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166 Days to Leadville: Outriding ALS!


Leadville is in the history books!  For the current blog, "1 Day to Tomorrow”, click here.


What now?!! Click here:  44 Days to Acoma!

Day 0, August 13, 2011. 9:05! *

 

Good thing I didn’t come up here to pre-ride key parts of the course, because, if I had, cleaning out the closets this weekend would have looked mighty appealing.  I was right to be concerned about the Powerline descent and the descent from the top of the course at Columbine.  Both proved to be even more of an adventure than I had imagined. 

Things got going about as well as we could have hoped.  Before the race, I was going-to-the-guillotine nervous for some reason, perhaps worried about the stock market.  As a result, I had a very difficult time getting food in me before the race.  I figured my nerves would calm early, and I would be able to make up for the light breakfast on the fly.  Wrong-o.  The early miles were complicated by the fact the field for this year’s race was nearly doubled from last year.  The people who gained positions on St. Keven ‘s Road did so mostly by committing actionable torts.  The rest of us followed the wheel in front all the way to the summit of the first climb.  My first sign of difficulty came on the approach to St. Keven’s where I noticed my heart rate was running consistently 20 beats per minute higher than last year on a comparable or lighter level of effort.  This continued all day with my average heart rate at the bottom of Zone 4.

Mike and I hit the first time check on a 12 hour 45 minute pace.  Not bad given the slow traffic in the early miles.  Mike paced me up Hagerman Pass Road to the summit of Sugarloaf in a very reasonable time.  The Powerline descent was brutal.  It was far more rocky than I had recalled, and we stopped three or four times to give my arms and legs a rest.  Big sigh of relief at the bottom, and we breezed along quickly from there to the 28 mile aid station.  We learned then that the plan for me to eat solid food during the day was, shall we say, not  going to work.  We learned this in a manner that caused the documentary camera guys to back away from me suddenly.

When we left the aid station, Mike led me at a very comfortable and quick pace  toward Twin Lakes, but about halfway to Twin Lakes, we did the math and discovered that we were going to be very close to the 40 mile time cut.  The problem with this, aside from the obvious, was that our food was located at the lake before the time check.  We kept pedaling, what with that being the only thing we could do about it.  We were happy to see the crew had figured out that there was a problem, and Abby had figured out how to fix it.  When we arrived at the crew tent we were waved on to the dam and told that food had been moved to the other side of the time cut. 

As we rolled onto the dam, Paul Mohr explained to a Homeland Security guy what an amazing story had just passed by. “That’s nothing”, retorted the guard, “two years ago, Lance Armstrong won this thing with only one nut.”

It was of kind of fun semi-sprinting to beat the time cut, but only because we knew we were going to beat it, albeit by less than two minutes.  We refueled with liquids while Jimmy wrenched away, then we rolled out to begin the climb up Columbine.  The time cut before Columbine is fairly aggressive, so we weren’t concerned that our race was over simply because we had been so close to the cut.  We climbed at a reasonable pace to the barn about halfway up, where our pace had actually reached a sub-12-hour mark.  Not long after that, however, I found my pace slowing, my heart rate speeding up, and my soul hoping we would miss the next time cut .

To avoid tipping over or falling asleep, Mike had pedaled ahead a bit by the time we reached the beginning of the nasty part of the climb.  The founder of the race, Ken Chlouber,  was sitting across the trail from me on an ATV right when I decided to get off my bike to walk.  The only problem with that plan was I couldn’t quite lift my leg over the bike and I wound up just tipping over.  Ken quizzed me a bit about my long term plans before releasing me to continue.  I’m sure it didn’t help that I sounded like Otis the town drunk. 

Less than a half mile later, the whole scene repeated itself with the addition of a couple of medics as witnesses this time.  With Ken looking on, the medics determined I was not dead yet, but Ken was not satisfied.  I did my best to convince Ken that everything that was wrong with me was not new today.  After a few minutes of negotiations, we made a deal-- I could continue to the summit, but if I fell again, I would leave Columbine on an ATV.  In any event, I would come down from Columbine on a four-wheeler of shame.  Over the last mile and a half to the Columbine summit, I rode some and walked some, but I maintained verticality.  Ken had been keeping an eye on me , and met Mike and me at the top, where I introduced Ken  to "my doctor, Mike Archibeck.”  I told Ken that my doctor was fine with me riding down, but that I would let Ken decide on account of because we had a deal. Ken waved his hand in feigned disgust, and told Mike “he’s a tough S.O.B.; not very smart, but tough.” Then Ken suggested that if anything bad happened on the way down, Mike should cover me with rocks and a flower and continue back to the lake.

The Columbine descent was as tense as Powerline had been.  We probably stopped 20 times on the way down the mountain to allow my hands to rest.  Once we returned to the dam, race officials were waiting to enforce the 60 mile time cut.  Happily, Brian Nichols and Juliana Koob were waiting with the officials and with smiles.  This allowed me to avoid the indignity of having to make eye contact with the people who were pulling me from the race.

What happened next is difficult to describe.  We turned off the dam and back towards the parking area where our crew had been set up all day.  Once we were in the parking area, about 200 meters from the crew, we saw a small sea of red OsoHigh tee shirts and jerseys gathered around the 62-mile” finish line.”  The Archibeck kids led the assembly of the stage, and it was all quite festive. The celebration continued until nearly midnight, including the “Win, Lose, or Draw” party at our house.  The kids presented us  with partially-homemade “Leadville Trail 60” shirts and posters.

Before Leadville, Jean asked how far I hoped we could get.  I told her 60 miles would be a very good day.  Secretly, however, I thought we could finish.  I’m not saying I reasonably believed we could finish;  to the contrary, I unreasonably believed we would finish, and I knew how unreasonable that belief was.  If you didn’t follow that, I think what I meant was I hoped we would finish but knew we should not and probably would not.  Somewhere on Columbine, perhaps while I was being interrogated by Ken and his medical staff, I realized how objectively silly it was to think I could finish.  From that point forward, I became focused on getting to the top of that mountain one more time (not in an ATV) and making it back to our crew in one piece.  At the finish, I was every bit as excited as I have been at any previous Leadville.  Plus, having ridden only 62 miles, I didn’t need to throw up on Mike’s front porch or spend three hours shivering inside a sleeping bag, as I had after previous Leadvilles.

Things we did well:

  •  Asking the Archibecks to sign on.
  • Gathering the most amazing crew on the mountain.
  • The wicked cool Oso High stuff.
  • Choosing the pressurized Geigerrig hydration pack. The maker promises if you use it, you will “never suck again”.
  • Bike modification and the head keeper-upper.

Things we did very poorly: 

  • Counting on me being able to be to swallow and keep down solid food.  With my increased demand for calories, this ensured a bad nutritional result. 
  • Counting on me being able to squeeze a plastic bottle holding my energy gels.      

How our friends from New Mexico fared: 

  • Jeff Dorwart, 9:49, with two flats.  Jeff was the first rider to ever cross the finish line at Leadville wearing an Oso-High jersey. 
  • Cameron Brenneman, 7:32, with a flat at mile 3, which left him to fight through the entire field to get back near the rest of the elite riders. 
  • John Dunbar put in 28 miles, and was still awake and eating pulled pork at 10:30 PM. 
  • Captain Brent “forgot” to send in his entry form, but was the self-proclaimed MVP of Dorwart’s crew. 
  • John Mazzola, a 16 time Leadviller, claims to have retired from Leadville after the 40-mile point today, but don’t bank on that.  He has reportedly “retired” 15 times before.

What now?  If you’ve been following this blog, you probably figured out long ago it has not really been about Leadville.  Along the way, I have figured out that planning ahead 166 days with ALS is not really a very bright idea.  So, Monday we begin “42 Days to Acoma.” 

 

* Leadville Trail "60"........


 

 

Day 1, August 12, 2011.  All three occurred to me today. You make the call ...

 

 

p.s.: Lance Armstrong's "people" are here. Whatever that may mean.  And there are 2500 registered riders. Note to self: Wear a helmet.

 


Day 2, August 11, 2011.  164 days ago I received my “yippee/oh sh#%” email from Leadville. If I’d known any of the following would be true by race day, then I would have hit “delete” and gone back to watching “Days of Our Lives”:

  • My biceps curl max would be three pounds;
  • my shoulder press max would be ten pounds;
  • I wouldn’t be able to move one of those grip squeezy hand exercise things;
  • I wouldn’t be able to press “n”on a  keyboard with my right index finger;  
  • I’d need help or a small blow torch to trim my nose hair; or
  • my “gotta go” gait would be so obviously Forest Gumpian.

But, then, this wouldn’t be so interesting, now, would it? I’m old enough to have owned lawn darts and a chemistry set (the real kind plaintiffs’ lawyers and NASA got rid of decades ago). I remember standing on a playground with my friend Danny Connors, blindfolded, each of us armed with a lawn dart and wearing a snorkel mask (for safety, you know). We’d spin around in circles and let ’em fly on “3”. Whoever came closest to the target got a point; hit a car—minus one; within five feet of a toddler would earn you a DQ. We called it “Ghetto Horseshoes”.  Then there was the time we got a big bowl and both of our chemistry sets, and took them into the woods to a place we dubbed “Ground Zero”. We poured in everything from both chemistry sets, covered our noses with our t-shirts (for safety, you know), and dumped  in a bottle of ammonia.  Such ingenuity, by the way, is how America discovered what happens when you drop a Mento into a bottle of Diet Coke.

Just like the moment before the darts flew or the ammonia hit the rest of the witches’ brew, I’m sitting here halfway to Leadville having absolutely no idea what will happen next, but I can’t wait to find out.

The latest weather forecast: "70% chance of rain on 30% of the course 50% of the day".

August 11, 6:00 p.m. Leadville

Day 3, August 10, 2011.  Time to get our freak on! For some reason I can’t put my finger on, that  reminds me of the greatest professorial, Socratic moment in the history of law school. “What’s ‘tat’? Where do you get it? How do you exchange it for the other thing?” … Silence …  I digress.  Freak time.

The first thing to do, of course, in Leadville freak preparation is to draft a packing spreadsheet and a flow chart for the crew to use at the aid stations. Check.

From there, the crew took over:

Mom on food and drinks.

Abby on smoothies.

Jimmy was the team Wrench.

Maureen handled soft goods, including chamois tenderizing.

Lorrie was our hydration specialist, and injected my cheetah blood supplement.

Chris Dineen finished dialing in the noggin keeper-upper.

Jean took charge of looking cute.

I found the right socks.

 

Tomorrow we load up and drive. All freak-like at 5 mph over.

Day 4, August 9, 2011.  Installing bike shorts on ALS Boy has become something of an adventure.  It’s a very bad idea to try anything new in a bike race, particularly an epic event like Leadville.  The plan for today was a short dress rehearsal.  Step one: bike shorts.  I wiggled and squirmed until I was covered enough to appear on network TV (late night), which is to say my gender would be ambiguous to the audience (from the waist down), but I still had the Randy Moss thing happening on my back porch.  Abby was my designated helper for getting ready, and I couldn't bring myself to present to her in this state.  The fix: I hooked to the back of my shorts on a drawer pull and lowered myself toward the floor.  The tiny setback: my feet slipped out from under me, but the shorts held firm to the drawer.  The end result (after relieving an obvious point of discomfort) was acceptable.

From that point, all the way to getting on my bike, Abby helped with every step.  The ride went well.  It occurred to me, ignoring a few inconveniences, sitting on a bike is one of a most "normal" independent experiences I have in a typical day.  For example, buying a coke (if I don't use a drive-thru) is an effort comparable to purchasing and carrying a bag of cement pre-ALS.  But once I'm on the bike, moving, I may not be as fast as I was; I may have a grip of a two year old; half the water I get in my mouth may leak out before I can swallow it; and I may have to use a bungee to keep my teeth from hitting my handle bars, but the overall sensation and effort feels just like back in the day.

Tonight I rode over to the house of Le Domestique, Mike Archibeck, to work on our race strategery.  We figured out how we will: (1) go out from the start (slow); (2) when we will attack (never); (3) how we will ride the descents (slow); (4) how we will fuel on the go (stop); (5) how we will approach the second half (slow); (6) and what our media excuse will be when we abandon (“Contador dropped a bag of syringes, and all of our tires punctured.”) 

Day 5 August 8, 2011.  More equipment modifications. Jimmy swapped out the flat handle bar stem on the tandem for an adjustable stem that can bring the bars up and closer to me.  Jean and I went out for a 22 mile ride this morning, and the new, more upright posture was significantly more comfortable. For my Leadville bike, the night before the Sandia race, we exchanged my 160 mm disc brakes for 180 mm discs.  This may sound like a silly upgrade, but it will allow me to brake with one finger on most of the course.  This is important because the other nine fingers will be tied up hanging on to the bike.

Lots of roadies do Leadville.  That can make descending frightening, as leg shavers, hustling for a spot in the top 253, forget a mountain bike is nearly a foot wider than a road bike, and try to squeeze two bikes into a one bike spot.  This often ends with EMTs and expensive bike repairs.  Safety first. I'm making a sign to pin to Mike's backpack:                                                                                                                     

PASS WITH CARE

RIDER IN FRONT IS PREGNANT

Day 6 August 7, 2011.  I have often thought of myself as something of a renaissance man because I managed to go for a bike ride in the middle of the work day.  A law school classmate of mine at Virginia might be a better example.  Wilder Knight is a high powered entertainment lawyer.  His avocational accomplishments include: He was the lawyer on the recent Academy Award winning documentary, “The Cove,” an associate producer of “Mad Hot Ballroom,” co-producer of Academy Award nominated film “The Betrayal” and co-executive producer of 2011’s Sundance documentary Audience Award winner “Buck.”  Let that soak in for a moment.

Wilder’s current project is a documentary about ALS.  He heard about my situation from another classmate, Mark Carver, and contacted us a couple of months ago to see if we would be interested in participating.  Wilder has a vast network of filmmakers around the country, including David Harris and his production assistant, Kellen Rulon.  David and Kellen came to Sandia on Saturday, where they filmed and conducted interviews for almost seven hours.

Most of the interviews went something like this:

Dave: “ Dude, what does Doug Schneebeck mean to mountain bike racing in New Mexico?”

Dude: “Who?”

That’s why it took nearly 7 hours.  In addition to catching me blazing through the finish at nearly 5 mph, Dave and Kellen recorded Damian’s post-race speech, which they have posted on The You Tube here.

Days 9-7, August 4-6, 2011. What do Damian Calvert and Tim McGraw have in common?

On Thursday night, the whole family went to see Tim McGraw in AlbuquerqueHe is a top level country entertainer who, shall we say, sounds authentic in a live setting.  While his voice is credible for someone who is marketed as a good old boy who happens to play guitar and own most of Nashville, his biceps are decidedly other worldly.  They, and their abstract ink (the latter of which can only be seen when McGraw, brandishing a guitar pick, thrusts his hand in the air, making an inapposite “#1” sign), scream emphatically “we were not created by throwing hay bales off a turnip truck”.

McGraw has a song that poses the question of what someone did when he learned he has an advanced cancer and not much time left.  The answer:

I went skydiving;

I went Rocky Mountains climbing;

I went 2.7 seconds on a bull named Fu Manchu.

And I loved deeper;

and I spoke sweeter;

and I gave forgiveness I’d been denying.

He said "someday I hope you’ll get the chance

to live like you were dying".

I'm not dying; I'm living, just like you.  Every day we are both one day closer to the end.  If, however, we spend every day as if the end is defined and imminent, won't our days be richer?  I don't mean blow-the-credit-cards-richer, or crack-open-the-401(k)-richer, but what is the harm in one more bike?

Today was the Sandia Peak mountain bike championship.  The wobbling in my legs is more pronounced when I am nervous (e.g. looking into even a shallow canyon with no clean line; or standing at a start line thinking about looking into a shallow canyon with no clean line).  For some reason, waiting for today’s start felt like I was being led to the executioner.  So, my legs were vibrating before I even heard "go".

The Cat 3 smackdown was a four-mile loop, two laps.  At the end of the first climb, I was second among the old farts.  This was the high water mark for my race.  During the ensuing descent, the following went by me: almost everyone else in Cat 3.  Oh, and a dead chipmunk.  Mason Calvert was among the parade of happy people who had to make their way around me.  Mason is 10.  His bike is a very small.  My bike is very big, probably weighs half what Mason’s weighs, and cost more than a year of law school at Virginia in the mid-1980s.  Mason went by like a comet (“way to go,Schneebs!” echoing through the trees as Mase disappeared in a cloud of dust).

The second lap started with another climb.  By now I was third among the geezers, but that was of no consequence.  Nope, I was playing "Are You Faster Than a Fifth-Grader?" Answer: No.  While I  did get past him on the climb (with a light shoulder check and a head butt), Mason went by me . . . again . . .  like I was standing still not long after the trail turned down.  Near the end of the race, I dropped to fourth in the grand daddy division.  Then the dead chipmunk went by one more time.  At the finish, my legs were wobbling wildly, my head was heavy (I didn't wear my head holder upper today), and my arms were wiped out; but, as retired wide receivers-turned football commentators often say, I maintained "verticality” today.  The rugged Sandia course and the mostly dirt road Leadville course are different enough to be considered different sports.  With Leadville as the goal, verticality today had to be a win.

Damian Calvert is a man with a joyful Cali swag if there ever was one.  He also has a charismatic quality that, in another day, would have caused unarmed men to follow him to battle in the Alamo after Generalissimo Antonio Miguel de Santa Ana owned the joint.  Today, the mountain biking community learned about Damian as a friend.

Before presenting the race awards, Damian delivered a speech about our family’s journey over the past year.  It was also about the journey we have taken as friends.  I’ve sat here, staring at my computer for over a half hour, trying to figure it out how to describe what Damian said and what it meant to our family.  It is not going well.  We laughed; we cried; we hurled.  As I wrote a few days ago, when one of us has it, we all have ALS.  If you ever have the chance, do not resist the urge to join Damian's flotilla.

Day 10, August 3, 2011.  King of the Mountain was the first and is the best mountain bike trail I have ever ridden.  It winds a shocking 8 miles all over the Sandia Peak ski area in Albuquerque, with a net elevation gain of only about 1500 feet.  It rambles up, down, over rocks and short drops, through heavy forest and wide open ski runs.  When your lungs are about to pop, it gives you down hill, but then scares the crap out of you, so you are happy to be climbing again.  Mike Archibeck (a/k/a "Doug's Bi#@%"), Chris Dineen, Damian Calvert, Justin Laue and I gathered up this morning, drove to Cedar Crest, and headed out to the ski area on our bikes. 

Back in the day, it was a massive struggle to keep up with some of these guys, and I never could keep up with Damian (Justin was about 12 back in that day).  On the pavement, we all stayed roughly together.  The boys, sipping on coffee, chatting and working on needle point projects, seemed comfortable. Meanwhile, I was: wearing a mask of pain; deep inside the misery cave; in a spot of bother; soaked in discomfort; and watching the pirates board my ship.  Mercifully, right as my heart rate monitor began smoking, we arrived at the ski area parking lot. 

One short but very long year ago, it would have been reasonable for me to ride the entire King with this group, but, recognizing I would be a gigantic pant load on the gang, I rode only part of the King -- the part that will serve as the cat 3 course on Saturday.  Even that is a difficult roll for a guy who can curl 3 pounds. After I finished, I sat on the ski deck, watching hail bounce off the planks, thinking how lucky I am to still be able to spend a morning that way. I was also grateful I was not out there (like my friends) getting pummeled by hail stones.

When I'm training for Leadville, I'm always grateful we live at altitude.  How do those people from below sea level prepare?  Click here  My stepmom, Char Schneebeck says "go deep or go home."

Day 11, August 2, 2011.  Grief.  Does there come a time when enough is enough?  For a year, every day has included some measure of green thing (“green thing" is what my speech recognition device thought I was saying when I said “grieving”; let's just go with that, hmmkay?).  If I had just been run down by a San Francisco streetcar on July 28, 2010, there would certainly have been some snickering, but probably also some green thing.  By now, the green thing would probably be a thing of the past for most everyone who knew me, and I certainly wouldn't be participating in in any green thing.  Should there be a lifetime cap on green thing for any one of us?

I realize that part of what happens is ALS takes a piece of a life at a time.  So, you grieve the loss of your fingers in February; the loss of your shoulders in April; the loss of drool control in October; and so on.  But still...

At some point, can we just decide the time for green thing has expired and really make every day a full-on celebration? Sounds challenging, but we have time to practice. Well, we will after Jeff Novitsky decides whether Lance Armstrong doped.

Good topic for a survey:

 



Days 15-12, July 30-August 1, 2011.  My apologies -- I was so focused on the debt ceiling I forgot to write.

ALS sucks.  Yesterday, a young athleta named Nicole introduced herself to me at the bike shop.  She has been following this blog, and told me, with difficulty showing in her eyes, her father has ALS.  In only two years, he has gone all the way to a wheelchair and ventilator.  ALS is a crappy, cruel, mean and nasty disease.  I have to remind myself that, while nothing feels slow about my progression, my experience has been a party compared to what ALS does to so many people in such a short time.

A year ago, I was experiencing debilitating fatigue, and I had lost over 50% of my chest and arm strength in only four months.  My heart rate and metabolism were all jacked up by a combination of the disease and the magical drug that extends life by two months.  On August 3, 2010, I told the law firm, by e-mail, about my diagnosis.  On August 6, 2010, I had an oral argument in the New Mexico Supreme Court.  I elected to tell the court to dispel any question about whether I had popped into a bar on my way to a 10 a.m. hearing.  A day before Leadville, I got an e-mail one of my partners who knows Leadville very well.  The e-mail said only:

Ride. Enjoy. Hurt. Finish. Remember.

