Oso High Endurance Sports -- Biting Back at ALS


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44 Days to Acoma: Outriding ALS!

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

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Day Zero, September 25, 2011.  We spent most of last night debating the pros and cons of 50 miles versus 100 miles.  After we were unsuccessful in resolving the issue through negotiation, we resorted to a coin toss, which went in Jean’s favor.  That suggested we would do the 50 mile route; however, Jean relented to my pathetic reaction, and agreed to ride the full 100.

Here is an odd thing: yesterday after the mountain bike race, continuing through this morning, I have not been able to raise my hands over my head.  Quietly concerned about what this might mean in a 100 mile ride, we drifted off to sleep.

We revisited the 50 versus 100 decision when we woke up this morning, finally deciding to head for the starting area about 20 minutes before of the race was due to start.  Somewhat properly fueled and geared, we rolled casually to the line at about three minutes before "go".  This kept us from realizing how cold the morning was as the sun slumbered beyond Mount Taylor.

Within the first few minutes we went off the back of two groups of higher achievers, with our … ahem … domestique, Tim Holm, dutifully in his place ahead of us.  We buzzed steadily over the first 20 miles in just under one hour.  The cold had taken a toll, however, as I found my fingers would not operate the shifters reliably.  One particularly bad moment occurred when they balked at my request to give us our granny gear as we hit the meat of the only significant climb on the course.  Without the luxury of the granny, we had no choice but to pour on more coal.


Meanwhile, back at the casino, Jimmy, Abby, and seven of their friends were just getting moving on the 25 mile course.

At the top of the climb, we stopped to grab a snack, then began what should have been an effortless five-mile descent, only to discover God had turned on the wind machine.  We bashed our way into a significant head wind from mile 25 all the way to a turnaround point at mile 62.  By this point, I was very happy to have worn my head keeper-upper device, but I was not in any distress.  My hands and arms were also doing well, in part thanks to having a reliable road surface that frequently allowed me to sit straight up, with my hands off the bars.  That Jean didn't get off the bike in order to thumb a ride says something. 

By this time, back in Albuquerque, hundreds of people were participating in the walk to defeat ALS, including over 70 people associated with Modrall Sperling (under the then banner "let's kick some ALS").  I am a self-indulgent jerk for not being there.  With some luck, I will still be walking well enough a year from now that I can join them.

From the 62 mile turnaround point, we basked in a flat or downhill tailwind all very way to the finish.  Our average speed of 18 mph (including time spent lollygagging at rest stops) brought us to the finish in 5:35:33.  Not too shabby.

Things that make you go "hmmmmmmm …” Remember how I couldn't lift my hands over my head last night or this morning?  Apparently, all my ALS-weakened arms needed was a bit of dehydration, malnutrition and five as a half hours on a bike, because I was able to wave to our adoring fans with ease after the race.  Hmmmm …

At the finish line, our entire crew presented us with a beautiful piece of Acoma pottery they had all signed.  Between the kids and us, we raised about $3500 for ALSA in connection with our “ride to defeat ALS.”  Thanks to everyone who supported our efforts by reading this blog and/or contributing cash!


We could not have done the event without the help of our … ahem … domestique, Tim Holm, or our friends Kim Blueher and Pauline Esquivel-Lucero.  And the guy with a backseat full of warm Gatorade sitting at the side of the road at mile 62.

Day zero.  We all know what that means.  What's next?  Four years in a row, we have participated in El Tour de Tucson, a 5,000- bike, 109 mile race in November. Last year, at the finish, we collapsed into each other's arms, blubbering about how we would never get to do it again.  We'll just have to see about that …  Voila! “50-Something Days to Tucson”!!!

Day 1, September 25, 2011.  The Squash Blossom Classic Screamer.  On very short sleep, The People's Truck picked up me and Jean at 6:30 AM.  Off to Gallup.  Damian Calvert, and Jens Nielsen, Donn Cole, Mason Calvert and us. 

Gallup's former mayor is a ridiculously nice guy named Bob Roseborough.  Bob became involved in the Oso High mission when he read about the Oso High mountain bike race and made a very generous contribution which earned him the title of "sponsor".  Bob asked me to serve as the "Honorary Grand Marshall" of the Screamer.  Mountain bike racing is what we make it, which is to say we often make stuff up.  Which is also to say I may be the very first "grand marshall" of a mountain bike race anywhere in the world.  And that is without even getting to the honorary part. 

Bob introducing the HGM.

It probably goes without saying that the grand marshall counted backward from "five" to "go" before the start of each race, but I did so much more!  Actually, even though I was racing (and therefore abandoned my job before the start of the men's cat 3 race), my job as the HGM taught me that it is fun just being around mountain bike racing.  That may come in handy when next season gets going.

The cat 3 course was not very technically difficult.  Good thing.  Nonetheless, I managed to spend a fair amount of time off my bike admiring frightening things such as 3 inch drops.  The first mile was on an uphill dirt road.  No problems until we hit the single track and the trail turned down.  At that point, I became a serious trail hazard.  When I was in "race mode", the wobbling in my legs made the bike feel like I was ripping through a boulder field.  To keep the bike quiet, I had to pretend I was out for a joy ride.  Then a 12 year old wearing sneakers and riding a K mart bike would blow by me.

Mason Calvert (still 10 years old) went by me before the halfway mark.  "Way to go, Schneebs!", by which he meant "buh-bye".  Then it happened.  A very large person lumbered past me on a fairly easy downhill.  He was stressing his bike’s every weld, nut, bolt, spring, link and molecule of rubber, aluminum or paint.  Indeed, the load limit of the desert itself was in jeopardy.  I couldn't take it anymore.  I put the hammer down, took some risks, wound up face down in the dirt with my shorts tangled up in my handlebars (but only for a minute), and managed to claw my way to the finish earlier in time than my grand colleague.  Fourth place and out of the seven old farts in my race.  With that, I retired from mountain bike racing.


At the awards ceremony, not only was Damian presented with the cash booty for his win of the pro race, but he also received a spectacular Zuni bolo tie, which he immediately hung around my neck to thank me for my invaluable (and I mean that) services as HGM.

Off to Acoma!  And, I hope, a nap.

Day 2, September 24, 2011.  25 years, 267 days.  A bit more than half of my life I was a lawyer at Modrall Sperling.  Today was my last day.  Throughout, I felt a bit like I was going to hurl.  I actually worked most of day, I finished out the oldest case on my desk, and dished off another.

Sunday is the Walk To Defeat ALS.  We will be at Acoma for the bike race, while about 70 people associated with the firm will be walking for me at our baseball stadium.  The least I could do was buy some pizza for lunch.  So I did.  About 30 of us gathered for a thoroughly unhealthy midday snack and a talk about the weekend.  I tried to talk to the group and found myself getting choked up.  It was then I decided there was no way I could actually deliver the retirement speech I had planned for the evening. 

A bit over a month ago, we set tonight as the date for my retirement party.  I knew I would want to speak, but I gave only passing thought to the subject matter or the practical obstacles until this week.  I made some notes on Thursday evening and this morning, but how I would speak clearly enough to be understood remained low on my priority list until last night.  I tend to be more difficult to understand after I eat a meal or if I am laughing or otherwise emotional.  It dawned on me the combination of eating dinner with trying to tell funny stories amidst close-to-the-surface sadness might be a mess.  So, I tracked down an iPad app that would speak for me if necessary.  The downside would be I would have to type out every word I would say in advance, and my stinging delivery would be flattened by an automated voice.  Not only would this be a lot of work, but it would also make it difficult for me to correct the defamatory comments of those who would precede me.

Shortly before lunch, I was prepared to use “Plan B”, and shortly after lunch, and I was committed.

Jean met me at my office to help me clean up a few things, and to provide moral support on my way out the door.

The party was wonderful.  Ken Harrigan, Judy Fry and Brian Nichols all told stories that had some basis in fact (except the story Brian told about me losing the tickets to “Spamalot” in New York; it is true I used a bad word - repeatedly -but it was not me who lost the tickets.  And, as long as we are on the topic, it was also not me who made two nonrefundable hotel reservations for the same night at different Manhattan hotels.  Just saying).

Then, Tim Holm took over and gave a hilarious and sad and funny and bitter sweet multimedia speech that left no one indifferent about his talent for delivery.  A note to my kids: the PowerPoint presentation included some pictures that had been Photoshopped.  Especially the ones from the 1980s where I was shown wearing a cowboy hat and first generation Air Jordans.


Day 3, September 23, 2011.  More technical problems with my microphone.  I will spare you the details, but here is some fuel for the search engine: Plantronics microphones suck. Plantronics microphones suck. Plantronics microphones suck. Plantronics microphones suck.

So, I got a bit behind on blog entries.  It was a big week and weekend.  This was my last week at work, and things got busy closing out two old and very interesting cases.  Today, Thursday, I worked primarily from home and took a final mountain bike race training ride in the south foothills of Albuquerque.  It was a beautiful afternoon, marred only by my sketchy ability to maintain control of the bike on rough terrain.  Will this be my last ride on single track?  Well, no, given that I am racing on Saturday.  But aside from that, I will probably continue riding local trails with which I am familiar (so I can explain to Jean where to send the search and rescue people) at a somewhat easier tempo.  For old time’s sake, I cornered too tight against a cactus, and brought home a souvenir.

Jimmy and Abby both played soccer this afternoon and evening.  The Bulldog boys’ varsity took out Highland High School 2-1.  Abby's JV team won 10-0.  Then Abby was called up to play for the varsity team, which also won 10-0.  Highland has a good football team.

