Oso High Endurance Sports -- Biting Back at ALS


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54 Days to Tucson: Outriding ALS!

  For the current blog, "1 Day to Tomorrow”, click here.

To support Another Ride to Defeat ALS, click the ALSA link to make a tax-deductible contribution to The ALS Association.  Thank you!!


Day minus 9, November 29, 2011. Happy Thanksgiving! Time for a confession. At Tucson, I used a performance enhancing device that should have disqualified us. I am ashamed to admit I invented the device, and Jean manufactured and installed it. This device allows me to compete at a level I could not approach au naturale. Indeed, I could not even become au naturale without the device. Nor could I operate a porta potty unassisted without the device, excepting to the extent I was happy taking a leak right there inside my stretchy pants. At risk of exposing myself to scorn and public humiliation, and probably waiving any patent rights I might have, with a contrite heart, I unveil this secret. Click here. Let he without sin cast the first stone.

If you read my tale of trailside woe from Leadville, you understand the problem. My thumbs do not extend effectively, making it difficult to dig under the waistband of cycling shorts. Problem solved. This is why America is great.

So, we nailed Tucson (albeit only by resorting to cheating as described above). What's next? Brent Gillespie is the president of the University of New Mexico Lobo Cycling Club. The Lobos are putting on a road race in March and they want it to focus on the Oso High mission. For now we will call it the “Oso High Road Race”. It will be a standard USA Cycling event, except it will include "citizens" categories, which means anyone can participate. You can ride in this event even if:

  • you weigh more than your bike
  • your water bottle cage holds a Coca-Cola
  • you do not own a pump
  • you use the same gloves for biking as you do for gardening
  • the only jersey you own is licensed by the NFL
  • you don't own a "road bike", a "mountain bike", a "hybrid", a "cargo bike", or a "commuter"; you own a "bike".

Here we go –107 days to Oso High!!

Day zero (part trois), November 19, 2011.  The Tucson race began for us on Thursday.  I made the tactical error of deciding to lift weights.  On Friday, as we made the seven hour drive from Albuquerque to Tucson, my arms were weak and nearly useless.  When we stopped for lunch, Jean had to feed me my green chili cheeseburger.  I couldn't operate my seat belt.  I used my nose to type on my iPad.  Thinking forward to what we had in front of us in the next day, I was a bit more than slightly concerned.

If we had brought Jean’s bike and my trike with us, I may have raised the white flag.  As it was, while Jean snoozed, I pondered the possibility of opting to switch to one of the shorter events (66 or 85 and miles).  With my hands perched on the wheel as a matter of good form (with most of the steering stability coming from my knees), it occurred to me that, as the likelihood of failure increases, so does the degree to which any undertaking qualifies as an adventure.  We signed up for an adventure, dammit, so, when Jean woke up, I kept my negativity to myself and kept my trap shut.

We have learned that, with ALS, you never know when a silver lining will appear.  The Fortin family is a wonderful example.  The Fortins are athletes .  I met Hailey, 13, at the start line of a mountain bike race in September.  She told me she had been reading this blog.  The next time I saw her was about 15 minutes later.  I was in a tree, and she stopped to help pull me out.

About a month ago, Hailey’s mom, Nancy, introduced herself to Jean after a workout at our health club.  She told Jean she planned to ride Tucson and would like to ride with us.  There she was, at 6:15 a.m., sporting a smile as big as Montana, ready to go.  Nancy’s husband, Joe, joined us with his tools and helped with a couple of last-minute adjustments.


Early morn jiggyness.                                     We're off!

The start was pretty much as expected.  We cleverly removed ourselves from the fray by not pedaling.  People passed us for a solid hour before we found ourselves moving with the flow of bikes.  These were our people -- not in any particular hurry, happy and polite.  We met a Canadian who likes to tell American jokes, to wit:

Hoser: What does the “N” stand for on Nebraska’s football helmets?

Jean: Do tell. 

Hoser:  “College”.

At about 28 miles, we stopped at an aid station for snacks, where we ran into our friend from ski instructing days, Mike Fratrick.  Mike is a 10 time Leadville 100 finisher.  He and his wife, Marge, claim to have been motivated by the Oso High mission to take part in five centuries this fall.  Tucson was their fifth.

As our pace was beginning to match or exceed those around us, bikes began to line up behind us.  Nancy kept a safe gap between us and other bikes, which helped us be able to ride with no hands on the bars, a big relief for my neck, shoulders, and arms. 


Rocking the hands-free look.                               Sabino crossing.

Our plan was to arrive at the second river crossing feeling fresh.  We accomplished that goal.  In fact, I’m not sure I had even broken a sweat by then.  We stopped again at the end of a crossing and grabbed snacks before we headed out for an easy ride to mile 66.  We stopped for a long break there, changed clothes, refueled on fluids, and talked with some people we had met previously in Tucson. 

By the time we reached Rattlesnake Pass (91 miles) we were in need of sugar.  We spent about 15 minutes at the rest area before heading into the home stretch. 

Cresting Rattlesnake Pass

With less than a mile to go, Jean announced that she cared only about beating rider number 807.  I have no idea why.  He seemed like a nice enough guy, but he must have done something to make Jean mad.  The following two pictures, taken in the final 200 hundred meters, illustrate why it is a bad idea to make Jean mad. 


Pouring on the coal.,                                       Eat that, 807 (rt.)

At the finish, we gathered up for a team photo, then snacked with the Fortins, Fratricks, and our neighbor, Kat, who had ridden with us part of the day. 


Our time was 7:22, well off our best time of 4:40 three years ago, but this time we had no barfing or other gastro-intestinal issues.  Meanwhile, out friend Tim, who finished in 5 hours, had worked his way through most of a 12-pack of Bud Lite while we were still out on the road.

Now, about that bus.  The Fortins offered to ride back to our hotel to help us load the tandem back into our truck.  The Expedition was parked diagonally along a busy street.  We pulled up behind the truck between the truck and stopped traffic.  When we attempted to get off the bike, I stepped to the pavement with my left foot, holding the bars with my left hand and the saddle with my right.  As I pulled my right foot over the top tube, I failed to pull my foot over the top tube, lost my balance, and fell backward into the traffic – specifically a city bus.  My head hit the side of the bus, which was now moving, and I fell to the pavement, pinned against the buys by the bike, as the rear wheels of the bus moved toward my head.  As Joe tried to move me out of the way, bus passengers and Jean reacted in a loud manner that caused the bus driver to stop the bus.

After the bus driver had us fill out reports on what happened, he handed us a card and said, “In case you need to contact SunTran”, to which Joe responded, “ I think we have already contacted SunTran.”


One hundred eleven point five miles by tandem with partially functioning hands and a melon supported by a bungee cord.  All according to plan, except the bus part.  So, what’s next?  Check back tomorrow.