Kick ass Doug.

Jason C. Bousliman

One word, "remember", stuck in my head throughout the day on Friday and every moment during the race.  The truth is, when I heaved my foot over my bike to wait for the start, I felt quite certain Leadville 2010 would be my last.  I was lucky.  My fitness was good, and I could back off the effort and still complete the race before the final cut.  The absence of suffering allowed me to remember all day.  The beauty of the mountains, the dizzying hypoxia at 12,000 feet, the noise of the crowds and cowbells at the rest areas, our massive crew fueling me with milk, smoothies, food and chain lube at every rest stop, and even the guy passing out hot dogs and PBR at the foot of the climb to Columbine.

While my chances of finishing are markedly worse next week, I am grateful beyond measure to have had an opportunity for a one year victory lap.  I am going to tape Nicole’s father’s name to my bike frame. That will help me remember.

"Nicole's Dad" will have to do until I see Nicole again and learn her Dad's actual name.

Day 16, July 29, 2011.  You know how people sometimes say "we’re pregnant"?  That often made me chuckle until we had our first child.  Parenting begins with pregnancy and never goes very well if only one person is involved.  Another thing about parenting is that, as time goes by, more and more of your time is devoted to being a parent.

At the beginning, it requires little more than buying stuff, painting a room and keeping your wife away from alcohol, tobacco, firearms and crack for nine consecutive months.  Next comes the eating-sleeping-pooping phase, which is punctuated by frequent, hours-long naps. Right after that, the soccer games start getting longer and farther away. And so it goes right up until that time after college graduation when your wife tells her to do her “thank you” notes before she leaves for a party, and she says “no” and gets in her car anyway, and rolls your arm up in the window when you reach in for the keys and drives away with you jogging next to her because, well, she has your arm. After that, your job responsibilities begin to decline.

I rambled a bit there, n’est pas? Here’s where I was going with that.  Yesterday, Jean sent an email to family listing things she’s learned in the year since the diagnosis. Things like: there is a best way to help someone else put on socks – a way that lifts everyone’s spirits, but makes the kids go “eeeewwww. . .” (shame on you; it's not that).

She got me thinking about what I’ve learned.  Many things come to mind, but the big one is, like pregnancy, “WE have ALS”.  It affects us differently (not all of us get to slobber with a good excuse), but we all have it.  Our family; our friends; our colleagues; our communities.  As long as it’s around, we all have the POS.  On a micro level, I should do something about that every day.  People  throw parties and buy burritos and beer for me. The whole family, though, is suffering more than Dougie.  Tonight I;m going to spring for burgers and beer for the whole family.  And flowers for Jean. I’ll need  to wear socks when I head out . . .

Day 17, July 28, 2010.  One year ago today, a nice man with a bow tie told us I have ALS.  In the year since we sat, disoriented and grasping for hope, in a bar sipping on beers and munching on home made deep fried buttered fat balls, we have learned to accept this as the end of the beginning.  We have not, however, embraced ALS as the beginning of the end.  We still have lots of important living, laughing and loving to do.

In November 1989, one of my partners woke up on a Saturday morning, grabbed a tennis racket, slipped on some oil in his garage, whacked his head and was gone.  That could still happen to me, but nothing could take away how our family has lived the last year.  Adrenaline junkies find the highest intensity of joy in living from doing stupid s@!# that should kill them (and/or their friends).  I feel like we’ve gotten the same rush without having to jump a snowmobile off the MGM Grand, through a tower of flames and to relative safety on an 8oz tub of cottage cheese.

I’m only going to say this once on account of because it’s a secret. If my current experiment works, I’ll go from this to this, or, if things go really well, this, by morning.  I’m taking a new drug; it’s called “Placebo”.  Shhhhhhh . . .

Days 20-18, July 25-27, 2011.  My melon continues to get heavier. With any ride over two hours I begin to look like I am on a roller coaster that has just begun to go up after a high speed descent.  My head hangs low, and I struggle to avoid having to look right through my skull to see what is ahead of me.

My mom, Abby, my sister in law, Maureen, and I went to work on this problem last night. The end product is a redneck-engineered suspender that performs the dual functions of keeping both my shorts and head up.

 

Step 1: Ventilate the cap. Do not use Yankees cap.*                        Step 2: Attach bungee to belt and cap.

 

Step 3: Add standard melon bucket.                                            Time trial bars.

*The Yankees suck.

In the last picture you can also see a pair of time trial bars Jimmy added for me. The black pads are arm rests that will allow me two additional postures.  We will have to do some modification after we get them dialed in because they are not exactly permitted in and mountain bike racing.  Also other racers would make fun of me for being so clearly “roadie” in my approach to Leadville.

Today I rode around the mountain for the third and final time in preparation for Leadville.  Here is how it went by the numbers:

 

Mile point

Today

5/26/11

5/3/11

6/23/10

18.4 (Bernalillo)

1:04

1:03

1:01

1:04

27.7 (end of pavement on Las Huertas Road)

1:57

1:50

1:46

1:45

35.0 (top of Las Huertas Road)

3:23

3:07

2:52

2:52

61.2 (home)

5:00

4:39

4:20

4:19

 

 

 

 

 

The trend is not good, but that is the nature of my situation.  The noggin keeper-upper worked well until I tried to adjust it, at which point the entire contraption fell apart.  I did not climb strongly at all.  At one point on the climb to the ski area, I sat down at the side of the road, and I think I fell asleep. 

Part of my difficulty was nutrition.  When I crave milk I know I'm not getting enough food.  That was the case very early.  When I came off the mountain in Cedar Crest, I stopped at a gas station and drank nearly a half gallon of milk.  Unfortunately, I did that at a table in the Subway-type deli before I realized I had no money.  I now have a credit account the manager has not approved, which is to say I have to go back to Cedar Crest this weekend to pay for my milk.

A local judge resigned yesterday after being charged with attempted rape of a prostitute (think about that one) and something having to do with child pornography.  A former president of the University of New Mexico was recently charged with being an internet pimp (“Papa ‘Burque” is apparently his moniker).  We all have our crosses to bear.  I'll take option “C”, the one I have, thank you.

Days 22 and 21, July 23 and 24, 2011.  Frazer Mountain Madness!  I loved this race before I ever participated.  The start line is in the parking lot at Taos Ski Valley (9800 feet above sea level), and the race goes up 2300 feet to the finish at the summit of Frazer Mountain (12,100 feet).  All that happens over the course of 5.4 miles.  The average gradient is over 10%, with a maximum of bit over 24%.  When you stand atop Frazer Mountain, truly have a "top of the world" view.  There is nothing like this in mountain biking, except for the highest point at Leadville, but that doesn't count because you are so hypoxic every rock, mound, hill or mountain looks like a bag of vipers.

Our race preparation was impeccable.  We rolled into the parking lot just in time to pick up my number and push the bike to the start line.  No warm-up.  None.  This came back to bite me.

Somewhere around 3 miles into the race,  there is a climb of about 150 m up a 20% gradient, rutted "road" with loose rock everywhere.  I have ridden the race four times, and made it up this section clean twice.  Today, I was about half way up the climb, struggling to stay on board the bike, when I heard a bike approaching from behind.  Due to the fact this was a mountain bike race, not a road race, I was obligated to do what I could to allow the overtaking rider to pass by.  I took a quick look over my shoulder and, to my horror, discovered the overtaking rider was a woman pushing her bike up the hill.  After a bit of quick math, I determined that she was walking faster than I was riding.  Thus dispirited, I joined the very small parade of hikers.

I lumbered across the finish line 12 minutes off my prior slowest time for this course.  My best assessment of the day is my pure mountain biking power and fitness is about 15% lower than one year ago.  Frankly, I don't believe I have much of a buffer for Leadville.  I'm afraid that puts me in the "unlikely to finish, but likely to give it a go anyway" category for Leadville. 

Am I trying to seed a field of reduced expectations for Leadville?  No, I am trying to be realistic so I am not disappointed with anything short of a big silver belt buckle.

On Saturday, I documented where I stand in the weight room.  I am about to begin a medical experiment I probably should not describe in specific detail, and I need a clear definition of "Point A".  I can curl three pounds with my left arm.  This means I need to use to two hands to:

  • lift a 5 pound bag of sugar; or
  • lift a 4 pound bag of sugar, or
  • lift a 3-1/2 pound bag of sugar

The same holds true for bags of flour, salt, and, if you can believe it, feathers.

If I were to make a list of things I have done in the last week I shouldn't be able to do, Frazer Mountain would sit at the top.  Leadville is so far over the rim I can't explain.  The only thing that makes Leadville feasible is that I will have a Sherpa/domestique/b*&ch helping me in Leadville.  Dr. Archibeck, who will ride Leadville with me, will be doing much more than merely applying re-applying my anti-chafe cream.  More on this soon.

When we got back home, we went to drop off baseball tickets for some friends and found a surprise was in progress at their house.  The biggest surprise about the party was it was to celebrate my birthday.  The surprise was enhanced by the fact it was not my birthday.  Our friend Jim Chynoweth had taken some liberties with the lyrics of the theme song from "Family Guy", and led the singing.  Our daughter Jessa did most of the planning for this party at Kim and John Blueher’s house.  It was another in a long line of parties Jean has hosted at Kim's house.

Days 24 and 23, July 21 and 22, 2011.  I’ve received a few emails asking for the punch line to this:

Q:  How many neurologists does it take to screw in a light bulb?

A: Six.

I thought it was obvious, so now I feel bad because I have to explain my riddle.  I think I’m so dad-gummed funny that this sort of thing really puts me in my place.  Here you go:

Q:  How many neurologists does it take to screw in a light bulb?

A: Six.  One to screw it in, and give an opinion about how long it will last; five to stand around watching until it burns out.

This is a bit harsh on neurologists (but pretty funny, don't you think?).  The point is about the state of neuroscience not the competence of neurologists.  They have only so much to work with, and do the best they can in what must be a highly frustrating context.  Imagine your career as an auto mechanic specializing in mufflers, and no one on earth knows how to fix a muffler.  You can't wait to get dressed and go to work, huh?

We wrapped up our trial on Friday.  Everyone was very patient with my limitations, but it was clear it is time to move on.  A trial moves quickly, and while my brain can keep up, too many thoughts are trapped in my head until the moment has passed.  For an example, it is common practice for co-counsel to whisper, pass notes, etc., during testimony.  I can't be reliably understood whispering.  It takes forever to write a legible note.  That left us with a laptop to type notes.  As I am slow and less accurate on the keyboard these days, that was not a completely satisfactory approach.  It also carries the risk of memorializing an inappropriate wise crack.

Days 30-25, July 15-20, 2011.  Daddy-Daughter Weekend.  Three of Abby’s friends’ dads planned a weekend in L.A., and asked us to join them.  Dinner on the water, weirdness at Venice Beach, shopping (i.e. beer for dads), LA Galaxy vs. Rael Madrid (including this sick goal – click here).   Excellent fun.

Jean and Abby helped me relocate my mountain bike shifters and brake levers to give me a fighting chance of making them work when it matters.  On Monday and Tuesday, I rode in Albuquerque’s south foothills.  Tuesday I had the new setup with the brakes and shifters. Big improvement, and I have some helmet cam video to prove it once I figure out how to use The You Tube. 

Q:  How many neurologists does it take to screw in a light bulb?

A: Six.

I went to see my neurologist this week.  Follow-up visits for ALS are not particularly uplifting.  If you have a pain in your neck, you can call your doctor, go see her, and she might write a prescription for an anti-inflammatory, or she might send you to physical therapy. When you leave her office, feel like you are on the road to fixing the problem (i.e. the pain in your neck).  An ALS follow-up goes something like so:

Dr.: Is anything worse?

ALS Boy: Yes.  Everything that was a problem last time I saw you is worse.

Dr.: [One raised eyebrow]  Anything new?

ALS Boy: Yes.  Blah, blah, blah. . .

From there, the doctor performs in interview intended to come up with an “FRS” is score.  A "normal" score is 48.  A score of zero is apparently very bad.  In July 2010, when I was diagnosed, my score was 46.  Yesterday it was 39.  An "average" ALS patient loses one point per month.  It is kind of an ultimate hourglass.  When you leave, you still have the pain in the neck(i.e. ALS). I am lucky in that my neurologist is kind, compassionate and patient.  I know they are not all that way.  In fact, I met one who is not.  His name rhymes with “Mark Berger”.  He was probably just having a bad day.

If you can believe it, I am trying a case today and tomorrow.  Aside from the predictable melancholy of it being my last trial, there is an element of disorientation in the fact Captain Brent is one of the opposing parties.  Indeed, I will be cross-examining him in about three hours.  I expect the key exchange between us to go like this:

Me: Mrgbumphst?

Captain Brent: Huh? 

Days 32 and 31, July 13 and 14,  2011.  It’s been a few days since my most recent head injury, so I did this:

  Remarkably, I stayed upright, even on the dismount from the most expensive gag gift I've ever received.

Next up: a household accident. The details are far too humiliating, so I’ll leave it at this: an article of apparel traditionally worn about waist-high wound up ankle-high.  I went down, as usual receiving little in the way of help from my arms.  I skidded on my chest, but my head did NOT hit the floor!

Today I went to the office. This did not go so well. I had an early meeting and a 4:00 deposition. After the meeting, I sat down to plow through some paper and woke up 2-1/2 hours later.

Day 33, July 12, 2011.  When lightning closes the chair lift in Angel Fire, the mountain is perfect for a cross-country rider (unless the lightning is a harbinger of rain). I rode a big figure 8 across the front of the mountain – home to the base, to the summit and back home.  Two hours and I saw two humans, neither of whom was smoking toward me on a big DH bike with devil-horse skeletons emblazoned on his helmet. Nope, these guys were walking.  One of them is the multi-talented Director of Angel Fire’s Bike Park, Hogan Koesis.

I’m difficult to understand sitting on a couch. When I rolled up to Hogan, I was deep into the meat of a relentless climb, which is to say “wheezing”. The conversation was a complete failure:

  • Hogan: Hey Doug.
  • Me: Mrgbnuff [“Hey, man, how ya doin? See much lightning out here?”]
  • Hogan: [Silent trout look]
  • Me: Mrgbnuff [“Hey, man, how ya doin? See much lightning out here?”]
  • Hogan: [Silent trout look]
  • Me:  Line-t-niiin? [“lightning”]
  • Hogan: Yeah, and the rest of the loop will be open by August.

And so it went. Hogan was talking about a new trail called “Enlightenment”; I was trying to figure out whether it was a death folly to be riding among tall trees/lightning magnets.

The ride was better. At the summit, I sat on the lift looking down on the valley, celebrating my mastery of the universe.  Then, the buzzkill – descending back to the start.  I have more work to do on the bike. In particular, the placement of the brake levers needs attention to increase my leverage so I don’t have to think of bushes as brakes.

Days 35 and 34, July 10 and 11, 2011.  The hydraulic seat post is on its way (see July 6)!  Good thing, because I definitely need the help.  My biceps are testing at 10% and 15% of their pre-ALS strength.  And they weren’t that impressive before.

A bit of ALS advice someone gave us was to make adaptations before you need them.  I’m not so good at this because an irrationally optimistic part of my brain expects me to recover from this like a pulled hamstring.  Today I almost paid a price for persisting in wearing ALS patient-proof blue jeans if you follow me.  Time for more Velcro.

Tomorrow I should get a nice Leadville ride under my belt.  I’m in Angel Fire as the chaperone for Jimmy and six of his friends.  Something in this paragraph is a good reason to wear a helmet.

Days 37 and 36, July 8 and 9, 2011.  In 2010, ALS received its most recent general news media attention with the release of research suggesting head injuries may cause ALS.  I have a different take. Let’s review:

 July 26, 1960-July 27, 2010:

  • Stuffed lion to the head; stitches. 1963
  • Rock to the head; stitches. 1970
  • Baseball to the head. 1972
  • Defensive linemen to the head. 1975-77
  • Mountain bike crash to the head. 2009

July 28, 2010: ALS diagnosis.

  • Mountain bike crash to the head. September 2010
  • Mountain bike crash to the head. March 2011
  • Mountain bike crash to the head. April 2011
  • Mountain bike crash to the head. May 27, 2011
  • Escalator to the head.  June 4, 2011.
  • Bike tumble to the head. June 4, 2011
  • Tandem crash to the head. June 10, 2011
  • Mountain bike crash to the head. June 25, 2011
  • Mountain bike crash to the head. June 25, 2011; and finally . .
  • Falling over near mountain bike to the head. July 8, 2011

Based on this data, we hypothesize ALS causes head injuries, not the other way around. All we need now is some placebo and a grant from Merck.

So here’s how I went down.  Long ride – 27 laps around Kevin and Lynn’s lake – on a beautiful Illinois summer afternoon.  As I rolled back to the garage, I was feeling pretty large.  The ride data showed me only about 10% off a nearly identical ride from a year ago.  I clipped out of my pedals and put my left foot down.  As I lifted my right foot over the top tube, I lost my balance and fell backward, Husqvarna-style.  The sound in my head when my helmet hits rock is becoming too familiar.  It’s the same sound you hear when Coach Dennis Randolph whacks your football helmet with his clipboard after you fumble.  At practice . . .  Not that I hold a grudge.

So there I was, flat on my back in the gravel, staring up at the sky.  I wiggled around a bit and concluded I could not get up.  Arm strength was the primary issue.  I could hear Kevin working in the yard within earshot, but for some reason it was important to me just then to figure this out  on my own.  So I slithered backward (yes, across the gravel) to a pair of mulch bags, up the bags, sat up and stood up.  Another adventure.

Peoria was great; Lynn and other Bannons put about 8 pounds back on me; and we’re on our way home.

Day 38, July 7, 2011.  I’m taking a new medicine.  It’s called “placebo . . .”  This Steve Martin bit sets up our WTH topic for the day. Why The Heck does every ALS drug study have a placebo group, typically 50%?  Here’s how it works.  People with filing cabinets to store their graduate degrees decide a particular medication may work.  More frequently than not, it’s a drug already available, so they subtract a water molecule and give it a new but similar name like “Preparation 1-H”.

Next, a press release: “Clinical Trial of Preparation 1-H Opens at Dook University”. They ask people with ALS to sign up, fly (at their own expense) to come see them and take the drug OR placebo.  Then, using state of the art scientific techniques, they keep track of how fast people in the Prep 1-H group die as compared to the placebo group.

Finally, they write a long report describing their findings.  To save valuable time they refer to the study participants as “PALS” (i.e. people with ALS, and, no, I’m not kidding), and “succumbed” in lieu of vague words like “died”.

If you ask why the placebo group is a must, the answer is a calmly exasperated “scientific method”.  We have to know how PALS do without the drug to know whether the drug works.  News flash: we already know what happens to PALS without the drug . . .  And there’s scientific method to back it up.  Meta-analysis is the study of existing data from a number of studies to come to valid conclusions without more studies.  Why use meta in lieu of a placebo group?

  1. The outcome measures are always the same (strength, lung function and survival), so prior data is transferrable.
  2. The sample size would be huge and therefore more accurate.
  3. More people would participate, and they would all get the study drug, so the drug results would also be more accurate.
  4. It would be more ethical than giving a sugar pill to someone who is dying.
  5. If Duke figures this out, they will get lots of money, some of which can be used to do something about Coach Mike Krzyzewski’s hair.

I’m just sayin’ . . .

Day 39, July 6, 2011.  The search for gadgets continues. While I was circling the lake on Kevin’s bike (new tires) today, I found myself thinking about seat post height.  Roughly speaking, while riding on a flat trail, a mountain biker’s hands and butt are level with one another.  As a descending grade increases, the saddle rises relative to the bars, and the risk of going over the bars increases at the same time because the rider’s center of mass is moving up and forward.  The point of no return comes when “x” is greater than 1 in this formula: , although some physicists believe substituting pi for theta is a more accurate predictor.

In any event, you can withstand a more severe descent by moving your weight back on the bike, which I can no longer do while descending because the square root of my arm strength is less than my butt’s weight.

An alternative or companion strategy to moving back on the bike is to move your weight lower (i.e. lower the saddle height).  This can be done, but requires getting off the bike each time the trail turns up or down.  In a race I just wouldn’t bother, which means – in Leadville terms – I’d wind up spitting bloody fragments of teeth out at some point.

Enter, the gadget. A handle bar-mounted lever that triggers a hydraulic mechanism to raise or lower the saddle.  Oh yeah.

Days 41 and 40, July 4 and 5, 2011.  Welcome to Fat Camp!  I lost track of about eight pounds in France, and the Bannons are intent on finding them for me.  Banana bread, rhubarb bread, pasta, eggs, butter, more banana bread.  A truly heroic effort being led by Lynn Bannon.

Fourth of July on the Illinois River.  They advertised an air show, and an air show we got.  Millions of mayflies filled the sky, obscured the view and abducted suckling infants from their mothers’ breasts.  Stir in fireworks, badly amped music, a riot in the ‘hood and a can of Pringle’s, and you just want to enlist to go fight the Germans.  But then you remember you are German, the moment passes and you look desperately for a fresh can of Off.

The 5th brought another mechanical-shortened bike ride, and also brought the end of the road to Kevin’s 1988 tires and tubes.

Day 42, July 3, 2011.  21 years ago, before the stuff I put in her drink wore off, Jean said “I do.”  Don’t blink.

Today, after food, Le Tour de France and a nap, I borrowed Kevin’s sturdy rigid MTB and rode laps around Lake Santa Fe.  I did not get chilly.

Can you . . .