One more time: Plantronics microphones suck. Plantronics microphones suck. Plantronics microphones suck. Plantronics microphones suck.

 Day 4 (another math problem), September 21, 2011.  "The Frankenstein stroll".  The wife of a man with ALS mentioned in this concept in a letter to me a few months ago.  She was describing her husband’s gait.  I didn't really know what this meant until sometime in the middle of last night.  I was heading to the bathroom with my arms stretched out in front of me, groping in the dark as if touching a door frame would keep me from tripping over a dog.  My stride was unstable enough that, when added to the upper body presentation, my moon shadow was distinctly Frankensteinian.

I don't understand the physiology of what is going on in my legs.  In a static position, which some might call "standing up", my balance is fine on one or both feet.  However, when I walk, I weave noticeably and feel like I might fall to the floor at any moment.  All of this is less problematic at low speed.  I have put the pieces together, and I think I now understand "the Frankenstein stroll" is in my not-too-far distant future.

Back to communication.  One of my colleagues reminded me, after my "fire away" blog entry that communication necessarily involves more than one person.  Regardless of what the person with ALS wants, the other person may be completely uncomfortable diving right into the topic.  Both participants should be fully respected, which leads me to a modified rule for communicating with me: "fire when ready … if that's your thing."

People show the love in many ways other than sitting down to chat about someone else's health.  They give presents; they cook; they buy a beer; they go for a bike ride; they do a project around the house; they act completely normal; or, in the case of the particular person who set me straight, she makes a quilt.

Days 7-4, September 17-20, 2011.  We had a bit of a technology problem.  My microphone for the voice recognition program croaked over the weekend.  I am back in business today.  The plan was to race at the mountain bike race in Las Cruces this weekend, but I woke up Thursday morning with back pain that got worse over the weekend.  I have seen two chiropractors in the last four days.  One of them wore a tie, and the other ran from across the room and jumped on my back, screaming lyrics from a Molly Hatchet song.  One approach worked better than the other.

My friend, Tim Holm, took me out for a 55 mile road ride on Sunday.  He got me back into bikes seven years ago.  We have ridden together quite a lot during those years, and one of the unwritten rules is to always try to make it look easy.  It was not easy.  Mercifully, he stopped frequently, including one break when he bought a Hostess apple pie and a quart of milk for me.

I need to figure out a better way to put on a shirt.  I am thinking a couple of hooks, about shoulder width apart, on a door.  Open the shirt, hang it on the hooks, and back into it hands first.  Anyone have a better idea?

Day 8, September 16th, 2011.  On communication.  I have received a number of comments about the friend of mine who said “I’m jealous”, including one from the guy who said it (“I sound like a__”).  When it comes to talking about their condition, people who have ALS are as is different this from one another as anyone else.  Sometimes, even good friends don’t know what to say and therefore say nothing.  That works out great for a person who doesn’t want to talk about it.  My recommendation in general is to ask someone “do you like to talk about it?” That gives plenty of room for the person to opt out.  For me, it may be obvious from six months of blogs, I want to talk about ALS.  I want people to know what it is; I want people to know what it feels like; and I want people to be motivated to create a world without ALS. 

Within about two days, David Pokela (who completed ironman Wisconsin last weekend!!!) and Scott Gordon asked me questions that led me to begin writing this blog.  David asked “do you have a blog?” Scott asked “what are you going to do (like I had a responsibility to do something)?” it only took me a weekend to put those concepts together and come up with this project.

Yes, the rule with me is simple: “fire when ready!”

So, back to “I’m jealous”.  That’s completely understandable.  Even I am jealous of me.  I am 51.  I get to retire.  I feel great.  My kids are around and doing fun stuff.  My wife is my best friend.  I sound funny and my arms and hands are not particularly useful, but I am otherwise healthy.  Yes, I am heading down a road I did not choose; but if I didn’t have ALS, maybe I would have gotten mowed down by a city bus on a training ride Friday.  Meanwhile, people feed me and I get to pick the pizza.  Unless you know the future, who’s to say what is good luck what is bad?

Days 10 and 9, September 14 and15, 2011. I have been having more difficulty with my voice recognition software. The day 11 blog entry took over an hour and a half to write. Just as I was beginning to feel the communication world closing around me, Modrall’s technology department came to the rescue with version 11 of Dragon. Even when it listens to my wasted Sylvester the Cat voice, the program is approaching 90% accurate.

 I think maybe putting together a pair of half centuries so close to one another was a bad idea. The day after Flame and I went 50, I was useless. I took my first nap at 8 AM, and my second at 3 PM. Both lasted nearly 2 hours. With a day off – and I mean “off”  – Jean and I ripped through a  30 miler easily before she left for a long weekend  bender with her sisters.

A week from tomorrow, I will retire from the practice of law. Many lawyers never retire, and simply go face-down on the desk one day. So, I have that going for me. The practice of law is a challenging way to make a living. Years ago, the law was stressful, but every morning new clients were delivered with the morning coffee. Today, lawyers scratch each other’s eyes out in competition for business, and the stakes in litigation have become so high that trials are thought of as the  nuclear option and therefore rarely happen.

On Tuesday, one of my partners walked into my office and, clearly surveying our respective situations, said “I’m jealous.” Let’s break that down:

Door number one:  ALS: Amyotrophic lateral sclerosis is a rapidly progressive disease that attacks the nerve cells responsible for controlling voluntary muscles. Eventually, patients lose their strength and ability to move their arms, legs and body. When muscles in the diaphragm and chest wall fail, patients cannot breathe without ventilatory support. Most people with ALS die from respiratory failure, usually within three to five years. About 10 percent of patients survive for 10 years or more.

Door number two: practice law for 25 more years.

Look what the demise of the three martini lunch has done to the profession.

Day 11, September 13, 2011.  300,000 Americans who are alive today will die from ALS.  That’s way more people than have been lost in the history of aviation.  Also more than the number of people who have died in all alcohol related motor vehicle accidents in the US since the 1980s.  When you think about it that way, it doesn't sound all that rare, does it?

Meet Flame, my road bike.  It is the latest in a long line of Flames, dating back to Flame I, who got its name from a moped in a Jim Stafford song, "Cow Patti " (go ahead, click on that name).  Flame VIII is a Felt Z-2.  We bought it in March for three reasons: electronic shifting (very easy on the fingers); relaxed geometry (easy on the neck and shoulders); and cool factor.

Albuquerque has a 12 mile, uninterrupted stretch of dedicated bike path along the Rio Grande.  Flame and I went four lengths today.  50 miles in 2 1/2 hours, half of that with Tim Holm.  As mountain bike season winds down, and I spend more time on road bikes, the blog material will hopefully dry up a bit, as there is less blood in road biking.  Today I listened to music, slurped on milk and smoothie, and spooked the same roadrunner four times.  Woo-hoo.  Watch Cow Patti again.  Or, if you are over 18 and don't mind bad words, click here.  If you are under 18, do NOT click there.  Especially if you are one of my children.  I mean it.

Day 12, September 12, 2011. 

Saturday's heroes:

  • Randy McDonald is a former law partner of mine.  He had been following me (for the entertainment value, no doubt) when I went into the tree.  He helped me out of the branches, and even followed me for a while to see if I would do it again. 
  • Hailey Fortin is a 13-year-old racer who had been on Randy's wheel.  She also stopped to help clean up the mess. 
  • Brent Gillespie promoted the race, but also told me he and his friends plan to put together a road race in 2012 to benefit the fight against ALS. 
  • Whoever was soulfully singing Swing Low Sweet Chariot during an extended walk in the mud bog.

Sunday’s hero:

  • Jean, who is picking up a good piece of the power gap I am creating on the tandem.

Day 13, September 11, 2011.  Sometimes you’re the windshield; sometimes you're the bug.

 -- Dire Straits

Lately, mountain bike racing has been the windshield and I have been the bug.  What a lovely change of pace to get out on the tandem with Jean for 50 delicious and uneventful miles.  We didn't hit a tree, fall into cactus, or even have to wash the bike when we got home!  No head injuries; no sprains; no blood.

Day 14, September 10, 2011.  Every bike racer has a story from every bike race.  I have four short stories from today’s mountain bike race in the mountains east of Albuquerque: The Roadie.  The Rocks.  The Weather.  The Mud.

  1. The Roadie: The Zen of Being Cat 3.

Early in the race, I was bumping along in a rock garden.  A rock garden is a place (almost always on a mountain bike trail) where God grows rocks until He is ready to spread and them around where He needs them.  A specific rock garden draws its name from the geologic type of rock, plus the common sense appearance of the rock.  Like so: "limestone baby heads”, “granite tombstones” or “sandstone poker chips”.

I had drifted in toward the back of the men’s Cat 3 field, which means the faster women in Cat 3 were closing on me.  I was rumbling through a small but growing garden of fractured limestone tombstones when I thumped to a stop.  From behind I heard an exasperated "duuuuuuude!!”, which means "you must not know who I am -- how dare you stop here, you son of a motherless goat!"  Within a handful of seconds, she was gone.

Mountain bike racing is organized around ability categories: Pro, Cat 1, Cat 2, and Cat 3.  Generally speaking, the fields get faster as you move from Cat 3 to Pro, therefore, the pros get to start first so they don't have to fight their way through slower racers at the beginning of a race.  At most races, the final two categories to leave the start are Cat 3 men, followed by Cat 3 women.