Day zero, November 19, 2011 (part deux). This might be a somewhat long entry, so, for the benefit of the roadies, let me start with the primary take away from Tucson. A bit of background.  A bike racing year has several parts. You have the "early season", which is roughly February and March, and includes a handful of events with names that should but do not include the word "ice".  People who participate in the early season races fall into three categories: 1) racers who bought a new bike during the off-season; 2) racers who bought a new bike during the off-season; and 3) racers who bought a new bike during the off-season.

"Racing season" begins in late March and goes through August or September, depending where you live. This is the time of the year when bike racers earn their eccentric reputations. They begin measuring and weighing their food portions. They become useless domestic partners, with time only for racing, training, eating , sleeping and work (if they continue to go there). Their eyes fall deep within their skulls, their skin becomes translucent, and they mumble frequently.

Those who emerge from racing season employed and with their relationships intact either move directly into the off-season or enter "century season". Century season runs through November, and features a number of events with distances in the 100 mile range. During racing season, the fields typically range from 25 to 150 racers. The centuries, which often focus on fundraising, draw hundreds to thousands of participants. Some of these participants weigh more than their bicycles and don't wear stretchy pants. These people are thought of by racers as "common folk". In order to ensure that the common folk do not confuse themselves with bike racers, the bike racers take on a feigned air of nonchalance when discussing the event. The following is the transcript of an actual water cooler conversation between coworkers, one of whom is a racer, and one of whom is a weekend bike rider.

Common man: Hey, Dick, are you doing the tour this weekend?

Dick: Maybe, dude. I really should catch up on some work around the house – during racing season I was gone every weekend. [In fact, Dick wouldn't miss the tour to save his wife. He fully intends to exact revenge for a number of painful losses during the season to people whose eyes he would claw out if only he could.]

Common man: How have you trained for it?

Dick: oh, this is my off-season, so, if I do it, it will be a chill ride for me. [In fact, Dick has visited the finish area, measured the distance from the final corner to the finish, and determined for where he will attack].

Common man: Cool, maybe I will ride with you.

Dick: OK, bro, but I will probably stop at all the aid stations. I am going to see how many doughnuts I can eat.  [Liar].

After the centuries wrap up, all bike racers are in “off-season” mode. In many sports, the off-season is when the athletes stop doing the activity. Not so for bike racers, many of whom will put in more mileage during a typical off-season week than they do during any other time of the year. The reason for this was succinctly put by a retired professional bike racer who famously said "the better I get at racing bikes, the worse I get at everything else in life." So, they put in endless, low output miles, they read training manuals, and they put together spreadsheets that prioritize their bike racing-related plans for the off season.

Which brings me to the entire point of this entry. Attention Roadies: the fact we finished Tucson is living, breathing proof that, when you put together your off season priority list, you can put "upper body weight training" right after "alphabetize the paperclips".

So, I got a bit off track. Tomorrow I will tell the story of Tucson and the bus…

Day zero, November 19, 2011. We did it! 111 miles on the tandem. 7:22. I feel like I got hit by a bus. Wait – I did get hit by a bus! Details tomorrow.

Days 2 and 1, November 17 and 18, 2011 (days 4 and 3 existed, but I goofed the math). In order to make a negotiated resolution more likely, I have taken down the part of the last post that talks about how Presbyterian Insurance Company sucks. This may be temporary.

Well, here we go. We picked up the tandem Wednesday evening with its new riser tube, which bring my handle bars up about two and a half inches.

We also lowered my saddle about one fourth of an inch. These changes, coupled with my melon keeper-upper reduce my upper body fatigue considerably. We took an easy 20 mile test ride on Thursday, and it went so well we will be loading the tandem into our truck in a few minutes.

As a hedge measure, Jean suggested we should take her bike and my trike, lock them to a spectator around mile 70, and swap out at the point. I like how she thinks, but we ultimately decided the hassle factor was probably too high.

We are taking some people with us, in spirit. We each have this list taped to our top tubes.

 If you happen to find your self thinking about Tucson tomorrow, please say a little prayer for our safety as we make our way through a field of several thousand differently-abled cyclists, some of whom will appear bent on wreaking helter-skelter. But save the serious praying (if you have some) for people who have ALS and can't turn a pedal once.

Jean won't see this until after the race, so here are a couple of secrets. Just between us. Jean knows I can no longer feed myself a normal meal that isn't wrapped in a tortilla, and she knows I need assistance to put on standard clothing. She also knows that, when I go to the weight room to test my max on various exercises, I top out at 3 pounds for the biceps curl. That means, if you follow the math, if I recruit both arms to pick up 10 pounds of goose down, it will fall to the floor with a dull thud. When we ride the tandem, Jean has no control over braking, steering or shifting. Silly girl. I know why she is getting on the bike, and I love her more for it, but her clients should be warned: she has very, very bad judgment. Remember that scene in Animal House when Flounder is weeping over his nearly-destroyed car, and Bluto says "face it – you [screwed] up… You trusted us." Hopefully, we won't be there on Saturday evening.

I forgot the second secret, but it was probably related to the first.

Days 7, 6 and 5, November 14-16, 2011. As we sit here on Wednesday, November 16, we still haven't decided which bike or bikes will be in the car when we leave for Tucson day after tomorrow.

Day 7, November 13, 2011. Surprise!! ALS is full of surprises. You never know when it might kick you hard and the nuts (if you have them, of course), and you never see a real moment of sweetness coming. Here are some examples of each from this weekend.

Friday night we attended the ALS Association's annual dinner to recognize people who contributed to the Association's fundraising walk. I was a bit surprised we were even invited given we were riding the tandem 100 miles at Acoma the day of the walk. Then, at the end of the evening, Kerrie thanked us for the efforts of Oso High during 2011, and she presented me with the Leadville buckle I would have earned if Mike and I had completed the course under 12 hours. You have to understand that, at Leadville, 12 hours means 12 hours; not 12 hours and 10 seconds; and definitely not 62 miles in nine hours. So, that was a bit of a jaw-dropper.  Then, I flipped over the buckle, where I found this engraving:

100 kilometers

100,000 dollars 

100 thanks are not enough 

The ALS Association New Mexico Chapter

Jean does not want to ride Tucson. She is worried about the crowd, my neck, hands arms, and shoulders. She wonders how we will manage the bike in the two dry, sandy river bed crossings. Oh, and she is fretting over about 35 of the 111 miles. Sunday morning we sat down for our daily negotiation, and she said "I'll do it", through a forced grin, adding "because I love you."

At Sunday mass, I held out my loosely cupped hands to receive communion and discovered this is the Sunday my fingers would give me the finger in church. I received the small piece of consecrated bread, then struggled trying to get it into my mouth as I walked. I stopped to make sure I got it right because I've heard if you drop it, a crack opens in the floor and you fall straight to hell. While I fumbled, Jean came from behind me and lifted it into my mouth for me.

Surprise! Some of each kind.

A couple of people recently asked me how fast the voice recognition software works. Albert Haynesworth is much faster. Today's entry took almost 2 hours.

Days 9 and 8, November 11 and 12, 2011. Got in a lovely loop around the city with Tim on Saturday (road bikes). I did not feel well at the outset. I was preoccupied with Tucson, and overly focused on my hands, neck and shoulders, all of which seemed tired. However, by the time we finished the major climb Tramway Boulevard, I felt like a cyclist again.