  •  . . .  lift 50 pounds?
  •  . . . brush your hair?
  • . . . shave?
  • . . . field dress a  buffalo?
  •  . . .  turn the key in the ignition?
  • . . . safely operate a fork?

Near the top of the Top Ten Reasons ALS Sucks List is the fact the answers keep changing, and always for the worse.  It makes planning difficult, and makes promising ultrahazardous.  This week I discovered I’m not very stable standing on a bike – even a mountain bike. Can you ride Leadville?  You mean today . . . ?  Six weeks is a long time from now when I’m not certain I’ll be able to wipe my . . .  nose tomorrow.

I think the next blog should be “Four or Five Days to [something a bit easier]”.

Days 44 and 43, July 1 and 2, 2011.  If someone or something determines the daily fate of cyclists, I’d like to have a moment of his/her/its time.  I had an adequate gap of time for a ride before packing to go to Peoria, so I went out for a city loop. About a mile from the top of the Tramway climb, my bike made the sort of sound a car makes at 60 mph if your girlfriend gets mad and shoves the shifter into reverse.  You know, to help make a point.  Then the rear wheel locked and I skidded to a stop.  Everything that spins, slides or makes a whirring sound at the back of the bike was tied in a knot.

Happily, two of my teammates, Dan Kelly and Mike Slattery (each of whom has at least two working hands) happened along within a few minutes and got the bike into shape to coast back down the hill a few miles where I could have a Coke and wait for Jessa to pick me up.  Then off to Peoria.

Our first day at Kevin and Lynn’s cabin I slept essentially all day except when I was eating.

Days 46 and 45, June 28-30, 2011.  Three difficult days.  When we crashed in France, my left shoulder took its fourth significant hit in the last two years.  With the loss of strengths from my arms, recovering from even a minor injury is a challenge.  Tuesday and Thursday I spent time in the weight room working to regain range of motion. Wednesday, I rode 30 with local racing legend Tom Niemczyk.  I had the sewing machine/wobbly leg syndrome during the ride.  Also, my head felt like it weighed 50 pounds, and I was hungry and dehydrated.  After I got home, I had regular cramping in my feet, calves, hamstrings and even my hands.  Aside from that, I felt like poo for three hours before I recovered. 

I am developing a backup plan in case I come to the conclusion that it would be foolhardy (more so than for a normal person) to start Leadville.  I have enjoyed the idea of her retiring from mountain bike racing after Leadville.  Aside from challenges that have nothing to do with me (like weather), I see two primary obstacles at Leadville: distance and descending.  I could opt to call it a wrap after a July 24 race in Taos. No problem with distance (5 miles); and no descending (the race starts at 9800 feet in the Taos Ski Valley parking lot, and climbs to the top of Frazer Mountain, finishing at 12,500 feet.  With a mountain top finish, I could just leave my bike up there and walk down with Jean.  Sounds kind of romantic assuming the forest service doesn’t figure out who left the bike. 

Even that plan has its problems, as nearly all of New Mexico is on fire, and it is quite likely access to Frazer will be prohibited by the time of that race.

Am I whimpering?  I think so.  Tomorrow is a brand new day, and I get to go to Peoria.  In July.  I am looking forward to being with family, but I'm also looking forward to the humidity.  It has been so dry in New Mexico that it takes 10 minutes in the shower before you even get wet.

Days 48 and 47, June 26-27, 2011.  Sunday – recovery ride. A very bad idea, as it turned out. Monday – hike with Jeannie. A much better idea.

Things I’m thinking “hmmm” about after the weekend:

  • What was I thinking when I signed up for Leadville?
  • How do you thank so many people for pitching in to make Oso High a success?
  • Does Cameron Brenneman have three lungs?
  • Why does your dog get all bent out of shape if you blow on his nose, and yet he sticks his snout out the window at 80 mph?

Days 51-49, June  23-25, 2011.  Oso High! Thursday and Friday were all about race prep. Jimmy, our pseudo-son, Clayton and I marked the course Thursday and we prepared for racer check-in Friday.  Special kudos to friends who came from afar: law school pals Tom Miller and Kim Tucker; one of Jean’s two sisters named “Mary” (this one goes by “Peggy” to keep the risk of confusion low); and Dawn Bradley Berry and Tony Koepic, who drove from Cali.

Registration went off without a hitch Friday night and Saturday  morning, then it was “game on” right at 9:00 as planned. Race highlights included:

  • Cameron Brenneman delivered a “who dat?” performance, mopping up the Pro/Cat 1 field by over 8 minutes. Check this out: Jean “It was my Understanding There Would be no Math” Bannon over paid him by $30 and Cameron returned the extra booty.  I was so touched by this show of integrity I redirected the doping control people to Randy McDonald who won Cat Dude.
  • Matt Patton climbed to the top step of the men’s 40 Cat 2 podium to chants of “UPGRADE . . .UPGRADE”.
  • Keith Bone and Cheryl Holloway took top places in the singlespeed categories, proving something none of the rest of us quite understood.
  • Damian Calvert declared the performances of the ALS boys – me and John Dunbar – worthy of a separate category designated “Cat Dude, Are You OK?” I earned my stripes by giving up the lead I had on Cat3 after the climb by going over my bars twice and opting to walk a lot during the descent.  Richard, thanks for picking up my Garmin, my speedometer and my sorry ass from the dirt! I’ll let Dunbar tell you his story.
  • To spice things up, USAC slapped a pair of riders with DQ’s after Bro No.1 called Bro No.2 a @##$% and Bro No. 2 expressed his view that Bro No.1 is “the son of a motherless goat” or something like that.
  • Sierra Nevada gave us a keg and General Mills gave us 425,000 Nature Valley bars for the party after.

   

 

 

Days 55-52, June 19-22, 2011.  We got off the bike in Maurienne, took a train to Geneva, locked up the bike, picked up a car and drove to Chamonix. Mont Blanc is the highest peak in Europe, and it casts a massive shadow over Chamonix and surrounding towns. To drive around Mont Blanc you spend time in France, Switzerland and Italy.  It’s big.  Chamonix bills itself as the World Capital of mountaineering, downhill mountain biking, extreme skiing and knee surgery. It’s a very young community boasting an average life expectancy for males of nearly 15 years. According to French television, Mont Blanc’s glaciers are receding  because of emissions from buses that bring Asian tourists to see the monolith.  As the glacial hairline retreats, the ice gives up artifacts centuries old such as Jimmy Hoffa.

With only 48 hours to spend in this outdoor adventure playground, we hopped right out of bed shortly before noon Sunday.  We spent the remainder of the day sipping on drinks at an outdoor café working the iPad on amazon.com trying to find French scarves so we wouldn’t have to shop.

Monday was filled with shocking scenery. We hiked high in the mountains across the valley from Mont Blanc. With the help of a gondola, the entire hike was above treeline, which meant we could see very far. I had a couple of ALS mishaps (falls) caused by the fact my arms aren’t strong enough to catch me if I stumble.  The second time, I found myself off the side of the trail sliding down a skree fall.  Fortunately, Jean screamed loudly, causing me to stop sliding, and causing French forces to launch drones into Italy and Switzerland. We spent 15 minutes at point blank range with two long-horned ibex, which would look cool over the fireplace. The ibex were unlike elk in that they weigh about two tons less and,at the first sight of humans, they don’t sprint off into the woods screaming like little girls.  Otherwise, they are the same as elk.

   

 

The final shock of scenery came as we strolled back to our Geneva hotel . We ran across a series of storefronts with women in the windows sprawled on couches in various stages of undress.  They didn’t even bother with German or French to avoid scaring the kids; one window read: “SEX WITH LIVE GIRLS”.

Thusly reassured, we dug out our passports for the trip home.

Arguably random reflections on France:

  1. I am married to my best friend, the most amazing woman anywhere.
  2. It would be very easy to take over Italy.
  3. If you go to a catholic mass in France, don’t expect to understand many of the words if you don’t speak French.
  4. Sleeping in a castle is cool.
  5. French cows have it pretty cush.
  6. As Jean said, “it was magic and perfect and wonderful  except for that part where you tried to kill me”.

Days 61-56, June 13-18, 2011.      So, did ALS cause the crash? Jean wondered, and you may wonder. Answer: not directly. A combination of circumstances, including the fact I have ALS, put us on  that steep & crappy road at that moment. So, in that " but for " sense, ALS was involved. The legal cause however, was testosterone.  

In all, we spent 4 nights at Alpe d'Huez. The hotel, service, food, and spa were better than we deserved, thanks to our hosts Emmanuel, Tebo & Julien. Genepi: the first one's free. First concocted by men of the high alps, and now introduced to Jean by the men of the high alps. Thanks a lot, Emmanuel. The hiking on our third day, above Col du Sarenne, was like nothing we have ever seen before. We plan to learn how to use The You Tube so we can show you a 360 degree view we enjoyed, that included glaciers, high alpine peaks, waterfalls, farms, 2000 foot sheer granite cliffs, wildflowers, Sound of Music rolling hillsides, and a trail made by a goat with a bad attitude.

 

 

We left Alpe d'Huez to go back to Briancon for another couple days at Chez Bear with our new friends Matthew & Helen. We arrived in Briancon at the end of our longest day on the bike, climbing 5,000 feet in 50 miles, including the Col de Lautaret. Along the way, we stopped for lunch under the massive La Mieje  glacier at La Grave. This is where mountaineers and ice climbers go every summer to kill themselves.

During our visit in Briancon Helen & Matthew treated us to fantastic food, wine & company, and took us over the Col du Mozzarella into Italy, where they use another bunch of different words for everything. However, we learned that, in a pinch, if you add and "o" to any word spoken in both French and English, you stand about a 95% chance of being understood, e.g., "pizza" , "pizza" and "pizza."

Having seen quite enough of the Col du Lauteret, Matthew saved us a day and spared us the equally long uphill ride back over the col and dropped us off for our last day on the bike beginning near Bourg d'Oisans. We had been assured by three different weather services that e clouds we were seeing during the drive were going to lift, revealing the sun and a crystal blue sky. "Temps du merde" apparently translates to "clearing skies." Within twenty minutes after we began the long climb to the Col de la Croix de Fer, the rain started and never quit until 3 1/2 hours later as we reached the col. Early in the trip, I described Jean as " homicidal" when riding in the rain. "Genocidal" is  perhaps, a better word. However, it does not describe Jean during the deluge. She was a ray of sunshine in the otherwise black sky, making friends and bringing laughter to everyone at every rest stop. For example, Jean created a frenzy in a bar at the Col du Glandon when she held up a dripping wet 100 euro bill & said in perfect French "St. Jean de Maurienne; me only, not this asshole." As we write this blog while on the train to Geneva, Jean has confessed she was making an effort to thumb a ride from the back of the bike.

The weather suddenly cleared when we reached Col de la Croix de Fer at about 6 pm, giving us unimaginable views of the mountains and canyons over the 18 miles from the col to Maurienne.
Le Petit Tour de France II ended in Maurienne after 292 miles up or down, 35,000 feet of climbing and 8 miles on the flat.

 


Days 65-63, June 10-12, 2011.  A momentary lapse of reason. It happened descending the Col de Way too Freakin' Steep to go 20 Miles per Hour on a Heavily-loaded Tandem. Our speed got ahead of our brakes coming into a hairpin corner, which we handled fine, but we came out of the curve desperately needing to slow down. I knew our goose was cooked when I saw "14.5%" painted on the road. At that point the focus shifted from how to slow down to finding the best place to crash.  The most attractive option turned out to be heading straight for an embankment bordering the next right hand corner, and then turning the bike sideways before we hit the embankment in order to deliver an impact that was not head on and not into rock. We indeed hit the embankment, and the bike flipped and ejected both of us. The apparent damage included muscle injuries, sprains, abrasions, cuts, a tacoed front wheel, a badly out of true rear wheel, and blood. See photos.

 

   

 


Remarkably, 22 hours later, we were in Alpe d'Huez (as scheduled), with a fully repaired bike and bodies on the mend. This happened because: 1) Claude, who stopped within minutes after the accident, called 15 (which means "911" in French);  2) when the paramedics unreasonably refused to take the tandem in the ambulance, Claude insisted on taking to his home nearby for safekeeping and to his neighbors and laugh about Americans; 3) we got fabulous, and apparently free, medical care at the hospital in La Mure; 4) the nurse who shaved my head also called a cab for us and got us a hotel at 10pm; 5) the cabdriver who appeared showed up in a full-sized van, which is is as common in France as great Asian food; 6) Eyan, the cab driver, agreed to and then did pick us up from the hotel the next morning and drove us to Bourg d'Oisans, where we should have arrived by tandem the night before (see photo); 7) in Bourg d'Oisans, the Jean Charles, the only bike mechanic in town, repaired out rear wheel, front & rear shifters, front & rear brakes, luggage rack, & chain rings and replaced our front wheel, all in about 3 hours (see photo); 8) while Jean Charles worked his magic, back at the cab, Eyan was patiently waiting to drive us up Alpe d'Huez.

 


Even more amazing was that Jean got back on the bike with the guy who almost killed her (but who apparently acted as a human airbag for her). The very next morning (today).

We picked the route for today's "honey I am SO sorry," ride at the recommendation of three Brits who we might have otherwise called " our new friends." Brian, Justin and Nigel organize charity outdoor adventure events. They were at Alpe D'Huez preparing for an event next month, as well as making a mockery of the King's English. They refer to the reconnaissance mission as a "reckie." They suggested we ride UP from the Alpe to the Col de Sarenne, continuing a big loop that would finish with the famous tour de France climb to Alpe d'Huez. They had not, however, done a reckie of this route, and this morning they aborted their attempt at the route after only a few minutes because the condition of the road was so awful. They came back to the hotel and left a note with the manager to give to us, warning us against riding Sarenne. Of the many things we are grateful for today, perhaps # 1 is the manager forgot to give us the note. The ride was beautiful beyond description, and the road was awful beyond description, and we believe it may be the most beautiful place we have ever been.  See photo.

 

Tonight we had dinner then shared wine and swapped manly stories with the boys.

Bike dudes: Team Rabobank is at our hotel! Photos to follow!



Day 66, June 9, 2011.  The  reason you've never heard of col de Moissiere is because it's too narrow for the team vehicles and too steep for the riders of the tour de France.We found sustained stretches today over 15%, with one pitch reaching 25 %. Today's ride totaled 43miles & 5400 feet of climbing. I fueled my part of the ride with a French fry sandwich for lunch. Jean is holding up like the hammerhead she is; I've been fine except for a bit of neck fatigue today.

 

Tomorrow we follow part of the route Napoleon used to sneak back from exile. Napoleon had donuts and a horse.

Day 67, June 8, 2011. Old churches, people selling stuff in a public square, sandwiches with ham & cheese and a $ 17 loaf of raisin bread that  had better be good. What I absolutely can't forget to write about today happened three days ago. We were halfway up our first major climb on day 1 when I found my right foot was no longer attached to my pedal. We stopped and discovered that the spring that makes the whole pedal work, and without which the pedal is a frictionless polished metal rod, had broken.  We thought through our options which were very limited. It was already after 5pm on Saturday and France is not open on Sunday or Monday. Not to mention we had a mountain to finish climbing before we could eat dinner.

The only repair material we had was a small spool of thin wire. Jean's handiwork is pictured here. It may look like the pedal got tangled up with a long blade of grass but her weaving held up for 2 days of riding and nearly 6,000 feet of climbing, including Galibier. Not wanting to push our luck, however, when France re-opened on Tuesday, we bought a new pair of French made pedals.

Our stay at the castle (chateau) has been magical, up to & including a ghost sighting by Jean. The ghost was hanging up in a conference room our first night at the castle when Jean tried to photograph her. When we looked for her in the same room the second night she was in our room stealing Jean's phone. Check this place out: chateaupicomtal.fr

Days 69 and 68, June 6 & 7, 2011. "We are so happy to be here." Wherever "here" is, apparently. We have not seen the sun since Saturday, but we almost couldn't pry ourselves away from Briancon. The final straw was nearly Chef Matthew's "Pierre Chaud" (lliterally, "hot Peter.") We have no idea where this disgusting name came from, but it was a 5 hour meat fest, capped off with sinful desserts and a liter of milk.

Earlier, we treated ourselves to a French bathhouse which, among other virtues, requires men to wear olive hammocks, grape smugglers, budgie smugglers, root suits, or, mercifully, high school cheerleader training shorts.  See photo.

Today we got off to an early start at 12:30 and arrived in Crots at about 5.

We are happy to be here, too. Ever own a fixer-upper? Jacques & Sharon picked up this 14th century castle for a song. It's the kind of place you would expect to go for a guided tour. Tomorrow, we will, but tonight we are sleeping in the Louis XVI bedroom, which has everything you would expect except the plague.

Today we put in 43 miles and 2700 feet of climbing. In the rain. Most New Mexicans are not big on riding in the rain. Jean gets homicidal, and today we managed to enjoy homeostatic equilibrium despite a persistent drizzle the entire ride.

Tomorrow we will attend the beheading after breakfast and then go explore Embrun.

Day70, June 5, 2011.  "Let's just make a decision now. " " No,let's make a decision in 15 minutes - finish your beer."

We went to bed last night and woke up this morning to a driving rainstorm. At about 10am this morning, the weather cleared  enough to lure me into packing my bag. Jean, I had to beg. Remember that getting  my ALS-ridden ass onto a bike is a bit of an undertaking. Jean helped with or did almost everything, including stealing lunch food from the breakfast buffet.  

The climb of the Col du Galibier begins at our hotel's driveway, ending 11 miles and 4,000 vertical feet later. We made it 0.75 miles and 139 vertical feet before the rain returned. We double backed to our hotel, drank a coke and a beer and discussed the pros and cons of our options. ( see above.) The sky partially cleared at 1pm, so we discussed our options some more. A bit after after 130 we headed up the mountain. If you ever have the opportunity to pick 2 French mountain  passes to climb, trust us,  climb Galibier twice. The photo is one of dozens of wholly inadequate shots we took during the day. 

 

At the summit we met a couple from Australia who had done the same stop & go and stop & go assault on Galibier. However, with a foggy, snowy, windy and frigid descent to come, they were undoubtedly less comfortable tonight in their campsite.

We stayed in a lovely guest home owned by Jean's twin sister of a different mother. Our plans for tomorrow include taking a bath.

Days 74-71, June1-4, 2011.  When you hang 32 pounds of stuff on the back of a bike that is 6 feet long and weighs 35 pounds, and you hold onto the front handlebars only,  and you tilt the bike more than about 5degrees, the weight in the back will lift the front end off the ground and the bike will come down sideways like a mousetrap. So says Newtons Law ofPhysics #2. This principle, law, actually, played a big part in our first day on the bike.

A lovely dinner last night in Geneva after our "business time" class flight did not prepare us for moments of chaos that awaited.

When we arrived at the Geneve train station, we elected to save a few grunts by taking the bike up the escalator. It didn't go quite like we had planned. As I rolled the bike on, I failed to have it stop moving. Once the bike pointed upward,  it began to roll backwards.  Another Newtonian postulate should have warned me this could happen. Instead, I stepped back in a vain attempt to stop the bike and got my foot behind Jean's pedal which then acted like a big hook, pulling me backwards,head first, down the escalator. This happened in slow motion, giving Jean, who was uphill, time to yell "#%{!?€%". As I hit the steps of the escalator (feet uphill now) what is left of my right bicep wedged between the left pedal crank and the frame of the bike. This is not a wide space. Quite small. My arm doesn't really fit in that small space. Amazingly, all the German and French and Swiss speaking people around us began yelling things in English. They also began understanding things in English, including "Stop the escalator!"

 

Our mood, by the time we reached our train, was similar to the night Tim Holm, wearing a paper bag on his head, stood on the railing at University Stadium, as the Lobos gave up the 48th point in a football game, chanting enthusiastically, "BLOCK THAT KICK!" A mob of angry Lobos fans attacked, leaving us no option but to leap onto the sidelines and run for it, exiting the stadium at the then-giant score boardless north end of the field. By the time we reached Tim's apartment we had stopped running, but not for long.  The rehash was more terrifying than the moment. That's what happened today.

Bloody but not beaten, we rolled out of Saint Jean de Maurienne at about 3:15. The ride was roughly like riding to the top of Sandia Peak (without any flat spots and steeper), and then riding back to town by way of the La Luz trail. At one point, while crossing the rocky remnants of an avalanche, Jean paused to take a picture, and Newton 2 put me on the ground under the bike. Bloodier, but not beaten, we limped into Valloire  shortly after midnight  (in Tokyo.) So, that's Day 1, reputed to be one of our easier days. 18 Miles, 3,800 feet of vertical climbing, and a mile and a half hike-a-bike on a surface more heinous than anything that's ever been part of the Leadville 100. 3 hours. The biggest high five moment of the day was reaching the top of the Col d'Albanne without actually tipping over  from lack of momentum. Tomorrow, we might ride Galibier to Briancon. Given the weather forecast, Jean is tapping away on her phone, hoping to find a cab. For tomorrow, what I'm hoping for is someone else to stand next to the bike when Jean isn't with me.

Days 75 and 74, May30 and 31, 2011.  Now, that’s more like it.  Today, I rode around the mountain again, solo.  My splits and the overall time were roughly the same as my ride on Friday with Captain Brent.  This time, however, I  felt great the entire ride, despite a nasty headwind that managed to pummel me for 270 degrees of the course, and I didn’t have the sewing machine leg problem during the descent from the ski area.  The difference was clearly nutrition.  Today I took in well over 1000 calories during the ride, including pizza.  Also, importantly, I replaced electrolytes every half hour. And I drank 70 ounces of water. So, that was all good.  The only creepy aspect of today’s ride was I dropped over 5% of my body weight during the ride.  That is a bright line “no no” in endurance sports.  At the Leadville 100 mile run, racers are weighed at several check points, and not allowed to continue if they have given up over 5%. My body told me as much by demanding milk in ridiculous quantities after the ride.  I have downed over 1 gallon since I returned, and would have more if I weren’t worried about  the consequences.

