated to one of the rare opportunities the world had to see what he could do. Clean.

Days 828-829, October 20-21, 2012. Tim Holm is a writer. In the context of our profession, I never encountered his equal, but he also writes fiction and poetry. Every once in a while, I receive an e-mail  from him with a curious subject line. The one that announced what follows was entitled "Shaquille", which could have meant only two things to me -- a four year-old boy whom Jean, Jimmy, Tim and I met one late afternoon at Cane Garden Bay in the Virgin Islands in 1998, or a very large man famous for getting into cat fights with Kobe Bryant. This, I quickly concluded, concerns the former.

 We claw back in time looking for him

 Beautiful black boy in the Caribbean

 Laughing and joking on the beach

 As we watched the sunset from that tree swing

 That we saw on the post card then found in real life.

 The boat was anchored 5O feet away in aqua blue tranquility.

 And we laughed together without a thought of the future.

 Shaquille raced your son Jimmy across the sand.

 Swimsuits dropping low showing black butt and white butt.

 We had forever that night and God smoked a cigar with us.

 Shaquille beat Jimmy by a whisker and they laughed

 While you and I smiled and  tipped corona bottles.

 God let us tilt the hour glass and make this heaven.

On the topic of Heaven, we had a visit from a priest we have known for a long time last night. I keep playing the tape of our conversation over in my head, and I keep hoping to find the key to understanding how I misinterpreted what was said.

Several weeks ago I wrote about Father Jimmy's sermon on biblical miracles (click here). The gist of what he said was that God has the power, but chooses not to cure disease, prevent natural disasters and man-made mayhem, and to make cars burn cow manure and produce emissions that smell like apple fritters. Summarizing, Father Jimmy said "if we become obsessed with the cure, we miss the healing power of God." The gist of the blog entry was to say "really?! God would rather have us feel better about the rape and murder of a child than just prevent it from happening?"

I have always seen our friend, Father Bob, as a voice of reason in trying to understand the traditions of the Church. Here is a Father Bob-ism: if asked whether Jesus really walked on water, Father Bob would respond "It's true. And it might have actually happened." According to Father Jimmy, we should not pray for the cure because we may miss the healing power of God. I asked Father Bob about this, fully expecting a reassuring Father Bob talk, but it got uglier. Bob said that he prays for what is best in God's judgment. "Remember that Stephen King movie 'Pet Semetary'?", he asked. This is the story where people are sad about their dearly departed pets, and the critters come back to life as demonic killing machines.

It was quiet at the table for a moment. I was chomping on a bite of enchiladas, and Jimmy was looking at the ceiling. Then Jimmy lowered his gaze to Father Bob and said "so if Dad gets cured, then he will become a serial killer?"

That was the end of the conversation because Father Bob only chuckled, and I was afraid Bob might say "yes" if I pressed. In the Vice Presidential debate, Joe Biden said he opposes abortion because he is a Catholic. Life begins at conception, but he ignores such technicalities as Vice President because he is a democrat. I'm paraphrasing here, but not much. Biden is an example of a "Cafeteria Catholic", someone who picks and chooses from the Church's positions on various issues. Indeed, if it weren't for Cafeteria Catholics, there would be no Catholic democrats because they could not reconcile the irreconcilable positions of the church and the party on abortion. And there also wouldn't be any Catholic republicans because they couldn't square the positions of the church and the party on issues of social justice. In this manner, pure Catholicism is antithetical to democracy.

Employing this dizzying logic, I, too, find myself in the cafeteria line of Catholicism, pondering the green beans and a tray identified as "God Can Cure You But You Should Be Grateful Instead For Feeling Comforted  As Your Body Falls Apart Bit By Bit". I pretend to not notice that that one, and slide my tray down to the “Make Your Own Sundaes and Define the Power of the Almighty" window. There, I select vanilla ice cream and sprinkle on some "God Cannot Alter Events on Earth, But Faith Can Deliver Peace of Mind." Satisfied with my creation, I move on to the "Apple Pie, Abortion and Trade Unions" tray.

This allows me to be content (grateful, in fact) for prayer asked and answered for "peace of mind and strength of body and spirit" for our family and others. I think I'll stay away from the topic of cure in case Father Bob's "Pet Semetary" theory is right. I'd hate to wake up one morning to discover I was cured, but that I needed to drink your blood and avoid sunlight.

Day 827, October 19, 2012. AHS sports update. On Wednesday, Jimmy and Abby both delivered shutouts for their respective soccer teams, and neither of them landed a punt shy of the midfield stripe. Unless the wheels come completely off in the last week of the season, both teams will make it to their end-of-season tournaments and the boys should have a very good seed if they continue their roll (they are currently 14-3, having given up only eight goals in 17 games).

Days 824-826, October 16-18, 2012. Dr. Schneebeck’s Medical Advice for ALS Patients.

But first, a word or two in the nature of a disclaimer: I am not a physician. When I was in college, I thought about trying to get into medical school, mostly because I had destroyed both Anatomy and Physiology in the same semester. So I signed up for Chemistry 101. About half way through the first lecture, I rose, urgently, from my seat as if I had been summoned to the war room at the White House. If this had happened in 2010, I would have snatched my cell phone from my pocket, pretending to take a  life-or-death call while bounding, two steps at a time out of the lecture hall. I hadn't understood a word that had been spoken. I went straight through the science building, to the registrar’s office, dropped  Chemistry and enrolled in a photography class. I am not qualified to render medical opinion. I am not licensed to give medical advice. In some jurisdictions it would be a misdemeanor for me to even think the things I am about to say. What you are about to read is offered for its entertainment value – sort of like everything Rush Limbaugh says. If you are having difficulty following me, you should move your cursor to the big red "X" and press the left click thing on your mouse. Are you still reading? If so, you have impliedly agreed that nothing I say can or will be used against me in civil litigation by you or your survivors. Are we on the same page?


As I look at the blank white area below the flashing cursor, I have a liberated feeling -- like I can write literally anything here and no one should get mad at me. Maybe now would be the time to talk about that night in 1977 when I was sitting with my best friend on a cinder block wall behind Fairfax Auto Parts munching on fried chicken and throwing the bones in a dumpster when we came up with what, at the time, seemed like a very good idea, but, in retrospect, was most definitely not. But that's not why we're here, you and I. We're here to talk about science and ALS. So here goes.

If you have ALS, do not stop. Whatever you were doing before, do not quit. If you ask your doctor about exercise, you will get the party line -- "the standard of care is to recommend stretching and passive range of motion".

I'm not saying everyone should do all the stupid stuff I've been doing since 2010 (in fact, for the record, I specifically recommend against everything I did between August 10, 2010 and September 30, 2012, to the extent that someone said "go" at the beginning of the thing). No, here I'm talking about far more basic stuff.

From the moment I was diagnosed, if I had a nickel for every time I've been told I should do things to conserve energy, I'd have a whole bunch of nickels. The impression I got from the start was that I should sit down carefully as if I were pregnant and ordered to bed rest.

How the hell has medicine come up with this turd in light of what we know for sure, to wit: (1) if we have a muscle and don't use it, then it will shrink.

Even if that was all we knew, telling ALS patients to sit down and shut up seems like a very bad idea. ALS and sitting on your ass both cause muscles to shrivel up by a process known as "not engaging them", so why make the job of ALS easier? A vignette may help.