Good thing, because we have reached an agreement on Tucson. We are going to do the 111 miles on the tandem! Jean negotiated for "something expensive", to which I agreed with no further definition or limitation. I was operating under duress.

A reminder: Do you know someone with ALS who can't do the things they love? Have you lost such a person?  Send me an e-mail with the person’s name and/or picture. The name/photo will be on our bike frame all the way. Um, or at least as far as we make it...

Days 11 and 10, November 9 and 10, 2011. Tucson stalemate, day 30. Tucson stalemate mediation day 5. One thing is certain – at least one of us will be riding 110 miles next Saturday. Every pedal stroke will be for someone with ALS who can't rotate the pedals even once because of this rotten disease. Do you know such a person? Have you lost such a person? Send me an e-mail with the person’s name and/or picture. The name/photo will be on our bike frame all the way. This might be a good reason to make a donation – any amount – to ALSA (click here). Thanks!  Meanwhile, I think we need some help.


Days 13 and 12, November 7 and 8, 2011. The Vortex is in; the Felt Z2 is on eBay.


"We're not a gang, officer; we're a club…"

Tucson is right around the corner. We really do have to make a decision. As much fun as the trike is, I still vote for the tandem. The bike is in the shop for a couple of modifications that should improve my comfort. Still need to figure out how to improve Jean's comfort…

Are you a happily-married adult? Did you maintain a journal or diary during a period of time before you met your husband /wife? It may not be the sweet piece of family history you have assumed as you have carefully preserved it over the years. It may, in fact, be a turd in your family's punch bowl that no one will notice until you are gone. My advice: find it; read it; shred it. Don't ask.

Days 15 and 14, November 5 and 6, 2011. So, with the assistance of a federal mediator, negotiations relating to Tucson have opened. My first offer: 109 miles on the tandem. Jean’s first offer: rake leaves in Albuquerque. Even if we can't find any in our yard.

With the able assistance of the mediator, a number of options have been discussed, including:

  • 109 miles on the tandem.
  • 80 miles on the tandem.  
  • 66 miles on the tandem.  
  • 109 miles on the trike, with Jean on her single.
  • 109 miles on my single, with a kiss from Jean before I start.
  • Raking leaves in Albuquerque. Even if we can't find any in our yard.

I will keep you posted.

Over the weekend, Jean and I took Abby to see Taylor Swift in Houston. The hotel was booked solid with people attending the Texas Emmys, people attending the International Quilting Festival, and people attending the Swift concert. It was very easy to distinguish any one group from the others.

Days 17, 16 and 15, November 2 -4, 2011. Let us talk about Tucson for a moment. Jean is losing confidence in my ability to do something. Perhaps my ability to handle the tandem among 6000 bikes; perhaps my ability to stay awake for 109 miles. I am not really sure, but she has made it clear there are many things she would prefer to be doing two weeks from Saturday.

In order to calm her anxiety, we rode 52 miles yesterday. The plan was to ride at a pace we could maintain all day. To ease my discomfort, I wore the head keeper-upper device. My expectation was this would be a fairly easy ride. It didn't really work out that way.

We had planned to leave the house by shortly after noon. It was 2:30 PM and 45° when we finally got rolling. The temperature dropped throughout the ride, as did and the sun. My legs fatigued somewhat, though not inappropriately. The neck support device (bungee cord) made a massive difference in my overall comfort. Interestingly, it appears to make it much easier for me to keep my throat clear. But I fidgeted quite a bit, moving my hands around on the bars and taking them off the bars frequently, which is not Jean's favorite thing that I do while we ride. Perhaps she will like that better when I take my hands off the bars when there are 10 bikes within spitting distance.

The cold weather also took its toll. At about two hours and 15 min. into the ride, my hands were cold enough I couldn't reliably shift gears, and I could no longer reach my fingers from the bars to the brakes. The practical importance of this is difficult to conceive. When this happens, I have to pick up my hand off the bar, moved my arm forward until the fingers are in front of the brake levers. Then, I lower my hand so my fingers are hooked over the levers, and pull my arm back until my thumb can be lowered to a position around the bar. Once I have done this, then I can squeeze to activate the brakes. That's a lot of words, but it only takes a second even in very cold weather. It can become significant, though, because, in one second at 20 mph, a bike travels… [performing calculations] … 12.2 miles. So, we have to stay alert.

Here is the Tucson start in a nutshell: there will be about 6000 and bikes in the race. People begin lining up for the 7 AM start at about midnight. We have gone fast in the recent past, which gives us access to a corral at the front reserved for about 500 bikes. That means I can position our bike in the pen at about 5 AM and go back to the hotel until shortly before the start.

If the sky is clear, it will be about 40° at the start; if it is overcast, it will be about 50°. Either way, it will warm up nicely, which means there will be a fairly nasty headwind for the last 20 miles or so.

After an inspirational speech by someone in the cycling world who has recently been or is about to be suspended for doping, the national anthem is played, someone says "go" the, and we are off. People in the back of the pack will not move for 5 to 10 min. Up front, those first minutes are pure chaos. Fox in the hen house chaos.

Before the seventh mile, all of the following will occur:

  • Someone riding in a straight line at a constant speed on perfectly smooth blacktop will crash. It will be impossible to determine why the crash occurred. It is will take place without a collision with another bike. The Domino effect will move away from the crash, first backward, then it will fan out to both sides, taking down 10 to 25 bikes. Everyone who sees or hears this will say a bad word.
  • At least a dozen water bottles will escape their cages. Each one will hit the pavement and dance with the random and unpredictable character of and drop of mercury on a slate table top. A water bottle running amok in and group of cyclists causes people to behave like ants under attack from a can of Raid. Like the ants, some may die, and those who do not will come out of the experience meaner. Everyone who sees or hears this will say a bad word.
  • Someone who has inflated his or her tires to 150 PSI in order to save an estimated 3 min. over the course of 110 miles will have a blowout. This will not be a pssssssssssssssssssssssft flat tire; this will be an explosion.  BOOM! This will cause someone nearby to flinch, swerve and take out 3 to 5 bikes. Everyone who sees or hears this will say a bad word.
  • Someone who sneaked his bike into the platinum pen will be yelling repeatedly over the din of his iPod "GOOOOOD morning Tucson. HAHAHAHAHAAAAAA!!” Everyone who sees or hears this will say a bad word.

Tomorrow I will explain how this may impact our decision about how to approach Tucson.

Day 18, November 1, 2011.  Don't screw with antidepressants. Several months before I was diagnosed, early morning ESPN would cause me to tear up at inappropriate moments (e.g. Seeing highlights of a Yankees loss, which should make me very happy.) I learned this was suggestive of a feature of ALS called "emotional lability", which is inappropriate emotion – typically laughing or crying. My doctor prescribed citalopram, an antidepressant. That was over a year and a half ago, and I have not had a similar problem since.

