‘Worrying Was Worse Than Knowing’: The ALS Diagnostic Journey

by Douglas G. Schneebeck on Mon, 2013-03-25 05:00

Doug Schneebeck and family

In 2005, I was 45 years old and 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 at the time. 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 and 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.

Suddenly, in April 2010, 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; and (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 Buddha 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. 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.

Editor’s note: Doug Schneebeck originally posted this blog under the title “It Could Be ALS.”

About the Author

I have been married to the love of my life and my best friend (same woman) for 23 years. I have three perfect kids, most of whom are teenagers and love me anyway. I worked for the same law firm for 25 years. I race bikes. I ski. In July 2010, I learned I have ALS. I'm one guy; it was too late to go to medical school and become a neurologist, but I wanted to do something to help. I came up with two goals: (1) help raise a little money to encourage the scientists to keep thinking, and to help people who have ALS get by; and (2) do a bit to help raise awareness about ALS. That's the reason The ALS Blogs were hatched in 2011. Things have changed since then. I had to retire. My bikes became trikes. I took my last turns on skis. It also has been an unlikely adventure. I became a member of the United States Paralympic Cycling Team, which introduced us to amazing people and took us on a world tour. It has brought our family and our friends closer. This is a story for my family; and it's a story for you. Enjoy the ride.

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