When I walk, there are times when I am very unsteady – as if I had a billiard ball nailed to the sole of each shoe. There are other times when it is not so bad. When we are at home, I use a walker when I am feeling relatively steady. When we went to Prague, we took a small travel wheelchair but no walker. As a result, I spent very little time on my feet for 10 days (smashing my head on the bathroom floor on day one when I tried to walk without assistance helped keep me in my place). By the time we got home, I found my ability to walk had deteriorated significantly. As I have spent more time with my walker, my skills are improving somewhat. Why is this happening?

Muscle strength and function lost to ALS doesn't return. Never. This is because the loss is caused by the death of the neurons that fire the muscle. Muscle strength and function lost to inactivity, however, can be rebuilt with exercise. And, not only that, but healthy motor neurons can still be used to make the muscles they serve stronger. In this way, it is possible to offset some of the losses. Of course, you have to use your head (not necessarily the way I do) and not take it to excess. If you feel worse the day after, you probably overdid it. And, of course, it has to be safe. I realize my credibility in this arena is marginal, so use your own judgment. Or call Jean. She actually has very good judgment, she just has a hard time telling me "no" because, well, because I have developed a mighty effective baby seal eyes "come on, I have ALS" look.

Johns Hopkins University, home to dozens of very smart people, is funding a new study:

Resistance and Endurance Exercise in ALS

How can exercise be combined with other treatments? Standard of care has been considered to be stretching and range of motion exercises; there has been little, if any, research into other forms of exercise in ALS patients. In this pilot study, 60 participants with ALS will be assigned to treatment in 1 of 3 arms: resistance exercise, endurance exercise, or stretching and range of motion exercise. Researchers are looking to learn about which is safe and tolerable for patients with ALS. The trial will enroll at four locations: Johns Hopkins University, Massachusetts General Hospital, Carolinas Medical Center, and Washington University in St. Louis, Missouri.

Here’s how it’s going to come out:

The endurance and resistance people will do significantly better than the stretching people, and the the endurance people will appear to do somewhat better than the resistance people, but the difference between them won't be statistically significant. Overall, the investigators will conclude the results warrant an expanded, national study. And more funding.

Dr. Schneebeck has a recommendation for the coneheads in funding at Johns Hopkins -- assign this one to an undergrad who is got into JHU because his meemaw was on the Board of trustees, and let's get the scientists back to the cure thing, hmmmkay?

Day 823, October 14, 2012. Albuquerque High sports update. The J.V. goalkeeper got injured this week and Abby is the only other player on the team with experience in the goal, so, with one day of practice, she put on her gloves and took on the Evil Dynasty known as La Cueva.

When the first dust settled, she had 15 saves out of 18 shots on goal, and kept a game credible when The Death Star came into the game expecting to notch another mercy rule shutout.

On that topic, the boys played Rio Grande this week in a game that looked like a mercy rule shutout for Burque, and it was. In a 10-0 rout that only went ten minutes into the second half, Jimmy played forward and recorded three assists and two goals.

On the season, taking after his little sister in the goal, Jimmy is the top-ranked keeper in the State.

Boys : AAAAA

Name

School

Year

Saves

Goals
Allowed

Minutes
Played

Goals
Allowed
Average

Jimmy Schneebeck

Albuquerque

12

24

8

1005

0.6368

Nate Williard

Eldorado

12

26

7

831

0.6739

Jarrett Bremmer

La Cueva

12

49

12

1055

0.9100

Pedro Neri

Valley

11

0

7

611

0.9165

Anthony Carroll

Sandia

12

62

13

1068

0.9738

Nick Jetter

Volcano Vista

12

47

15

1040

1.1538

Nate Yeager

Rio Rancho

9

101

20

1125

1.4222

Ever Mijarez

Highland

11

52

11

580

1.5172

Sergio Torres

Hobbs

11

42

18

886

1.6253

Justin Dunford

Hobbs

12

31

19

589

2.5806

Jesus Madrid

Clovis

12

44

28

835

2.6826

Ryan Garcia

Carlsbad

10

163

72

1296

4.4444

 

I'm just sayin'.

Days 820-822, October 12-14,2012. I'm going to go ahead and call this a silver lining. Jimmy showed me the essay he has written for his college applications. The prompt was to write about someone who has shown determination. He wrote about me. Just between us chickens, that's like shooting fish in a barrel these days, right? I mean it's so easy, I do it almost every day, don't I? But here's the part that's special to me -- it's not all about ALS; instead, he wrote a lot about the sort of husband, father and friend he remembers from before ALS. In the whirlwind of the last 2-1/2 years, even I have a hard time remembering that dude sometimes. I'm grateful Jimmy does -- and that he doesn't remember him as a big jerk.

Days 816-819, October 8-11, 2012. Alopecia areata (AA) is a medical condition in which hair is lost from some or all areas of the body, usually from the scalp. Because it causes bald spots on the scalp, especially in the first stages, it is sometimes called spot baldness.

One can only imagine the horror of an AA diagnosis. In its most severe form, AA can result in complete baldness – like Michael Jordan. While you ponder the grim possibilities, you will probably be stunned to learn that no one has ever died from AA. It's nothing short of a miracle, but probably only a matter of time.

So, it's easy to understand why FDA has proposed to in include AA among 20 diseases to be studied as part of FDA’s responsibility to promote patient-focused drug development for disease areas that satisfy the following criteria:

 

  • Disease areas that are chronic, symptomatic, or affect functioning and activities of daily living;
  • Disease areas that reflect a range of severity;
  • Disease areas for which aspects of the disease are not formally captured in clinical trials;           
  • Disease areas that have a severe impact on identifiable subpopulations (such as children or the elderly);
  • Disease areas that represent a broad range in terms of size of the affected population; or
  • Disease areas for which there are currently no therapies or very few therapies, or the available therapies do not directly affect how a patient feels, functions, or survives.

 It is also a snap to identify the logical basis for excluding ALS from the list. Due to the fact I have been retired from the practice of law for over a year, I no longer consider myself bound by the tentacles of logic. Therefore I accepted FDA’s invitation to provide comment on the proposed list of diseases as follows:

ALS is currently untreatable and incurable. The only FDA-approved drug for ALS was approved based upon evidence showing the drug extended survival by two months.  Dog ownership provides more benefit than the cumulative product of 100 years of therapy development efforts (British Journal Of Health Psychology, 2007). People with ALS have rarely if ever had direct input into the drug development process and associated risk due to the rapid progression, devastating effects and invariably fatal nature of the disease. With a death rate approximately equal to the onset/incidence rate, the overall ALS population has not grown statistically.

Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS (two per 100,000 people) is five times higher than Huntington's disease and about equal to multiple sclerosis. It is estimated that as many as 30,000 Americans may have the disease at any given time.

ALS fully meets every criteria for inclusion established by the FDA. The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows. A myriad of other conditions can be associated with ALS to include pneumonia, bedsores, constipation, and chronic pain.

ALS should be included in the PDUFA V list and be made the subject of one of the first two PDUFA V meetings in 2013 in order to ensure those commenting in support of ALS are given the chance to participate in the full process. The invariably fatal nature of ALS and rapid progression make front loading an ALS meeting critical.

If you are so inclined, you can make comment to the FDA. Click here, then hit "Comment Now" in the upper right hand corner.

Days 803-815, September 25-October 7, 2012.

Prague has a bloody history. In 838 BC the Pope invaded the present day lands of the Czech Republic, placing them under the control of the Holy Roman Empire. In the centuries that followed, Prague and its inhabitants were seized, ceded, extorted, purged, oppressed and co-opted by the Huns, the Asswipes (Czech the spelling), the Hapsbergs, Rome, England, Italy, Hitler, Stalin, Brezhnev, Gorbachav and, finally (since 1989), themselves. Czechoslovakia split into the Czech Republic and Slovakia in 2003 because the Slovaks figured it was probably about time for someone to invade Prague again.  In Prague’s recorded history, the only period of coexistent peace and democracy has been the 23 years since the collapse of the Soviet Union. Even during this period, democratic and capitalist reformation has been relative.  The economy and the government appear to be run under the principles that would have applied in New Mexico during Bill Richardson’s administration if the United States Department of Justice did not exist. Hang in there, I’m going to connect this up momentarily.