There are detailed rules about how to qualify for an upgrade from Cat 2 to Cat 1 or from Cat 1 to Pro; however, to upgrade from Cat 3 to Cat 2, all you have to do is say "I would like to be Cat 2”.  Cat 3 is for gaining basic experience before upgrading to the longer and faster Cat 2 races, or for racing for giggles only.  If you find yourself regularly winning races in Cat 3 and don’t upgrade, people will make fun of you.

The woman who called me “dude” in an insulting way doesn't know me, has no idea why I am racing Cat 3 in fancy Cat 1-type matching stretchy clothing, and has no idea why my bike was making that rat-a-tat-tat-tat sound while I tried to calm my jackhammering legs.  I don't think she hates me because I have ALS (I do think she was wound a bit tight for Cat 3).  It seems to me if you find yourself in a Cat 3 race, offended by people riding slowly, erratically, stopping for a snack, etc., there is an obvious alternative: road racing!  That was an easy cheap shot, I know.  The solution, of course, is to upgrade two Cat 2.  Cat 3 and the moment I described are a metaphore and an illustration. Nothing more.

I am not a philosopher, not even a mountain bike philosopher (which requires weed), but over the last 12 months, I have raced in Cat 1, Cat 2, and Cat 3, in that order.  That is an odd racing career path trajectory, and I have paused to consider what this means.  While racing Cat 1, I tended to eat right, drink plenty of fluids, sleep right and go like hell.  In my first race after retreating to Cat 3, I did the same, and I wound up over my bars twice, beat up , very dusty, and hearing "dude, are you okay" repeatedly.  Since that day, I think I have done a better job of embracing my Cat 3 races for what they are.

The deep thought here is being Type-A does not mean we have to aspire to Cat 1 in everything we do.  Today, for example, I'm going to reorganize part of my garage.  But I am going to do it like a Cat 3 garage guy, which will leave room watching some football.  Two weeks from now (my premature retirement date), I will begin an endless summer slacking, so I may as well get some practice.

2. The Rocks. 

We live in the Rocky Mountains, so I shouldn't be surprised …  Shortly after my encounter with Dude Girl, I overcooked a rocky descent and wound up in the prickly embrace of a pinon tree.  The picture is a frame shot from my helmet cam, which is now mounted on a chest strap.  A "mammary camera”, or “mam-cam”.  My sleeves are black, as are my gloves.  There is some good news in this picture.  Although I am well into the tree, I have maintained grip on the bars with both hands.  There is also some bad news in this picture. I am in a tree. 


3. The Weather.

Limestone is the predominant component of the surface rock shield in Tijeras.  An inconvenient characteristic of limestone is when lightly coated with soil (perhaps a thin layer of clay left by mountain bike tires), a bit of rain makes it perfectly frictionless.  The rain began shortly after I was freed from the tree.  I no longer wear contacts because my hands shake so much, I am as likely to put a contact in my ear as I am to get it into my actual eye.  So, my sunglasses are prescription lenses.  Sweat plus humidity plus low temperature plus slow motion equal foggy lenses.  Having already demonstrated less than maximal competence on relatively dry rock, when I could see, this was not a positive development for me and led to another boo-boo. See mam-cam photo.


4. The Mud.

If this had been a football game, the mud would have drawn a 15 yard penalty for piling on.

The second half of the course passes over a clay surface known as “caliche”. Caliche is a Spanish word meaning "not on a bike, hombre”.  After several minutes of rain, the dirt turned into the consistency of creamy peanut butter.  So, there I was, pushing my bike through a peanut butter bog, with clay, mud, rocks, sticks and other racers’ bike parts accumulating in my frame and drive train.  The bike became too difficult to push at one point, and I looked back to discover the reason: my rear wheel had completely locked from the aggregation of goo.   See mam-cam photo.


 The camel’s  back was broken, so I took my DNF after completing only one of two scheduled laps.  Friendly faces were waiting at the start/finish with high fives, hugs and their own race stories. As with the race at Red River, I was amazed by the show of support I received from other racers.  Hardly a bike went by (and there were many) without some positive shout out.  Every time I went down (and there were several) someone stopped to help untangle me from my bike or a tree, whichever was the primary problem.  There are only two more mountain bike races for me this season.  Both are on high desert courses, which seem best suited to me at the moment.  Until the insurance company tells a promoter otherwise, I will keep showing up to see what happens. 



Before:                                                                                          After:




 Day 15, September 9, 2011. Pulmonary Function Testing Day.  The plan was to pre-ride the race course for tomorrow with Damian Calvert.  That would have been an adequate test of my lung function, but Damian became concerned his bike would get dirty.  What a roadie.  If you are a genuine cycling rival of Damian's,(a) you probably do not have lung function problems; and(b) you should use this against him (send me an e-mail -- I have proof).  With a manly pulmonary function test thus denied, Jean and I went to the University of New Mexico Hospital for a PFT.

According to a group of smart people with many post-name initials, in the context of ALS,

Pulmonary function tests (PFTs) reveal the degree of respiratory muscle involvement, the progression of symptoms, early recognition of reversible complications, pending respiratory failure, and the need for appropriate therapies as desired by the patient.

If you could have figured that one out on your own, put your hands up! 

Would it be inappropriate for a gynecologist to wear a banana hammock/grape smuggler/European man's bathing tight thing during a gynecological exam?  There was something arguably analogous that made me chuckle as I was all geared up, scuba-style, for the lung testing. But I digress.

All results were within the normal range ("normal" for all people, this not just ALS patients), with values as high as 126% of the predicted scores for a 51-year-old, 164 pound, 6 foot tall white guy.  The "white guy" piece of the value interpretation guideline sounds like a scientist at Duke had some grant money lying around and decided to look for an excuse for his marathon performances, doesn't it?

Anything normal is awesome. 

 Day 16 (my math was a little off...), September 8, 2011. It's been a while since I carried on about lifting weights.  Today was one of those days, and since it was a mixed bag instead of uniformly humiliating and depressing, let's discuss.  Today I did max testing, and, for the first time in over a year, I have no measurable decline in the weight room over the course of a month.  The numbers are unimpressive, but I'll take a plateau whereever I can find one.  One more thing: when I quit running and picked up biking as my primary vice, I stopped lower body weight lifting with the exception of my calves.  So, I know my pre-ALS numbers for calf extensions.  During the ALS poop storm, I got away from even worrying about my calves.  Today I checked out my calf strength, and it is the same as pre-ALS.  Wahoo.

If I had only picked another time to go to the gym, that might have been the end of a not so bad trip to Satan's  workshop.  But, of all the dames in all the gin joints in all the world, she had to walk into mine.  I chose a very low demand time of the day to show up.  There was no one else in the weight room at the time.  My routine requires use of a fairly heavy flat bench.  It has wheels on one end, and a handle on the other so it can be pulled like a wagon.  With my grip limitations, it has been a long time since I moved the bench as God intended.

My technique is to lay both hands on the handle, lift quickly with my legs, and hug the leg of the bench with both arms.  With only the wheels on the floor, I can stagger around the room, backwards, to the rack I use.  Releasing my hold on the bench disturbs the peace.  The whole thing is an ergonomic disaster and not really all that graceful.  Today, I had privacy for my dance.  Then She arrived.

A 60-something of an average fitness, She picked up another bench by the handle with one hand and began moving it into position.  She hung a left a bit quickly, and the wheels on her bench got tangled up with another bench.  Right in front of me.  I took a quick, nervous glance around the room.  No large, attentive Germans had materialized.  Pretending I didn't notice was out of the question, as her effort to free the bench put my toes in danger.  In a predictably clumsy and not terribly effective way, I helped her get moving again.  She could have left it there with a "thank you", to which I would have responded with two or three syllables not including any “s” sounds.  Instead, while pulling away with one hand on the handle, She used the other to slip a dagger into my ribs: “I guess I shouldn't be lifting weights if I can't even move the bench, huh?”  Sweet.

Tomorrow I am taking a pre-ride on Saturday’s race course with Damian Calvert (Damian has promised to tie one lung behind his back).  Tonight I received this word of caution from my favorite chiropractor, Brian Short:


I pre-rode this course today and if you haven't had a chance to do so, I gotta tell ya that there are some pretty gnarly sections with a lot of rocks that will require some grip strength.  Maybe you should go check it out first before you commit to riding it.  Don't want to see anyone get hurt. 


Game on.

Day 19, September 7, 2011. Today, we got in an early 32 miles with our neighbor, Tom. Jean and Tom chatted about UNM, while I spent most of the otherwise very pleasant ride gargling phlegm, probably because I had about a quart of milk within a half hour of our departure.  The most interesting thing about the morning happened before we left the driveway.

Jean was running late, so, when Tom arrived, he helped me with final preparations for the ride.  That meant stuffing a bit more air in the tires, drizzling lubricant on our chains, and-- the zinger-- putting on my gloves.  Due to the condition of my extensors, my hands will not go flat.  Also, to the extent they go flat-ish, they are very easy to bend inward.  Even wearing baseball batters' gloves (which open wider than most bike gloves), you can probably imagine how that plays out.  I hold my hand out straight, pull the glove over my fingers, and they all curl up.  They have to be straightened out one at a time, and aimed toward the correct finger of the glove.  Meanwhile, my thumb is outside the glove,drifting with the breeze, and has to be manually stuffed into the glove.  Once everything is properly aligned, someone pulls the glove up.  Usually, one or two fingers curl up again, and we repeat part of the process.  The right hand requires a bit less time than the left because the right is marginally stronger, and the whole process takes three or four annoying minutes.