ALS increases caloric demand for any activity.  It’s one thing to know that, but quite another to figure out how to deal with that problem.  It is not easy to eat and drink the fuel necessary for a normal body.  At some point, the body says “no, thank you”; at another point, the body says “no, damn it”.  Right after “no, damn it”, the body may refuse to take any more, if you know what I mean.  This happened to me near the half way point in 2008 (boiled potatoes, if you must know).  Mike may wind up making repeat supply runs to Krispy Kreme. 

So, here we are, in Albuquerque, which is not the same thing as France, now, is it?  Jean heard me dictate that, and said “for a few, Haskell” (raw voice recognition interpretation).

Day 76, May 29, 2011.  France will have to wait.  I am not at liberty to say why, but we have to delay our early Monday morning departure until Thursday.  I promised not to disclose the reason, but here’s a multiple choice hint.  It’s possible one of these might be something similar to what actually happened. I’m not saying one of these did happen; I’m just saying it’s hypothetically possible:

___ a) Our connecting flight through Mombassa has been canceled.

___ b) American Airlines loaned its bike roof rack to United.

___ c) France is closed for Memorial Day Week.

___ d) As it turns out, the World did end last Saturday.

___ e) Jean had passport photos taken last summer, but forgot to mail in the renewal application.

Days 78 and 77, May 27 and 28,  2011.Make appointment to see Bill [my chiropractor]” has been on my “to do” list for weeks. My neck has been very stiff when I turned to the left. Today I was in Angel Fire laying out the course for the Oso High Mountain Bike Race. I was doing loops of various lengths looking for the right combination of this and that to make the pros and my mom happy with their respective courses. I got a bit careless on mom’s course, fell right, stuck out a linguini noodle (right arm) to try to break the fall and wound up on my melon. There was a smashing tortilla chips sound that apparently fixed whatever was wrong with my neck. Problem solved!

Confession: I’m fine climbing, but I have no business –none--descending tight singletrack. Some of you who know my riding might say I never did belong on a singletrack descent, and I would call you names but not argue. I keep coming back to Buddha: “suffering comes from resisting what is.”  One thing that is is I am a mountain safety hazard and I otherwise suck descending.  If I eat right, get plenty or sleep and train right, my arms will be weaker and I will be suckier still in a month.  Sooo . . . hammer uphill, then find a different way down, si? Problem solved.

Last summer Jimmy and I bought a real downhill bike to share. It’s essentially a motorcycle with no motor.  We brought Jimmy’s friend Clayton with us, and the boys rode up the chairlift and down the mountain all day. What a great way to be a kid for the day. Well, except for the moment when Clayton crashed and sheared off his rear derailleur. Or that other moment when he was crossing a single-wide log bridge and then he wasn’t anymore. Otherwise a great day.

 


 

Day 79, May 26, 2011.  Ouch.  Today Captain Brent and I rode around the mountain.  The numbers appear below, but the real story is like so: I have had some training days where it occurred to me Leadville will be a difficult day; but today it occurred to me there is a cognitive component to my ALS if I think I can do this.  We have occasional bad days on our bikes, and it's true, I was underfed and dehydrated, but the really creepy thing was how poorly my neck, shoulders and arms performed.

 

Mile point

Today

5/3/11

6/23/10

18.4 (Bernalillo)

1:03

1:01

1:04

27.7 (end of pavement on Las Huertas Road)

1:50

1:46

1:45

35.0 (top of Las Huertas Road)

3:07

2:52

2:52

61.2 (home)

4:39

4:20

4:19

 

Note to self: call Jean if you are out on a long training ride for a lot longer than you told her to expect.

Another note to self: Leave much more of a time buffer between your rides and any court appearances. The very patient judge won't think it's funny if he learns why you were late.

Days 81 and 80, May 24 and 25, 2011.  Tonight was the night I threw out the first pitch for the Albuquerque game against Colorado Springs.  I trained hard for the moment.  I spent about a half hour yesterday in the park across the street throwing a baseball at a picnic table from about 15 feet away.  I tried left handed, knowing that, even if it hurt, it would only hurt for a minute.  This did not work.  So, I spent most of the time trying to develop a credible right handed delivery.  This also did not work so well, but it was clearly the only option.

As of yesterday, the plan (which I understood to have been approved by the Isotopes) was for me to throw the ball about 15 feet to Jimmy, and for him to relay the ball to the catcher.  When we arrived at the park, we learned that plan was inconsistent with how the Isotopes roll.  There were actually two first pitches.  The first was hurled by a woman who stood confidently at the base of the pitcher’s mound and delivered a laser with only one hop to the plate.  We then moved toward the plate for my throw. A very long walk.  I was close enough to the catcher there should be powder residue on his mitt.  We're talking close.  Point blank range.  If I had reached out, I probably could have just dropped the ball into his glove.  It was more like a handoff than a throw.  I could have spit the ball to his glove.  Close.  Thankfully, the ball made a satisfying "thump" when it hit the glove.  At the scoreboard, the speed reading was "—“, which I think means faster than the guns will record.

Tim had organized and paid for a group of 125 people from the firm to show up for the game. My partner Max Madrid, who is battling liver cancer, attended. Jean’s office also came along.  In that way, the whole evening was a bit overwhelming, especially focused around my 15 foot toss of a ball. 

      

Tomorrow is another trip around the mountain!

Day 82, May 23, 2011.  Pinpoint Prison.  I was supposed to have a big hearing this morning, so I needed to wear a suit.  We have some shirts Jean had modified for me so they look like they are buttoned, but they are actually closed with Velcro.  The white one is at the cleaner’s, so we had to get me into a real shirt with a real tie. Jean, Jessa and I worked on this project for about 15 minutes. I really wanted to get by without buttoning the top button because I knew I’d get home to an empty house and not be able to unbutton. Unfortunately, the quality of the knot was inferior so, with the top button undone, I looked like Otis the Mayberry town drunk.  Top button buttoned, key thrown away.

When I returned home from the hearing, the plan was for me to go lift weights; however, as expected, I was trapped in my crisp, white pinpoint Oxford . With my tie removed and my top button buttoned, I looked like Monk (the OCD TV detective).  So I crawled in bed as-is for what turned out to be a three hour nap.  Appropriate rest is a critical part of a Leadville training plan. 

Very  good Leadville news.  The wonderful people at Leadville have agreed to a rules exception that will allow my friend Mike Archibeck is to ride the entire race with me.  This will be a big deal for peace of mind for our family and crew.  In addition to providing moral support, Mike will be like my personal St. Bernard, and if I happen to require a hip replacement, Mike can take care of that on the course. One possible catch: Race organizers are currently insisting we enter Mike's name as "Doug's B!%@$".  I will continue to lobby for "Mike Archibeck"; but failing that, hopefully they will agree to "Doug's Sherpa" or "Doug's Domestique".

Remember that joke where a guy frees a genie from a bottle, makes a wish (which I can't repeat here), and his legs fall off? See the May 24 feature at http://awareness.als.mda.org/

Day 83, May 22, 2011.  I joined Chris Dineen this morning for City loop he called a "recovery ride".  To me it felt like "stage 2 of a two day stage race".  The rest of the day is reserved for France planning and a nap.

Days 85 and 84, May 20 and 21, 2011.  Every bike race has a story.  Today was (supposed to be) 50 miles.  The first leg was directly south for 16 miles to a turnaround and then right back to where we started.  The wind was nuking from our right and slightly behind us as we rolled south.  I didn't anticipate anything dramatic in the first half hour, so I didn't really warm up before the start.  Bad call.  Less than a minute after "go", there was a significant acceleration that I completely missed.  A gap developed in front of the rider in front of me.  I should have popped around him immediately, but I didn't take the move seriously.  The wind cut a canyon between the front group and everyone else.  I grouped up with two guys, then four, then five, and we began to try to repair the damage.  The level of effort was ridiculous.  Although the slightly helping crosswind had us ripping along at about 30 mph, the wind was so strong from our right we were getting battered no matter the position we maintained within the group.  At about 10 minutes into the race, the lead official was waiting roadside to tell us the lead group was 55 seconds ahead.  He may as well have said "boy, do you guys suck!"  There was no way a small chase group would catch the leaders with that much of a gap, huge wind, and so many strong riders in the lead group.  Resigned to our fate, we chugged along, occasionally picking up riders who were falling off the main group.  I continued working at a very high level of effort, the equivalent of what I might do it in a 30 minute criterium. 

When we made the turn at 16 miles, we were a group of four.  I met Mark Forsythe in a race about a year ago.  We were in a six man breakaway, and I instantly recognized him as a teammate because we were wearing exactly the same clothes!  Neither of us are Chatty Cathys when racing.  In the course of about 27 miles riding within ten feet of each other, I said "hey, I'm Doug".  Mark said even less: "I’m Mark".  So, our group of four at the turnaround was me, Mark, and two guys I don't know.  For ease of reference, I will refer to them as Bill and Ted.

After the turn, we found ourselves bashing into the crosswind, now coming from in front and to our left.  To maintain balance, we leaned our bikes into the wind.  It became instantly clear to me I had a choice to make:  (1) Continue at this level of effort and bail when we returned to the start line. This would mean I would race only 32 miles, recording my first ever DNF; or (2) back off of bit so I could complete the race.  In a race with less wind, it is possible to back off but remain with your group simply by taking less time or no time on the front.  That would not be possible bucking this wind for 24 miles before turning back to the finish.  So, my choice boiled down to riding alone and finishing, or riding hard with the group and being cooked at 32 miles.  I didn’t want to be lonely, so I cast my lot with the group.

It had been clear to me for a number of miles that Bill and Ted were stronger than me, possibly stronger than Mark.  Emerson wrote "there is  strength in the union of even the sorriest of men".  This is true in road bike racing.  Bill and Ted, apparently, did not read Emerson (neither did I, but I heard he wrote that).  Very soon after the turn, Bill and Ted accelerated.  Mark stayed with me either because we are teammates and therefore homies, or because he couldn't match the move.  Either way I now had a problem.  If I dropped out at 32 miles, I would be abandoning a teammate, which just ain't right; but I would be virtually useless to Mark over the longer course.  So, I needed to figure out a way to get Mark hooked back up with Bill and Ted.  Bill and Ted, however, were pulling away steadily.  Also, I was operating over 90% of my maximum level of effort.  I let Mark take the brunt of the wind to see whether I could recover enough to make an effort to close the gap.  This did not work.  I was still getting smacked around by the wind, I was slobbering and hacking and working very hard. 

After what seemed like a full day, I looked ahead and saw Bill had dropped Ted.  I began taking short, lame turns in the wind to try to help close the gap.  Eventually I was able to take a couple of long-ish pulls, and Ted was probably slowing down as a result of and being all by himself.  We caught Ted about 3 miles before we reached the start line, which left me free to give up.  When I pulled off the road, Mark yelled back, encouraging me to stay with them: "it's not that far!"  Mark didn't understand that, at this point, my car, 100 meters away, was "far".

So, I got in a good solid workout.  My heart rate average was higher than it has ever been for a race longer than 40 minutes.  I also got Jack-slapped by the field to the point I was willing to swallow a DNF.  On the other hand, I raced my bike today. That's a win.

Day 86, May 19, 2010.  Set It and Forget It.  One of my favorite workouts .  It’s the biking equivalent of a sensory deprivation chamber.  I go to the room where spin cycle classes are held at the gym. When I show up, no one is in the room. I find a bike in a back corner, fire up my iPod, lay towels all around in case my skin begins to glow, and spin up to a comfy zone 3 heart rate.  Then I just keep it there for an hour or two.  There are variations on the workout, but the concept is similar on all varieties.  I focus on the music or nothing at all. I close my eyes and drop to my forearms on the towels I have draped over the bars.  I sit up with my eyes closed and hands at my sides and imagine my weight lifting off the saddle so only my cleats are touching the bike and my feet are moving in clean circles. No traffic lights, no texting/blow drying/changing the iPod when Taylor Swift comes on teenagers, no 85 year-olds looking in the mirror at the bus stop they just plowed through, no truck drivers pissing into Mason jars while opening another Red Bull, no rocks, no ruts, no loose sand, no drill bits, glass or goatheads. My hands are minor bit players on a spin bike, so not even any ALS. Nothing but Meat Loaf warbling in my skull and a steady hum of the bike. If I'm lucky, Jean shows up for her spin class at some point, and in a way that would be creepy if she weren't my wife, I watch her ride. Actually, it's probably creepy even though she is my wife.

One thing can foul this bliss.  It comes in a few different shapes, sizes and genders, but for ease of reference, we’ll call it “Roy”. If Roy is the instructor for a class that starts during my workout, Roy may (1) ask me to remove my iPod because it’s “disrespectful” (I’m not making this up) to not listen to its "music" (e.g. Peter Frampton); (2) walk up to me after its sound system mike is on and ask “What? Are? You? Doing?”; or (3) make not very subtle cracks during class about how all the benefit of spin comes from doing something I am not doing. The Roys are Roadies.  The Roys were not there tonight. Ahhhhh . . .

Days 88 and 87, May 17 and 18, 2011. Paul Mohr is the sort of guy who could hop on a sailboat for the very first time, blindfolded, and figure out how to make it go.  He is a ski area, biker, kayaker, physical therapist and inventor.  He holds two patents.  Anything he doesn't know how to do, he can figure out how to do.  He is The 4 Wheel Drive of Humans. 

When I sleep, my hands clench into very tight fists.  When I awaken, I look like I am heading to a bar fight.  Well, it may be more accurate to say I look like I have been in a bar fight.  In any event, my hands are clenched and stiff.  It takes quite a while to loosen them up in the morning.  I told Paul about this, and he stopped by tonight with a bag full of inventor things.  An hour and a half later, he left me with the first prototype of a custom-fitted splint to wear at night that should keep my hands from curling up.

  Serial No. 0001 attached to the hand and wrist of Skeletor. 

I think it will work; however, I will have to keep in mind it will have hazards akin to sleeping with a bread knife duct  taped to my hand.  A semi-conscious itchy nose or loving pat on Jean’s back could take us to the ER.

After our crest ride Monday, I have taken two days off the bike and away from the weight room.  My naps are getting longer and cutting into ride time.  This week, I have had two hour naps every day.  I'm not saying that’s a bad thing, but I do have a job.  Tomorrow will be a big ride.  I don't know which bike yet; I think I will let them fight over me.

By the way, 73.08% of you want the helmet cam on my noggin. Consider it done.

Day 89, May 16, 2011.  Bad week for bike crashes.  A pro bike racer was killed in a high speed downhill crash last weekend.  One of our teammates suffered massive injuries in a local race Wednesday. The next day, one cyclist was killed and another critically injured in separate traffic incidents here in ABQ. No one elbowed any of these folk to let them know they were about to buy the farm. I continue to marvel at the charity of ALS in this way.  Ten months ago, Life tapped me on the shoulder and told me I should begin shopping for the farm.

What a blessing.  Everything looks different when you live in The Zone.  Today, for example, Jean and I rode Sandia Crest on the tandem.  3800 vertical feet of climbing in 13.5 miles.  Mile-for-mile, that’s nearly twice as steep as Leadville; steeper than the roads in Colorado that have runaway truck ramps; as steep as a Sarah Palin learning curve on . . . well, anything.  It’s easy to enjoy having done this ride; but difficult to enjoy this ride while it’s happening.  Sort of like cow tipping. If you don’t get gored, broken bones or shot, it’s great fun at the pizza joint after. At least, that’s how I would imagine it goes.

Even gargling phlegm and fighting a headwind, today’s ride was joy. We were eight minutes slower than four  years ago, and seven minutes slower than last year. So what? That’s as fast as we go.  Downhill was a bit creepy. Not “oh, &%^8! We’re going to die” creepy, but unsettling. When coasting, my sewing machine leg kicked in hard enough to make the whole bike vibrate as if we had a paint mixer on board.  Brisk reflexes are one of the very subjective signs of ALS. That, plus some cold or a heightened sense of danger (e.g. hairpin, decreasing radius turns)appeared to be the trigger.  I’ll stuff hand warmers in my shorts and punch up Santana on the iPod before we descend Col de Whatever in France.

Days 91 and 90, May 14 and 15, 2011.  “It would be great if he ran a bit faster, but that’s how fast he can go.” That was our friend Lisa Henry after one of her son’s athletes finished the anchor leg of a relay at the State Track Meet Saturday. My law school friend Mark Carver had a similar comment relating to the third amigo, Tom Power’s lament about his recent ten mile road race.  I’m trying to apply this wisdom to my visits to the weight room. No point fretting about my inability to lift seven plates, when all I can lift is two – that’s how strong I am.  I’ll let you know when I nail that one.  For now, I’ll say this about lifting weights (using my unedited voice recognition software): Felt tree martian, eye hath elepant waist. Says it all.

Day 92, May 13, 2011. 92 days to Leadville? How about 17 days to France? Jean and I leave with the tandem on May 30. Fly to Geneva for an overnight when we’ll put the bike together, then train to St.-Jean de Maurienne, where we will begin a 12-day loop through the central Alps. Oh yeah.

Things to worry about: none. Things to think about: hands; arms; brakes (a route with 30,000 feet of climbing will also have 30,000 feet of descending); French (need to brush up on phrases such as “is this urine specimen the only beer you serve?” Don’t go to the Caribbean for the fish; don’t go to France for the beer).

12 days to baseball.  In connection with a fundraiser, I’m throwing out the first pitch at a minor league game on May 25. I’m closer to ready for France and Leadville.  Here’s the problem: I’m losing range of motion in my shoulders – worse in my left, and I am not right-handed. As of last night, I can throw about 15 feet. Home plate is 60. I may have to rent a t-shirt cannon.

Day 93, May 12, 2011.  Silver linings.  Mark Carver, Tom Power and I were classmates at Virginia.  Tom is a high-powered communications lawyer in D.C. Mark owns real estate law in Nashville.  Mark’s law school softball team was The Baby Stompers. His wife and three daughters do not know this. Tom and I played for Apocalypse Mao. Our float for the 1985 Tournament of Dandelions Parade: a ’71 Ford Maverick painted camo with a ceiling fan mounted upside down on the roof so it looked like a helicopter. We’re all in Albuquerque this weekend. Mark is a track & field athlete, so we went to the UNM track today for his workout. Mark is a better lawyer than long jumper, but his 800 is on par with his knowledge of the law of easements. Speaking of par, Tom and Mark are golfing tomorrow. I swung a club in the backyard today and then went next door to retrieve it.  Need to work on my grip. So, silver linings: a visit from good friends; and (at last) a good excuse for being a lawyer who can’t golf.

Day 94, May 11, 2011.  Imagine waking up every day and finding each of the following a bit more difficult but not impossible to do or deal with: talk; remove a shirt; turn on the shower; pump the shampoo; reach your arm pits with the soap; grip the razor; push the “go” button on the shaving cream; grip and operate the towel; open and pour the milk; drink the milk; split the English muffin; butter it; chew it; swallow it; hold the toothbrush; squeeze the toothpaste; apply deodorant; brush your hair; pull up your pants; zip; button; reach around your back to grab and pull the belt; type; and something entirely new; . . . O.K., that’s 7:00 a.m. and I’ve left out a few things (think “Cornholio” if you need a hint for another category of challenges).

No big deal, right? OK, now imagine having your husband, wife, mother, father, son or daughter wake up to that every day. And imagine knowing your loved one and your responsibilities will get worse until all that person can do is move his or her eyes. 

Difficult, but doable, si? Now imagine being a person in the first paragraph who doesn’t have someone in the second paragraph to help.

Still holding up? Now imagine being Donald Trump at the White House Press Dinner when President Obama played his “official birth video”, a scene from Lion King.  Now that would suck.

How do we look past the expanding swamp of daily inconveniences and care for our caregivers while we can? What happens to people who have no caregivers? What was that thing on The Donald’s head?

Days 96 and 95, May 9 and 10, 2011.  We took the tandem to Durango to ride on Monday before returning to ABQ. Last week I worked my pathetic fingers to the bone (doesn’t really take much) so we’d have a shiny, squeak-free steed that would well please the Nature People of Durango. One problem: rain on Monday. Two consequences: no ride; and the bike got coated in rainy road spunk on the way home.

After two days of recovery following Mesa Verde, the wind redirected me to the power meter on the bike in the gym today (for background on power, clicka aqui). Roadies, listen up: two 20 minute intervals averaging 258 and 253 watts, respectively.  Again, these numbers are essentially meaningless to me because I have no baseline.  Well, I guess I do now.  So, here’s the description for the rest of us.  You’ve seen people on the bikes in the cardio room.  The guy over there is wearing basketball shorts and picked the bike because it’s located behind a very specific woman on an elliptical machine.  He’s been there 15 minutes and has yet to hit the “power” button.  The woman to my right is texting, talking on the cell and reading People magazine, all at the same time.  Her hair is perfect.  I most resemble . . . neither of them. Nope, I am call-the-manager nasty.