“Fenetre” is the French word for window. A “ fenstermacher” is a German window maker. “Defenestration” is the process by which governmental officials have been removed from office in Prague since 1334. The way it works is simple. The incoming government officials throw the outgoing officials out the windows of the Prague castle and watch them land on their heads on the cobblestones below.

When in Prague…We arrived Wednesday, Czeched in to the hotel, Czeched out the race course and built the bike.

Thursday we sprang out of bed at the crack of 2 pm and got ready for a pre-ride of the race course. Then came the first bloody defenestration of our visit. I lost my balance outside the bathroom of our hotel room, fell backward into the wall, bounced off the wall, and fell backward through the door into the bathroom, bashing my head on the marble floor.

About that time, Jean decided to see whether our friend Andy Kain had arrived at the hotel. A few minutes later Andy walked through the door of our room, ducked under the crime scene tape and we all had a moment to share our greetings, having last been together in April. Then Jean and Andy cleaned up the blood. Thus properly prepared, we headed for the race course. The process by which we decided to go through with the pre-ride was democratic (by Czech standards). Andy and Jean voted “no”; I voted “yes.”

  

The course was designed for the Czech national-under-23 national championships, which were happening in tandem with the Para-cycling European Cup. It is safe to say not a lot of thought was given to the question of how the course would accommodate athletes in the T-1 class.   Traffic in Prague is horrendous. UCI requires its race courses to be completely closed to traffic. The closure of a regularly traveled thoroughfare in the city would result in civil unrest reminiscent of the days the Soviet tanks rumbled into Prague in 1968 and out of Prague in 1989. So, race organizers rammed a five kilometer course into an area of not much more than one square kilometer in and around a massive, unmaintained, graffiti covered. Soviet-era stadium.  My two personal favorite features of the course were a one kilometer free-fall down a surface that couldn’t have been worse if it was cobbles, and a double-hairpin 360 degree turn (270 degrees left, than ninety degrees right). With daylight fading, I rolled out of the start area with Jean and Andy following in a cab. I have been very impressed with the power and control provided by my new front brake.  So impressed, in fact, I essentially disconnected the rear disc brakes last week. This was an error in judgment. When I hit the descent, I realized I needed more stopping power than the front brake could provide with the limitations of my ability to pull the brake lever.  About half way down, there was a grassy area where I considered ditching the bike, but I knew that the road would merge gently into an uphill if I could maintain control though the remainder of the downhill. This, too, was an error in judgment. 

As I reached the final pitch of the descent, I could see the beginning of the uphill, and I realized the turn from the descent to the climb was more sharp than I recalled. I also neglected to take account of the fact that the road would not be closed to traffic until race day. This took on immediate importance when, as I was nearing the turn, I saw a city bus was coming through the intersection (immediately past the stop sign that I knew I could not heed). In an instant I decided I would miss the bus as long as it wasn’t one of those multi-sectioned buses. Guess what? It’s amazing how many options your brain can process in a split second. If I did nothing, I would broadside the bus. I didn’t like my chances. If I turned gently left, I could probably remain upright, but what if there was a vehicle following the bus or one coming from the other direction? My luck hadn’t been so good that afternoon, so I decided to steer hard enough to the left that the trike would flip to the right. That wasn’t very hard to do.

       

The half hour or so after my head hit the road is a bit fuzzy, but I remember several helpful Czechs stopping to give assistance, call an ambulance, and such. I also remember downplaying the impact because I hoped everyone would go their own way so I could finish the pre-ride. [Jean is typing this and confirms that he is not kidding! He completely ignored the bloody mess on the pavement -  Andy and I had to drag his sorry ass back to the ground to wait for the ambulance!] Also, based upon the reactions of several people to comments Jean made at the scene as well as at the hospital, Czechs who know some English tend to understand the word “crazy” to mean something more like “sociopathically or criminally insane.” This caused delays in calling for the ambulance, being loaded into the ambulance, and in receiving medical care at the hospital.

Following some spirited debate, it was decided that I should take Friday off.  Among other things on the list for Friday , we needed a new helmet.

 

We also spent time Friday reactivating the rear brakes. From the time of the crash I had been asked repeatedly whether I was dizzy, light-headed or experiencing blurred vision or headaches. No one asked me, and I did not volunteer, that, every now and then, everything in my field of vision would move rapidly back and forth from left to right for four or five seconds [Insert glare from secretary here – what the hell is blurred vision?] I didn’t think that disclosing this to Jean or Andy would be likely to make them more excited about me racing on Saturday. I was able to confirm this intuition late on Saturday.

Race Day! After a brief Czech of our work on the brakes, and much to my surprise, I was allowed to line up in the start area.

Andy had told me to expect to see him at the top of the descent, and I was happy to see him there because I was, for the moment, in the lead. While I was trying to get his attention to point this out, Andy was furiously waving his arms and yelling at me to “Get hard on the brakes – the hand-cyclists flew off the turn!” With one exception in our thirteen years of friendship, I have found it best to do what Andy says, so I slowed down to the point Andy was easily able to keep up with me throughout the descent. Not surprisingly, my lead had vanished by the time we got to Hell’s Corner. In fact, the vehicle that follows the last rider in a UCI race was purring quietly behind me. I didn’t panic because I had promised Jean, Andy and myself that I would take the first lap slowly since my pre-ride was interrupted and thus I hadn’t ridden the entire course before the race. Although the course was generally up or down, the second half of the circuit was more to my liking because there were no significant descents. By the end of the first lap I was back in the lead for good.  On each lap, Andy trotted beside me down the hill to Hell’s Corner, chatting about hockey and other Canadian stuff. 

On the last lap, with my finish position decided, I offered my wheel to a Czech woman who had been struggling in the second half of the previous laps. This meant I would slow down a bit to give her the benefit of a draft. This was a product of a surge of international sportsmanship that welled up inside me after I heard a woman waving a Czech flag, yelling “Go Ammaideeka!  OO-ACE-AH!” This was short lived, however, because, as soon as we hit the curvy part of the course about a half mile before the finish, the Czech czich pimped me, blowing by me as if I had tried to shove a pump into her spokes rather than towing her sorry ass up the hill.

My jaw dropped to the asphalt, which slowed me down a bit as I watched the gap between us grow. I knew that, even in the curves that remained, I was faster than her, but I also knew if I caught her it would be very close to the finish and Jean and others would probably applaud politely at the Ugly American’s ruthless blood-squirting-out-of-his-eyes sprint to beat a disabled Czech woman, while secretly thinking “What an asshole.” I couldn’t care less. I dropped the hammer and passed her in the last 3 meters, crossing the line .013 seconds ahead.

 

When in Prague…my post-race recovery meal was sausage, beer and coke.

     

 

Sunday’s time trial was a very short 2.5 miles, 1 lap around the same course. This is a good time to talk about the Czech language.  Czech is a difficult language that is essentially useless outside its borders. For some occupations, Czech is even useless within its borders. Andy and I asked Jean to look for the Start List. She reported back that “All that stuff is in Czech.” [Can you believe I keep typing this?!]