An excerpt from the prescribing information for citalopram:

If you suddenly stop taking citalopram, you may experience withdrawal symptoms such as mood changes,irritability, agitation, dizziness, numbness or tingling in the hands or feet, anxiety, confusion, headache, tiredness, and difficulty falling asleep or staying asleep.

Now have a look back at my description of October 30. Hmmm.

Last Thursday, while drinking a glass of wine, visiting with two of her sisters, a brother in law and Jessa, and while texting a girlfriend about a workout plan, Jean separated all my pills into a weekly dispenser. Or ... did she?...

This morning, I watched a feature on ESPN about a stock car driver and I got all teary. Still experiencing the dizziness of the weekend, I staggered to my pillbox for where I learned I had missed five days of citalopram.

Don't screw with antidepressants.

Day 19, October 31, 2011. 


Day 20, October 30, 2011.  It was one of those days. My hands felt impossibly weak; I staggered when I walked; I couldn't understand myself when I talked; I had persistent vertigo and intermittent nausea; the Redskins lost; and I woke up from a nap with a brain-eating zombie baby next to me. Time to go to bed. We'll try again tomorrow.

Days 22 and 21, October 28 and 29, 2011. Norbert Neumann is a bike racer. A retired bike racer. A very retired bike racer. In his heyday, Norbert was a dominant local and regional force in the Midwest. He qualified for the Olympic trials, but suffered a mechanical problem in the trials and watched his Olympic dream ride away from him. Eight years later, his brother made the Olympic team, and Norbert traveled with him to the Games in Melbourne Australia. The 1956 Olympic Games. I will save you the math – Norbert is north of 80 years old.

Norbert lost his first wife to ALS. He read the article about us in the Albuquerque Journal. This prompted him to attend an ALSA support group meeting to see what he could do to help locally. There, he met my sister-in-law, Maureen, and he showed up in our lives this week. With a gift.

In the man cave with Norbert and some souvenirs of his days in the saddle.

I pause at this point for a content advisory. If you don't understand why boys like poop jokes, it's probably best if you just close your browser window and come back another day.  Buh-bye.

You have been warned, so here we go. I am quick to point out I don't need one of these yet, but there is a device that makes going to the bathroom a "look, ma, no hands" activity. Not only that, but it also welcomes the user with a warm seat, and uses adjustable-temperature water to accomplish its mission. After the important work is done, it seals the deal with a miniature (built in) blow dryer. Norbert had one of these lying around the house and decided it should be put back to work. Norbert  knew no one would have more opportunities to use it than a 7000 calories per day bike racer. Thus, with one mitt outstretched and a toilet seat hanging from the other arm, we met Norbert.

Jean was first to test its operation.

Jean singing "Sweet Mysteries of Life, At Last I've Found You", all Whitney Houston-like.

I was next, and I'm here to tell you it could cause me to swap Sports Illustrated for War and Peace as my bathroom reading material. I mean that in a therapeutic/peace of mind/hot tub sort of way, not a deviant/creepy way, so please don't call CPS.

So, here is my advice: if you have ALS, go to http://magicbidet.com/products.asp and get one. If you don't have ALS, go to http://magicbidet.com/products.asp and get one.

Days 24 and 23, October 26 and 27, 2011.

Let me sleep on it. /  Baby, baby, let me sleep on it. /  Well, let me sleep on it; /  I'll give you an answer in the morning.

Several years ago, with Meat Loaf urgently warbling these lyrics over video of a man sleeping on the hood of a new Chevrolet in his garage , GM announced its 24 hour test drive policy. GM has abandoned the policy due to the abysmal judgment of graduate students living in California near the Mexican border, but the concept is still alive. Thanks to the generosity of John Dunbar, I enjoyed a 48 hour Ice trike test ride.


Power transfer is surprisingly efficient; handling is responsive; and comfort is unreal.  With my arms and hands relaxed at my sides, my upper body reclined, and my neck supported, fatigue is appropriately limited to my legs.  Speed? This model has heavy wheels, fenders and saddle bags. Even so, on similar effort, my average speed was only about 3 mph slower than my 15 pound racing bike. They make a model about 6 pounds lighter that probably would close the speed gap.

Let me sleep on it. /  Baby, baby, let me sleep on it. /  Well, I slept on it, and gave them an order in the morning. Oh, yeah. Vortex+, dog.


Day 25, October 25, 2011.  Whew... I could have wound up in the NIH cause of death category called "non-transport accidents: falls". Not really, but this is a nice segue into today's topic: fall down, go boom.

The classic beginning to falling with ALS is developing "drop foot", which occurs when the muscles of the shin weaken to the point that lifting the toes up becomes difficult. Often, a person will notice an increased tendency to trip on carpet as one of the first signs of ALS. My leg strength has been holding and I am was actually tested twice in the last two weeks for any sign of drop foot (no evidence of a problem yet). However, as I have mentioned before, ALS does cause brisk reflexes. Doctors examine this by the familiar rubber hammer to the knee test. A normal reflex is demonstrated by a brief delay and at a gentle forward jerk of the lower leg. If you perform that test on me, stand back, dog, or you may take a size 11 in the kisser.

Similarly, there is a reflexive response to kicking something. The reflexive movement is back, away from the kicked thing. We all occasionally trip on carpet. Here's how it normally goes: one foot is moving forward along with the body's center of mass. The foot hits the carpet early, momentarily stopping the leg's ability to prepare to maintain support for the center of mass. The center of mass, meanwhile, continues on its merry way, and you feel like you might fall until the foot that tripped catches up with you.

This is a bit different for me. Remember that kicking reflex? Well, it is triggered by the trip, and my foot jerks back, increasing the distance it has to travel in order to get back under me to prevent a fall.

So, there I was tonight, minding my own business – walking into our home office. My left foot kicked the carpet, the reflex jerked my foot back, my torso continued its journey, my foot recovered to the point where it should have enabled me to remain upright, but my knee chose a bad time to buckle, and I splattered onto the desk. I landed in a pile of ceramic and glass treasures I had packed out of my office Monday. It sounded like I had taken a baseball bat to the china  cabinet.

I suppose this little incident was a preview, a harbinger, a shot across the bow, a warning of things to come. I got tossed out of the Cub Scouts before I was even 10, so I understand how important it is to be prepared. I am already set for the day domestic falls become a serious threat. Click here.

Days 27 and 26, October 23 and 24, 2011. Here's a big, stinking pile of sheep's whiskers. Remember AIDS? The government declared war on AIDS over 20 years ago, and now more people die of ALS than AIDS. Right? Let's see what the feds say.

According to the National Institutes of Health, there are about 5000 new cases of ALS every year, and a relatively stable population of 30,000 people living with ALS. That must mean we lose about 5000 people to ALS every year, right? Don't ask NIH. A different dude at The Centers for Disease Control is in charge of keeping track of causes of death, and he apparently doesn't read the stuff they write over at NIH.