Ten minutes in, my clothing is soaked, and I can feel sweat in my shoes. By that, I don’t mean dampness; I mean a stream. My face is bright pink, my hair is wild, I have placed a towel on the floor to prevent pooling, and I have a towel on the handle bars, directly under my chin. The reason for this is my facial skin is less sensitive and sometimes I don’t feel the drool until it has reached has reached a point of no return. Allowing one of those to hit the floor would be unfathomably vile and could not be remedied. I’m sure the overall picture, coupled with the sound of me breathing near red line, while continually trying to clear my throat of things that paused to rest on their way up or down, was not pretty. I found, however, that I was far less offended by myself when I closed my eyes and turned up my iPod. I doubt that worked as well for my neighbors.  When I completed my workout, I got up from the bike, knelt down on the floor, pretending to gather my keys, wallet, and iPod, but I really was quietly calling for my mother. I retrieved three towels to clean the bike under the watchful eyes of the people using the bikes on either side of me. Neither appeared impressed with my work, but I felt proud I didn’t accidentally drizzle off a wet elbow onto one of their copies of Breakfast With Buddha.  As if I needed more reasons to ride outside.

Days 98 and 97, May 7 and 8, 2011.  The Race.  12 Hours of Mesa Verde starts at a fairground outside Cortez, Colorado.  800 racers, some competing solo, others in teams up to four.  At the start the soloists and first relay riders park their bikes near the sheep barn and run about 400 meters, past the goat pen and the swine shack, pick up their bikes, and off they go.  Roadies wander among the parked bikes releasing air from others' tires before the start.  The course passes under Hwy. 160 and into a trail system called “Phil’s World”.  Phil was, apparently, a very sick man.  Where the trail could easily pass beneath pines along a smooth, packed surface, or along a cliffside across cracked granite with rock drops, ba-bump, ba-bump, ba-bump, and a million-foot freefall awaiting anyone who veers a bit left.  If, on the other hand, you have two serviceable hands and huevos poquito grande, it would be reasonable to describe it like so: “Disneyland for grown-ups”, which is exactly how one of my teammates, Rob Pease, described it when he completed his first lap.  My immediate reaction was different: “75% fun; 25% sheer terror.” 16 mile course, with the relay exchange in a barn. Badasses popped laps at an hour and a half or faster. Team ALS Sucks.  Brent Lesley, Rob Pease, Jeff Dorwart and me. The other guys are accomplished dirties with about 15 Leadville finishes between them.  Brent declared himself team captain, which is how we nearly missed the start.  Jeff’s wife, Heather, spent the entire mind-numbing day with us. 

     

Team A.L.S. Sucks. Doug, Jeff. Captain (and self-proclaimed MVP), Brent, Rob.

Brent shoved Jeff under the sign that was Brent's designated spot.

 

The Actual Race.  Rob had not expected to lead off.  But ten minutes before the start no one was making a move for a bike, and Captain Brent was providing no leadership whatsoever, so Rob ate breakfast (coffee) and hit the trail.  Lap 1 was sizzling.  As Brent put it, “wow, I thought Roadie would be in by now; I hope he’s OK out there”. Unlike Brent, I thought Rob was actually impressive, coming in at about 1:45 including a slightly longer start lap and dealing with heavy opening lap traffic. Jeff dropped an hour and a half lap, while Brent and I tossed coins, drew straws and otherwise talked out who would go third. Captain Brent. I went third.  I stayed upright.  Brent was patiently waiting for me 2:15 later.  Off in a cloud of dust.  Moments later the phone rang.  Brent’s bike was out of service and he was heading back. Brent took my shoes, my bike, declined my shorts, and headed out (in another cloud of dust) for about 1:40. And so it went until about 7:00 p.m.

Inside The Melon. I walked a two-dimensional tightrope.  We all do – too far forward, you’re over the bars; too far back, you lose control; too far left or right, you can jack knife the fork a la Socorro. That’s mountain biking, but we have room for error because we are strong. My margin, however, is quite narrow, which frayed the nerves a bit. During my first lap, I found myself saying (out loud) “what am I doing here?” But not the whole lap.  In fact, even impaired, more than half the course was world class fun.  I wanted to do another lap after seeing the course on the first, but the math had us finishing only seven.  So, mid-afternoon, with Rob on course and Jeff on deck, I hopped back on the Fly and rode a second lap.  It was way more fun and faster. I even enjoyed some split-second panoramas of the San Juans when I dared disengage from the course. Then, at the section called the “Rib Cage”, a dramatic roller coaster in and out of a series of arroyos, I found the G’s making it difficult to hold my head up. This continued and progressed for the last few miles. A very odd sensation – found myself straining my eyes to look up while my head dipped toward the bars, inviting me to gnaw on the carbon.  As I rolled back into the parking lot (skipping the barn since I was riding bandit at this point), I realized how much the course had taken from me during the day. Before I started the second lap, I knew it would be the last time I would attempt such a punishing course, and that made the ride even more sweet.  It’s like I’m on life’s bell lap. Some people don’t hear a bell; I’m lucky that way -- hoprfully this will be a long lap! Apparently, I did a nice job burning lap 2 into my memory. Afterward, I was talking with Heather. When I leaned back in my chair and closed my eyes, I had a motion sense (like after you get off a boat) and pictured the rolling, twisting course in extreme detail.  Same when I went to bed last night.  Today I had three naps totaling 5-1/2 hours.

Durango.  Abby and her team raised over $2700 for ALSA.  We are so proud of them. Today, the team wore jerseys printed with “Bite Back at ALS”.  They didn’t score as many goals as they hoped, but that’s not the point, is it? Happy Mother’s Day!

Days 100 and 99, May 5 & 6, 2011.  “Dude, wake up – you’re on!”  What’s with the bike race dreams?  I can’t rationally be nervous about competing, on account of because I’m not fast.  If I’m nervous, it would have to be the kind of nervous you might get before walking a tightrope over a viper pit.  I. Just. Want. To. Stay. Upright.  Last night, I dreamed I was napping between laps at a relay mountain bike race in Tahiti.  A very large dark man with a French accent was standing over me holding my mountain bike in one fist, and a fish in the other.  The fish was wearing a necklace, and our team’s timing chip was the pendant.

I’m just speculating here, but I may have 12 Hours of Mesa Verde seeping into my sleep.  I’m writing as we drive to Durango.  In the morning I’m meeting friends near Cortez, Colorado for a 12 hour MTB relay event.  “Team ALS Sucks”. Part of the problem is I’ve never ridden Mesa Verde, and one of my teammates (click here) said of the course “there are some rock drops”. . . I’ve poked a fair amount of fun at roadies, but here’s the truth, and I’ll deny it if you repeat this – I’m a roadie who has learned one mountain bike trick –riding moderately-technical uphill. Last year at Leadville, I rode the Columbine climb clean.  If you are a regular Joe and you know Leadville, right about now, you bow and do the “I’m not worthy” thing toward your computer.  It wasn't pretty, and I wasn't always going faster than the people who were walking, plus I had several of the luckiest moments of my life on two wheels.  Also, and let’s just say I had conserved my energy for Columbine.  It would have been impressive (and impossible) if I had pulled that stunt while on a sub-9 pace, but I slithered to the base of Columbine, munching pizza, at a pace nearly two hours off my 2009 pace.  However, even before ALS, when a trail turned downhill, fuzz on my legs was the only thing separating me from a whining “hold-your-line-take-a-pull-let’s-work-tooogetherrr-everyone” roadie.  Now that the eTrade baby can kick my ass arm-wrestling, I could find myself walking down parts of Columbine this August, humming “Edelweiss”. 

So, armed with the confidence of a five-foot tall high jumper. . . Dude, wake up.

Day 101, May 4, 2011.  “If I’d known I was going to die young, I wouldn’t have wasted time taking such good care of myself.”  Sort of an inverted corollary to a famous George Burns quote. I really have followed the manufacturer’s recommendations on maintenance fairly well (except diet, but that’s part of the reason I have kept fit – so I could eat anything and everything, especially the fried mozzarella). Never smoked or used drugs; didn’t drink a beer until after high school; haven’t gone more than four days without exercise since 1970-something; I’ve weighed 165 +/- 5 pounds since 1976; sleep well; own a dog; wear my seat belt; hold hands in the crosswalk; say “dude” and “bro” a lot (and mean it); love my family more than life itself or apple pie; have regular date nights with my beautiful best friend and wife (Jean is both, which save lots of money and stress); drink my milk; enjoy the nearest mountains; and use sunscreen.

Any wasted time in there? Not a minute, even the workouts. Every stride, pedal stroke or pole plant makes me feel alive.  Always has; always will, and when I can’t anymore, I’ll lie about how good I was and move on.  My favorite law professor, Robert H. Scott, spoke at my law school graduation on the topic of living life well.  He spoke of a retiring professor, saying he had the “obvious inability to imagine doing or being anything other than what he was.” In this way, Bob Scott and Buddha are brothers in thought, although Scott, being a lawyer, used more words.  Buddha’s “suffering comes from resisting what is” really means the same thing.  Whether I’m lucky enough to get old (by my standards; not my kids’) or find myself with an electric (and totally badass) wheelchair in a couple of years, if we can all live the Prof. Scott/Buddha philosophy, this adventure will be one lived well by our family.  If, on the other hand, I become angry and bitter, hopefully I will use fewer MF-bombs than Kid Rock, and keep away from the Jack. Except when the Redskins lose.

22 miles with Jean on a perfect Spring afternoon.  I'd call it a "recovery" ride, except that, after a recovery ride, one is recovered.

Day 102, May 3, 2010.  I'm just sayin' . . . On Sunday night when we learned American forces killed Osama bin Laden, President Obama reminded us the United States can accomplish whatever it sets out to accomplish.  Since 9/11, more than 50,000 Americans have died of ALS.  Imagine what could have been accomplished by ALS scientists during that period of time if we had spent even one half of one percent of what we spent trying to find bin Laden. Just sayin’. 

As I said yesterday, today is a big Leadville training ride.  Time for some dream interpretation.  Between 4:30 a.m. and 6:30 a.m., I dream I was heading out for a long Leadville training ride.  Highlights:

  • Rain
  • Wind
  • No shorts
  • Wrong bike
  • No food
  • Wrong bike again
  • Knee-deep mud
  • No glasses
  • Got lost looking for the course
  • No air in tires and no pump

Hmm.  Time to get the bike ready.  The right bike.

I’m going to call this a “win”.  While I was preparing for the ride, I was as nervous as bin Laden with a red sight laser blinding him (in one eye).  Once I got rolling, I felt good and, for the most part comfortable and strong, the entire ride.  Here is how today’s ride stacks up against same ride on June 23, 2010:

 

Mile point

Today

6/23/10

Notes

18.4 (Bernalillo)

1:01

1:04

Today I had a bit of a tail wind riding solo; in ’10, I had Chris Dineen and Mike Archibeck to share the work.

27.7 (end of pavement on Las Huertas Road)

1:46

1:45

Don’t be fooled – Chris and Mike dropped me like a bad date on the first climb last year, so I was solo both times.

35.0 (top of Las Huertas Road)

2:52

2:52

Last year I felt like Hell at this point, aborted a longer planned ride and went home by myself. Mike and Chris made fun of me for months.  Today I felt great given I’d just climbed over 4,000 feet in 17 miles. I drank a warm bottle of Ensure, which I do NOT recommend if chewing is a reasonable alternative, then headed home.

61.2 (home)

4:20

4:19

Would have gone faster today, but I stopped to breast feed a stray puppy.

 

Quiz: a) Which is the "after" photo?  ___

        b) Which is the recovery drink? ___

        c) Which is the "before'" photo? ___

Hint: The red stuff in the bottle gets consumed during the ride.

Confounding fact: Dog likes taste of sweat.

One more hint:  Glasses have "Transitions" lenses.

Good luck!

Looking only at the chart above, it probably sounds like I'm faking the whole ALS thing.  However, June 23, 2010 and was a miserable day in every way – the kind of day that prompts people to learn how to sell stuff (like an expensive bike) on eBay.  Also, a month earlier, in May, 2010, I rode the same route, but added 12 miles to the crest of the Sandias.  Taking out that 12 miles, I rode the same route as today about a half an hour slower than that day in May 2010. Also, my heart rate today averaged over ten beats per minute faster than in 2010, a consequence of Rilutek, which I didn’t begin popping until July 2010.  I lost 5-1/2 pounds during the ride today, which suggests I underfed myself even though I took in over 1,000 calories during the ride.  Nonetheless, you have to look at this as good news.  Well, I have to look at this as good news anyway.  Leadville is, mile-for-mile, a much more difficult course, what with rocks, ruts, sub-reasonable temps, lightning, bodies and all.  From this ride, I would predict a Leadville time 3 1/2 months from now about an hour and a half slower than in 2010.  That would be in the neighborhood of 11:45, only 15 minutes under the final time cut at 12 hours, leaving very little room for error (e.g., crashing, breaking something, getting snowed on, chilling at aid stations with the best crew on the mountain, or getting into a fist fight with a roadie).

One final observation about today.  Here are the areas where ALS hurt me today in a significant way: Uhhh . . .   I have a long list of minor issues (for example, at one point, I reached up with a very shaky and crooked finger to wipe my nose, and managed to stick my finger so far into my left eye, some pieces of brain that looked kind of important were stuck to my glove),  but nothing huge.  The biggest disappointment of the day: my new team-issue size "medium" arm warmers are too big for my shriveling biceps to hold them up (duct tape?), and even baggy at the wrists.  Whatever -- three more long rides and I'm as good to go as I'm going to get. If I can hang on to the bike on a mountain course, it will be all good! 

Day 103, May 2, 2011.  Tomorrow after I work the morning and take a nap, I’m doing my first Leadville-specific ride of the year.  Locally, the ride is known as "Around the Mountain".  The route can be ridden on a road bike; however, there is a section of over 8 miles of dirt.  I will carry food, water, protein drinks, cheetah blood, and, if I can locate any banned substances in our house, I will take them too.  And if I don't get lost, disoriented, demoralized or dehydrated, and, if I stay on my bike without exception and don’t stop at a bar, the ride is about 60 miles and 4,500 feet of climbing.  I’ve had some very good days on this route, and some very bad days on this route.  Under four and a half hours would be a positive sign for Leadville.  Over four thirty and I should probably check the cancellation policy for the house we have rented in Leadville. Your guess is as good as mine.

Abby's club soccer team is raising money for ALSA as part of its participation in a tournament in Durango this weekend.  They are more than half way to their goal of $2500.  If you want to help them out or see a very cute team photo, click this link:  http://www.osohigh.com/Durango_Shootout_Soccer_Tournament.html

Days 105 and 104, April 30 and May 1, 2011.  Regular season baseball and soccer ended Saturday.  Abby has a post-season tournament in Durango next weekend, and we’re expecting the baseball selection committee to announce tonight whether AHS is in the state tournament.

Yesterday was a day off to rest up for racing in Santa Fe today.  Last year, the weather for the same race was heinous: 35 degrees and snowing big sloppy wet globs of snow sideways.  Happily, this week we had temps in the 70s and lots of sun.  Last night before bed I checked the weather for today and found this:

 

Tomorrow

Snow 70% Likely

 [cute snow icon]

High: 37

Low: 26

High Wind Warning

 

So, here we are.  Not racing.  Feeling inadequate and lame except for the fact that Mike Archibeck (see March 23) cried “uncle” first, with a 5:30 a.m. phone call.  But for that lightly whimpering call, I’d be sitting at the finish line right about now, basking in Cat 2 glory, caked in mud, pale, probably bleeding, definitely shivering uncontrollably and hopefully receiving treatment for hypothermia. 

I do need to give some serious thought to training for Leadville.  The “I have ALS” excuse will not get me up Columbine or across the finish line.  No, I don’t get a free pass on training, dang it.  I’ll start Tuesday.

If you read this way back on March 22, you know that ALS can make me a laugh when I would (and should) keep a straight face.  I can’t really go into detail, but let me just say I had an “incident” during Mass tonight where my son was being confirmed into the Catholic church.  The Archbishop of Santa Fe was present, but I think too busy to notice.

 

Day 106, April 29, 2011.  The twist shifter experiment (see March 5) was half successful.  The front shifter became too difficult to twist, so I'm back to the triggers for the front.  I'm sticking with the twisty for the rear. Because shifting the front will again require me to take my left hand off the bar, it will probably lead to more of this, but being able to shift could lead to more of this.  I'll take my chances for now. 

Alright, time for reader input: 

 

When I returned home from the hearing, the plan was for me to go lift weights; however, as expected, I was trapped in my crisp, white pinpoint Oxford . With my tie removed and my top button buttoned, I looked like Monk (the OCD TV detective).  So I crawled in bed as-is for what turned out to be a three hour nap.  Appropriate rest is a critical part of a Leadville training plan.

Very  good Leadville news.  The wonderful people at Leadville have agreed to a rules exception that will allow my friend Mike Archibeck is to ride the entire race with me.  This will be a big deal for peace of mind for our family and crew.  In addition to providing moral support, Mike will be like my personal St. Bernard, and if I happen to require a hip replacement, Mike can take care of that on the course. One possible hitch. Race organizers insist Mike will be entered in the race as "Doug's B!%@h". I will continue to lobby for "Mike Archibeck"; and, failing that, try for "Doug's Sherpa" or "Doug's Domestique".

Remember the joke about the guy who finds a genie in a bottle, makes a wish (which I can't repeat here), and his legs fall off? See the May 24 feature at: 

Day 83, May 22, 2011.  I joined Chris Dineen this morning for City loop he called a "recovery ride".  To me it felt like "stage 2 of a two day stage race".  The rest of the day is reserved for France planning and a nap.

Days 85 and 84, May 20 and 21, 2011.  Every bike race has a story.  Today was (supposed to be) 50 miles.  The first leg was directly south for 16 miles to a turnaround and then right back to where we started.  The wind was nuking from our right and slightly behind us as we rolled south.  I didn't anticipate anything dramatic in the first half hour, so I didn't really warm up before the start.  Bad call.  Less than a minute after "go", there was a significant acceleration that I completely missed.  A gap developed in front of the rider in front of me.  I should have popped around him immediately, but I didn't take the move seriously.  The wind cut a canyon between the front group and everyone else.  I grouped up with two guys, then four, then five, and we began to try to repair the damage.  The level of effort was ridiculous.  Although the slightly helping crosswind had us ripping along at about 30 mph, the wind was so strong from our right we were getting battered no matter the position we maintained within the group.  At about 10 minutes into the race, the lead official was waiting roadside to tell us the lead group was 55 seconds ahead.  He may as well have said "boy, do you guys suck!"  There was no way a small chase group would catch the leaders with that much of a gap, huge wind, and so many strong riders in the lead group.  Resigned to our fate, we chugged along, occasionally picking up riders who were falling off the main group.  I continued working at a very high level of effort, the equivalent of what I might do it in a 30 minute criterium. 

When we made the turn at 16 miles, we were a group of four.  I met Mark Forsythe in a race about a year ago.  We were in a six man breakaway, and I instantly recognized him as a teammate because we were wearing exactly the same clothes!  Neither of us are Chatty Cathys when racing.  In the course of about 27 miles riding within ten feet of each other, I said "hey, I'm Doug".  Mark said even less: "I’m Mark".  So, our group of four at the turnaround was me, Mark, and two guys I don't know.  For ease of reference, I will refer to them as Bill and Ted.

After the turn, we found ourselves bashing into the crosswind, now coming from in front and to our left.  To maintain balance, we leaned our bikes into the wind.  It became instantly clear to me I had a choice to make:  (1) Continue at this level of effort and bail when we returned to the start line. This would mean I would race only 32 miles, recording my first ever DNF; or (2) back off of bit so I could complete the race.  In a race with less wind, it is possible to back off but remain with your group simply by taking less time or no time on the front.  That would not be possible bucking this wind for 24 miles before turning back to the finish.  So, my choice boiled down to riding alone and finishing, or riding hard with the group and being cooked at 32 miles.  I didn’t want to be lonely, so I cast my lot with the group.

It had been clear to me for a number of miles that Bill and Ted were stronger than me, possibly stronger than Mark.  Emerson wrote "there is  strength in the union of even the sorriest of men".  This is true in road bike racing.  Bill and Ted, apparently, did not read Emerson (neither did I, but I heard he wrote that).  Very soon after the turn, Bill and Ted accelerated.  Mark stayed with me either because we are teammates and therefore homies, or because he couldn't match the move.  Either way I now had a problem.  If I dropped out at 32 miles, I would be abandoning a teammate, which just ain't right; but I would be virtually useless to Mark over the longer course.  So, I needed to figure out a way to get Mark hooked back up with Bill and Ted.  Bill and Ted, however, were pulling away steadily.  Also, I was operating over 90% of my maximum level of effort.  I let Mark take the brunt of the wind to see whether I could recover enough to make an effort to close the gap.  This did not work.  I was still getting smacked around by the wind, I was slobbering and hacking and working very hard. 

After what seemed like a full day, I looked ahead and saw Bill had dropped Ted.  I began taking short, lame turns in the wind to try to help close the gap.  Eventually I was able to take a couple of long-ish pulls, and Ted was probably slowing down as a result of and being all by himself.  We caught Ted about 3 miles before we reached the start line, which left me free to give up.  When I pulled off the road, Mark yelled back, encouraging me to stay with them: "it's not that far!"  Mark didn't understand that, at this point, my car, 100 meters away, was "far".

So, I got in a good solid workout.  My heart rate average was higher than it has ever been for a race longer than 40 minutes.  I also got Jack-slapped by the field to the point I was willing to swallow a DNF.  On the other hand, I raced my bike today. That's a win.

Day 86, May 19, 2010.  Set It and Forget It.  One of my favorite workouts

 

http://awareness.als.mda.org/ 


Day 107, April 28, 2011.  So, I have been having increasing difficulty typing.  There are two issues.  First, some fingers won't elevate equal to the others.  The consequence of this is that the dangling fingers tend to unintentionally press keys.  This problem also results in some difficulty reaching keys with the proper fingers.  The second problem is the muscles that control the extension of fingers fatigue very quickly.  These muscles are in my forearms.  As the fatigue increases, the control over my fingers decreases, leading to accuracy problems.  To get a sense for what this feels like, hold your hand down at your side and flex your wrist up for as far as it will go, repeatedly, until your forearm begins to burn.  That sensation begins after typing a sentence or two.