 

Because the love of my life is so generously typing this for me (on her birthday, no less) that’s all I’m going to say about that. [Now you see why I said I can’t believe I am still typing this! I just said "for a few, Haskell". See Memorial Day, 2011 …]

 I won the T-1 race, but the interesting stuff happened after the race. While we were working on another recovery meal, we were chatting with a Czech rider named Roman. As she has a tendency to do, Jean made friends with Roman quickly. When we got up to leave, Jean hugged Roman and the period around this is when we learned of a Czech tradition. Apparently, when a woman initiates a hug, the man is free to grab a handful of the woman’s butt with each hand. Quaint.

 

                                                         With the ballsy Roman.

After the racing, according to the schedule and tradition, came the "medals ceremony". Have you ever been to the state fair and won the big one -- the stuffed animal that every game has set as the ultimate recognition for a masterful display of manliness, marksmanship or cleverness? Once you shoulder the beast, you become a member of the fairgrounds elite. Every father with kids in tow hopes to discover what you already know before the ATM declines his card. Every girl looks right through her date, casting a look that communicates (to you) only longing and admiration. Until, that is, you pass out the gates of the grounds, at which point (unless you have presented the creature to a grateful child) you are instantly transformed into a dork along the lines of an adult male with an ongoing hobby of collecting Star Wars dolls.

This transformation occurs in a nearly identical fashion for adults who win medals competing in any endeavor other than the actual Olympic Games.

At a road biking event, the experienced racers who have stood on a podium (or who have won the fuzzy stuffed mastadon) previously, will casually tuck the medals under their shirts, though using care to ensure that the ribbon remains visible. This moderately dorky roadie maneuver is scoffed at by mountain bikers, who almost urgently whip the prizes from their necks, deftly roll the ribbons around the medals, and slip them into pockets. Even the consummately cool dirties, though, don't make this move until they are standing in a group of others of similar status, regaling the others with a tale of that time on Kilamanjaro when they broke a chain and something "gnarly" happened. That or a story about beer.

Remember, these observations apply only to adults who are not Olympians. Kids and Olympians can and should wear their medals until at least the end of the day or the end of the press conferences, whichever comes last. The rest of us should definitely not wear them on the plane ride home. Even if it was a marathon. If someone at the airport has to know, then you should forget to remove it from your pocket when you pass through the medal detection thing, feign bewilderment as you pat yourself down with the buzzer going off and a curious crowd gathering on the other side of the machine. Then give an audible sigh of recognition as you discover the culprit in your pocket and pull it out (by the top of the ribbon so it unfurls dramatically). Either do that or wear the event t-shirt (untucked).

All the foregoing explains why (with two exceptions for events that dispensed medals that are true works of art) the booty from a lifetime of running and riding is in boxes, our garage or gone. It's also fair warning not to stand behind me at airport security.

Europeans (even former Soviet bloc folks) are sophisticated in these matters. To save us from ourselves, the organizers of the Para-Cycling European Cup did not present medals at the medals ceremony, delivering instead flower bouquets. Now the Czechs are renowned for their art and architecture (see Figures 1 and 2), so why didn't they create a unique and beautiful design for their prizes? I'm convinced this was a stroke of genius for at least two reasons.

Figure 1.                                                              Figure 2.

  

First, flowers have a half life that renders moot the complex web of decision-making presented by the receipt of a medal (see discussion above). Second -- and this is so awesome -- the Prague organizers delivered a hearty "bite me" to UCI over an unpopular rule that will be repealed in three months’ time. The rule is UCI's so-called "minus one" rule, which provides that the maximum number of medals that can be awarded at an event "where medals are awarded" is equal to the number of competitors minus one. Thus, where there are three competing, only gold and silver may be awarded, and where only one competes, no medals are awarded. The rule applies no matter how mind boggling the performance may have been.

Because medals generally wind up in boxes in garages, this is arguably a big "so what?", but the ceremony is really a very nice part of the whole deal and it can make people sad when they are excluded only because no one else showed up. The Czechs flipped a classy middle finger at the minus one rule by exempting the event from the rule by simply not awarding medals.

So the ceremony was the "medals ceremony" and everyone recognized was introduced by the color of the medals they earned ("your Gold Medalist is... ). This improved the photo-ops considerably and bouyed beer sales as more people stuck around for the flowers. A win-win.

With Silver Medalist Pavel Opl (CZE).

In the five days after the races we laughed with our friend Andy, celebrated Jean's birthday and learned many things about Prague, including why it ranks second on Condé Nast's list of the world's least wheelchair-friendly cities behind only post-Desert Storm Baghdad.

Oh, Prague! ...

      

    

   

Oh, Prague??!...

 

 

Days 801-802, September 23-24, 2012. Race day! I have lived in New Mexico for almost 27 years, and I still haven't gotten my arms around the Father Sky/Mother Earth concept that declares Indian Pueblo lands sacred... Except for the casino. On the other hand, there are probably gazillions of catholics who are only nice on Sundays. And remember that scene from The Godfather where Michael Corleone is participating in a Mass for the baptism of his godson, and the camera keeps cutting back and forth between the baptism and several brutal murders Michael has ordered to be carried out concurrently? Same thing.

This brings us -- obviously -- to the start of the Tour de Acoma at the Sky City Casino. Team Oso High for the day was Jean, piloting the recumbent tandem, me, stoking, John Blueher and Paul Mohr. We were a wee bit tight on time, which why Jean and I never stopped rolling when we rolled up to the start line, and why Paul and John couldn't find us when they got there (the race had already started).

   

At 20 miles, Jean and I stopped to refuel and defuel,and that was all John and Paul needed to catch up. On the topic of defueling, I have discovered a second thing that is easier than it was before I got ALS. I wrote about Thing 1 last Fall (click here). I don't want to go into a lot of detail about Thing 2, but here are some hints: (1) it helps with an activity that rhymes with "hissing" or "missing"; (2) when I use one I can sit in the recumbent for a nearly unlimited amount of time and we can explain any fluid pooling under the tandem by saying we have a radiator leak; and (3) if you have ALS or know someone who does, or if you are just pathologically lazy, you should totally Google "external catheter".

The ride was great, the scenery was breathtaking and sacred, we saw a good (i. e. dead) rattlesnake, and we weren't even the last tandem to finish. Also sporting Oso High colors, Tim Holm and Mike Carrico both knocked off the 100 miler in under 5 hours (Tim was 10th overall in 4:33).

Just a comment about friends. Unless something effed up like ALS happens to you, you'll probably never know who they would be, but some of your friends (especially some you wouldn't predict) will just show up in your life bearing the gift of time -- time to help you with the things your hands won't do anymore, time to recreate your bike into a machine you can ride, and time to just hang out or go out for a ride they don't actually have time for. Just in the last 10 days, for me, these people have been John Blueher, Paul Mohr, Dan Porto, Andy Schultz, Jim Chynoweth, Bill Keleher, Mike Hart, Michael Donovan and Damian Calvert. There will also be friends who will do stuff that will make you think that they must think you hold a trove of pictures of them with gender-negotiable hookers. Mark Carver (who flew over from Nashville for a couple of days for no particular reason), or Andy Kain (who lives in Canada but will meet us in Prague on Thursday, and Prague is still not in Canada).

Thank you all!

Days 799-800, September 21-22, 2012.  The trike has three – count ‘em – three brakes and I can't make it stop. For a bike racer, this probably doesn't sound like much of a problem. I mean, after all, the only time you have to stop is after the race is over, right? That is true, however, I am not actually very good at it even slowing the trike in the unlikely event I encounter an unusual road hazard such as a turn. The issue is arm and hand strength.