Tom got an eyeful of this as he and Jean worked together on the project.  I don't think I was imagining it -- at one point, Tom's eyes (even hidden by sunglasses) were clearly saying "these people are going to die if they get on this bike.  Perhaps I should kick Doug hard in the nuts. Or maybe I should slash their tires."

Really.  Jean and I compared notes after the ride, and we had the same impression.  Happily, managing a tandem is a job primarily handled by the flexors.  The extensors are generally free to have coffee during a ride.  Even to a highly experienced cyclist, though, it must look quite frightening.

The day is coming when we will get off the tandem for the last time.  Today was not that day.  The trick is to stay focused on the rides we get, and worry about what comes later… later.

Day 20, September 6, 2011.  I have met my friend David Pokela only once.  I became acquainted with him through a Leadville e-mail group in 2009, David's rookie year at Leadville.  David is a lawyer in North Carolina with a young family, and we swapped ideas about preparing for Leadville with serious time limitations. After the race, I spoke with David by phone as he was cruising home across scenic western Kansas.  Without all the detail, David’s first experience in Leadville was enough to keep most North Carolinians on their own side of the Mississippi.  Like often happens, David found himself receiving IV fluid; unlike most, he received his before the race.  Remarkably, not only did David give it a go in 2009, he came back and rode Leadville in 2010.

On 9/11, this Sunday, David is competing in the Ironman Wisconsin.  He will swim a bit over 2 miles, hop on a bike for 112 miles, and then (for a warm down, I suppose) he will run at a marathon.  Anyone who has properly trained for an Ironman deserves an enthusiastic Wayne and Garth "I'm not worthy" bow.  Completing the race before the people selling pizza have gone home is otherworldly.

David signed on with Oso High to give the finger to ALS.  Have a look at his profile and please consider donating a few bucks to ALSA to recognize David’s effort.

The Tour de, Acoma is coming right up.  Our whole family will be riding 25 or 100 miles.  A group of Abby's friends will be riding and raising money, as will our friend Kay Bratton.  I think Kay wouldn't be offended to hear me say "if she can do it, so can you".  Have a look at Kay’s profile.  Please think about joining us.  The course winds through some of the most beautiful country in the Southwest, including part of the Acoma Pueblo that is the normally sacred and off-limits.  If you know the history of Acoma, it’s a wonder they allow visitors at all, especially anyone who has ever been to Spain.  The pre-race party will be in our room.  More info about the race at www.tourdeacoma.com .  Click here for the actual entry form (one comment about the race information on the website: they claim Acoma is only 45 minutes from Albuquerque.  I think that is by helicopter, so you might want to leave a bit more time if you will be in an automobile).   Sign up to raise money for ALSA by clicking here.  This will be away easier than tagging along with David in Wisconsin.

Day 21, September 5, 2011.  One day; three bikes.  Oh yeah.

Bike number one: 48 Pounds of Steaming Downhill Funk.  Up on the chair lift; down (slowly) on a sweet new Angel Fire trail.

Bike number two:

Oh, Superfly

you’re gonna make your fortune by and by,

but if you you lose, don't ask no questions why.

The only game in you know it is do or die.

Ohhhhhhh, Superfly

As usual, going up, up, up made me feel better about myself after an hour of down hill.

Bike number three: El Harley Davidson de Hermano-in-Law Steve.  If your hands work, ask Santa for one of these.


One of the documentary film guys must have enhanced the volume to pick up my voice at the Sandia post-race party: http://www.facebook.com/l/PAQAw8LRkAQDIwpw6CkxBusSxTfW74gqlrOzBans3mnTi6Q/www.youtube.com/watch?v=S0Euwu1Mcpc

Actual working link to last week's Albuquerque Journal article:http://www.chron.com/news/article/NM-attorney-juggling-athletics-as-ALS-wears-on-him-2152224.php

Day 22, September 4, 2011.  I had three working titles for this blog entry: (1) “The Power of Forgiveness”; (2) “You Can't Quit; You're Fired”; and (3) “Me and You is Like Batman and Robin”.  Number 3 won on the fourth ballot.

I ran track for 31 years.  With three exceptions, I ran the 400 m hurdles every year from 1979 through 2005.  I was not very fast, but I think I was as fast as I could be. I am and always have been a data dork when it comes to athletics.  There are ten hurdles in the race, and they are 35 m apart.  I can tell you the number of steps I took between every hurdle in each of over 125 races during the 26 years.  I studied video of hurdling, and I read everything I could on the event and applied it to my training.  In 1995, I began coaching at Manzano High School.  In 1999, I moved from Manzano to Albuquerque High School.  All along, I did my own training at the University of New Mexico track.

In 1999, the University brought in a new coaching staff, led by Matt and Mark Henry, who had won about a gazillion state championships at Albuquerque’s La Cueva High School.  The Henrys are arguably the most accomplished family of coaches in United States track and field history.  Their grandfather held the world's best time in the 100 in the early 1900s; their father coached UNM 50 years ago; their brother, Pat, has won about two dozen NCAA team championships at LSU and Texas A&M; Matt’s son, Kenny, is the track coach at Albuquerque's Cibola High; and Matt’s sons, Kurt and Kyle, are volunteer track coaches at Albuquerque’s Sandia high school.  These folks know their way around a track.  They are also among the nicest people I have ever encountered.

In early 2000, Matt and Mark asked if I would be interested in working with the UNM hurdlers.  Over the eight seasons that followed, I had nothing but fun in this “job”.  In 2007, the Henrys retired.  When UNM hired Joe Franklin, who is an exceedingly good guy, as the new head coach, I offered to continue.  Joe agreed.  This occurred before Joe hired his assistant for the sprints.  As all my athletes were sprinters with a specialty in the hurdles, I would be working closely with the sprinters’ coach.  It was a mistake to make this arrangement before either of us had met Coach Leo X ["X" is not Leo's actual last name. Some of what follows casts Leo in a true but not particularly positive light. Out of respect for Leo, I have therefore made it impossible to accurately identify him by using a fake last name, "X"].

Leo ran to the 400 at UTEP.  After college, Leo was a volunteer assistant with the program at UTEP.  When he came to UNM, Leo was still a world-class 400 guy with experience on the European circuit.  I was not a typical Division I volunteer assistant.  Track, particularly for men, is a dying sport in the NCAA.  This is an unintended and undesirable consequence of Title IX. Rather than expanding opportunities for women in intercollegiate athletics, many universities have elected to cut opportunities for men.  Somehow, this makes the Department of the Education happy.  A bottom-line for people with coaching aspirations is they face long odds and stiff competition for the dwindling number of coaching jobs available.  Beginning as a volunteer assistant has become something of and unpaid internship, and the volunteers in some programs are treated with all the dignity and respect given to medical residents as they sleep on cots and eat expired MREs.

I am not ashamed to admit my willingness to help came with selfish conditions.  The most important thing to me about spending my afternoons at the track was that I would actually coach.  I was never interested in holding a clipboard and a stop watch, yelling "go Lobos” while the athletes ran workouts someone else had written. 

Leo and I had many conversations about this over the course of three years.  Each time we talked, he seemed to agree, but often within 24 hours it would seem I had been talking to a Leo imposter.  After one such conversation in 2007, I wrote an e-mail to Leo confirming a training plan we had discussed.  Leo sent me an e-mail response that said:

“ Doug, Me and you is like Batman and Robin . . . Leo”

Leo was wrong, of course, because: (1), the pronouns “me”' and “you”' were written in the objective case; properly, “You” and “I” are in the subjective case, which means that they are used as the subject of the sentence; (2) “You and I” are a plural subject requiring the plural form of the verb “to be”, which in this construction is “are”; (3) Second and third person (you and she, he, it, him, her) are always placed before first person (I, me), so, the sentence should read, "You and I are like Batman and Robin"; and (4) the very next day, we were banging heads over the same training plan Batman and Robin had agreed upon. 

 By the end of the 2008 season, I had decided I would not return for 2009.  I talked over the issue with Leo and Joe, and it looked like we had a meeting of the minds that worked for all of us.  Very early in the 2009 season, Leo and I were again like ships passing in the night.  We had a repeat of the and of the 2008 seasons, and I agreed, again, to return for 2010.  That we had a match made in Chernobyl was obvious again early in 2010.  I decided I would grin and bear it through the conference meet but I was done.

 Two weeks before the last meet of the season, Leo called me from his cell phone at long jump practice to let me know he would take over working with the hurdlers for the "rest of the season” (i.e. two weeks).  My initial reaction was outrage (“you can't fire me; I was about to quit”).  My second reaction was that the timing couldn't be worse for athletes.  With only two weeks left to prepare for the Mountain West Conference meet, we were working on complex technical aspects of each athlete’s race plan.  To pull the plug on that at this point was just dumb.  Also, I despised the timing from a personal standpoint.  To be dumped at that point in the season suggested something very bad happened (like sleeping with the athletic director himself).

Coaching in Division I is a ruthless business.  It is the sort of environment where a coach learns he has been replaced before he knows he has been fired.  The sort of environment where a coach shows up for work and finds his key no longer opens his office door.  I felt I should be immune to that type of treatment.  Over the years I had been associated with the program, Jean and I had given significant financial support to the program, including paying for all of the hurdles.  I had secured five figure meet sponsorships from the firm. And I was treading swamp water in the ALS diagnostic process, which made me feel that no one should be able to mess with me.  The cell phone call was a nice alternative to showing up and finding my keys no longer worked, but after 11 seasons with the Lobos, I believed I deserved a pat on the back, which is different than having the door hit me in the ass on my way out. 