 

My law firm provided me a software program that recognizes speech and types the words into any software program.  It takes time and practice for the program to become accustomed to my increasingly unusual speech characteristics.  When it operates properly, it saves both fatigue and time.  When it operates poorly it makes me say bad words, and then it types out something ridiculous that makes me laugh.  Here’s an unedited example:  “this parking fleas of ship program isn't worth reflecting plastic reviews to make their see the.”  The first person who correctly translates that (email only, please, for obvious reasons) will receive something very cool by mail.  Suffice it to say the program needs a good night's sleep.

 

Jean and I enjoyed the first relatively calm day in what seems like a month.  We took the tandem out for 30 miles on Albuquerque's dedicated urban bike path.  We talked about France until I was snorting and wheezing too much, and then we thought about France.  We leave a month from tomorrow. 

Day 108, April 27, 2011.  Brent Lesley is a great friend and cycling teammate.  We are half of "Team ALS Sucks" for the 12 Hours of Mesa Verde next weekend.  If you are enjoying this blog, you will love Brent's story supporting his fundraising effort. Click here.  I'm going to leave it there -- please read Brent's story and you will LYAO.  Today's training was good -- 30 miles with climbing on the road in the wind.  Rode fast, felt strong.  When I got home the twitches hit hard from my eyebrows to my calves.  I stood and looked at my chest and shoulders in the mirror and expected a creature to pop out like in Alien 1 when Kane (John Hurt) was in the diner.  Remember? Creepy.

Day 109, April 26, 2011.  “Watts are for dorks”.  Training based on power (measured by watts) is the current state of the art in cycling.  I have always relied on heart rate, perceived exertion and dry heave frequency.  The reason I have eschewed power and followed this methodology has its roots in physics.  What I mean by that is Jean would beat me if I found one more cost center having to do with cycling.  I’m actually with her on this point, as I think all financial reason was abandoned about six bikes ago.  Here’s the inventory of bikes in our home: Two mountain bikes for racing; one “trail” mountain bike (these are different categories, I swear); two mountain bikes for downhill courses; three road bikes; a replica of an 1882 penny farthing or “high wheel”; a restored 1952 Schwinn Black Phantom (next to the baby grand, of course); and the parts from which a 1955 Schwinn Red Phantom may one day be restored.  OK, those are my bikes.  Everyone else in the family has some, too.  That Red Phantom’s prospective restoration potential is enough reason all by itself for science to cure ALS. But I digress.

Today I did a power-based workout at the gym. It included six intervals of five minutes each.  My averages in watts were 300, 275, 275, 265, 275, and 280.  What’s that mean?  If you’re a Power Dork, you know.  For the rest of us, it means dry heaves after numbers 1 and 6, and it gave me a feeling Leadville remains possible.  It will become more so if the wind dips below 50 tomorrow so I can ride an actual bike.

Day 110, April 25, 2011.  Today was supposed to be a bike day.  Sadly, we had knock-you-over wind all day.  So I went to the gym.  I did Satan’s Stair Machine workout and then lifted weights.  Lifting continues to provide good material for this blog.  When I describe my insecurity about weight lifting, I always have the same guy in mind.  It is possible, perhaps likely, that he is a ghost.  Based only on the number of years I have seen him in the weight room, he must be at least 45 years old, but he looks exactly the same as he did 10 years ago with one exception -- his upper body continues to expand.  In the 1990s, he had eagle-wings inked the full width of his back.  In need of more canvas, he must have turned to Hamburger Helper to get even bigger, because now he has dragons beyond the wing tips.  The overall presentation is somewhat comical because he looks like Mr. Incredible above the waist, but has the legs of Pipi Longstocking.  I am not exaggerating here -- his biceps could beat the crap out of his calves. Whatever.  This is who I worry about quietly mocking my weakness.  He was there today.  I retreated from the free weights to the machines.  There, I discovered a new horror. 

The shoulder press machine has plates in intervals from 10 pounds to a very heavy weight.  The machine was designed for use by Sally Field or an 85 year old trying to ward off osteoporosis.  I set the weight to 30 pounds and it did not move.  I nonchalantly stood up and looked for a problem such as a hippo resting his butt on top of the weights.  No luck.  So I moved the pin to 10 pounds, the lowest setting.  As I applied power, the weight slid slowly up the guide rails until it was about half way, where it came to a stop.  One more try with more enthusiasm; same result.  I surveyed the room in every direction, hoping Dragon/Eagle Boy was busy eating someone or otherwise distracted, then I picked up my keys, somewhat relieved, and went home.

Abby announced tonight this will all be good for our family because some smart scientists will discover the cure; I will get better; and we will have learned all the ALS lessons free of charge.  Clever girl.

Day 111, April 24, 2011. Happy Easter! Last night the University of New Mexico soccer team held a fund raising exhibition game to raise money to help a young former player recently diagnosed with ALS. We sold Bite Back wrist bands and met lots of nice people, many of whom have some connection with ALS. We were reminded how very different the disease is for everyone. A number of people I met were surprised I have ALS (must have thought I spent the hours before the game at a brewery). I am looking forward to getting back on the bike tomorrow, but I sure enjoyed my mom's food today.

 

Day 112, April 23, 2011.  “Doug has the fatal disease, so he gets to pick the pizza.”  While you might wince if you hear this in the wild, it captures a multi-faceted silver lining of living with ALS. 

  1. People around me (including me) spend less time sweating the trivial aspects of everyday  life;
  2. We all have fair warning of the evanescent nature of life when someone close to us gets the shark.  Sometimes that comes instantly and finally (e.g. a shark or city bus); for a lucky few, like me, it comes in slow motion;
  3. Life itself is a fatal disease, and we used to treat those who had survived the longest (our elders) with the sort of deference I’m receiving now.  The job of old people used to be imparting wisdom and guidance; but now we seem to think their job is to die before their care becomes too expensive.  I’ve had more fascinating conversations about life in the last year than I can count, and they make me happy.  It’s like I’ve skied off a cornice and the people uphill know they can ask me what to expect; and
  4. I actually do get to pick the pizza!

 

Day 113, April 22, 2011.  After five days off the bike, Jean and I went out for a breezy 30-miler around the City on the tandem.  We pushed hard to the top of the route, and two things are apparent.  A bit below redline, I’m wheezing badly.  Fitness? ALS?  Who cares – if I can’t ride in that zone, I’m not going to be able to hang in a race, which is consistent with my race experience this season.  Second, I need something to contain my saliva exhaust when I’m on the tandem.  The proper Tony Gwynn-esque spitting technique is pursed lips, neck snap, ptoo-wee, zing and splat.  The problem is in the pursed lips/neck snap phases.  My lips and cheeks function much like Mr. Ed’s and less like a gun barrel.  In lieu of zing and splat, I deliver an aerosolized cloud like and anthrax warhead.  Aside from the source of the fluid, the effect for Jean must be like riding a bit close to sprinklers on the downwind side.  I’m thinking a sponge duct-taped to my forearm might do the trick.

Days 115 and 114, April 20 and 21, 2011.  Good news! Late in the game, the federal funding for the ALS Research Program was resurrected at $8 million.  Thanks to those of you who took the time to write to your congressional representatives, the President, federal candidates or Homey the Clown. They listened.

There was a movie in the 1980s starring Kevin Bacon as a reluctant husband and father.  In a nightmare, he saw himself being crushed by g-forces as he rode the front of a rocket sled on rails ending at a concrete wall.  Way before ALS, I’ve had that vision and I distinctly remember doing the math and knowing the concrete wall was at some point after age 82.  I found I had that vision during times I was too busy to take stock.  When we ask “who are we”, “where are we”, and “where are we going”, the sled slows. 

I see myself on the sled a lot these days, with my lips and cheeks flapping hard in the wind and water streaming from my eyes.  I keep reminding myself the assumption I’d get 80-plus years was never sound.  The wall is out there now just like it was before, and, just like before, there’s no one around who will tell me the distance.  Taking stock, however, can slow the sled, even if ALS is on board.  So, our whole family will keep asking who we are, where we are, where we are going, and, even “what’s that smell?”

Day 116, April 19, 2011.  In early August 2010, about two weeks before Leadville, I had recently been diagnosed, and I talked with a woman who was working on production of a movie about the Leadville 100.  She wanted to know whether I’d be willing to talk about the challenges I had overcome preparing for Leadville.  At that time, I felt like my challenges could be outlined in a much shorter list than for someone who was a bit overweight.  Looking back at Saturday’s mountain bike race, I have to admit I have some issues for 2011 including:

  • Shifting.  My front twist-style shifter is no longer doing the trick.  I’m going to have to go back to triggers which means taking my left hand off the bar to shift, which can lead to problems  including . . .
  • Staying on the bike.  My left hand/wrist strength is the culprit here.  I will have to stay focused and in control descending.  Or I could just duct tape my hands to the bars, which could have consequences including . . .
  • Eating. Chewing is laborious.  If I put my mind to it, a decent-sized slice of pizza takes 15 minutes to munch.  This doesn’t translate well to eat-on-the fly bike nutrition.  I will have to figure out better liquid options.  If I don’t fuel well, it will have consequences including . . .
  • Pedaling.  My friend Jason Bousliman has RUN the Leadville Trail 100 footrace three times and likes to remind me how soft the bikers are because we get to coast the downhills.  Fair enough, but with over 12,000 vertical feet of climbing, even a Saudi engineer can tell you some pedaling will be required (though the folks in Riyadh are still trying to work out a way to push a rope). I’m undeniably losing some leg strength and if, for whatever reason, I don’t pedal fast enough, it will have consequences including . . .
  • Freezing to death on course.  In 2009, we had rain, sleet, snow and something else that hurt in the first 50 miles.  My un-insulated hands won’t do well if the weather is like that this year, and forget finishing if I have a. . .
  • Mechanical problem.

If I make it to the start line, it will be an adventure.

Another adventure – yawning.  The form of ALS I have causes excessive yawning.  I don’t mean lazy, ho-hum yawning; no, this is like a shark biting the head off a baby seal.  Phase 1: It comes from nowhere, my mouth flies open, eyes slam shut, whatever is near my lips has a good chance of being sucked in, or, if it’s already in, flying out.  My arms curl up to my chest and my whole body shudders.  I've seen this in the mirror.  I look like an emaciated, constipated T-Rex.  Phase 2: my jaws slam closed and I invariably bite a cheek, my lower lip or my tongue.  Every now and then I’ll get all four, which tastes like seal.

Day 117, April 18, 2011 (Marathon Monday).  So I flew to Boston, not Chicago as I reported last night, to surprise our sister/sister-in-law, Lorrie Park before she started her first Boston Marathon.  In a bit over  a month, Lorrie raised over $6,000 through osohigh.com to help apply the beat down to ALS.  In the 1980s, I ran four marathons, and each included one or more of the following: (1) puking; (2) intractable muscle cramping; (3) how shall I say – intestinal distress; (4) blisters; (5) abject, despondent, irrational hopelessness; and (6) wrong turns.  By my standards, Lorrie was off the charts today.  27,000 runners, clear blue sky, a tail wind, a “world’s best” for the winning man, and Lorrie made it look easy (but we didn’t see her at mile 12).  Boyleston Street was mobbed by bulging crowds on the north (drunk/bar) side and the south (hotel/metrosexual clothier side), but she saw us and we saw her in the last 0.2 miles.  Intent on smacking down fellow Tucsonian Mary Roberts, though, Lorrie couldn’t stop to deliver kisses to her fans.  This allowed her to slip by Mary, who had stopped to push a child in a wheelchair across the finish line.  Ruthless, single-minded focus on the task -- that’s what it will take to defeat ALS.  Lorrie was inspiring! What a day; what a performance!

Tomorrow we’ll review what the Socorro mountain bike race revealed about my Leadville prospects.  Unless we sleep all day.

Day 118, April 17, 2011.  If you read yesterday’s blog entry, you’re expecting a story about a mountain bike race.  It’s in here, but this is really about caregivers.  When I think of a caregiver, the image is someone dressed in white pushing  the wheelchair.  It is slowly dawning on me how narrow a view I’ve had.  The following is a list of activities where care was given to me today (so far).  Everything on the list was caused or made more difficult by ALS.

  • Smoothies are my most basic riding fuel (bananas, strawberries, other berries, yogurt and OJ).  Bags, packages, kitchen utensils and the like give me fits, so Jimmy and Abby both contributed smoothies last night.
  • Zippers suck, so Jean folds my team jerseys with the zipper half-zipped so I can pull it on.
  • My crazy-light Gary Fisher Superfly 100 has gained weight over the last year (in my hands), so Jimmy loaded it into the truck last night.
  • Jean filled my Camelbak with lemon water (I have to use pliers to open the fluid reservoir).
  • I traveled today with my friends Mike Archibeck and Todd Resch.  We used my truck but Mike drove down so I could fiddle with my bike junk ; and Todd drove back so I could lick my wounds.
  • Todd opened drinks for me in the car.
  • Mike unloaded my bike.
  • Mike pumped up my tires.
  • Todd stuffed my spare tube into my not-quite-big-enough-for-a-spare-tube container.
  • Mike helped tighten my shoes.
  • Todd tightened bolts holding my cleats onto my shoes.
  • Todd helped pull my shirt and jersey into proper position.
  • Mike helped get my gloves on (twice).
  • Silvio Menezes put some food stuff in my back jersey pockets.
  • When I crashed – and it was a good one (handle bars twisted backward; I launched, like a headfirst slide into home, only I did not land in manicured Georgia clay; injury report: torso and every appendage, but only cuts and bruises) – I was dazed and had no wind, and the rider behind me stopped, untangled me from my steed, helped me get upright, and waited until I could say out loud “yes” when he asked if I was OK.  Had this happened in a road race, the first guy by would have driven a bayonet through my heart, and the second would have kicked me into the gutter.  I was distracted by the circumstances (counting teeth and such) and have no idea who helped me, but I know he answers to “Bro”.
  • Officials did not pull me from the course or make fun of me when I came by after my first miserable lap.
  • Jimmy pulled off my base layer shirt for me.
  • Abby re-stocked my medicine dispenser for the week.
  • Abby and Jimmy helped me pack for Chicago.
  • Abby loaded the car for me.
  • TSA gave me an intimate massage.
  • The guy across the aisle rescued me from trying to wrestle my roll-aboard into the overhead bin.

There is nothing I simply can’t do yet, which is to say I could have done everything above on my own with some measure of tools, inconvenience and/or exasperated grunting.  Imagine what this list will look like when I can’t use important body parts that are all currently functioning at some level.  How will I thank the people who help me every day when most of what I can do involves drool and/or TV?  Wait! Read that sentence again!  I’ve always expected I would have days of drool and TV; I just thought I’d be 90.  So what has changed?  The people who provide my care will be mostly people who love me (or at least love Jean) instead of a rehabbed sex offender who works for Casa de Los Really Old Folks.  ALS Rocks!

Day 119, April 16, 2011.  Mountain Bike Racing in a Nutshell.  A good way to explain mountain bike racing is to compare it to road racing.  First, road racers are “roadies”, and mountain bikers are “dirties”.

 90% of the remainder of what you need to know may be gleaned from the following examples of real people who are roadies or dirties. 

 

ROADIES

DIRTIES

Elmer Fudd

Yosemite Sam

Sylvester the Cat

Fritz the Cat

Prince Humperdink

Inigo Montoya

Robin Hood (from “Men in Tights”)

Shrek

Lois Griffin

Brian Griffin

Hillary Clinton

Sasquatch

 

Got the picture?  Another way to capture the culture is to listen to what they say.

 

SITUATION

ROADIES

DIRTIES

Following riders to leading riders entering a corner

“Hold your line”.  “Hold your line!!!!” “HOLD. YOUR. LINE!!!!”

“Bro?”

Rider being overtaken by another.

“Don’t pull through too fast; let’s work together” (translated: the pace is killing me; may I suck your wheel?”)

“[Head nod] Bro.”

Teammate beats his teammate; the latter having been the overall leader in the race. 

$%#&^ (&*%^$#@!! (English)

Same (Spanish)

Same (Belgian)

Same (French)

Same (German)

Same (Italian)

“Bro! [fist bump]”

 

That’s it.  Tomorrow’s race day.  Bro.

Day 120, April 15, 2011.  Can a brother catch a break on a mountain bike?  Not lately.  Today I headed for Albuquerque’s south foothills and made it all of five miles before I ran over a drill bit which punctured my tire by going into the tread and out the side wall of the tire. There is no shortcut to fixing a flat like this one.  So I sat down on the bike path, got comfortable and went to work.  It took about 20 minutes, as compared to the standard six, for me to repair the flat.  Since my initial reaction to the flat was that I would have to call a cab, I considered this a very good result.

Mountain bike racing begins for me on Sunday.  Tomorrow’s topic will be “Mountain Bike Racing in a Nutshell”.  Here is a preview: the only thing road bike racing and mountain bike racing have in common is spandex.

Day 121, April 14, 2011.  Do not try this at home.  Procedure described below is not recommended by the author.  No valid scientific methodology has been utilized by the author. This is probably very dangerous and likely to put someone’s eye out.  If you attempt this, you will probably die and God will be mad at you for proceeding in such a foolhardy manner in the face of obvious risk.  If, despite the foregoing, you might nonetheless try this, you are not authorized to read further.  Please step away from the computer. 

Late last summer I read about the work of researchers at the University of Wisconsin’s Tactile Communication and Neuro Rehabilitation Lab studying the effect of sending electrical impulses to the brain through two major nerves that route directly to the tongue from the brain stem.  The brain stem is thought to be the source of the primary defects that mediate ALS.  They have had some success with MS patients, theoretically prompting the brain to find new ways to accomplish tasks that had previously been performed by parts that later became messed up.  I asked our neurologist at the University of NM Hospital, about the concept and its potential applicability to ALS.  She opined the concept is “compelling”.  If you ask her about this, she will probably deny it, but I have the email.  The UW researchers are not presently studying ALS.  Click here to learn about the UW lab. 

Given the promise of the treatment options I have available, I put my redneck engineering expertise to work.  I turned my “Dallas Sucks” cap backward, pulled my Leatherman from my belt holster, cut up some adhesive electrodes I had next to the oil filters, stuck them to my tongue and fired up a TENS unit.  Pause for a moment here.  I attended and graduated from high school.  I went to classes at an actual college for four years.  I obtained a whole law degree.  I even know how to interpret the “Mr. Yuck” faces on the bottles under the sink.  I applied current to electrodes I stuck to my tongue.  Car surfing (see April 13) is surely a better idea. 

Does it work?  Probably not.  Is it dangerous?  Probably, but having ALS has its share of hazards too.  Why am I doing this?  Two reasons: (1) it feels right to be doing something, even something dumb; and (2) when it’s time to do the dishes and I announce in a serious tone “I need to do my tongue”, I have a free pass to watch “Family Guy”.

The UW people have used their technology to make blind people see images; they've helped people who had lost the ability to walk without assistance; they restored speech to a man who had essentially none.  But they can conduct testing on only a handful of people at a time because they have so little money.  The federal budget for ALS treatment research for 2011 stands at a big goose egg.  Why?  See March 31.

Today was a day off the bike and away from the weight room.  Everyone who took a deep breath in Albuquerque today got a good whiff of Phoenix.  Less wind tomorrow.  Time to challenge the cactii.

Day 122, April 13, 2011.  A near-perfect day on the bike.  Aside from snot management, it was easy to ignore ALS.  Jean and I headed out on the tandem and had a smokin’ fast ride around the City.  We talked about our trip to ride the bike in the Alps next month.  We made plans and we cruised long stretches in silence.  We held hands and Jean massaged my shoulders.  Then I not only forgot I have ALS; I assumed we were both immortal.  “Car surfing” is following a motor vehicle close enough to benefit from its draft.  If you find the sweet spot behind—let’s say—a City bus, the vehicle will suck you along at shocking speeds.  This is exceedingly dangerous; I vehemently recommend against it; the bus has better brakes; you can’t see the surface in front of you; a cop will shoot to kill if he or she sees you; death is nearly certain.  Ergo, I never attempt this more than once a week.  We hit 38 mph (coasting!) behind a TLC Plumbing & Heating van before Jean realized what was happening.  She Jack-slapped me upside the head, and I sheepishly pulled back into the bike lane. 

Abby scored a goal at her game this afternoon.  She hit the ball about 20 yards out, it went through a car wash (didn’t get wet) and went into the upper corner at the far post. Sweet!

Day 123, April 12, 2011.  “I didn’t do Jack”.  “I did Jack”.  How odd those two sentences mean the same thing.  Fortunately, I discovered my training day fit those descriptors before it was too late to do anything about it.  Missing out on a near-perfect riding day, I went to the gym at 6:30 p.m.  If there is exercise equipment in Hell, it’s the stair machine that’s like a treadmill and has real stairs rotating through.  I hopped on, cranked it all the way up and went through 20 minutes of feeling like I did right before I got dropped by the packs in my two road races this season.  Then I lifted weights, or more accurately, “weight”. 

Earlier in the day, Kerrie Copelin (from ALSA) and I had lunch with Nicole Brady, a news anchor with our NBC affiliate.  Nicole will be putting together a weekend news program focusing on ALS to air in May.  The Oso High MTB Race will get a plug, and I will perform “Teach Me How to Dougie”.

I haven’t forgotten I sort of promised to fess up to my NOT FDA-approved ALS treatment; I’m just waiting for the right moment.