The traditional set up for brakes on a flat (mountain bike-style) handlebar is like so: a brake lever is mounted forward of each hand grip, and they are activated by extending the fingers forward, grabbing the lever and squeezing or pulling the lever toward the grip. The lever on the left side controls the front brake, while the lever on the right side controls the rear brake (in the case of a trike, this one controls the two rear brakes).

When I got the trike in April, I found the strength required to operate the rear brakes just wasn't there. However, I could get pretty good speed control out of my front brake. Until, that is, I went down a hill. Then, I found that the most efficient way to stop was to slam into a curb. I quickly discovered that this technique was expensive. The cost of replacing torn racing apparel and smashed helmets can add up. The "fix" for this problem was to flip the right (rear) brake lever around so it was facing me. Then I could lift my hand off the bar and press down on the lever with the weight of my upper body providing the force necessary to operate the brakes. Aside from when I converted my bicycle into a tricycle, this was the least safe equipment modification I have ever conceived. Less than 200 m after I implemented this idea, I found that when I pushed on the lever, the bike slowed down, which caused my body weight to shift forward, which put more pressure on the lever, which caused the trike to slow even more, which caused my body weight to shift forward, which put more pressure on the lever… This happened over the course of about 1 second, after which my body was launched over the handlebars. Over time we developed a method to reduce the effectiveness of the brakes so that using them was not so dangerous.

Recently, however, I have had more difficulty lifting my hand high enough off the bar to get it on top of the lever. I needed a new solution. Wouldn't it be great if I could replace my mechanical rear brakes with easy-to-operate hydraulic brakes that require less pulling power to engage the brakes? The practical problem, I knew, would be finding a way to split the hydraulic fluid line so that one lever could operate both rear disc brakes. No luck. The front brake is a normal sort of brake like you probably have on every bike in your garage except your expensive mountain bike. The rational part of my brain told me no one has ever had a use for a hydraulic rim brake, but I did a web search anyway. About three weeks ago, the first-ever road bike hydraulic brake system was released by a small company I have never heard of.

My left hand is too weak to squeeze the toothpaste, but, with the help of my new Magura RT8TT, I can control the suicycle with precision. Naturally, we leave Tuesday for Prague. For some reason (and I love her deeply for it), Jean can't seem to be able to tell me "no". The race course looks like this:

A working brake will come in handy.

Days 796-798, September 18-20, 2012. Unlike most of the bad ideas I have written about, the next bad idea on our agenda isn't really that bad of an idea. Next up: The Tour de Acoma. For several years, including 2011, we have done the 100 mile version of this event. Sunday we will do the 50 mile route. Please don't mention this to Jean just yet. Quite sensible under the circumstances, don't you think? The only bad idea part is the fact that Acoma will be our first significant ride on the new recumbent tandem.

I received a fair amount of feedback on my chick magnet blog from last week. This gem came from one of my [former] law partners. I could give him a well-deserved shout-out by name, but if his wife also reads this, he would awaken one night soon to find filtered city light dimly illuminating her standing over him holding his Johnson in one hand and a bloody knife in the other, with a bright point of light reflecting off a pearly white tooth revealed by her slightly parted lips. I can't allow that to happen to my friend. By not naming him, however, am I not throwing the rest of my married male partners under the bus? What is one to do?           [Paste]

As I recall, Hannah Storm did the weekend NBA games for NBC with Ahmad Rashad in the early 90s. She was probably 30 years old. And she was most definitely NOT hot. Nor was she particularly good at her job. Really - I couldn't stand her. A poor man's Leslie Visser on her best day.

Then something miraculous happened. Hannah Storm disappeared for over decade and then reappeared on Sportscenter as a smoking hot 50 year-old. How does this happen? Only in Obama's America - that's how. U S A !!! U S A !!!

Days 793-795, September 15-17, 2012. New wheels. This is a recurring theme of this blog, isn't it? In the year and a half I have been writing, we have purchased a high-performance racing bike (the one that became my para cycling trike), a racing recumbent trike and a tandem recumbent trike. The ALS Association gave me a walker, and Medicare let me borrow a luxury wheelchair/chick magnet. This week’s new wheels are a VPG MV-1, the first passenger vehicle built expressly for wheelchair access. It is part Ford Crown Victoria, part Hummer and part of American engineering genius.

It is not fancy. While the dealer described it as "loaded", that is really only in comparison to the base model, which does not have a radio. I drive up the ramp, hang a right and park my wheelchair where the front passenger seat would be. The area behind me is cavernous, including the gigantic park bench in the back that provides enough room for Kareem Abdul-Jabbar, Ralph Sampson and Shawn Bradley to sit comfortably and circumcise a baby.

Ours is the most red thing ever created. It is so red that the reflection of the sun off the side of the vehicle gives our living room a brothel-like pink glow. The MV-1 also gives everyone who comes into contact with it a big brothel-like grin.

 

Days 791-792, September 13-14, 2012. Today's topic is for men only. Well, men and any women who think Hannah Storm (ESPN) is totally hot. All other women and gay men, please stop reading now. This will not be interesting to you and you may find it offensive.

Okay, so we are down to men and women of the Hannah groups, right? Robert Griffin, III, the Redskins, new QB, is the real deal, am I right? I mean the dude can run like Barry Sanders, throw like Brett Favre and his mind is sharp enough to figure out an NFL offense and to read the Saints defense before the first game of his rookie season.

Alright, that should have about taken care of the non-target audience. Just in case, let me ask one more time for the straight women to put down your pink laptops and go back to your kitchens. I'm not really a pig, but I'm really trying to limit the damage this entry will do to some important relationships.

So, last shot – if you are still reading, please stop and go back to work... for 75 % of what your male counterparts make for the same job done with lower quality.

Now if that didn't do it and you are still reading, you just can't get mad about what follows.

The topic: The ultimate Chick Magnet. Better than a puppy. Better, even, than an infant. The most potent swoon-inducing chick magnet of all time is a powered wheelchair.

I don't make this claim lightly, so I have three stories to back me up. A few days ago I went to the park across the street to see how the chair performs off-road. If you are a middle-aged man, and you have been to a park by yourself, you will know what I'm talking about when I say that women are not very friendly in this environment. They usually look immediately for an ankle perp bracelet, and then for the can of mace, an emergency air horn, or, in New Mexico, their legally-concealed handgun. Not so with a wheelchair. Lots of cheerful greetings, smiles and even offers to help with whatever. God only knows how this could go if you add a little lab or a baby to the mix.

Yesterday was Abby's 16th birthday. I hadn't done squat to help prepare for the celebration and I wanted to do something special for Abby's birthday, so I drove the wheelchair to Smith's to get some flowers. There were a couple of men milling around looking for something that didn't look like it came from the grocery store when I arrived. Within moments, Cindy swooped in with a sunny "m'alpyou? " That's New Mexican for "may I help you? " I told her I was hoping for sunflowers but that roses would do.

Cindy vanished and returned from the back of the store with a grocery cart full of sunflowers and roses, all of which looked better than anything in the display.

She carried the bouquets to the register for me, got my wallet out of my jacket, my credit card out of my wallet and even signed for me. She helped me out of and back into my wheelchair and loaded the flowers in my backpack before she walked me to the door. Through the whole process, she never appeared to notice the men who had been in the floral department since sometime before I got there.

The third story took place less than five minutes later. I was buzzing toward home when I saw a shadow of the flowers tilted parallel to the ground. Everything I know about physics told me instantly that this meant the flowers were tilted parallel to the ground.

I stopped just in time to watch them fall to the pavement. I got out of the chair and began to survey the options. Each plan carried a distinct possibility that I would wind up face down in the street with the flowers. I hadn't chosen an approach when a young woman riding her bike stopped to help.