I held on to my anger for a long time.  In fact, until today.  When I constructed this blog entry in my mind, it was going to be loaded with sarcastic references to forgiveness.  I was going to close by saying something like "if you are 51 years old and not honked off at someone, you've had way too much massage therapy.”  And I was going to make it very easy to find my side of the story with Google by typing “Leo X Leo X Leo X Leo X Leo X Leo X Leo X Leo X” in the text.

So, Leo, my brother, me and you was never like Batman and Robin, but things worked out about right.  After the 2010 season, Leo went back to UTEP as an assistant.  I went back to coaching at Albuquerque High School, and, if my voice holds out for the 2012 season, I will have a 5'7" freshman hurdler to work with.  She's sleeping down the hall just now.

In much the same way as being angry about having ALS does nothing to make a day brighter, hanging on to an old grudge produces nothing positive.  Jean often says “you can be right, or you can be happy”.

Day 24, September 3, 2011. An inconvenient development.  The two primary types of muscles that control our fingers are flexors and extensors.  The flexors  help us to make a fist, while the extensors allow us to make a flat hand for waving, clapping, or other practical uses.  Typing is a dance of the flexors and extensors, as fingers move up and down the keyboard. 

Over the last two weeks, the extensor that controls my left middle finger has become nearly useless.  Back in the good old days before New Mexicans were allowed to carry guns in their cars, this would have interfered with vehicle to vehicle communication.  Today, however, the primary problem is that the middle finger types whenever any other finger types.  In the photo below, I am trying to make my hand flat. 

As you can see, none of the extensors are particularly awesome, but the middle finger droops like a fish hook off my hand.  Aside from typing, there are other issues presented by turning off the extensors. For example, I can no longer reach the left brake lever with my middle finger.  So, I have to take my hand off the grip, move my fingers to the lever, pull the rest of my hand back to the grip (where I do the same thing with my thumb due to the condition of its extensor), then clamp the whole thing down on the brake and grip. This is very safe in the garage.

Another problem is letting go.  Let's say I have a bottle of milk in my hand.  If I set the bottle on the bar, my sights locked in on the free buffet, and walk away, there is a good chance I will only partially release the bottle.  This may result in the loss of perfectly good milk.  Something must be done.

On that topic, I have an idea for a device that would act in lieu of extensors.  The device would keep the fingers extended except when flexed.  As I have envisioned it, and the contraption would look quite medieval.  Certainly someone has thought of this before.  Now all I have to do is figure out what words to type into Google

We are in Angel Fire for the holiday weekend with several Bannons and nine teenagers.  Probably a good time to go test my braking technique.

Tomorrow: “Me and You is Like Batman and Robin.” Don’t miss it.

Days 26 and 25, September 1 and 2, 2011.  “Suffering comes from resisting what is”. Buddha, Merlin Olsen, William Hung, your pick.  Also kind of sounds like Weezie Jefferson .  During this week in North Carolina, I played with the concept quite a bit.

I have mumbled about hypothetical 85 year old women in the weight room for over a year now. Tim’s mom is an actual 85 year old.  While Arliss and I shared the inability to open bottles of Ensure, I found myself receiving help from her with things like opening a stuck door.  At first, this got right under my skin.  I actually timed my battles with this doorknob to occur when Arliss wasn't likely to see the fight.  I thought through this at some point and applied the Weezie Rule.  Once I allowed myself to go with it, this low level stress point went away.

Tim’s younger sister, Susan, has some developmental disabilities.  We studied each other a fair bit this week.  On one occasion, I was armed with a fork, engaged in a fight to the death with my food under Susan’s curious gaze.  She turned away and corralled some food with the curve of her fork positioned horizontally on her plate.  As she accelerated the food across the plate toward her, she lowered her mouth to the edge of the plate, and the food hit the mark all Evel Knievel-like off the lip of the plate.  So, while I was in full-on resistance mode, Susan was, well, eating.

Does application of the Weezie Rule mean people with ALS should be resigned to simply bend over and take the spanking like frat boys? No way.  Pilots will tell you the things that push against us also lift us up.  On the other extreme, ALS is very capable of executing the rope a dope until we are tired, and then coming off the ropes with a fury.  So, put up the "full cure” Hail Mary, but while it is in the air, fight back with goals that are reasonable given what you have to work with.

  • Ride Leadville;
  • drink a whole glass of milk without dribbling on the table;
  • touch your toes;
  • invent some sign language;
  • live until April;
  • laugh at the crummiest moment of the day. 



*What would Weezie do?

Day 27, August 31, 2011.  "That's gonna leave a mark.”  And it did.  A day after my latest crash, my eye looks like I walked into the wrong bar and said the wrong thing about the wrong guy’s girlfriend.

There is nothing like riding a bike on a beach.  I don't know why I’ve never done it before, but I am sure glad I didn't miss it entirely.  There is no question but that I am growing unsteady on my feet.  It is very obvious when I go down stairs or if I try to walk fast.  If I keep it down to an antebellum southern aristocrat’s pace, I feel fine. The more wobbly my gait becomes, the more pronounced the contrast I am experiencing between riding and everything else I do.  I'm enjoying every moment on a bike more every day. 

We are staying at a beach house on an island in North Carolina with our friend Tim Holm and his family.  It occurred to me this morning that, for the first time since 2006, I am not training for Leadville.  I am not sure how I feel about that, but today, Jean, Tim and I rode the length of the island twice.  We stopped at a beach bar for milkshakes and water on the way back.  In three days, we've had ham biscuits, fried fish, hush puppies, perfect weather and each other.

Life is good. 

Days 29 and 28, August 29 and 30, 2011.  Holden Beach, NC.



Another zip code ...










Another bike ...













Another head injury.

Here's your mental video replay. Remember the female ironman triathlete staggering toward the finish, collapsing short of her goal, losing bowel control and being passed by another runner before she could crawl across the line? if not, you can use Pee Wee Herman running, but I'd way rather work with the triathlete.

Now, make the following changes with your cerebral photoshop:

  • insert a bike between her legs, but her feet are not on the pedals, and her hands are not on the grips;
  • have her break her fall with her left eye instead of her arms;
  • make her look a bit more male; and
  • erase the poo.

There you have it.


Day 30, August 28, 2011.     An Ode to Tandeming.

Forty miles flat 

is getting longer and steeper.  

The bike is gaining weight  

or my quads are getting weaker.

Albuquerque High School sports report: in four games this season, Jimmy has given up one goal, and, in that game, he had 18 saves.  Not a bad start.

Link to today's Albuquerque Journal article about this website!: Click here

Day 31, August 27, 2011.  Race day!  Bike racers get nervous before the start of a race.  After the early season butt whippings I took, I downgraded to the entry level category for every race except the hill climb at Taos.  My outlook on the races that followed was to ride hard, enjoy the venues and camaraderie of the race community.  Not really a recipe for anxiety and pre-race stress.

So, I have been surprised at lineup for these races that I have felt like I was next up for the firing squad.  Today was no different.  Out of curiosity, I paid careful attention to what I was experiencing.  A quick check of the field as we rolled our bikes to the start line led me to conclude I was the oldest fart in the group.  That meant all I had to do was finish in order to win my category.  There was no one else in the field I was particularly motivated to try to beat.  There were a couple of phenomenal kids I knew would be well into their happy meals before I finished, some locals, and some mountain bike series regulars.  No smack talking rivalry or prior loss to avenge.  It didn't matter.  I could hear the executioners’ guns lock and load.

About half way through the course (which was designed by a truly twisted sister), it finally occurred to me why this is so.  The dude behind me, breathing hard down my neck, is ALS itself.  How slow will I be?  Will I still be able to climb strong?  What will my breathing be like?  Will I be able to hang on to the bike down the hill?  How much different will this feel than last week?  Last month?  Last season?  ALS, it occurred to me, is just a bitchy roadie demanding that I hold my line.  Tune him out.

After that, I enjoyed every moment of the race (except a few of the downhill moments).  One of the things that struck me during the lucid part of the race was how much support I have for merely showing up and throwing down what little I can on the trail.  My teammates helping get me and the bike ready to race. And then there were things people said and did in the midst of battling a rude little course. “Way to go, Schneebs”.  "Hang in there, Schneebs.”  An overtaking Cat 1 racer putting his hand on my back and giving me a gentle shove forward.  Yeah, my teammates (Mike, Damian, Jens and Mike's nephew, Nick), but also in people I know only from being on the mountain (Cameron Brenneman, Rich Walters, Mike Barrows, Todd Bauer, Captain Brent Lesley, David Vaughn, Michael Wagener, Jacob Gonzales, Jay English,  a guy I don't know wearing a wicked awesome Oso High jersey, Jake and Nye Yackle--and their parents, who helped me with a mechanical problem--, and voices I never connected to their owners).  It really is an amazing community.

The highlight of the race: the race promoter delivered on his promise of a 30% gradient.  Everyone walked that pitch.  While I was walking/pushing my bike up the hill, I got stuck.  Pushing the bike with my arms extended was a lot like bench press, and I'm not so good at that .  So I couldn't keep the handlebars at arms-length, which is the best way to hike-a-bike.  Instead, the bars drifted back toward my body which kept my legs tangled up with the pedals.  As the gradient reached its maximum,, I was clinging to the hill side by my toenails.  I couldn't move until I tried straddling the rear wheel with my legs, resting the seat about hip-high, and waddling uphill.  From some of the encouragement shouted down from the chair lift, and it apparently looked like my bike and I are more than just friends.