Day 124, April 11, 2011.  I'm still giving my mountain bike the silent treatment, but I got out today for a 25 mile road ride.  While I was riding up a long climb on the north edge of town, I passed another cyclist and thought, with great satisfaction, "dude has no idea I have ALS".  Climbing is a good time to think.  From there, it occurred to me I have no idea what challenges he faces.  We get introduced to anxiety early.  If we're lucky, it's a girlfriend, a grade, failing to clean up our room, worrying about finding the right job, school, spouse or car, etc.  If we're lucky, we have some years where we're settled in to our personal lives and careers, our parents and 1.8 kids are healthy, the dog isn't hanging out with the ho mutt down the street, we don't feel like suing anyone, no one feels like suing us, every vacation has perfect weather, our 401(k) is robust and reproducing itself like those worms that have male and female reproductive systems, and our insurance premiums are low.  By the time we hit 40 or 50, even if Santa is happy with us, however, stuff begins to hit the fan.  Friends or parents' health, kids drifting into Columbian drug cartels, the usual stuff.  The point is, we all face challenges, and whatever sits at the top of the list looks like the barrel of someone else's gun, so we all have the opportunity to make ourselves completely miserable by wallowing in the swamp.  For me, these are relatively easy days -- I can still do everything (unless I'm asked to take out the garbage, which, I can tell without even seeing the bag is way too heavy for my spindly arms).  How will I be when "dude definitely knows I have ALS"?  A pickup truck buzzed me, I looked at the time, spun around and headed home.  Descending is a bad time to think, so I'll have to figure that one out another day.

Day 125, April 10, 2011.  Looking back on the week, the thing that stands out to me is the unfortunate mishap statistic: six times into the dirt.  Seems like an appropriate time to discuss cognitive function.  Despite how it may occur to you from my writing, ALS does not affect cognitive function (thinking, logic, reasoning, etc.).  Which is to say: I was like this before.

This holds true throughout the progression of the disease.  Also, while voluntary control of muscles will evaporate, pain and other sensation signals are not disrupted.  So, how does that play out?  Can’t move; can’t talk; and your butt itches.  Nice.  This is why I try not to look forward too much.

Proof I have not lost my ability to reason: after the week I’ve had on the bike, despite her seductive whispering, I refused to make eye contact with my mountain bike today.

Day 126, April 9, 2011.  More cactus.  My good friend and teammate Todd Resch took me out for a two-hour mountain bike ride and kicked me like the neighbor’s cat.  Along the way, I turned turtle in rock piles or cactus gardens four times.  Each time I was going 0 mph, and twice I wasn’t even riding the bike, which supports the hypothesis bikes are more stable while in motion.  So that’s feet-up six times in my last two mountain rides.  You might be wondering (I know I am) whether any of this is attributable to ALS.  I really don’t think so, but the first one today may have been an arm strength issue.  Either way, it led to Jean and my mom mocking me while they plucked cactus spines from my body and clothing for an hour.

There is something going on with my leg strength.  I think my climbing speed is off by 5%-10%.  Not a big deal.  The other issue is “sewing machine leg”.  You can probably induce it while sitting by lifting a heel off the floor.  If that does it, your knee and lower leg will jackhammer almost involuntarily.  That’s going on while I’m on the bike.  I first noticed it in November nearly 100 miles into El Tour de Tucson with Jean on the tandem, which is to say I was tired.  Now it’s happening when I’m descending on technical mountain trails, where I’m as nervous as a dope dealer in church.  Something to make me feel less stable on the bike was not on my wish-list.  I keep reminding myself how good it is to be on the bike, even with the annoyances.  I really should spend a higher percentage of my ride time actually on the bike.

Day 127, April 8, 2011.  Cyclists love losing weight.  Thanks to some coneheads at M.I.T. (who are phenomenal cyclists), there are actual mathematical formulae that will tell you exactly how much faster you can pedal up a one-mile 5% grade if you lose a pound.  If you’ve decided all that separates you from the Cat 5 hill climb smackdown podium is five pounds, you can either skip the fries, save $35 and drop five pounds, or you can drop $5,000 to $7,500 to get a lighter bike.  Here's the math: a 20-pound entry-level road racing bike costs about $1000.  Beyond that, every pound shaved adds $1,000 to $1,500 to the cost of the ride.  That holds roughly true until you go below 14 pounds, at which point the surcharge is about $5,000 per pound.  Most racers claim their body fat is already dangerously low, eat the fries and buy the bike.  Jean fell for that one twice.

I’ve weighed 165 pounds since 1976.  I’ve never been willing to give up the fries or anything else for running or cycling.  My challenge now is keeping those pounds.  If I get down to 150, I’m supposedly going to have to have a feeding tube installed.  That means they poke a hole directly into your stomach, slip a tube in, put a cap on the end and tape it to your chest.  Meal time is much like going to the gas pump.  I went to bed last night at 160, so today my job is to feed.  Eating is a pain in the neck.  I chew so slowly, a basic meal can take a half hour to munch down, and that’s if I don’t try to talk.  Abby and Jean make about a half gallon of fruit, yogurt and protein smoothie for me every day, and that’s key. 

To me, the feeding tube solution doesn’t really seem right because the villain in my weight loss is not malnutrition; it’s my arms becoming – shall we say – more aerodynamic.  That’s happening because most of my motor neurons and my nerves are all pissed off at each other and not speaking, which means messages from my brain don’t get to the muscles, so they spend their days watching TV and shrinking.  Dumping more food in won’t change that dynamic.

Day 128, April 7, 2011.  “Every day is a gift” and all that crap is true, but that doesn’t equate to “perfect”.  We had rain late this morning for the first time in two months.  Mountain bike trails get sandy and sketchy after extended periods of dry weather, but a bit of rain turns our trails back into “Hero Dirt” – fabulous traction up and down hill and through corners.   After fumbling through my ride prep, I strode from the garage with the supreme confidence of a hitter coming to the plate knowing he’s going to go “yard”.  From that point, the ride went south (as in “sucked”).

First came vertigo.  I’ve had a number of episodes of moderate vertigo on the bike since I began taking Rilutek last summer.  Not a big deal on a road bike.  Highly bogus on a mountain bike, on a mountain, on a trail with rocks and cliffs and cacti and such.  Two “crashes” later I was bruised, dripping blood and snot, but it could have been way worse if my equipment had been less worthy.  Both “crashes” are more accurately described as “tipping over”.  Same story each time – bumped into a rock, quickly decelerated to zero, then teetered between happiness to my left and "this is gonna hurt" on my right.  Each time I wound up in a heap on the business end of rocks below me.  My helmet caught the worst of it the first time, and my plump Camelback spared my spine the second.

From that point, my frayed nerves coupled with vertigo to make the remainder of the ride – the easy, fun, chill part – a white knuckled, softly whimpering fear-fest.  What could make the ride worse aside from a direct lightning strike or a drunk truck driver?  A flat.  I’m still glad I went out.

Day 129, April 6, 2011.  I now have a great excuse for not wearing a tie.  I can't tie one effectively.  This morning Jean helped me with my shirt and we decided to leave the top button unbottoned so I wouldn't have to wear a pinpoint oxford on a mountain bike ride later in the day.  The combination of that plus my unsatisfactory effort at creating a half-Windsor was I looked like Otis, the town drunk in Mayberry.  Bonus --every day is casual Friday!

Day 130, April 5, 2011.  Big Day.  Albuquerque High won a 6-5 thriller, and Jimmy got his first varsity pitching win.  Abby's school soccer team won by four goals.  And then there's the Reaper (see March 10).  I rode it today.  Every time it's different -- people, conditions and rider dynamics.  Every time, however, it hurts.  I got dropped early today on part one.  I had to back off after blood started squirting from my eyeballs.  And most of the pack just rode away. Coming back to town was easier because we were bucking a stiff headwind, which makes it harder to gap other riders.  So I hung with the group.  I slobbered a bit, but my hands are becoming accustomed to the new road bike and I really felt very good overall.  Warm weather sure helps keep my hands functioning.

Any ALS patient who hasn't tried something marginal has way too much faith in the pace of medical research.  There's accupuncture, herbs, faith healing, supplements, foreign implantation of timed-release drugs under the skin, electroshock, sound waves, weed, etc.  In the next day or so I think I'll be ready to confess the really stupid thing I'm doing.

Day 131, April 4, 2011.  Okay, I think I have a solution to the weight room depression problem.  Last week, I was reduced to bench pressing an empty bar -- that's 45 pounds, the weight of a dog I'd allow to sit on my lap.  The problem I've been having is two-fold.  The first part is difficult to admit -- I care what people I don't know will think about me when they see my bar, carrying weight plates so small they could be necklace pendants.  I realize this should be fairly low on my list of issues. 

I considered another t-shirt idea: "I'm not a roadie [road bike racer]; I have ALS".  I've thought of standing up after each set, grimacing while casting a concerned and frustrated look toward the ceiling, and rubbing a shoulder as if I'm rehabbing after major rotator cuff surgery.  Embracing the notion I'm vain enough to care, I have a solution: stop using free weights.  The machines are designed to allow some measure of privacy in setting resistance.  When I lift free weights, by contrast, I feel like there's a Vegas-style flashing arrow pointing at me, announcing the name of my quilting club.

The second problem is I've been using the weight room as an ALS meter, plotting the decline in excruciating detail.  But I'm only keeping track in areas where I'm clearly declining.  So, more than any area of my life, in the weight room I focus and dwell on the bad news.  The solution: different exercises every session so I can't compare apples to apples.  Backup solution: stop lifting weights and pick up hush puppies (with butter) at Long John Silver's on days I'm off the bike. 

Day 132, April 3, 2011.  In 2008, I was preparing for my first Leadville, when a friend, Rob Pease, told me to bite off Leadville in pieces (one climb or major section at a time); otherwise I might find myself trailside, curled up in a fetal position quoting Jerry Falwell. 

Robbie was right, and that advice is also good for dealing with ALS.  If you look too far forward, it can be too much.  Plus, ALS is a blessing in that it trains you for what it's doing to you.  You don't run a 10K on Saturday, then roll out of bed Sunday and fall flat on your face, never to walk again.  With ALS slowly chipping away at abilities, it's easy to see what you need to prepare for in the future.  Breathe in, breathe out, move on -- one day at a time.

Leadville is full of opportunities for life lessons like that.  Another one: eat boiled potatoes only under circumstances where you're not likely to see them again.

Day 133, April 2, 2011.  If I could have a do-over of yesterday, I would have (1) read the fine print about today's race; and (2) not referred to myself as "part Mercedes and part Yugo"; perhaps "part Ford and part Yugo" instead.

Road bike races are categorized by racing ability, not age until age 50, when you can race either 50+ or your ability category.  I'm 50, so I have that choice.  You might think the 50+ is an easier race because most of the riders are AARP-eligible, but here's the catch -- 50+ is open to everyone over 50, including former pros, Cat 1's, etc.  So, at any given 50+ race, you can encounter lots of people with three or more lungs.  Also, with more accomplished racers, the 50+ race is typically the longest or second longest course for any given race.  But not today.

Cleverly-hidden in 24 point font in the race info was a note showing the 50+ course would be 55 miles and my Cat race would be 67 miles.  Race officials would have been happy to move me to 50+ if I had asked this morning, but I still didn't know 50+ would be shorter.  Here's how I found out 50+ had a shorter course: when my group came around after five laps and 55 miles with 12 miles to go, all the old guys (except me), were roadside sipping cocktails.  I wept, then threw up a bit of sausage biscuit, and kept going.

As for the race, I got dropped early, found my people and rode pretty well with some very good racers.  Much like last week.  I think it's clear I'm slower than a year ago, but I have some excuses other than ALS.  Good ones.  I like it that way.

Day 134, April 1, 2011.  I always dreamed of spending mornings in my golden years sitting on my porch swing trying to figure out how to open a jar of pickles with a hammer.  I figured I'd shuffle to the garage sort of unsteady on my feet and fire up the table saw if the hammer wouldn't do the trick.  I assumed I'd be in my 80s.  I'd leave the toilet seat up, and Jean would threaten me.  I would pretend I couldn't hear her or I'd sheepishly admit I'd forgotten.  I'd be old -- all of me would be old.

I'm grateful for every ability I have, but it's weird to be partly ancient and partly young and healthy.  Today was a weight room day, so I whine.  Here's an example:  My biceps have lost over 80% of their strength in a year, but my triceps -- right next door -- have not changed.  I'm racing tomorrow -- 55 miles on mountain roads --, but before I start, someone will have to pin the number on my jersey because I can't operate safety pins.

Again, I'm grateful beyond measure I'm still on the bike.  Some people with ALS get hammered from every direction simultaneously.  It must be completely disorienting.  For now, I'm part Mercedes and part Yugo, which is just silly.  And the mechanic I have is going to keep shopping for parts at the junk yard.

Day 135, March 31, 2011.  "166 Days to Leadville" is not going to become a public policy discussion, but you've got to hear this one -- there is a proposal on the table in Congress to eliminate the only federal funding for ALS drug research.  If it goes through, the dynamics will be like so:  Republicans like spending cuts.  Democrats like only one kind of spending cut -- defense spending.  Because so many service men and women have ALS, the federal research program has been operated under the Department of Defense, so the ALS research funding would be cut as part of a politically-expedient defense spending cut.  If this proposal flies, the result will be the federal government is spending less on ALS drug research than any of the following: (a) cleaning up dog poop at the White House; (b) . . . I don't need to keep going, do I?  Would you consider assembling an email to your reps or senators from a simple online tool?  I did today, and it took about five minutes.  Click here.  Thanks.

Jean and I went about 25 miles tandeming today.  I think Jean had a burr under her saddle from a discussion we had this morning about wheelchairs, voice synthesizers and feeding tubes with Kerrie Copelin, the bright-eyed and effervescent, type-A, multi-tasker who runs the local chapter of The ALS Association.  Her job description must be the length of a chainsaw user's guide.  A sample of things an ALSer can learn about from Kerrie: Medicaid, Social Security Disability Income, State disability benefits, relevant legislation and funding issues, clinical drug trials, adaptive equipment, patient support resources, French Impressionism, transmission repair, and, now, mountain bike racing.  Anyway, Jean had the hammer down the entire ride.  I thought she might pass me at times (this sentence is subtle humor, but very funny -- we were on the tandem . . .).  And she hardly talked, a sure sign something was bugging.  More about caregivers sometime, but for now, one observation.  It's easier to have ALS than to have a loved one with ALS.

Day 136, March 30, 2011.  Some days, a mountain bike feels like it's part of your body, soaking up every turn, rock, dip and climb gracefully, and other days on the same bike and the same trail, the ride is like trying to hang on to a greased feral pig that's been shot in the butt by a pellet gun.  Monday I rode the greased pig; today my hands felt solid on the bars; riding small drops didn't make me squeal or froth like the greased pig; my shoulder fatigue was minimal; and I was free to daydream about the Leadville course, which is roughly five times what I did today -- 21 miles, 2500 feet of climbing and about two hours of riding.  Could I have done today's ride four more times?  Uh, no.  But I have four months to train, plus the steroids. 

I'm kidding about the steroids.  Or maybe not.  Doesn't it seem like HGH, which is FDA-approved to deal with muscle wasting in AIDS patients, would help with ALS symptoms?  The official word is "no evidence of a beneficial effect", but the focus of the studies I've read has been on survival duration rather than quality of life and level of function.  There is a dispute about whether HGH can be legally prescribed in the U.S. for conditions other than those identified by FDA.  Most drugs can be prescribed "off-label", but there's something goofy about the law on HGH, and the only docs willing to take that chance seem to have a patient base primarily consisting of wealthy middle-aged men who look like Fred Flintstone and want to look like Atlas.

Given the prognosis with ALS and the plausible benefit, why not allow off-label HGH?  If an ALS patient thinks eating a television set while wearing a clown suit will help, I say "go for it!"

Would I do HGH while I'm still racing? Probably. At this point, I'd love to have someone tell me I had an unfair advantage.  Also, in my view, an ALS patient who would pass a drug test for cycling just isn't trying very hard! Sigh. The thing I'm taking that's most likely to enhance my performance is Centrum Silver. 

Day 137, March 29, 2011.  More numbers.  Neurologists "grade" ALS on a scale topping out at 48 that is used to assess functional capacities.  Very subjective by its nature, much like judging figure skating or gymnastics.  And the Russian judge gave him a . . .  No, I'm not going to say what my score was today.  Wouldn't want to brag.  We also had a conversation about a trial involving a drug called dextramathorazinatulzinalcothyrenzamightmakeulivelongersokeepyourfingerscrossed, with respect to which there is "clinical evidence of an association with neuroprotective effects".

Let's break that down so we can talk about ALS drug trials.  "Clinical evidence" is something a doctor sees or hears from a patient.  An "association" occurs when two or more things occur together.  To summarize by example, assume my back hurts.  I take an Advil, go for a bike ride, puke, and my back feels better.  We know from this (a) Advil is associated with neuroprotective effects (alleviating back pain); (b) Advil is associated with barfing; (c) cycling is associated with barfing; and the list continues.  If I tell my story to my doc, then there is "clinical evidence" of these associations.

Armed with this evidence and a research grant, Duke University scientists might design a study entitled "Double-Blind, Randomized, Placebo-Controlled Study of the Induction of Regurgitation as a Treatment for ALS" (it did not escape the notice of the Duke researchers that, like Advil, barfing is also associated with neuroprotective effects).  If you think I'm making this up, check out "Combination Therapy Selection Trial in Amyotrophic Lateral Sclerosis", a Columbia University study.  The objective of this study was to "compare two combinations of drugs, minocycline and creatine or celecoxib and creatine, in a phase II trial designed to determine which combination is more effective for ALS."  Minocycline is an antibiotic; celocoxib (Celebrex) is a non-steroidal anti-inflammatory agent (similar to Vioxx or Advil); and FDA's only official statement about creatine is "Creatine has not been evaluated by the FDA for safety, effectiveness, or purity."  That means FDA has no idea what creatine is or what it does, if anything.  It's easy to see why Columbia picked creatine for the study.

I'm not done yet.  In most studies, half the participants receive only placebo, AND every study excludes anyone who is involved in any other trial.  Given that a smooth trial takes about two years to FDA approval, and the average ALS patient dies in two to five years, you want to think carefully before signing up.  By now, it seems like there is enough data about there showing what happens to ALS patients on placebo that study designs could skip the placebo control and at least give every study volunteer a shot at the current potion.  I'm just saying . . .

If you're wondering about my credibility on this, run my statements by your favorite doctor.  Watch carefully; he or she will break eye contact with you.  Check it out.

As you browse through www.clinicaltrials.gov you do not get the sense they are zeroing in on a bulls-eye.  The picture in my mind is of a blind-folded pharmacy intern randomly grabbing bottles from the shelves in the pharmacy and cosmetics departments to toss to ALS patients.  The auto care section, too.  I'm not intending to sound critical here.  There is amazing thinking going on in ALS science, but ALS is apparently a very tough nut to crack.

Today was my first ride with my new friend John Dunbar.  We face many similar challenges in getting ready for Leadville.  I'm way ahead, though -- John only had a wristband to gather snot; I had a long-sleeved jersey. 

Day 138, March 28, 2011.  I went to a professionalism seminar today, sat in the back and played video games on my iPad.  Not really, but I wouldn't have blown the curve if there had been a test after.  Two hours on the mountain bike --  73 degrees and a bit windy, but beautiful.  Odd thing, but my hands felt stronger today than they have in a while -- probably the warm weather.  Whatever -- I took advantage and opened it up a bit on the descents, which is how I had found out I can still operate tweezers well enough to pull cactus spines from my shins.  

Day 139, March 27, 2011.  Numbers again.  Odds of getting ALS: 1:50,000.  Odds of getting ALS of a form that is "bulbar onset", meaning the first symptoms are speech and swallowing: 1:300,000.  Odds of getting through the Leadville 100 Mountain Bike Race entry lottery: 1:150.  Odds of living within a half mile of our house: 1:1,000,000 (2000 U.S. Census).  John Dunbar was diagnosed with ALS in April 2010.  Bulbar onset ALS.  He won a spot in the 2011 Leadville 100 through the lottery.  He lives about six blocks from our home with his wife, Elise.  So, the likelihood of John and I being neighbors is approximately one in a bazillion.  Some people work that sort of probability into a Powerball win.  John, Jean, Elise and I got two cases of ALS and a pair of entries to Leadville.  But we also each got a couple of new friends.  We met today and compared notes on many topics, including mountain bike brakes, and shifters, experimental drugs, and making direct eye contact with ALS.  There will be more to this story.

Day 140, March 26, 2011.  So here's Road Bike Racing in a Nutshell.  The strongest guy doesn't always win (and, no, I'm not about to claim I was that guy and got denied).  The biggest reason is the effect of apparent wind (the "wind" felt by a rider moving through space) and actual wind (weather-like).  Both play and effect at all times, but as the speed of the bike increases, the apparent wind's effects become more significant (if you put your hand out the car window while driving 80, apparent wind is all you feel, but while you walk, actual wind is nearly all you feel).  Riding directly into or with the wind is fairly straightforward -- racers will line up one behind the other, taking turns beind the lead duck, the one who works hardest. However, no one ever wants to be 100 lengths behind, so there will actually be a series of shoulder-to-shoulder columns, each headed by a lead duck. As the pace becomes more severe, however, the group will string out, possibly all the way to single file.  You've seen migrating ducks demonstrating principle, but they fly in the shape of a "V".  Why the difference?  The answer is simple physics -- we have opposable thumbs and they do not.