This is beginning to sound too good to be true and you are probably already wondering whether you can just buy a wheelchair and how much they cost, but there is at least one caveat. If you dress down or don't shave, many people will conclude you are a homeless person with a wiley understanding of Medicaid, and they will stare right through you so you don't ask them for money. This will happen with people you have known for decades. It happened to me twice at Smith's.

If you still think I am a genius of love, one minor hitch may have crossed your mind. You may be thinking "fabulous ice-breaker, Douglas, but of what happens if it goes farther? " Good question, to which I would respond "just go with it." If you play your cards right, you will never have to do domestic chores of any sort.

The world is your oyster and it is filled with pearls, gentlemen, and all that awaits can be yours with an investment of only about $30,000. Less if you find one on eBay. Godspeed.

Days 789-790, September 11-12, 2012. "God is good, all the time. All the time, God is good." Father Jimmy continued: "But He is not accountable for the good or the bad that comes our way." Then he talked about miracles and how Jesus made a blind man see, and gave the Redskins their first real quarterback in two decades. The gospel goes on to recount how Jesus spent a whole evening curing this and that, only to wake up the next morning to find a line of people outside his door looking for a miracle. Somewhat dismayed, Jesus said something like "no-you missed the point. The miracles were intended to show you God's power. I'm busy – I have to move on to the next town to tell people of the Kingdom of God" (from the context, I gather this is supposed to have happened before He or Al Gore created the Internet). Malcolm: 3: 16.

Finished with storytelling, father Jimmy moved into the teaching part of his sermon. "So if God is good all the time, does that mean we do not have people suffering from terrible diseases? Of course we do [the double and triple-negatives here are dizzying, but please forgive me because this is a direct quotation], but if we become obsessed with the cure, we miss the healing power of God." By way of illustration, Father Jimmy recalled anointing his mother before her breast cancer surgery. "Wait a minute", she said, "what, exactly, are we praying for?" Father Jimmy told his mother they were praying that they would all be able to handle whatever news came from the surgery. If we become obsessed with the cure, we miss the healing power of God.

I wrote about a closely related issue, sometimes called the Paradox of Evil earlier this summer (click here). There is an old engineering joke: "cheap, fast, good – pick two." Engineers don't have much to work with when it comes to humor. Similarly, many philosophers argue that no more than two of the following propositions can be true: God is good. God is all-powerful. Evil exists. That is the Paradox of Evil.

Father Jimmy would argue that there is no paradox – that all three are true. Even though God is good and has the power to eliminate evil, He allows evil to exist and gives us, instead, the ability to feel better when we are faced with evil. To me, this all seems rather unsatisfying. God wouldn't have to deal with nearly as much whining if He just went ahead and eradicated disease. Also, there wouldn't be any question about people believing in His Kingdom.

Another thought. In Carmen: 12:22, a woman scorned by her husband came to Jesus, knelt at his feet and told of the man's misconduct. Jesus waved his hand over the woman's head. "Poof", said Jesus, "he is a toad with impacted anal glands." And the woman kissed Jesus’feet and told the good news of his coming throughout Jerusalem. It doesn't take much before this type of story begins to sound silly. I mean, even the Southern Baptists are open to the idea that biblical miracles are metaphors. Father Jimmy is a priest in a Catholic campus parish. When he speaks, he smiles and nods his head frequently, but, it seems to me, when you slow it all down and think about what he has said, you have to come to the conclusion that God is good, all-powerful, but way too busy to waste His time on inconsequential stuff like genocide.

I continue to be drawn to the Buddhist notion that "suffering comes from resisting what is." So, when we pray, we pray for peace of mind and strength of body and spirit because we refuse to believe in Father Jimmy's version of God as Santa Claus with a very bad attitude.

Days 787-788, September 9-10, 2012. I met Charles N. "Shatterproof" Glass when I was in my third year of practice in 1987. His reputation, captured by his nickname, preceded him. He had the rare ability to convey, in moments of high importance, that he either did not know or did not care when he had been beaten. If I made an objection which the judge sustained, he might very likely respond by asking the exact same question again, this time with even more bluster. If he lost a trial on Friday, he might call on Monday offering to settle. He was a real life version of Monty Python's Black Knight. Click here.

This trait of character would be handy for an ALS patient. A hand stops working? So what -- I've got another. One leg atrophies and betrays you? Take 'em both -- I'll gnaw yours off at the knees and bludgeon you with my forehead. I do my best to be shatterproof, and I feel like I'm pretty good at it most days, but when I feel like this -- click here -- and I can't get my pants open in a timely fashion, I can become pretty grumpy about my situation.

Days 784-786, September 7-8, 2012. Sports Update.

Abby's first soccer game was sweet. Our little Bulldog scored one goal and provided the assist for Albuquerque's other goal. Gotta love the spirit. She could pretty clearly be starting at keeper for the varsity team (which is, um, giving up lots of points this season). Her choice, however, has been to stay on the field even if that means playing JV. So she's a sophomore midfielder and co-captain of the team.

On the boy's side, Jimmy's team finished the Metro Tournament 3-2, with the two losses coming on a penalty kick shootout after two overtime periods (with the team that ultimately won the tournament), and an overtime loss in a driving thunderstorm. Which is to say they have not had their butts kicked by anyone, including the best in the area.

And how about London? Our friends did themselves and the new UU proud. Steve Peace finished his first Games with a comeback 5th place result in the trike road race, and Dave Swanson and Clark Rachafal took a hard-fought 10th in the tandem (visually-impaired) competition. The team as a whole hauled home 12 medals. Not bad for a gang of only 17.

Days 782-783, September 5-6, 2012. Trike racing got underway yesterday at the Paralympic Games in London. At the international level, there are fewer than 50 trike racers, men and women combined, worldwide. As a result, the International Paralympic Committee decided to combine the T-1 and T-2 men and women into one competition at the Paralympic Games. Recognizing that there are significant statistical differences in the performance of the various classes, the IPC took a crack at leveling the playing field for the time trial. The handicap (bad word, I know) system works like so: everyone races the same course and records a time. The T2 men are the statistically fastest group, so they keep their actual times. The athletes in the other three categories receive a time discount based upon historical differences between medal-winning performances of the various classes. In the road race, however, there is no effort made to make the competition fair. Here, the T-1 men and women, statistically 20% and 30% slower this the T2 men, compete straight up with the T2 men and women for one set of medals. Because of this system, only four nations sent a T-1 man and two nations sent a T-1 woman to London. This may sound like a not-very-subtle way of explaining why my passport is sitting in our file cabinet this week. Not so – under the US selection system, if I had ridden fast enough at the Olympic trials, I would have gone to London.

Our friend, Steve Peace (who did ride fast enough in Georgia), raced the time trial as a T-2 yesterday. Steve’s official place was ninth, however, that's not the whole story (see above). A woman Steve beat got the gold medal, and so on. Steve has his road race on Saturday. Go Steve!!

Days 780-781, September 3-4, 2012. Race day! The Paula Higgins Memorial Record Challenge Time Trial. 20 flat-as-a--pancake kilometers. As long as the wind doesn't blow, it's an ideal place to set a record. As long as the wind doesn't blow.

The event runs for two days, and you can pretty much pick your day or days. I picked the wrong day.

Saturday was reportedly perfect - sunny and calm, much like the day 20 years ago when local legend and shoulda-been-an-Olympian John Frey scorched the 40 kilometer course in a few ticks over 47 minutes. That's 24.8 miles at an average speed of over 30 mph. The record still stands, and many badasses (including Lance) have taken shots at it.