Day 32, August 26, 2011.  Prerace day.  We were supposed to leave for North Carolina early tomorrow.  The hangup there is our destination is roughly where the black line hits the coast of Carolina.


So, we're on a temporary hold.  Every hurricane is both a problem and an opportunity, right?  Red River is hosting a mountain bike race tomorrow and Damian Calvert, Jens Nielsen, Mike Archibeck and I are leaving this evening.  There has never been a race on this course.  We will arrive too late to pre-ride the course, and an early morning reckie seems unlikely.  All this should give me pause; however, the race profile looks like this:

According to the very limited information available about the course, the gradient in the first 2 miles will top out at 30%.  That is slightly steeper than the side of a building.  The good news for me is that profile line keeps going up.  While there is a rolling section at the top of the ski area, this race will be very much like a pure hill climb.  Oh yeah.

Entertainment for the drive: Jens’ reaction to the list of ingredients on my Hostess apple pie wrapper.

Day 33, August 25, 2011. Questions.  We all have them when it comes to serious ailments or the end of life.  In Tuesdays with Morrie, Morrie (who had ALS) said "I am on life's last great journey, and people want to know what to pack."

One of the reasons I am writing this blog is to try to help, in some small way, to take the mask off ALS.  I have had some interesting moments along the way.  A few weeks ago, a judge asked "what is your affliction?"  My client sucked all the air out of the court room.  Though the question could have been posed with fewer sharp edges, I understood what he really wanted to know.  The questions that sting are the ones that never get asked. 

Tuesday and this morning we met with Leslie Linthicum, a local journalist.  Most of her questions boiled down to "what's it like?", but somehow every new formulation drew me in.  I would have sat all night talking with her.  This morning’s session was primarily to shoot pictures up in the foothills on the bike.  While Jean drove up, I rode to the trailhead thinking no farther into the future than noon.  Once we wrapped up, I went deep into the foothills for a couple of hours.  My legs jackhammered badly, but it was a beautiful morning and I stayed out of the yucca and cacti. 

Earlier this week, Jean and I were rolling home from a 30 mile ride on the tandem when we met up with a cyclist at an intersection.  Eyeballing the tandem, he said "I’ve always wanted to try that; you guys are so lucky."  He had no idea just how right he was.

Here's a link to local coverage of the Sandia Peak race, including a highly perceptive Schneebs quote ("ALS is a big pain"): http://epaper.abqjournal.com/Repository/ml.asp?Ref=TVYvMjAxMS8wOC8xMSNBcjAxMTAx&Mode=HTML&Locale=english-skin

Damian Calvert and ALS Boy after Sandia Peak.

 Day 34, August 24, 2011. With all the excitement over ALS science this week, I fell a bit behind on some important stuff, such as downhill mountain biking.  Given the amount of whining I have done about the difficulty of downhill biking, this might strike you as downright stupid.  I know that’s how it occurs to me, but it sure was fun.

On Thursday, I met bike racing friend Brian Short in Angel Fire to deal with a legal issue and to go for a mountain bike ride.  We hopped on the new cross country trail called " Enlightenment", and grunted our way up the 1 1/2 mile climb. Early in the season, Angel Fire drew a fair amount of publicity relating to efforts to make the mountain more novice-friendly by adding new, easy terrain.  Enlightenment is not part of that effort.  While rock was either not present or has been removed, everything else about the new trail screms "good luck, sucker".

The gradient is severe; tight, steep switchbacks are everywhere; and the single track is so single that it might be more properly characterize as "half track".  There is a section of Enlightenment running parallel to the downhill trail called "Lower Boogie", and Enlightenment manages to be steeper uphill than Lower Boogie is downhill.  If that weren't enough of a challenge, the exposure is such that one false move to the left could send you ass over tea kettle over tea kettle over tea kettle, etc.

After the Oso High races, the bike park director told me he hoped the race could take place on Enlightenment next year.  The primary problem I see is the winner will be whoever arrives at the start line first.  This is so because there is nowhere to pass.  No.  Where.

Fun trail, but (a) not for beginners and (b) not for racing.

When I returned to the cabin, there was enough of the day left that I couldn't resist bundling up in my suit of armor to try out our downhill bike.  Yes, I am the same guy who grouses incessantly about the downhill sections of any race course.  But a downhill bike is an entirely different tool than a cross country race bike.  One is like a recliner, and the other is more like an ejector seat.  Here is what the finished product looked like:


 I was alone at the cabin, so getting geared up turned out to be excruciating, hilarious, and far more dangerous than the ride that followed.  Step one was to get the bullet proof vest on.  It is a stretchy material with plastic body shields sewn, glued, stapled and nailed to it.  My initial assault on the jacket did not go well.  I laid the jacket down on the garage floor, leaned my head down toward the jacket, slithered my arms into the sleeves, and threw the whole thing over my head.  Very bad plan.  As the jacket launched, it dawned on me I had executed a precision move in a critically imprecise manner.  The right side of the jacket did not get adequate lift, and it came to rest on top of my head with my right hand under the jacket.  Meanwhile, the left side flew happily all the way over, pinning my right arm behind my head in something of a straitjacket fashion.


My right arm quickly fatigued as I struggled to Houdini myself out from the predicament.  I looked around the garage for a perfect tool to assist.  I found it-a Dodge!  The corner of the passenger door was the key to unlocking my dilemma.  The next problem was I couldn't zip the jacket zipper, even with the help of two pair of needle-nosed pliers.  I found an elastic strap to keep the jacket secure.  It went kind of like that until I was fully armored.

By then, I was a sweat-drenched, exhausted and nearly beaten man.  I didn't feel like I could safely ride the bike, so I did what real downhillers do: I went to the fridge and guzzled two Red Bulls.  Bulging, bloodshot eyes and an irrational sense of self sufficiency aside, the actual ride was probably the safest half hour of my week.  Angel Fire has developed an honest-to-goodness novice downhill run.  That is what I rode.  I rode it slowly.  It terrified me anyway.  But I was very well padded.

Day 35, August 23, 2011.  Science. Three days in a row!  One day after the announcement by the scientists at Northwestern University, legendary University of Tennessee basketball coach, Pat Summit, announced publicly that she was diagnosed with an early onset, Alzheimer's-type dementia several months ago.  Back to the science.  Northwestern’s website description of the import of the research includes the following:

The discovery of the breakdown in protein recycling may also have a wider role in other neurodegenerative diseases, specifically the dementias. These include Alzheimer’s disease and frontotemporal dementia as well as Parkinson’s disease, all of which are characterized by aggregations of proteins, Siddique said.

The next step, after identification of the physiologic cause, is identifying a drug that will regulate the proteins.  How long will that take?  With the target identified, drug companies will get behind the research effort, but public policy will determine how greasy the regulatory skids will be.  In her 38 seasons at Tennessee, Coach Summitt has never backed away from a challenge.  The very first words I wrote in this blog were "[W]e have no Lance Armstrong".  True enough, but the relationship of ALS to Coach Summitt‘s condition may give ALS patients the first high profile advocate we've had since Lou Gehrig (bonus: Coach Summitt has never been suspected of using performance enhancing drugs).  After what has undoubtedly been a difficult summer for Summitt and her family, perhaps there was method to the timing of the public announcement today.  I hope I don't sound like one of those people who thinks we never landed on the moon and John F. Kennedy was assassinated by John Wilkes Booth.

Day 36, August 22, 2011.  Science.  Two days in a row.  In today's edition of the journal of Nature, researchers at Northwestern University announced they have found the physiologic cause of all forms of ALS.  Succinctly:

The basis of the disorder is a broken down protein recycling system in the neurons of the spinal cord and the brain. Optimal functioning of the neurons relies on efficient recycling of the protein building blocks in the cells. In ALS, that recycling system is broken. The cell can’t repair or maintain itself and becomes severely damaged.

After reviewing everything written on this discovery I could find today, I have only two questions: (1) Huh?  And (2) what is the journal of Nature?

I couldn't begin to explain or understand the physiology. Somehow I would be reassured a bit if a breakthrough of this magnitude was announced in The New England Journal of Medicine, but the bottom line appears to be this: if they are right, and if the conclusion becomes generally accepted in the scientific community, then today's announcement is huge.  The reason is, even if they don't know the environmental cause (probably pizza), knowing the disease mechanism gives a clear target for drug therapy.  Thank God for smart people with names even funnier than mine (Teepu Siddique, M.D.).

The best written information I found is at http://www.northwestern.edu/newscenter/stories/2011/08/siddique-als-breakthrough.html

Days 38 and 37, August 20 and 21, 2011.  ALS Science Update Time!!  If you have been holding yor breath for a promising stem cell clinical trial, BREATHE NOW!  Last week, The International Consortium of Stem Cell Networks released the final report of its workshop on progress toward clinical trials for ALS.  I read the entire report of the workshop, and I can save you some time with this handy tool.


What they said

What they meant (in English)

"At the outset, it was hoped that one tangible outcome might be a consensus statement on the progress towards stem cell therapies or ALS. As the meeting progressed it became clear that the field is not yet ready for such consolidation, but that in itself is an important message to communicate to the broader scientific and patient communities."

“You thought I had this figured out?  I thought you had this figured out.  Well, isn't this awkward?  Are they having finger food or dinner at the welcome reception?”

