Oso High Endurance Sports -- Biting Back at ALS


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"It Could Be ALS"

In 2005, I was 45 years old, married 15 years to the love of my life Jean Bannon.  Jean has a daughter, Jessa Herren, then 25, and our two kids, Jimmy and Abby were 10 and 8 years old.  Jean and I are both lawyers and had jobs we enjoyed.  We skied most Winter weekends, traveled frequently, and said a prayer of gratitude every night.  We wondered, and sometimes even worried out loud whether the other shoe had to drop at some point to mess up our perfect lives.

 For some people, the first sign is when they fumble with a button; for others, they can’t open a perfectly dry jar or bottle.  For me, it was the winter of 2006 on a chair lift.  I noticed my tongue felt heavy – an exaggerated version of the sensation we all get when we’re cold and words sort of creep out of our mouths.  I hardly gave it a second thought.  About a year later, I began tripping over saying “learned intermediary doctrine”.  Say that three times fast, and you can appreciate why I hardly gave that a second thought.  Then came “yesterday”, followed by a host of other words and phrases.  Nothing obvious, just noticeable to me.

In September 2008, my right biceps muscle began twitching involuntarily.  I saw my doctor, then a neurologist, who assured me it was probably nothing of concern.  During the summer of 2009, my speech issue was becoming more apparent to me more frequently.  I was still twitching, too.  I went to see my doctor and he sent me for a swallow test to evaluate the possibility I had reflux.  Normal.  Then my doc sent me to a neurologist, who conducted a nerve conduction velocity test (this is done by putting one finger on the negative terminal of a car battery and licking the positive, roughly). Normal.  Next, he ran an EMG (think acupuncture with lawn darts).  Normal.  He took most of my blood to check for all manner of ills.  Normal.  Next, a brain MRI to look for multiple sclerosis.  Normal.

At this, point, December 2009, I finally decided to tell Jean, who had not detected the changes in my voice.  I figured telling her might only needlessly cause her to worry.  For many, many reasons, I don’t recommend this approach.  The neurologist said “it could be ALS”, and, with those words hanging in the room, recommended we see the leading expert on ALS in New Mexico.  It doesn’t take much to be the leading expert on ALS in New Mexico.  State health officials estimate there are about 80 New Mexicans with ALS, so any doctor who’s seen five of them is probably in the top two or three.

In February, 2010, we went to see the local expert.  She was patient, compassionate, a good listener, but she does not appear old enough to sip on a beer.  On the other hand, her education, training and creds are legit -- she is a genuine expert.  Another lawn darts EMG.  Normal.  More perfectly good blood drawn.  Normal.  “I need you to be prepared for the likelihood you have ALS.”  We had done our research, so we argued.  I was strong – my weight lifting workouts were normal.  My only symptom was speech.  It could be stress.  It could be Lyme’s Disease.  More blood. Normal.  In June, another EMG, and another normal.  I read articles about ALS paranoia and how it affects health care providers with great frequency, causing needless stress. I also read about surfers and how the only way they can get in the water is by believing someone else will get the shark.  They all believe this, even the one who gets the shark.

In April 2010, suddenly I was laboring more in the weight room.  I did my last pull-up on April 22, but I kept trying.  By June I was peeling weight off the bars for anything having to do with my chest or arms.  A friend of mine, who is a federal judge, once told me how his weight room performance plummeted in a very short period during his early 40s.  I was older than that – “I’m just getting old.”  Surely that also explained why my left hand was getting weaker than my right.

I was racing well.  For the 2010 season, I had upgraded to road Cat 3, and mountain Cat 1.  Not always, but generally finishing on the podium. Then, in late June, I had severe hamstring  cramping while winning a mountain bike race.  More of the same in early July.  In July, we all went to France.  Jean and I went first, taking our tandem to ride the French Alps before the kids joined us.  It was a perfect vacation.  We came home, I turned 50, more cramping in races.  As I crossed the finish line of a local mountain bike race, I heard an official say "OK, that's a wrap", then they all folded their chairs.

On July 28, we flew to San Francisco to see a world leader in ALS.  I was convinced he would say “this just doesn’t look like ALS to me”.  He said the opposite.  We wandered the streets and wound up in a bar.  We started a list of good things about our situation: (1) don’t need to worry about sunscreen; (2) can drink as much Diet Coke as I want . . .

From that moment, things have only looked up.  The agony of worrying about whether I had ALS was way worse than knowing I have ALS.  In a way, I’m very lucky.  If it’s possible, our family has grown closer.  We take nothing for granted.  Eight months after my diagnosis, my arms, hands and voice are weaker, but my daily activities are still about the same.  I’m working less, and I’ll retire this year.  While that’s sort of a bummer, I’d rather be forced to retire than forced to work.

Getting ready to ride or ski is a pain.  Zippers, buttons, gloves, socks, buckles, etc.  Simple things we hardly notice.  My family helps and I’m grateful for everything they do.   Once I’m on the bike or on skis, though, it’s never been sweeter.  Same, too, with every kiss, hug or “I love you”.

If, as Buddah said, “suffering comes from resisting what is”, we’re doing OK, and we’ll continue that way for so long as we can see that accepting what is makes all the colors brighter.   So we’re on the road through Leadville to Acoma and whatever comes next.  Between here and there, I have baseball and soccer games to watch, races to ride, and a basically healthy life to live with my wonderful family.

ALS has a richly-deserved bad reputation, but we all have our challenges, and our family got this one.  Another silver lining:  as long as my leg strength holds, my increasingly Schleck-like arms and chest will increase my power-to-weight ratio.  Oh yeah.

I hope you’ll follow the blog.  Click here to go to the "166 Days to Leadville" journal, or to read what comes next, go to "44 Days to Acoma", "54 Days to Tucson", "131 Days to Augusta", or "1 Day to Tomorrow". We will all learn a bit about ALS, and I hope you’ll consider raising some dough while you do the things you love!

Doug Schneebeck

March 8, 2011

August 14, 2011

December 1, 2011

August 8, 2012