The outcome of some diseases, like heart disease and cancer, seems to be followed very accurately. Many less common diseases, however, are reported with almost uniform nonuniformity. To illustrate, the immediate cause of death for many people with ALS is pneumonia, while the underlying cause is ALS. CDC acknowledges (in a footnote) that, while it seeks information on underlying causes, its data may be skewed by the overreporting of immediate causes.

The result of this poop-in, poop-out methodology: according to CDC, more people died of "legal intervention" (death penalty executions) last year than ALS. [insert Rick Perry joke here]

35 miles along the Rio Grande on my road bike today. I haven't used my heart monitor and a couple of months. The computer showed zone 4 numbers generating zone 2 power with zone 3 level of effort. This is so confusing.

Day 28, October 22, 2011. When we left the cabin, our drive down to the village was like a drive through the zoo. So, this guy walks into a bar in Canada. He is about to embark on a week-long backpacking trip in the wild. He asks the bartender for advice on dealing with Canada's infamous bears he is likely to encounter. The bartender says: "Yeah, sure, okay. When ya’re ote there, ya have to remember the grizzlies don't climb, and the brown bears climb like monkeys, dontcha know. So, if ya run into a grizzly, ya climb your self a tree. And if ya find your self staring at a brown, ya run, then, eh?”

The man thanked the bartender for the tips, paid for his drink and turned toward the door. The bartender looked up from the glass he was drying and said "oh, one more thing, ya hoser. Do ya know how to tell the difference between a grizzly and the a brown?” The man shook his head. “Way in the back, the grizzlies have an extra set of molars,eh.”

In Angel Fire, we have a similar problem. Some of our black bears are black, and some of our black bears are brown. On our way down the mountain, we saw a massive brown black bear wandering off into the woods to do whatever bears do in the woods. This is not an everyday occurrence. In seven years, aside from the dead black black bear we found on our front porch, we have only seen three bears. Before the excitement died down, we nearly plowed through a herd of four-foot tall wild turkeys. Then, two gangs of deer. A Yeti sighting wouldn't have been a surprise.

 Albuquerque High School sports update: Abby’s JV team advanced in their tournament by scoring two goals in the final 5 min. to take a 4-3 win over Rio Grande. Jimmy's varsity team earned the number seven seed and the state playoffs

Day 29, October 21, 2011. My dad and stepmom are visiting us in Angel Fire. Dad spent the last 3 1/2 months peeling 100 years of funk off an ice box that belonged to my great-great-grandmother. He restored it to better-than-new condition, and transformed it into a wardrobe. It is a work of art. A 500 pound work of art. ALS Boy will need the help of some friends to move this baby upstairs.

While dad was rewiring our roof so the snow doesn't stick, and Charlotte was moving 1900 pounds of aged pecan wood from under our deck into their trailer, Jean and I were slacking.  Specifically, a nap and a bike ride for me, and a hike for Jean. A spectacular afternoon under the golden glow of sunlight filtering through the Aspen.


Day 30, October 20, 2011.  Poor, poor, pitiful me.  Here we are in Angel Fire.  At the cabin.  In the garage.  The contents of the garage include, in part, the following: hand tools; a snow blower; two ladders; three chainsaws; several mountain bikes; golf clubs; a lazy boy recliner; horse shoes; snow shovels; three drills; a table saw; a pick axe; skis; a weed whacker; 20 pound bags of snow melt; snowshoes; paint; and hitch and trailer parts.  Of all that stuff, there are only four things I can still use: the recliner, my mountain bike, skis and snowshoes.  How tragic.

Hold your horses.  First, we have a cabin in the mountains, so I should at least feel social guilt about pouting.  Second, if God had tapped me on the shoulder a few years ago, handed me the garage inventory and said “when you are 51, you will be able to use only four of these things -- your pick”, guess which four I would have picked?  Awesome!

Days 32 and 31, October 18 and 19th, 2011.  An afternoon in the weight room I would prefer to forget.  And I might have if I hadn’t just dictated this.

This morning, Jean and I got on the tandem for a 48 mile Everyday Normal Ride with Damian Calvert and Mike Archibeck.  I am beginning to see a correlation between neck fatigue and a tendency to choke on phlegm.  It feels like my neck sags under its weak muscles, restricting the flow of air through my windpipe.  Everything worked fine for the first half of the ride, but got a bit ugly as we got closer to home.

About 6 miles from a home, we pulled up to an intersection and I began hacking, choking and dry heaving.  I think Dr. Archibeck doesn’t really like sick people.  I thought he might perform a roadside surgery; instead, he.  Went.  Home.  It’s OK, though, because he fixed our flat tire 12 miles into the ride.  Plus, I think I will go buy piranhas for his swimming pool today.


Day 33, October 17, 2011.  John Dunbar and Elise Wheeler showed up at our house this morning with John’s new wheels.  I took it for a spin.  Everything about cycling ALS has made more difficult it is easier.  And it is fast…  Check it out –click here.  If that didn’t work, then click here.  Oh yeah.

Days 35 and 34, October 15 and 16, 2011.  Yesterday, I wrote “Perhaps things will go better on the mountain bike in Angel Fire tomorrow?”  The answer is in: not really, but it didn’t have very much to do with ALS.

Let me back up a step.  When we arrived last night, I got out on the downhill bike (whose name is “48 Pounds of Steamin Downhill Funk”).  This was cool primarily because I enjoy wearing the gladiatorial gear. 


The plan for Sunday was to ride Angel Fire’s new cross country trail, “Enlightenment”.  The trail claws its way up the mountain, gaining 1500 feet in only about 3 miles of narrow single track exposed to significant downhill drops if you make an error in judgment.  The safest way to ride a trail like this is to cheat your balance toward the uphill side.  That way, if something happens, you have a short uphill fall.  An important piece of this is to be able to quickly and efficiently free your shoe from your pedal. 

Mountain bike shoes and pedals work like so: a small metal cleat is bolted onto the sole of each shoe at the ball of the foot.  The pedals are shaped like egg beaters.  When you step on the pedal, its spring tension gives way to your weight, allowing the jaws of the pedal to momentarily spread, then snap into place, locking the cleat into the pedal.  To escape from the pedal, all you have to do is twist your heel away from the bike.  With practice this can happen as quickly as if you were on a flat pedal.  If, that is, the cleat is secured tightly to the shoe.  If one or both of the bolts holding the cleat are loose, you can twist your foot all the way around like GI Joe and it may still not come out.  Another hazard that can make releasing difficult is if a very rare rock or stick gets stuck in the sole of your shoe in a way that it might interfere with the relationship between your cleat and your pedal. 

I enter the ski area at the end of our road by riding over a hump constructed to prevent ATVs operated by Texans from entering the ski area.  To enhance the fascist purpose of the structure, the resort has adorned the hump with three boulders, equally spaced about 1 foot apart.  The gap is just enough to allow a mountain biker to rumble up the hump, through the gap, and down the other side without the inconvenience of stopping.