“A cure is not at hand. We don’t have perfect answers, but sometimes one goes forward with whatever systems are in place. In the field of ALS, we will forge ahead on all fronts.”


“We don't know jack.  In fact, to tell you the truth, we aren't even very sure that jack is the thing we don't know.  We are like blindfolded hunters wearing earmuffs.  We will keep shooting, so, uh, heads up.”

“It will continue to be very expensive and time-consuming to complete clinical trials, and the issue of follow-up after academic money runs out is a consideration. It is crucial to be able to perform post-mortem studies on participants in clinical trials. . . , There is a tremendous need to encourage patients to explore the opportunities to participate in clinical trials. In recognition of that, organizations such as ALS Worldwide, MND Association, and The ALS Association, through the TREAT/ALS NEALS Clinical Trials Network, have made it a primary goal for the upcoming year.”

“We mentioned we have no earthly idea what we are doing, right?  Yeah, I thought so.  Okay, well even though that’s where we are, please let us open up your spine and put some stuff in it.  It might kill you, but what the hey, right?  I mean you have ALS.  Oh, I forgot.  Okay if we have your body after you die?  Thanks, bro.”

“Remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.”

“Note to current patients: Bend over.”


The beauty of this report is you don't get any false hope or have to wade through a bunch of sugar coating before you come to the conclusion that your money might be better spent with a psychic on Bourbon Street. 

Day 39, August 19, 2011. Was it over when the Germans bombed Pearl Harbor? NO!  And it’s not over now!!

After staying up late posting yesterday’s blog, I woke up this morning after four hours of sleep convinced simple changes in nutrition, pacing, and mindset  would get me back to 6th & Harrison in Leadville.  Fastidiously making notes for 2012 probably won't work for me.  But . . . I'm not busy the weekend of September 9.  Any takers?

See what I mean? Objects in the rearview mirror may appear closer than they are …

Day 40, August 18, 2011.  Some bike racers write two reports after we race . . . Time for the Thursday evening quarterback to explain Leadville.  When the race ended for me and Mike at 100 km, I thought the culprit was almost entirely the inability of ALS Boy to go down hill without sailing over the front of the bike.  But on closer inspection, it is apparent the barriers to earning another belt buckle were many.  Also, there was an ALS moment that has become way more funny over time than it was when it happened.

By the way, I realize how roadie-ish it is to even have access to the data below.  I'm going to have to live with everyone knowing that secret.  In a few minutes you will understand why this disclosure is relatively inconsequential.





HR 2010

HR 2011


Start to dirt  





Nothing to worry about here

Dirt  to St. K summit  





I began wondering why my heart rate was so high

St.K summit to Hagerman Pass Rd.





The eight minutes we gave up in this segment was all on the dirt descent between St. Keven’s summit and the pavement

HPR to Sugarloaf summit





This was the first sign of trouble.  To avoid having my heart rate rise into Zone 4, I had to drop my power output by 25%

Sugar summit to Fish (Powerline)





Giving of 15 minutes during a 4 mile segment is you-shouldn't-be-in-this-race bad.

Fish to Pipeline





This segment is basically downhill or flat.  The creepy thing about these numbers is how high my heart rate went.

Pipeline to Twin Lakes





The only 2011 segment faster than 2010.  This was entirely due to Mike setting the pace.

Twin Lakes to big barn





The beginning of the Columbine climb.  Again, the heart rate is more of a concern than the time.

Big barn to Columbine summit





Uh-oh. This segment includes tipping over three times; being frisked and interrogated by Ken and the medics twice; stopping to, um …, take in the view several times; and one unpleasant experience I will discuss below.  Also, last year I rode all of Columbine CLEAN. There is a bit of time differential there.

Columbine summit to Twin Lakes







So, while I descended worse than granny could have managed, it was more than descending.  In the later stages of our ride, I also climbed badly.  While we knew that food intake was an inadequate, metabolism probably combined with insufficient caloric intake to take away my ability to climb within a range that would get us all the way back to Leadville.

Okay, the plan was to keep this one between me and Dr. Domestique, but I guess I have long since crossed the modesty threshold, so here goes.  There are two ways for men to pee while racing a bike.  The preferred method is to slow down, stop, get off the bike, and discretely dehydrate.  The emergency method is to simply let fly on the fly without so much as giving Mr. Johnson room to breathe.  There are a number of good reasons to avoid the emergency method, not the least of which is bike shoes are not particularly breathable.

There came a time when I had to make a choice between these methods.  Time was obviously of little consequence by the time we were halfway up Columbine; however, there was virtually no chance of finding a private moment road side.  The road was filled with racers going both up and down the mountain.  In the end, I determined privacy was an inadequate basis for treating my stylish bike shorts as if they were a pair of Depends.  I laid my bike down in a ditch and looked for an aspen (the word "aspen” was a nightmare for my voice recognizer – you can probably imagine some of the other words it came up with) with a double trunk that might provide shelter for both uphill and downhill riders.  I found one, although it presented a significant risk of falling to my death, as it was perched over a serious drop.

With Mike about 200m uphill, no doubt watching in amusement, I dug my cleats into the soft soil to secure my position, and leaned up against the aspen (another good alternative word).  By this time, it had already been a long day.  I had been on his the bike longer than any ride since Leadville 2010.  Among the tired body parts-- my fingers.  Their job at this moment was a simple one -- pull the stretchy pants away from my body and then free the dehydration tool from confinement.  I spent about five minutes in a vain attempt to get even one thumb under my waist band.  Every attack resulted in my thumb merely collapsing into the palm of my hand.  Now what?

I was still not willing to resort to emergency procedures.  As I continued up the relentless grade, I hatched a plan.  I stopped again and used my brake lever as a tool to get under my waist band.  The first time, I got half way across road and my thumb lost its hold, leaving the waist band to slap back into its original position.  The second effort worked.

The aftermath of Dragongate was I had my one and only “what the hell am I doing out here?” moment.  It came at a bad time and was followed shortly by the encounters with Ken, the medics, and a frequent chorus of "dude, are you okay?" from other riders.  If my racing season had a title it would be “2011: Dude, Are You Okay?” 

A sense of futility crept into my hypoxic mind and took over for a brief period.  Then I remembered who I really am and why I was in Leadville.  That’s when my focus became reaching the summit above the Columbine mine.  I got back on my bike and ground out the last mile respectably.

An important thing to help keep perspective with ALS is remembering your limitations.  While I was taking a break after my trail side medical exam, I leaned over to pick up my bike and remembered I couldn't pick up my bike if it weighed 7 pounds.  In that context, which is the one in which I actually live, 100 km of Leadville was a very, very good day.  Even with Dragongate.

Day 41, August 17, 2011.  Bike racers write reports after we race.  We do this for the same reason we shave our legs.  Although I spend so much time writing reports I don't have time to shave my legs.  Even though Mike was not racing, really, he wrote a report which he sent to me last night.  Mike's words (although I did correct the spelling of Mike's daughters’ names):

Five am and Jean calls me as planned to tell me they were parked near the start line.  I rode down and met them there.  Doug and family appeared anxious, but, as always, Doug was unwavering in his determination.  Doug and I set our bikes down in the staging area and returned to the warm car.  The three of us (Jean, Doug’s Mom, and I) tried to help him get geared up, eat, get to the restroom, and work our way to the bikes.  There was a bit of panic as we were a touch behind schedule and the eating was slow going.

By the time Doug and I made it to the bikes, the mass of 2,500 riders were starting to push forward.  We hurried to our bikes and found our position in line.  Doug’s film crew and cheering section distracted us just enough.  Doug and I patted each other on the back, he gave me the thumbs up, and off went the starting shotgun.  I sat in right behind Doug and tried to keep that spot as the mass of riders weave in and out. 

St. Keven’s climb began and Doug stayed on the bike the whole way just as steady as could be, which is more than many of the riders could say.  We were clearly in the pack and not losing ground.  I considered that all of the riders around us anticipated finishing, so we should too.  One can tell in a race this large how you are fairing by the appearance of the riders around you and, in this race, by their numbers.  As you scan from the front to the back of the race, the riders’ kits become less well color coordinated and tailored, the body habitus changes from whippet-like to golden retriever-like, and the numbers (an indication of last year’s finishing place) migrate upward.  I knew we were reasonably positioned as the kits were still color coordinated, we were in the Labrador range, and the numbers were in the two to three hundreds.  As the paved road came upon us at the top of the climb, we both commented on the satisfaction of clearing the first big obstacle of the race unscathed.

The paved road began and we pulled over.  Doug took a drink of some pink concoction he made, I stuffed some electrolyte pills in his mouth, and we were rolling once again.  The next climb was more of the same – Doug was great, unstoppable.  Then the Powerline Descent, one of Doug’s greatest expressed concerns.  While we didn’t win any Super-D style points, we made it down safely with minimal stopping. 

