Doc, Where’s the Instruction Manual for Living With ALS?

I was an avid cyclist in the warm months, and in the winter months in Cincinnati, I was a league bowler. But in late 2009, I started falling as I released my bowling ball, which turned out to be because of weakness in my left leg. After seeing an orthopedic doctor, who said I had spinal stenosis, I chose therapy over surgery.

In November 2011, after virtually no improvement, I had back surgery. It took only a few weeks for my wife to notice that my gait was still off. The ensuing months were filled with leg braces, electromyography exams, three new doctors, a chiropractor, CT scans, and MRIs. Finally, after four years of frustration — falling while walking as well as after completing a bike ride — that dreaded day arrived.

I sat there with the neurologist, awaiting his diagnosis, which he gave me in what I thought was such a casual way. “You have ALS.” That was basically the gist of it, except for the mention of Rilutek (riluzole), the only medicine given at the time for ALS.

“What will it do?” I asked.

“It should give you an additional three months to live,” he responded.

And that was that. I haven’t seen him since that day, Aug. 23, 2013. One month later we moved to South Carolina and began our new journey.

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We had no idea what to expect or how we would manage our new life without an instruction manual. In retrospect, that’s probably why the doctor said so little; there was really nothing else he could’ve said. We were on our own and had to write our own manual.

Since I had received my two-to-five-year sentence, I was desperate to find medical advice from a neurologist in our new hometown. My wife got a recommendation from one of her co-workers at Prisma Health Greenville Memorial Hospital, but there was no ALS clinic available. Then my tenacious daughter went to work and made great contact at the Paralyzed Veterans of America. We had finished writing the first section of our instruction manual.

Because I could no longer work and my wife had to take a new job at half of her previous salary so she could work from home and take care of me, we began writing section two of our manual. Enter the Veterans Affairs hospital’s ALS clinic team. What a godsend. They made me feel better about my condition and provided everything we needed to mitigate our physical and emotional conditions.

Milestones are vital to ALS patients and to those with similar debilitating illnesses. Mine included seeing my daughter graduate from college, visiting with my family and friends as much as possible, and taking trips to places I’d always wanted to go. Before I had to stop driving, I would go on local exploring trips while my wife was at work. Later on, my wife and daughter drove us to Galveston, Texas, and even to the Grand Canyon. Wonderful memories. My next milestone is to hold my daughter’s hand at her wedding.

Section 2 is completed.

The third section of our manual comprised submitting my resignation to the 200 or so newspapers that carried my column, writing four books about my life with ALS, and accepting even more physical limitations. I guess I’d begun to believe the end was near, and to be brutally honest, I hoped and even prayed that it was. I was so tired of it all. I often said that to be helpless does not mean you are useless. With that in mind, I finished Section 3.

Now as I start on Section 4, I realize that my tenacious daughter believed in my usefulness more than I did, as she introduced me to Bionews, the parent company of this website, and persuaded me to apply for a writing position. I didn’t want to do it, but succumbed to her encouraging words regarding what I could still offer the world. So here I am.

Why “Outspoken”? Cycling was my passion. I raced; did tours, club rides, and time trials; and won eight gold medals and two silvers in the Senior Olympics. I also rode the Assault on Mount Mitchell, the highest point east of the Mississippi River, five times and completed a 2,000-mile ride at age 55. In my other life, I wrote a nationally syndicated newspaper column and hosted radio and TV shows. So the word “Outspoken” is a double entendre.

Our instruction manual is not done, but that’s fine because it’ll only be finished when I’m finished. Besides, it can merely serve as reference information and a guide for others. After all, everyone has a different journey with ALS, and because there is no manual on how to deal with it, each of us must write our own unique instructions. It’s OK if you haven’t already. Get started today.

James Clingman. (Courtesy of James Clingman)

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.