I rode the hump between the middle boulder and the right boulder, but I didn’t carry enough speed to make it through the gap.  I hit my brakes and stopped in the gap and twisted my left foot out to hold me up.  Sadly, however, my foot did not come out, and I was committed to going to the left.  This meant I fell over the middle boulder, into the gap between it and the left boulder, and I smacked my helmet hard on the left boulder.  With my bike wedged between two boulders, and my legs hopelessly tangled in the frame, what I needed to get out of this mess was the ability to do one push-up.  No dice.  I squirmed around for a few minutes and finally got loose.  I immediately looked back down the road toward our cabin and saw what I feared most- Jimmy was approaching on his downhill bike, and I was worried he would make me go home.  Fortunately, he was focused on his downhill agenda and never even threatened to call Jean. 

At the base, we met Mike Hart, his son Michael, and Clayton Blueher.  The four of them hopped on the chairlift to take a few downhill loops while I headed up Enlightenment.

Before I left the base area, I inspected my left shoe and found a piece of plastic that appeared to be the culprit preventing me from releasing.  I went to the bike shop where my friendly mechanic, Kalen, took care of the problem and sent me up the mountain.

In the summertime, the mountains of New Mexico are green.  They are made up of a combination of pine and aspen.  In the fall, the mountains are set ablaze in streaks and patches of a few to thousands of golden aspen.  This weekend was the peak of the color, and Sunday may have been this year’s peak day. 

The lower section of Enlightenment was completed in June, and the track has matured nicely under three months of traffic.  The upper portion, however, was finished only days before Labor Day weekend, and appears to have been used only by those who travel by hoof.  What this means is there are many holes about the size of an elk’s foot, and frequent glistening mounds of elk turds.

Where the demands of the trail soften, the views are nothing short of spectacular.  Here is a sample.

First, this is the view from the site of my second crash.  The cause was the same as the first, so I became suspicious that the piece of plastic Kelan had removed was not guilty.


This is a shot of the view from the scene of my 3rd crash.  Again, the same cause.  Again, my speed at the time of the crash: zero.  About now, I began to suspect the actual culprit was a loose cleat bolt.  There was nothing I could do about it, however, because my hands are not competent to operate the tool that would tighten the bolt.  So, I resolved to stop by leaning to my right in the future.


These pictures were taken in a place where, remarkably, I did not fall.  I did, however, endure my fourth crash shortly before I took these pictures.  I did not document the fourth crash because it ended in a small stream which I discovered was wet.


At the end of my loop, I met back up with Mike, we rode the chair to the summit, planning to coast home on the dirt roads.  The day’s maraschino cherry was next.  As I stood up to scamper away from the chair, a quad bruise from repeatedly falling on my left side with a camera in my left pocket caused me to stumble slowly enough away from the chair that the chair, well, caught up.  It knocked me, headfirst, down the unload ramp, where I hit my head one more time.  One more time I heard the season’s refrain: “Duuuude, are you OK?” While I sat up at the bottom of the ramp talking to one lift operator, the other lift operator was on the phone with bike patrol telling them that a biker had fallen getting off the chair, hit his head, and his voice sounded slurred.  Only the silky tongue of Mike Hart and my acquaintance with one of the lift operators got us off the scene before the emergency crew could be dispatched to the summit.

Meanwhile, on the Angel Fire Bike Park downhill trails, the boys were doing this, this, and this (left to right, Jimmy, Michael, and Clayton). 


Maybe Tuesday will go a bit better on the road bike back in Albuquerque?

Day 36, October 14, 2011.  This is not a religion piece.  We are Catholics.  This is a relatively new development for me; however, Jean's family is so Catholic she has nine sisters, each of them has a brother, and many of her sisters are named "Mary".  In fact, the two immediately preceding Jean in birth order are both named Mary, and Jean's middle name is "Marie", which is French for "haven't we already named one Mary?"

Anyway, one of the Marys makes out-of-is this-world banana bread.  Mary goes by "Peggy”. Every few weeks, we receive a box filled with this stuff fresh from Peggy’s kitchen.  I will tie this in momentarily.

This morning, I went out with Tim for a 35 mile road ride.  I have had more fun on a bike before today.  First, I wore the wrong bike shoes.  The cleats on the bottom are a close enough match for the pedals on my bike that I didn't notice the problem until we were a couple of miles into the ride.  If I applied power hard, or if I downshifted, one or both of my feet would fly off the pedals.  For the first time in several weeks, I experienced neck fatigue, which meant I was having to fight hard to keep my forehead from dropping on to the bars.  Finally, I had a glob of something that, based on the timing, must have been banana bread and associated goo stuck in my throat making it difficult to breathe.

Other than that, it was the really nice ride.  Perhaps things will go better on the mountain bike in Angel Fire tomorrow? 

Day 37, October 13, 2011.  We have a very smart dog.  We also have Chatel.  As luck would have it, Chatel is a demographically perfect candidate to become a service dog for me.  After the publication of the article in the Albuquerque Journal, a woman who claimed to be a professional dog trainer contacted me offer her services to train an assistance dog for me and our family.  As it turns out, Arie’s Professional Dog Training is really in the business of training humans.  The distinction is not lost on either me or Chatel –we are both puzzled by why Chatel gets all the treats while I do all the work and pay the bill.

Another in my series of wardrobe malfunctions.  I went to visit my friend Max Madrid today, and rode home from his mansion above the west bank of the Rio Grande.  About halfway home, I discovered I needed to stop for a natural break at a port-a-potty.  Everything worked out fine until I attempted to pull up my stretchy pants, which, by now, were sporting a higher coefficient of friction due to the fact I had been sweating. 

I tried every combination of hands on shorts (one left, one right; two right, two left; etc.), but, no matter how hard I tried, I could not get the shorts higher than the halfway point, if you know what I mean.  I grunt like a shot putter when I do simple things that should be easy but have become monumental tasks, such as brushing my hair or pulling on a tee shirt.  My level of effort was very high, and I was making a fair amount of noise.  There was a woman standing outside, not far from my port-a-potty.  I became concerned that she might call the police just based on what she was hearing, and being branded a sex offender was a certainty if I dared to open the door.

So, I sat down to evaluate my options.  There were not very many that would get me back on my bike and not result in an arraignment.  I have been in some tight spots previously with my clothing, and I always look for hooks that might give me missing grip and pull strength.  The door lock was too high.  The toilet seat was ergonomically impossible.  The only remaining option was the grab bars installed in this accessible port-a-potty.  The problem was the bars were rounded at the ends, which would make getting a grip difficult.

I figured I would need to hook into the waistband on both of my hips or at the front and back of the shorts.  I decided to start with the easiest angle, and I hooked the front waistband over the bar, holding it in place with both hands.  The bar was only a bit more than knee high off the floor, so I had to squat to make this happen.  I had to squat further, of course, to make this exercise deliver the upward pull on the shorts.  Wouldn’t you know it?  Now my shorts decided to behave like Lycra and spandex.  The polished, round bar end conspired with my shorts and my weak hands, the whole thing fell apart –the shorts snapped back into place, my hands had no chance of getting a grip on the bar, and I fell flat on my partially-bare butt, as my back slammed against the (thankfully) locked door.  The whole structure rocked violently on its supports, and, from the outside, probably sounded like there was a pissed-off lion trapped inside.