It's more complicated, however, when the actual wind is a cross-wind.  You might think the bikes would then line up shoulder-to-shoulder with the actual wind coming from the side; however, because of the apparent wind in the face, cyclists find the sweet spot slightly behind and to the downwind side of the bike in front.  So, with the wind coming from the left, the lead duck is on the front left, with other bikes staggered behind and to the right.  Not very complicated, except for the fact roads are finitely wide, which means at some point you will have a bike that winds up in the cactus if you have more than 5-10 bikes or whatever the road will hold.  Because of this, the peloton (the main group of bikes), can get suddenly sliced into many pieces when the group suddenly hits a crosswind.  This played out dramatically in the 2009 Tour de France when Lance Armstrong bunny hopped a median to join the lead group right as the cross-wind ripped the pelton in two.  Importantly, Armstrong picked up a significant time advantage on his teammate Alberto Contador.  In the days that followed, Armstrong would have earned the leader's yellow jersey except that his teammate Contador broke protocol by making an aggressive move against Armstrong.  The result -- team loyalties divided between Armstrong and Contador's respective pals, and the two camps of 140 pound men spent the next two weeks calling each other bad names in seven different languages (if you count French and Italian as two; otherwise, six).

You might wonder why racers don't just stay off the front, lurking behind others who are doing all the work.  Three reasons: (a) some do, and others call them "wheel suckers", which is not a compliment; (b) we all have a bit of Mighty Mouse in us and think we can go to the front and just ride away from everyone else, which happens very rarely and only to exceptional riders; (c) if everyone did that, we'd all tip over and the race would never end.

Today's course was a triangle.  The first leg, southwest, we had a favorable crosswind; the second was a direct cross-wind; and the final leg was right into the teeth of the wind.  With the helping cross-wind pushing us a bit from our right hips. the entire field remained together until our left turn when the direct cross hit us and all Hell broke loose.  The double-whammy of entering the cross-wind at the same time the field was being strung out by the domino effect of bikes slowing and speeding up as they passed through the corner shattered the peloton.  In a matter of five seconds, I went from a position only feet from the head of the peloton to 100 meters back.

Pain in cycling comes in stages: Stage 1, the "pain cave", the "hurt locker", etc., is highly unpleasant, but it's an effort that can be sustained for a while.  Stage 2, "redlining", is a level of effort that can be objectively determined in a lab or gym.  This level of effort can be sustained for only a very short period of time.  I measure my redline by reference to heart rate.  Stage 3, "exploded", "blown up", etc., means you must slow down, lest you enter Stage 4, "dead".

When we made that corner, I went very quickly to blown up (ten heart beats per minute over my redline) trying to chase back on with the lead group.   I was not alone in my ordeal.  Carnage was widespread, with riders traveling wobbly paths all over the road.  After bad moments like that, people find their people, and I found mine.   We grouped up, stopped wheezing, and did the duck thing for the remaining 25 miles.  The lead group, meanwhile, had organization, wings, and never let up.  Gone.  Overall, a good, not great day.  I was a bike racer with lots of snot, funny brakes, and clumsy hands; and not just "that guy with ALS".  That, as Charlie Sheen would say, is "winning".

Day 141, March 25, 2011.  Pre-race day.  Worked, napped and got myself properly-fueled (chicken fingers, fries, pizza and soda).  45 mile road race tomorrow, my first race of 2011.  I figured out why I'm anxious about this one.  The progression of ALS is not noticeable from day-to-day; instead, it's gaps in time between doing the same activity that allow you to see noticeable effects of weeks or months and creates the "Aw Hell" moments.  I haven't raced in over five months. If I ride strong tomorrow, I'm going to feel like ALS is still sparing my my legs and lungs.  If I don't, I won't blame it on my lame conditioning program, which I have named "Rely on Last Year's Fitness"; instead, I'll be convinced the progressiion if moving to my remaining limbs.  No pressure.

Day 142, March 24, 2011.  See day 157 (30 mile snot-fest), but change "30" to "20".

ALS taps one of every 100,000 of us on the shoulder.  If you live in New Mexico, you are twice as likely to get struck by lightning this summer than you are to get ALS in your lifetime. What is bad luck?  Maybe fate smiles on us anytime we don't wind up dead.  In 1992, I ran a stop sign (driving) and got broadsided.  Not long before, Jean had given me a Native American "fetish", a small carving of a bear.  By legend, the bear keeps its owner safe and brings good luck.  While I waited for the police to show up to book me, I pulled the bear out of my pocket and sat him on the bent hood of my 4-Runner.  Then I mocked him mercilessly for his incompetence.  At some point in those few minutes, it occurred to me my miniature oso may have kept me from being 0.2 seconds quicker, in which case the driver's door would have taken the hit instead of the very beefy front wheel.  So I apologized to the bear.

The "luck" discussion translates easily to faith.  Did God give me ALS?  Is this really His plan?  If so, how do you not wonder whether God is kind of a jerk?  Think about it this way -- on July 28, 2010, Jean and I flew to San Francisco to find out I have ALS.  Maybe that was the day the Albuquerque City bus was due to flatten me (and break my bike) if I'd been at home -- no warning; no time to reflect; no time to gather the people I love close.  Maybe, then, I was being protected by picking up ALS and starting down the path that led me to San Francisco on July 28.  Maybe the plan was for me to quit doing yard work or to write this paragraph . . . Works for me; works for the tender heart of my 14 year-old daughter. 

Day 143, March 23, 2011.  Good thing I worked in the early part of the day, because I was cooked after my ride.  My "friend", Mike Archibeck (sub-9 hours at Leadville 2010), took me out for a road ride I should have prepared for by resting a week.  Sometimes when I ride or ski, I get a song stuck on "repeat" in my head.  Today it was Mike's last words at the base of our first major climb, "IF WE GET SEPARATED, I'll meet you up by the La Luz Road".  "If" came along right away.  We were working our way up the climb at a pace I thought I could hold for a while, when Mike said "I'm going to start now".  I responded, "I thought we already had", but the words shattered on the asphalt gap that had already grown between us. So it went for a bit over two hours, 40 miles and 3,000 feet of climbing.  "If we get separated . . ."

I feel like the quality of my voice, like a lime green mohawk, demands an explanation.  Often, I work hard to sound "normal", hoping it won't, and self conscious it will be noticed.  That approach seems to generate stress.  A number of times, I've decided to just tell people (most notably, judges, lest they wonder whether I've had a cocktail before a 9:00 a.m. hearing).  I've been a volunteer track coach at two local high schools and the University of NM for many years.  Today was my first day of a new gig with Albuquerque HS.  The Athletic Director but no one else knew about my health, and I just told everyone else right off.  It was way more comfy that way.  Maybe I can find an "I'm not drunk, I have ALS" t-shirt. 

Day 144, March 22, 2011.   ALS makes me laugh.  A common feature of ALS is "emotional lability", which is means you laugh or cry unreasonably.  My presentation is mild.  In September I tried my last case.  The plaintiff's expert was spouting off a ridiculous blob of testimony.  Instead of concocting a vicious line of eviscerating cross-examination, I giggled.  In retrospect, that might have been more effective than a brilliant cross; at the time, however, I was slightly concerned I might draw a contempt citation. Tonight at dinner one of my kids said something funny that a parent must pretend is not funny and maintain a poker face.  Not me.  Oh, by the way, this concept applies to reacting to taste, too (e.g., a bitter beer gives me a Popeye face).

Got on the bike (mountain) today.  It was one of those rare afternoons where it felt like I had a tailwind in any direction.  Even without ALS, that will make you smile!

Day 145, March 21, 2011.  In the Spring in Albuquerque, it blows.  The wind blows.  So I stayed in today to lift weights, which also blows.  It’s getting to the point I’m becoming self-conscious about how little I have on the bars.  I keep imagining very scrawny guys who are in the weight room only to work on their PlayStation muscles, gathering, pointing and snickering at my nearly empty bars.  I’d like to see them try this with 70% of their motor neurons tied behind their backs.  Then a toddler strolls up, lifts my bar with two fingers, and retrieves a wayward Cheerio.  Perhaps a bike ride tomorrow.  Even if it blows.

Day 146, March 19, 2011.  I keep asking myself, "why Leadville?"  The answer keeps changing, but it's never about the buckle.  It is about the sweatshirt.  Not really, but they are cool.  Today, Leadville looks like something that will shove hard against us, but can also lift our spirits -- higher, even, than it did when my health was not an issue.  It's a whole family and team project.  We have to figure how to fuel me when I can't chew efficiently and have relied on solid foods in the past.  I can't reach into jersey pockets because I've lost range of motion with lost shoulder and bicep strength.  I can't squeeze traditional water bottles, so we'll rely on a camelback and hopefully find a bottle substitute for holding fluids.  With the flagging strength of my hands, what if I flat or break a chain?  That one, by the way, still has us stumped.  What if it's a cold or wet or wet and cold day -- how will we keep my hands warm enough to do their jobs?  A lot of things will have to go very well to finish before dark, but, based on how things went last year, I can be completely confident our crew will be the best on the mountain.  Leadville stories that don't include mechanicals, barfing and crashing are boring anyway. 

The challenges I face for this year are nothing more than inconveniences, though.  For some people, ALS proceeds with harsh speed -- first symptoms to near complete disability in a matter of months.  I'm riding for those folks, and I hope some of the Leadvillers who read this will join me.  Hit the "Sign up/raise $" tab to see how easy it would be to help.  I'm also riding for my family/crew.  We're going to accomplish something we shouldn't be able to make happen.  And the sweatshirt.  Oh yeah. 

The week in Park City was hard on my hands and arms.  It was a bit of a relief to air up the tandem (can still do that), hop on and slurp from my camelback while clicking off 30 windy but flat miles with Jean today. 

Day 147, March 18, 2011.  Travel day.

Day 148, March 18, 2011.  Odds are THAT DAY is coming, but it is not today!  Last Spring, I tested my arm strength every other day in the weight room, fearful that the phantom weakness I imagined was real.  I knew it was as I struggled with pull-ups over the course of a month.  I haven't been there with my legs yet, but I'm constantly observing and testing.  To call my skiing this morning "atrocious" would be an understatement.  Over the course of three hours I became nearly convinced today was the day.  I've given up on contact lenses, which I typically wear under my ski goggles, because my shaking fingers have become weapons of self-mutilation when used near my eyes. This week I've worn glasses under my goggles, and, with the sun shining this morning, I opted for prescription sunglasses.  Late this morning, while riding a chair lift, I noticed my skis had become narrow.  In fact, the whole family was skiing on skinny skis, and, it seemed, there was visual distortion everywhere I turned.  I went back to the hotel, and Jean and I took turns poking me in the eyes until I had one contact in each.  Guess what happened when I got back on the mountain . . .?  My balance was fine, and my skis were no longer skinny.  Sheesh.

 


Day 149, March 17, 2011.  I learned to ski in 1969.  It took until 1986 for me to get to a place in life where I could afford to pay for lift passes.  Since then, I've skied 25 to 70 days a season (the latter being a result of an early midlife crisis).  The best skier I've ever met is my 16 year-old son (photo).  Today was the first day of our Utah ski trip where he could kick me around all day, and he did.  Mid-morning, after a very badly-conceived turn, I found myself in a heap on a steep, narrow chute with my ski tips wedged against a boulder and my tails stuck on the uphill side of an aspen.  If I extended my legs to push my torso uphill, my Andy-Schleck-arms couldn't generate the strength to get me upright; and if I compacted myself into a ball, my skis seemed to sink deeper into the granite.  I thought about trying to release my bindings, but doubted I could muster up the arm strength, and, more importantly, I felt there was way too much new snow for that to be a good idea.  Chewing off a hand like Aaron Ralston didn't seem to offer an upside, and Jimmy was 300 vertical feet downhill polishing his gold medal.  It's one of the first times I've gotten mad about ALS -- not at anyone or anything; just mad.  Once I squirmed my way out of the mess and had a few minutes to recover, I got over it.  That's the only thing to do.  We have today (almost) guaranteed, but that's all that's reasonably certain.  Why waste a day being mad, especially a day skiing?  Someday, hopefully a long time from now, I'll read this and say "those were the good days".  May as well look at it that way now.


Day 150, March 16, 2011. My fork felt heavy yesterday because I was curling my ski poles all day.  Today, I let my hands hang except on the steeps.  Much better result by hot tub time.

Day 151, March 15, 2011.  About a year ago, a 45 pound bar with a 45 pound plate on each side seemed suddenly heavier.  A few months ago, my left wrist buckled and I dropped my mountain bike trying to put it on the roof rack. A few weeks ago, my 15 pound road bike no longer felt light.  Tonight, my fork felt heavy.  Good thing I won't be required to swim at Leadville.  I keep looking at photos in Velo News, grateful to note Levi Leipheimer, who generates no fear when he exposes his guns, won Leadville last year. 

Day 152, March 14, 2011.  I wrestled with a knife and fork tonight trying to cut ravioli.  If I'm going to finish Leadville, this theory has to be correct:  An infant will grasp your finger from day one, and fine motor skills come later.  As skills go away, perhaps they do so in reverse order.  If so, my grip will stick around until my arms are almost gone.  Will I be holding my fourth Leadville buckle five months from today? I wouldn't put my 401(k) on it, but, so long as I don't have to play the piano or knit while I'm on the course, I think I have a good chance.

Day 153, March 13, 2011.  What did I do to deserve this?  A week (kids' spring break) skiing with my dad and his wife at Park City.  This week will be active rest.  Also, I'm going to learn how to use the voice recognition software for my computer so I don't have to type.  My forearms fatigue quickly while typing and my fingers sort of go their own way.  The only problem with the voice recognition thing is whether I can speak clealy enough for it to recognize my voice. I'm also going to use this week to see whether my daughter, Abby, can "teach me how to dougie".

Day 154, March 12, 2011.  OK, I’ll take smaller bites.  Jean and I settled in for a movie and pizza last night.  My first bite got lodged in a no-man’s land halfway down the pipe.  911 call, paramedics (who, by the way, don't know what ALS is . . .) and a second visit with the offending chunk of pizza (not in that order).  I shouldn’t attribute this entirely to ALS.  True, my chewing is weak, I get bored and often swallow too soon.  Indeed, upon careful inspection, this particular piece of pizza was not really chewed; it’s more accurate to say it was dented.  However, this morsel was a dumb size for anyone.  All better now.

Today was a weightlifting day.  Conventional ALS wisdom is a muscle under attack can’t be strengthened.  So, the plan here is to lift in such a way that my loss of strength occurs more slowly.  Of course, because I can’t travel the road not taken, I have no idea whether it’s working.  What is certain is that the line of my lifting performance graph is steep enough to ski.  Each day in the weight room is therefore a bit of a swift kick to the sugar lumps.  Today was no exception.

Day 155, March 11, 2011.  In terms of physical abilities, every day with ALS is a bit worse than the one before.  Of course, what this means is every morning when you wake up you are about to experience the best day of the rest of your life.  How awesome is that?!  When you think about it that way, it's not really very tempting to screw up or waste a day.  Today, after work, there was a big load to take care of -- we're leaving town tomorrow for Spring Break.  Should have packed.  Should have bought groceries, and so on.  70 degrees, and not a cloud in the sky led us to 30 miles on the tandem on a flat course at a modest pace.  Today was my first day with half-fingered gloves in many months.  I sure prefer the dexterity over even very thin full-fingered mitts and I got to pretend like my hands are getting better.  That plus a nap made for a very good day.  Time to shovel the ski stuff into the truck.

Day 156, March 10, 2011.  "Don't Fear the Reaper".  This is not as bad as it sounds.  The "Reaper Ride" is an Albuquerque tradition -- a training ride/race every Tuesday and Thursday at 12:10 p.m.  The format is always the same.  The group rolls east out of Albuquerque, and, within 800 meters, it's game on. The course follows Route 66 to the Village of Tijeras, there's a sprint for the green sign, everyone re-groups, then same thing going west.  The level of effort can be ridiculous.  The highest heart rate I've ever recorded popped up during a westbound Reaper sprint in April 2009.

My legs are twitching fairly regulalrly but not as violently as the biceps twitches that began in 2008.  That aside, I've felt like my legs and lungs have been basically unaffected by ALS (so far).  The proof, however, would be in the Reaper pudding -- my first Reaper of 2011.  I've always been able to hang on to the Reaper pace, but just barely.  I figured if I could avoid getting dropped, that would be a very good sign. Short story, it was a good day.  My "Check Engine" light came on, but only twice.  The second time, it even flashed dramatically as my breathing was severely labored, my arms and hands went numb, and my heart rate hit its redline.  More good news -- my "saliva management" issue first surfaced during an early 2010 Reaper.  Over a year later, it was not appreciably different today.  On the other hand, my hands and arms made me a bit shaky, and my ability to shift gears quickly was unimpressive in a racing environment.  These are merely hangnails in the grand scheme.

So how well does the Reaper translate to Leadville fitness?  Not well at all, but it has to be a good sign that I didn't have to call a cab to bring me home from Tijeras.

Day 157, March 9, 2011.  A 30 mile snot-fest.  The same muscles that support speech also control swallowing and, um, saliva management.  Some days are better than other depending upon wind, temp, what I've eaten or other factors.  A web of high viscosity nasty stuff wobbles around in my throat like the ping pong balls in a bingo machine.  I can't quite get it to come up, and I can't get it to go down.  If I try just a bit too hard to make it come up, I gag.  On more difficult days -- like today -- in order to manage this situation, I spit, gob, hawk loogies, cough and blow snot rockets.  While it's clearly a traffic hazard, I consider this a very minor inconvenience . . . unless I'm on the tandem, with Jean less than a foot behind me.  Then I have the added challenge of trying to make all this stuff fly off the front of the bike while we're rolling at highway speeds.  Beautiful day with a tailwind while the mountains were on our left.

One of the great things about ALS -- at least at my stage -- is you don't necessarily feel sick.  I do have fatigue, which I treat with naps, but the muscular effects are very specific, not systemic.  So I felt great during our entire ride today.  Too bad I can't figure out a way to practice law with my quads! 

Day 158, March 8, 2011.  Day off.  No work, no ride.  My sister-in-law, Maureen, came by with a little device that will allow me to button shirts. I stared at it for a long time wondering what else it could do.  I ruled out having it double as a flosser.

 


Day 159, March 7, 2011.  Three days, three bikes.  Today I’m on my new Felt Z-2 road bike.  Like the tandem, it has a second set of brake levers.  Shifting is unbelievable. I have the new Shimano Di-2 electronic shifters.  A light touch on the levers, and zzzzft, my gearing is perfect.  When it works, that is.  About ten miles from home, a plug came unplugged and the rear shifter quit (pictured, right).  The plug is a tiny four-pronged thing that has to be lined up just so.  I have the dexterity of a yak, so, after wrestling with it for five minutes, I pedaled to a nearby gas station where I found a man sadly watching the price window on the pump while he filled his U-Haul.  After I explained how my fingers don’t work so well, and after he seemed comfortable there were no weapons hidden in the spandex, the nice man plugged me back in, and I was back on the road.  35 miles, 2,500 vertical feet of climbing.  Leadville has over 12,000 feet of climbing.

Day 160, March 6, 2011.  Jean and I have a late afternoon date on our tandem road bike.  Road bike shifters and brakes are located way out on the front end of the “ram’s horn” handle bars.  This poses two problems for me.  First, my left hand is too weak to reliably operate the shifter.  Second, my muscles in my neck and back are shrinking, so a forward position on the bike causes fatigue.  My friends at my bike shop, Sports Systems, to the rescue.  They’ve mounted a shifter that’s easier to reach and operate, and they’ve added a second set of brake levers on the flat part of the bars (pictured, right).  Genius, again!  25 miles on the road today.


Day 161, March 5, 2011.  It has begun.  Leadville has invaded my dreams.  I woke up at 4:00 a.m. today in a cold sweat.  In the dream, I was 50 miles in, at 12,500 feet above the sea.  My split time was fine, well within the 12 hour time limit pace, but the wind  was howling, sleet was blowing sideways, I had two flats.  And I was naked.  By comparison, my training ride today was fabulous.  Two and a half hours mountain biking in Albuquerque’s foothills.  ALS has made my hands and arms weak.  Fine motor skills were hit first.  I can’t button my shirts, so I wear sweaters.  My grip, however, is hanging in better.  What that means for my mountain biking is traditional thumb-activated trigger shifters won’t do the trick.  This, I learned last Fall when I took my left hand off the grip to shove the shifter with the heel of my hand at a moment where I needed two hands on the bars, if you know what I mean.  I’ve recovered from that  crash, and now I have shifters that are activated by twisting the grips (pictured, right).  Genius!  Then, a baseball double-header (Jimmy’s team won one and tied the second with a game called for darkness), and a soccer game (Abby).

 

Days 165-162, March 1-4, 2011.  See Day 166!!

 

Day 166, February 28, 2011:  "Yippee/oh s***!"  Entry into the Leadville Trail 100 is by lottery.  The race has become enormously popular in recent years due, in large part, to the participation of cycling royalty.  Lance Armstrong launched his 2009 comeback by appearing in Leadville in 2008.  What could make LT100 more popular for 2009?  Armstrong put out a great effort but did not win in '08!  2009 was a rematch (which Armstrong won); and the 2010 title went to Armstrong's Radio Shack teammate, Levi Leipheimer, who came to Leadville between the Tour de France and the Tour of Ireland.  Thousands enter the lottery and only a few hundred get in from the drawing.  You can up your stock in the lottery by volunteering to help organizers, which I have done each year starting in 2008.  To a mountain biker, entering Leadville is like ordering a 72 ounce steak that's free, but only if you eat the whole thing.  E-mails went out at 8:00 p.m.  I'm in -- yippee/oh s***!


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