Sunday was not like Saturday or like Frey's Day. The wind was nuking -- about 25 mph from the north. The course runs south, then turns back north at 10K. Tailwind south, then a make-you-call-for-your-mama headwind back home.

Did I mention that bitch Mariah got even more frisky during my ride? Well, she did. By the time my "ghost rider", Paul Mohr, and I spun around for the second 10K (at which time we were averaging over 25 mph), billows of dust were rising from the alfalfa fields. American flags were making the cracking sounds they make when the wind is blowing so hard that the ropes can't even slap against the flag pole.

16 minutes outbound, and 36 minutes inbound. That's really slow -- indeed shocking given my slick wind tunnel - tested aerodynamic profile...

I only missed the national record for T-1 by a little over 10 minutes.

 

If I hadn't worn the sperm hat, I might still be out there. See Nancy Fortin's hood ornament-like hairstyle?

You can't tell it here because of the wind, but she actually has shoulder-length dreadlocks.

We get to try again in two weeks on the same course.

Days 766-769, August 30-September 2, 2012. The Zombie Dance. That's how my friend John Dunbar described the two of us wriggling out of our powered wheelchairs to deliver the bro hug. We were diagnosed only months apart and our paths have been very similar.

So we did the thing that two mountain bikers-turned into "wheelies" (wheelchair-users) would be expected to do. We drove the chairs to the tennis courts and set up a figure-8 race course around the nets of adjacent courts. During our practice laps it became clear that the winning move could likely be who got the hole shot off the start because the narrow gap between the nets (at the "x" of the 8) would slow us significantly, leaving few passing opportunities.

"Go! " I got off smartly, possibly because I was the one who said "go". I didn't really have enough room to safely cut in front of Dunbar to snatch the hole shot at turn 1, but I figured I'd win this little game of chicken because John knew my chair is a rental. I took the inside line at turn 1 focused on the bottleneck between the nets. I slipped cleanly through the the gap and figured I had the race in the bag.

I had miscalculated the advantage John's midwheel drive would give him in the turns. John took an aggressive inside line on the second lap and had the lead. I discovered I had a speed advantage going straight, and decided to exit my turns more quickly to get the speed up for as much of the course as I could. This plan worked and the gap between us evaporated. I was on John's wheel when he entered the narrow passage on the fourth lap. That is when he went from full gas to zero in less than a quarter of an inch.

The impact knocked off one of John's shoes and sent his iPad skidding across the tennis court . He was blocking the path through the "x", so I couldn't slip by him and cruise to victory. I stopped and the race fell under the pall of a red flag.

A healthy ALS laugh sounds quite normal during the exhaling part ("ha ha ha"). The inhaling part, however, sounds like the “hee" part of a donkey's "Hee Haw". Once this died down, we had to deal with the mess.

Getting John's shoe under control was not difficult. I hooked the shoe with a finger and moved it close enough for John to get his foot back in. The iPad was a different story. Neither of us could pick it up. Both of couldn't pick it up. We tried a number of options, including one that could have turned out badly. The winner: I squeezed the iPad between my feet until it stood up vertically. Then I rocked back on my heels to get the iPad off the ground. At that point, John was able to grab it and lift it to his lap.

As I drove a big loop around the net, I heard a repetitive clanking sound like a hammer hitting a pipe. It was the right foot rest of John's machine slamming sideways into one of the posts. This looked like a very expensive problem until I realized John was realigning the foot rest which had been badly bent by the impact. John's technique did the trick.

The last piece that had to be put back in place was the pad that provides support for the calf. It was also no longer in the right place. I pulled up beside John, extended my left leg so it was pushing on the pad, and then I hit the accelerator.

I learned a big lesson today. Never leave the house with Dunbar without a camera.

Days 763-765, August 27-29, 2012. When I do stuff I consider somewhat exciting, I usually have to go through a process of explaining why the thing is arguably cool. This often requires some combination of physics, mechanical engineering and philosophy. Then you read it, stare at the ceiling for a moment while thinking about it, and if I've done a good job and accurately assessed how interesting the thing was, you might say "hmm.. Cool."

This one requires no explanation, just the facts.

Jimmy is a senior at Albuquerque High.

He is on the soccer team.

Tonight was the first game of the season. Jimmy scored a goal.

It was the first goal of his high school career.

Jimmy plays GOAL KEEPER.

The ball left his foot at the south end of the field, blazed low across the players, bounced once over the outstretched hand of Manzano's keeper and into the goal at the north end of the field. I don't know that much about soccer, but I think this is roughly equivalent to a quarterback throwing a 65 yard touchdown pass. To himself.

Day 762, August 26, 2012. Race day! John picked me up at the butt crack of dawn and we drove to Belen New Mexico. In my haste, I forgot to print the directions to the race course. I had my iPad with me, so I figured I could look it up while we drove. My fingers are not particularly useful for things such as poking at an iPad. At home, I set my iPad on a table and peck at it with my nose. So, I propped my iPad on my knees to begin pecking. The problem I discovered is that my pecker (I apologize for the use of this word – really I do – but it makes this sentence linguistically parallel to the previous two sentences, so I really have no choice) is not long enough (again, my apologies) to reach the screen in this position. I struggled with this problem until we were southbound on Interstate 25. About then a truck carrying a time trial bike passed us. While possible, I determined there was a low probability that the frame of the bike was filled with meth for a smuggling run into Mexico, and we followed that vehicle. This was a gamble that paid off, as we arrived at the staging area about 30 min. before my 8:03 AM start time.

I had time for a bit of a warm-up before I was due at the starting line. The course was a 20 km out-and-back on sweet, smooth new blacktop. I relished a steady tailwind for the first half of the course, and 10 km was done in only a bit over 17 min. Even if you did poorly in high school physics, you will probably not be surprised to learn I had a steady headwind for the second half of the race. On a bike, a headwind always feels like it interferes more than the corresponding tailwind helps. The technical explanation for this requires an understanding of the cohesive properties of water.

Because my time trial position looks a lot like this... ... I felt like I was taking body blows for the entire 25 min. return journey. My overall time, however, was a fist-pumper – 42:29, which was 5 min. and 15 seconds faster than I did a slightly shorter course with a similar profile at the Olympic trials. If I had ridden this fast in Augusta, I might very well be picking fish and chips out of my teeth right now.

Days 759-761, August 23-25, 2012. The recumbent tandem trike has arrived. I have to confess I thought this gift might have been premature. Until I got on it...

Now I'm thinking how sweet this will be descending the Col de Somezing Romantique Zounding in France. We may need to charter an Air Force C-130 to get it there, but that wouldn't be even close to the silliest bike-related expense we've incurred this year. Umm -- check that.. This quarter.

Tomorrow is race day. The New Mexico State Time Trial Championship. 20 km of gently rolling brand-new asphalt.

Days 757-758, August 21-22, 2012. Back in the day, I would have been more likely to shave with broken glass than to ride home on a flat. This is not The Day. Nine miles from home, my left front went pffftht... This happened at a time when my judgment, honed over 22 years of marriage, told me this was information that should not be shared with Jean. Ffff-thop... Ffff-thop... All the way home. As would be expected, this slowed me a tad, but even though my pace caused Jean to toss several exasperated you -must-be-kidding-me-why-did-I-ride-with-this-lame-o looks over her shoulder, I stand by my decision to keep this little secret. Ffff-thop... Ffff-thop... Ffff-thop... Each ride is a gift, but every gift is not necessarily perfect.

