Guts to Glory

Guts to Glory and Back Again

By Colin Portnuff

If you are a longtime reader of Walk About®, you might remember the “Guts to Glory” article in the debut issue, three years ago. It was my story of victory over obesity and diabetes.

Over the course of a year or so, I lost about 70 pounds and beat my type 2 diabetes into submission. I racewalked the 2002 Portland Marathon, and then the Dublin Marathon three weeks later, celebrating the end of my first year of training with Portland Fit.

Then the spirit moved me to start running. I could only run for about three minutes the first day, but 11 weeks later I ran my first half marathon in Las Vegas, and in 2003 I ran the Chicago Marathon. My legs were sore, but my spirits soared as I crossed the finish line.

The following April, I joined Portland Fit again as an assistant coach. I didn’t know it at the time, but I was about to hit the wall at mile 20 of the marathon we call life.

One of the things we teach at Portland Fit is to run at a pace at which you can conduct a conversation. But I started to find that no matter how comfortably I was running, my speech seemed garbled. It was very strange. I was not short of breath; my tongue just did not seem to be working. Soon after, I started having trouble swallowing. I’d choke on water, and solid food would stick in my throat. Now I was getting concerned, and my doctor agreed. He referred me to a neurologist, and after three months of diagnostic tests to rule out everything else, the diagnosis was made in the fall of 2004. I had ALS, amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

ALS is a degenerative disease in which the motor neurons fail. The upper motor neurons carry impulses from the brain to the spinal cord, and the lower motor neurons carry impulses from the spinal cord to the voluntary muscles. In most cases, the motor neurons affecting limb muscles are the first to go, resulting in weakness, atrophy, and paralysis of the arms and legs. Eventually the muscles involving speech, swallowing, and respiration follow, and death results from respiratory failure.

In about 25 percent of ALS cases, the muscles involved in speech and swallowing go first, and limb paralysis happens later. This rarer order of progression is known as bulbar onset ALS, and it is this form of ALS that I have. An even smaller percentage of people will die of respiratory failure before extensive limb involvement occurs. Most ALS patients do not have cognitive deficits.

Instead of looking at a long and healthy life enjoying my lean energetic new self, I now faced growing disability, paralysis, and death in one to five years.

I had opened a restaurant three months before I was diagnosed, and within a year I was unable to take a bite of the food I prepared. I am now totally unable to eat or drink, and I take all nourishment in liquid form through a feeding tube. Weight management now means trying not to lose weight. I can take only shallow breaths due to the weakening of my diaphragm. I use a non-invasive bilevel ventilator at night and occasionally during the day.

I was never a fast runner, but I could and did run 26.2 miles and bench press 200 pounds. Now I have a high tech power wheelchair stuck to my butt and I can’t bench press my hands.

The fitness level I attained over the previous four years certainly has helped me deal with ALS. Since I was pretty strong at the onset of the disease, I have been able to retain sufficient strength to care for myself for much longer than I expected.

Since selling the restaurant in June, I have found a new focus for my energy: Helping others who use augmentative and alternative communication. I have written articles and a patient’s guide to tube feeding and have spoken at conferences and universities from California to Washington D.C. I have been keeping an online journal, which has become part of a voyage of self-discovery. I have made new friends and enjoyed deeper and closer relationships with friends and family. I have learned a lot about ALS, about adaptive technology, and about myself.

So I may be in a wheelchair, but I have not stopped running. I’ve just redefined it. And when I reach the finish line, I will do so as I did in Portland, Dublin, and Chicago — with spirit soaring.

To read more about Colin’s journey visit his blog at colinportnuff.livejournal.com.