I wouldn’t have been even a little bit surprised if I had then heard a muffled cellphone speaker squawking “911-what’s your emergency?” outside.

The key that ultimately unlocked my dilemma was wrapping more material over the bar and having my hands on both the material and the bar.

Yes, when I finally stumbled back outside, that woman was still there – now leaning against a tree, casually sizing up the situation as I made my way back to my bike.  I need another new tee shirt:

I am not a creep;

I have ALS

Day 38, October 12, 2011.  The ALS Clinic.  MDA and ALSA collaborate to make available a one-stop shop for ALS patients at the University of New Mexico Hospital.  I have been making separate visits to see people in speech, respiratory and neurological specialties.  Through the clinic, I can make one trip to the hospital, and see my neurologist, speech therapist, a respiratory therapist, a physical therapist, an occupational therapist, a dietitian, a social worker, and patient service coordinators from both MDA and ALSA.  Oh, and it is free.  That is the good news.

The bad news is what we had heard from other patients.  We expected never ending waits for grumpy and overworked providers, and possibly even leeches and a blood letting.  Something like so:


In fact, we saw all of the above specialists, had another pulmonary function test (all good), went through an insurance evaluation for the DynaVox (awesome), got coaching on eating and getting dressed without hands, found out my wobbly legs are due to supercharged reflexes, not weakening muscles (wicked awesome), and got a free doughnut.  More than 90% of our time was spent with health care providers, not waiting for them.

All in all, it was way more like this than I had expected:


Day 39, October 11, 2011.  I think Jean may be trying to kill me.  This morning, I went out for a mountain bike ride.  Now, that phrase (" mountain bike ride") probably sounds like more of an adventure than it really was.  I was on a mountain; I was on a bike; I was on dirt; indeed, I was on a mountain bike.  However, I was on roads; most of them are new or under construction; and I don’t recall seeing any rocks.

Perhaps it would be less misleading to say “I went out for a ride on a mountain bike”.  Anyway, I got a fair amount of exercise for ALS Boy.  Then, Jean took me out for another 3 hour hike.  We flirted with disaster on so many levels, including but not limited to: not enough food; not enough clothing; too late in the day; weather closing in; and a miserable surface consisting of snow, slush, mud, and elk urine. 

One more ingredient: aspen leaves.  In many places, and we found ourselves walking on a beautiful golden carpet of aspen on snow.  In my weakened state, my opportunistic wife took full advantage by dragging me to the game table, where she quickly took the lead in our seven year series of Pente.

 Day 40, October 10, 2011.  ALS is full of surprises (for example, "hey, I can't move my left pinky or thumb!")  Today, however, I had a more welcome type of surprise.  For a couple of months, my walk has felt unsteady.  This has slowed me to a pace Jean has always referred to as the "church walk" (you can probably guess why). 

This afternoon, we went for a three hour hike in Angel Fire, and my legs felt normal.  I was a bit wobbly coming down the mountain, but we were walking on a mix of melting snow, ice, mud and something that looked nasty enough to sully the reputation of the stuff in the bottom of a port-a-potty.

The afternoon was picture-perfect.  Crystal clear sky, snow-capped mountains, and a blaze of gold and red aspen.  Our hands defrosted quickly and in the hot tub after.  A good day's work.


If I got the hat at Wal-Mart, am I more or less of a cowboy?                    How's your aspen lately?



Day 42 and 41, October 8 and 9, 2011"That was a long time ago.  I was asleep in my bunk at 8:50 AM on Sunday morning when I heard explosions outside.  I looked out the porthole and I saw smoke and flames coming from Battleship Row."


Stick with me, now, this is going to be good.  In only two weeks of retirement, I have noticed a change in outlook.  Stop lights rarely bother me.  Ironically, I feel like I have all the time in the world.  Yesterday, I made my fifth trip to Best Buy to deal with our computer crash.  I was anxious to have the fifth time be a charm.  The line at customer service was long.  At the front of the line, an old man in green coveralls and a fishing jacket balanced on a cane.  A dark blue cap was perched off kilter on top of his head.  The que was moving slowly.  Actually, it was not moving.  Occasionally, the man turned his head to the right to survey the progress at the counter.  When he did, I could see the word "Pearl" embroidered in a thin line of gold.

I figured he was old enough to have been at Pearl Harbor, but I was itching to read the rest of the hat.  He conducted his business at the counter quickly, turned left and disappeared deeper into the store.  About 10 minutes later, I was finished with the Geek Squad and went to move my car to load my computer.  With everything in the car, I was ready to go.  Then I kicked into retirement mode.  "He wasn't moving all that fast”, I thought, “he might still be in there.”

I parked the car and got out to go into the store to begin stalking an old man.  As I walked around the car, I saw him getting into his SUV.  His door was still open when I approached him.  He did not appear startled; no, he looked at me as if he expected me to ask whether I could wash his windows.  With the combination of his hearing and my voice, it took a few moments to move the conversation beyond whether he had any spare change.  Once he understood it was all about his hat, he warmed instantly.  I asked him what it was like; he dropped his keys on the seat beside him; and it was over a half hour before I spoke another word.

On December 7, 1941, Lee Garrett was 17 years old, and a seaman second class, which meant he referred to nearly everyone else on the USS Pennsylvania as "Sir”.  The Pennsylvania was in dry dock when the attack began.  The first order to the crew was to abandon ship, but that was quickly supplanted by a call to general quarters (battle stations).  By now, Garrett was on deck.  The call to general quarters sent him down a hatch into the belly of the ship to retrieve gas masks.

Within seconds after he dropped through the a hatch, a Japanese bomb fell through the hatch, killing many sailors and leaving the guts of the Pennsylvania a tangled mess of steel and smoke.  By the time Garrett found his way back to the deck, Japanese zeros were strafing the ship and the deck was in chaos.  He took up a 50 mm gun and began firing at planes as they came low.  He knows he hit some, but never saw one fall from the sky.

After Pearl Harbor, the Pennsylvania sailed to San Francisco for repair.  During those months, Garrett spent his free time "chasing [women] and getting drunk”.  On one particularly woolly morning, his Bo’sun (one of the many superiors to whom he answered) told him "as long as you're in this Navy, you will be a seaman second class, and as long as I have anything to say about it, you will have every sh** job that comes along". 

Not long after that frank conversation, an opportunity arose for sailors to transfer from construction to overseas duty.  Garrett put his name in, and the Bo’sun took it right off the list.  Several days later, a friend of Lee’s, who was on the transfer list, confided in Lee that he had "the clap”, which meant he would not pass the physical for overseas duty.  The two men went to the officer who was now handling the transfers, explained the situation, and Garrett was substituted for his friend.  Within hours, the final list was approved by the executive officer and the captain, which sealed the deal, and Garrett was assigned to a Navy tanker in the north Atlantic ("a gas station for the Navy").  Garrett saw the rest of the war from the North Atlantic and off the coast of Africa.  He received his discharge the day after the Japanese surrendered in 1945.