Days 754-756, August 18-20, 2012. What, exactly, is an itch? It's one thing if a bug lands on you and irritates you, but let's say you're just lying in bed with an arm hanging out from under the sheets. Up there near your shoulder, where there used to be a deltoid, in a hairless spot that's, roughly speaking, clean, a tiny patch of skin spontaneously ignites. This probably happens to you several times a day, and you deal with it by absent-mindedly scratching it into submission. My scratchers are not working so well, and when they can't reach or effectively scratch the spot, I have to devise a substitute attack plan. Typically this means taking the itch to an alternate scratcher such as furniture, a wall or a dog.

There are times, however, when even the backup methods fail to produce an adequate scratcher. It was such a moment -- the spot was at the base of my neck a little higher than the collarbone -- that caused me to ponder what, exactly, is the nature of an itch. I have pretty good intuition about matters of physiology, but I was completely stumped. So I moved on to a related and secondary question -- will an itch go away by itself? Early in my study of this point, I have to say the answer appears to be "no". This makes me fear for the future.

As long as the topic is sensory function, I have a complaint. This ALS thing is supposed to be a disease of the voluntary muscles. Why, then, am I finding that I am losing my taste for some things I have enjoyed for many years? It started a little more than a year ago when we discovered I couldn't get down wine that cost less than 20 Euros a bottle. While expensive and inconvenient, this problem could be managed. As it turned out, however, this was a progressive problem. 30, then 40 Euros... It didn't take long before I reached my squeal point and gave up.

May 2011, Geneva, Switzerland.

The next kick in the ding-ding? Beer. First darks, then pale ales and ambers. I've worked my way into the slums of tasteless brews, stooping to Miller lite on ice. Orino de los caballos Mexicanos couldn't taste much worse. This week Diet Coke has begun emitting a faint battery acid bouquet.

The theme here is clear enough even I can read it -- the target is vice. Fine, but REALLY?! Chain-smokers with throat cancer can burn one and suck it in through tracheotomy hole and I can't even sip on a Fat Tire without being it tasting like it was bottled at a rendering plant? For those who have not spent time in the beautiful and historic rolling hills of the Shenandoah Valley of western Virginia, a rendering plant is where they take everything left over after they have made the McNuggets, hot dogs, scrapple and tofu (which, nature people, is not pretty), and they boil it in a gigantic cauldron to produce what we Virginians call "Virginia Tech".

What sort of disease could be more filthy than one that robs a mountain biker of his beer? Well, other than cirrhosis of the liver, of course. Speaking of mountain biking and fine wine, click here.

I thought the cleansing was supposed to happen in Purgatory, not here on Earth. Diet Coke?! Seriously? I think we need an old priest and a young priest. Where do I file a complaint?


Days 752-753, August 16-17, 2012. Well, check this out. UCI's latest paracycling rankings came out today. Click here or I'll just tell you-- #1 Ranked in the World? Yeah baby! So, going into the Paralympic Games I'm riding World Number 1. World No.1 gets to go last in the time trial and gets introduced and starts at the front in the road race . Here's the only pisser -- I'm not going. Imagine the Olympics if Usain Bolt hadn't been invited! The uproar! The furor! The media firestorm! Without me in London it ... well, it won't be like that at all, but it's a fun analogy.

Days 750-751, August 14-15, 2012.

Rosemary Anton Bannon

September 23, 1923 -August 15, 2012


Day 749, August 13,2012.  The Olympics have closed and, as the ad campaign goes, "now it's our turn". The opening ceremonies for the Paralympic Games are two weeks away. Here's the United States Paralympic National Cycling Team. The names in bold are Team USA for London! Good luck to everyone and a special booya to Steven Peace,who is carrying the torch for the trikes!

 

Days 747-748, August 11-12, 2012. Race day! The final installment of the Volcano Time Trial Series. Paul Mohr and I headed out early and found a frisky cross wind had gotten an even earlier start than we had. Not a big blow by any measure, but enough to keep me fighting the bike like a heavy dresser that needed to be shoved across the carpet. This is not part of my current core competencies.

Very slow outbound, but faster inbound for an overall time 8 seconds faster than the National Team standard -- a 99. 9% score. Good thing I wore my sperm hat!

Next up: The New Mexico State TT Championships on August 26.

Jean went to Illinois for a surprise party for her younger sister (not one of the Marys), and found her Mom is fading fast. Please send a prayer.

With the Olympics wrapped and with me having caught up on "Breaking Bad", it's time for some culture. Click here.


 

Days 744 - 746, August 8-10, 2012. The Crest climb. It's at least an annual ride. The road never gets longer or steeper. It seems like it, but it doesn't. That makes it a great place to yourself against the yourself of a year or two or ten ago. Fourteen miles with an elevation gain of over 3000 feet, topping out at 10500 feet.

Measuring myself against my old self is something I do more often than that I care to admit, and in the context of the Crest climb, it's an exercise that is unlikely to be particularly uplifting. But here's the thing - my 350 pound wheelchair is due to be delivered any day, and will have to start using it so people (including me) don't have to hold their breath when I walk. In paracycling there is a whole class reserved for people like me, so that means I feel the need to compare my effort to other riders or to a standard time. Not the Crest climb. Just to be able to do it seems like plenty.

It took two hours and ten minutes to reach the summit. That's 54 minutes slower than my personal best, set in 2009. Didn't matter. I couldn't have felt more jacked at the Crest if I had flapped my arms and flown there.

Now, I don't just hop on my killa trike and ride to the Crest. Gotta have friends, and we had a great crew. Abby and her friend Carson drove the sag Ford, leapfrogging over us and entertaining with dance and song. John Blueher and Paul Mohr rode with me (on bikes ten pounds lighter, I might point out), and kept me fed, hydrated and motivated. Paul was the giddy cheerleader - type that lesser men might have elbowed over a guardrail well shy of the 10000 foot mark. John and I were more focused on the feedback the road provides with cruel persistence to every pedal stroke. Well, that and the views.

  

   

If you know much about my psychotic trike, it may have occurred to you that, after cresting out, we would have to go back down in order to make it home in time for dinner (this will get funny here in a few minutes... Unless you happen to be Jean, in which case this will be funny in a couple of weeks max. Trust me.) And if you did think about the descending thing, you might have assumed I would jump in the sag Ford and ride down with the girls. That would be a reasonable and prudent option, but that's just not the way it works. See, when you ride the crest climb, you own the right to descend. Indeed, if I were a gambling man, I'd put the 401(k) on no one having accepted a ride down in the last five years for any reason other than weather or a mechanical failure. We were prepared like good boy scouts (heterosexual ones, of course )-- we brought the recumbent Vortex. And that led to a 30 minute, 30-35 mph grin.

Great afternoons like this need occasional buzzkills or no one would go to work, and that would be as bad for the economy as putting George Bush (The Recent) at the helm of the Federal Reserve. Ours was my fault. I did the math repeatedly, I built in time for the unexpected, and then I added another half hour. It wasn't enough. We were late for dinner. Not just late -- we were an hour late. And not just late for dinner -- we were late for the pre-first day of school family meeting dinner.

Jean hasn't been talk -to-the-hand mad at me since some time in 2009. In addition to reminding me of the importance of timeliness even in retirement, this evening illustrated a true caregiver's curse. Imagine you are the primary caregiver for your ALS-racked husband, and the son of a motherless goat does something that leaves you justifiably and righteously sleep-facing-the-wall pissed off at the rat bastard. At the end of the day, you still have to brush his teeth and get the wax out of his ears. And you can't use a screwdriver. It's just not fair.


Day 743, August 7, 2012.  See photo to the right. Here we go.


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