Now we had a flat road for a while.  Doug tucked in behind me and we got in a couple of groups at a good pace.  We were passing several riders with Doug on my wheel.  We made it to the first rest station in good time.  We saw Doug’s supporters from a distance.  We stopped and Doug’s film crew approached.  His family fed him, hugged him, and encouraged him.   It was a sight to see.  I was settling into the background eating cake offered to me by his supporters and family.  I was just getting comfortable when Doug was ready to hit the road - off we went.   We continued to pass riders as a pair.  The next segments were undulating and included an area of single track.  As anticipated, Doug just kept on cruising – no comments, complaining, or signs of frustration.  I knew he was not comfortable by his breathing and his rare comments about his heart rate being high.  We began to realize that making the 40 mile cut off was going to be close.  We commented that the area his family was waiting was before the “finish line”.  Unbeknownst to us, his daughter Abby had this insight as well and moved some people to the far side of the line.  We rode right by the crowd of cheering OSO-High supporters and I got behind Doug.  We made it with 2.5 minutes to spare by my computer.  There were Doug’s family and my daughters Claire (15) and Erin (13).  It was great to see them.  It was wonderful for my daughters to see Doug and his determination in action.  I ate and drank as did Doug.  Jimmy lubed Doug’s chain and helped me with the same.  Again, after a relatively short time we were off toward the most challenging portion of the race, Columbine.

Prior to this point, I felt like we were right in the action of the race – I would have guessed third quartile.  Many riders did not make the 40 mile cut off, so I was so happy we did.  We worked our way to Columbine and started up.  I began to notice Doug’s pace was beginning to drop off.  We stopped a couple of times and fueled up.  I would keep a steady pace and would stop to wait for Doug every few blocks. At one point I got a bit ahead of him and when he caught up I noted some bloody knees.  He told me about his falls and the comments Ken had made about turning around.  I felt bad not being there.  Somehow, Doug negotiated his way back up the hill to me.  We stopped and rested.  I took a few photos.  Doug and I for the first time admitted our inability to make the next time check.  He asked me if I wanted to leave and see if I could finish in under 12 hours - no way, that was not why I was there. 

We were near the top of Columbine, but the last mile is tough.  You can see the turn around but it is a steep climb up there.  We started up again.  I asked Doug if he wanted to go to the top – without hesitation he got back on.  I worked my way up in front and sat to wait for Doug.  I began to get nervous as I waited.  Finally a guy asked me if I was number 97 – yes.  He said “they” were making my friend turn around.  I jumped on the bike and sped off down the hill, only to find Doug in that familiar posture chugging up the hill only about 300m from the top.  I was so happy to see him – I felt like no friend at all losing him for that time.  We rode together up to the summit.  That’s when Ken approached again and told Doug he was a brave fool.  Doug walked away from me after taking a swig of cold chicken broth I had brought him (they were out of water and any acceptable snacks up top).  He approached Ken and I watched as Doug’s gentle negotiating skills resulted in our continued journey.  I only learned later that Doug commented to Ken that his “doctor” (me?) felt it was safe for him to continue (I did?).  Ken slapped me on the back and said something like, “Thanks doc, if something bad happens out there put a few rocks on him so I can find him later”.  After a bit of a rest we got back on and headed down. 

I anticipated the descent to be a welcome break for Doug but it was quite the contrary.  On the climb, he rarely would stop despite obvious difficulty.  The descent, however, tested the limits of his upper body strength.  Depending on the grade and the technical aspect of the course, we would stop every 300 to 1000m to rest up top.  Doug’s arms and legs were shaking with fatigue when we stopped.  I knew he was exhausted, hungry, thirsty and his healthy mind was furious at his failing body.  I didn’t know what to say to Doug.  He never raised his voice, expressed frustration, snapped at me, or lost his cool.  In fact, at every stop he would, get this, apologize to me. We had a few laughs and made it down.  As we entered the Twin Lakes area, most of the tents were gone.  The race officials apologized they had to remove our timing straps, “Hard climb, eh?”.  A couple of Doug’s friends were there and told us to work our way over to the tent.

 This 500m was the most memorable segment of the ride.  We started down the straight and saw a crowd of family and friends dressed in red shirts.  While we couldn’t hear them, we could see them jumping up and down, waving.  As we approached, we could hear the cheering and see the smiles (and a few tears).  Doug and I crossed the improvised finish as the kids ran with us, just like the red carpet finish on 6th Street in Leadville.  Doug got off, commented “That was fun”, and sat down with his jug of milk.  He recounted some of the notable moments; we took some pictures, and congratulated Doug.  I fought back the tears from behind my sunglasses.  I thought about all that time (9hours and 5 minutes to be precise) and all the fight in Doug.  He would not give up, just like in his fight with ALS.  I will never forget those nine hours on the mountain with Doug.  It will always mean so much to me and my family.  Thank you Doug for letting us be a part of that day with you and your family.  

Doug commented that night at his rockin’ party that he couldn’t have done it without me, but I know better.

The Archibecks, clockwise: Dr, Habitus Whippet, Janine, Claire, Erin, Grace and Jane.

I'm going to have to quit calling Mike  my “b$@#%”.  That will be the first step in assembling an appropriate "thank you" package for the Archibecks. I will begin stopping tomorrow right after I call Mike and demand a camelback refill.

Day 42, August 16, 2011.  I own a 401(k).  It is my understanding that the funds are invested in companies other than Peace Craft.  And it is my hope the value of the 401(k) will increase over time.  I think this makes me a capitalist.  Here, however, is some news that makes me stare at my computer, muttering “uh, say whaaaaat?!”

Latisse has been approved by the FDA!  State and federal funds, along with private research grants and corporate investments made this medical advance financially possible.  The FDA evaluated: (a) an investigational new drug application for Latisse; (b) a new drug application for Latisse; (c) each of three stages of clinical trials performed at medical facilities across the country; and (d) a whole bunch more paper relating to Latisse.  We all pay taxes to keep the FDA in business.  On the human resource side, hundreds of post graduate and medical degree holders sunk their knowledge, talent and experience into the effort to determine the safety and efficacy of the drug.  Given that every advanced degree is a triumph for and an expense shouldered in part by the public, we should all puff our chests with pride knowing that we all teamed up to develop LATISSE® (bimatoprost ophthalmic solution) 0.03% — the first and only FDA- approved drug to increase the fullness and length of eye lashes.

Do I have a point here? Nah, I'm just in a bad mood becaause I "lifted" weights today.

Day 43, August 15, 2011.  "Objects in the rear view mirror may appear closer than they are.”  This subtle transformation of a phrase printed nearly as widely as "close cover before striking” is attributable to the lyrical genius of Meat Loaf.  With ALS, objects in the rear view mirror definitely appear closer than they are.  I’ve bumped hard into this concept every time I’ve rolled up to a bike race start line this season.  In my pre-race assessments of each course, I’ve looked back to the 2010 season and thought “I can do that” with a complete inability to rationally evaluate the impact of a year of ALS munching away on my motor neurons.

There’s no unique application of this concept to ALS.  Who among us hasn't found himself or herself staring up at the sky, somewhat dazed, after driving the hoop/catching sick air/diving for a line drive, etc., in a manner that would have yielded only triumph five or ten years ago?  Loss of physical ability occurs at a disorienting speed, no matter what that speed may be.

Report Card.  Let's have an objective look at how things have changed since Leadville Day 166.




Day 166

Day 0

So what?

Biceps curl

35 lbs

15 lbs

5 lbs

Picking things up, such as a cup of water


Pouring a glass of milk

Shoulder press

95 lbs

35 lbs

10 lbs

Putting on a shirt

Brushing hair

Steering (parking)

Toweling off

Chest/bench press

155 lbs

80 lbs

30 lbs

Opening a door


Pushing a bike up a mountain in Leadville





Avoiding flipping over handle bars

Getting up off the floor (or out from under something like a bike)


James Earl  Jones

Sylvester the Cat

Sylvester the Cat, drunk





Slightly unstable

Quickness seems to be the problem, which means a normally harmless trip over a shoe could turn into a face plant fairly easily.

Finger extensors


Normal except left index finger

Only right pinky and thumb will get near straight

Shaking hands (when I hold out my mitt, one or more digits typically gets folded under).

Putting on gloves (can't do it without help).

Getting things out of my pockets .

Waving, giving thumbs-up or other hand signal…




Hang from bar for 30 seconds

Fall immediately to floor, whimpering softly

Where shall I begin …?



Putting on clothes

Holding a drink

Opening stuff

Brushing teeth

Turning key in ignition

Operating utensils

Opening a laptop

Tying shoes (as if..)



Given this experience, you might think I would know better than to tentatively plan two or three more mountain bike races for this Fall before Acoma.  I do not have that good sense, however, because, despite the wise counsel of Meat Loaf, I still believe GM: objects in the rearview mirror are closer than they appear.


Day 44, August 14, 2011.  The ALS Association promotes a “Walk to Defeat ALS” all over the country on September 25.  In Albuquerque, the walk takes place in Isotopes Park, our Triple A baseball stadium.   Participants will raise money and walk eight laps around the inside of the park.  That, I can do.  Maybe next year that will be a big deal (as things are going, I suppose it will), but for now I feel like I should do something I shouldn’t be able to do. Something so many people with ALS can’t do.

The Tour de Acoma is an annual and not very big bike race with 25, 50, and 100 mile options.  In the 100 mile race, Jean and I have won the tandem division three times, and we won the race outright in 2008.  In 2010 I was having difficulty with my arms and shoulders from the mid-point of the race, and by November of 2010, I began having the sewing machine leg problem at El Tour de Tucson.  The sensible thing would be to enter the 50-mile race.  Tomorrow I’ll complete the forms for the 100-mile race.  I will tell Jean about that in a week or two.  Voila! A Ride to Defeat ALS.

The ALS documentary project I described a couple of weeks ago is rolling along.  Wilder arranged for a filmmaker to shoot us in Leadville, and Dave Harris has posted some edited footage from the Sandia Peak race here: http://www.youtube.com/watch?v=rwJhkxS1Mk8  22 minutes of smut, I say.

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