Now, I have always thought of myself as someone who lives life fully and without regret.  But, somehow, knowing and accepting that my days (or years) are numbered has bumped my perception to another level.  It's as if every breath I take I inhale more of what's around me.  All from accepting that my time is finite.  Guess what?  So is yours.  Don't miss a thing.

Days 44 and 43, October 6 and 7, 2011.  Remember that scene in "Rocky" where Balboa is the battered and exhausted to the point his hands have fallen to his sides, and Apollo Creed is alternating left and right hooks to the face, with Balboa slowly staggering back toward the ropes?  Yesterday, on a road ride, Tim Holm was Apollo, and I was Rocky.

The work out was simple: warm-up;40 minutes at 240 Watts; 15 minutes easy; 20 minutes at 285 W.  I thought I would be able to hold the 240 riding beside Tim, and I expected to get dropped or ride Tim’s draft throughout during the 20 minute segment.  I was incorrect.  In fact, I rode nearly the entire 40 minutes on Tim's wheel. Based on that, getting dropped in the 20 minute segment was a question of "when ", not "if".  Much to my surprise, I held Tim’s wheel for the first 10 minutes.  Then, suddenly, my windpipe felt like it was being crimped like a garden hose.  Another way to think of it is this: if you suck hard on a thick milk shake, sometimes the walls of the straw will collapse.  It didn't take long before I realized this would not be an ideal respiratory situation, so I sat up and watched the asphalt gap grow between me and Tim until I felt like I had the oxygen situation under control.  At that point, I lowered my head, dug in, and tried to close the distance on Tim.  After a couple of minutes, my straw felt like it was going to fail, so I backed off once more. 

I don't know whether those sensations had anything to do with ALS.  I think not because it is roughly the same thing that happens when you go beyond the red zone in a race.  I did have one minor ALS-related problem a few times.  A phlegm ball would suddenly head for my lungs.  Before ALS, the muscles in my throat would keep this from happening, and I would simply eject the phlegm.  Now, once the goo ball heads for my lungs, I have to stop it with weak or muscles, and then inhale deeply enough to support a heavy cough to get rid of the stuff.  In order to make this happen, I have to inhale very slowly because a quick, deep breath would suck the goo into my lungs.  That would be an unhappy moment.  So, there I was, rocking along, flirting with the red line, and suddenly forced to inhale slowly.  You want to get this right the first time you try it, which, fortunately, I did.

Those issues were minor.  95% of this ride was struggling through a hard ride.  Just like before.  This was the first time I have pushed myself to the point of suffering on the bike in several months.  And it felt so good.  Oh yeah.

Days  46 and 45, October 4 and 5, 2011. DynaVox rocks.  Before I was even diagnosed with ALS, I heard about a computer called a “DynaVox Eye Gaze”.  As I understood the technology, it was an add-on to a computer that would track eye movement in lieu of a mouse and keyboard, and then turn typed words and phrases into speech. It sounded slow and very limited in function.  A lifeline to the rest of the world after I can no longer speak or type, but certainly not a toy.  Wrong. The DynaVox sales rep came to visit us this week.

It operates by words and phrases organized by topic, not merely one character at a time.  My “voice” can be mine to the extent I record while I can still talk, or I can sound like Usain Bolt or James Bond.  It will surf the web, browse an iPod, call the dog, seize control of the TV, make phone calls, and launch intercontinental ballistic missiles at Libya.

There is a lot I hope to be able to say in my personal drunk Sylvester The Cat voice before it is gone. Time to hit “record”.

Day 47, October 3, 2011.  HGH. Don't try it at home. If you have been following blogger posts on the popular ALS forums , here are some things to keep in mind:

  • The existing literature on the utility of using growth hormone to treat ALS symptoms is not encouraging.  While the theory makes intuitive sense, the data does not support the theory.  Human growth hormone has been shown to have dramatic and positive effect in two primary populations: children who do not produce growth hormone in an adequate supply; and athletes. 
  • In the best case scenario, where human growth hormone has a positive effect, there is absolutely no reason to believe it will affect the progression of  the disease.  In fact, it is appropriate to say it will not affect  progression.

So, if you or someone you care about is considering a stroll down that dark alley of the Web, stop.  Begin your adventure with a conversation with a qualified physician.  I am not one of those; rather, I am just another wacked-out patient willing to try about anything. Dopers suck.

Day48, October 2, 2011.  Jean's Fourth Annual 50th Birthday Party.  When we came from Mass this evening, there were about 30 bikes lying in the front yard, and a portable wood-fired pizza oven warmed up and ready to bake.  After pizza and other happy stuff, the gang got on their bikes and rode to a local ice cream parlor.


Part of the crew preparing for the road.                           Hanging at I Scream Ice Cream


 Jean and her VeryStrangeHat                                        New Wheels! 

 An unidentified man feeding an unidentified

  beverage to an unidentified infant, preparing

  to read him an unidentified book.  

 Days 50 and 49, September 30 and October 1, 2011.   I went out for a 50 mile ride with Tim Holm today and had my first crash on my new road bike.  Here is how it went: we rode 50 miles; I went home; I pushed the bike into our living room; I lost my balance; I fell over with my bike onto the carpet.  It was amusing today, but I suppose this will happen one day when I am not wearing a helmet.

Homecoming weekend at Albuquerque High  School.  We watched the football team lose 55-0 on Friday night.  On Saturday, the referee didn't appear for Abby’s game.  Then, in a clash of District 5 soccer titans, Albuquerque High’s boys gained control of the district's top spot by hammering West Mesa 4-0.

Both kids went to the homecoming dance at the convention center, where they heard a DJ spin three hours of bad ghetto music.  But they sure looked cute.


Days 52 and 51, September 28 and 29, 2011.  Even more technical problems.  I was on the phone with the geek squad until 1 a.m. tonight.  The verdict: the computer has the flu.  So, I am back to a laptop with slower voice recognition.

Mike Archibeck and Damian Calvert took me out for a 50 mile road ride today.  The weather was perfect, as was the company.  In fact, it got better as we went.  On a road north of Albuquerque, we picked up a fourth rider, a teacher from Albuquerque high school playing hooky (her word).  Without spilling too many of the beans, she teaches a particular subject, was about to begin a particular topic, and tends to get sick the day she begins to teach that unit.  I bet this doesn't happen in China.

The photo below shows what happens when you get a lead out from Damian for the green sign sprint, and Mike doesn't know you are doing a green sign sprint. 

Abby scored two goals in a 4-1 win over Atrisco Heritage tonight.  Go Bulldogs!

Days 54 and 53, September 26 and 27, 2011.  ALS is a boa constrictor... I am a retired lawyer.  I always hoped I would become one of these one day, so I have that going for me.  The circumstances are not exactly how I had imagined.  If I don't miss having a to do list longer than I could possibly do (and I don't), I do miss my friends and colleagues, and I already miss thinking like a lawyer.  Perhaps I should sue someone.  ALS is like a boa constrictor.  Every time you exhale, it wraps its body around you a wee bit tighter.


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