Facts About Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's Disease)

On the cover: Scott LeDoux, pictured with his wife Carol, received a diagnosis of ALS in 2008. LeDoux, of Coon Rapids, Minn., was a professional boxer and retired from the sport in 1983. He worked as a ringside commentator for ESPN, and in 2010 he was inducted into the Minnesota Boxing Hall of Fame.

Dear Friends:

Glenn Harwood

When I learned in 1994 that I had ALS, my world changed. I was in my early 50s, had a good career with the U.S. Small Business Administration, and was a husband and father. Suddenly, I faced a serious disease that would affect every aspect of my life.

I decided my best weapon in this battle would be attitude. I’ve met every challenge ALS has presented with an approach that’s unbeatable: I can do it, I will do it. With that conviction, I have a full and rewarding life with the help of a power wheelchair, a voice synthesizer and lots of email. I’ve continued working, traveling and learning.

I have wonderful allies in this fight: a fantastic family, including my wife, Fran, our two children and beautiful grandchildren, who give me all the help I need and great joy and purpose. My faith in God never fails me, and helps me keep going with hope.

I’ve also honed my sense of humor. I carry a page of jokes with me at all times and regularly email friends across the country with “My Sunday Bulletin,” a compendium of jokes I collect from my email friends. My motto is “Can’t Walk or Talk But Can Always Laugh.”

Another vital weapon in my arsenal is the Muscular Dystrophy Association, which offers the best doctors and health care professionals in the country. You also can count on MDA for support groups, help in finding special equipment, and support and understanding at every turn.

This MDA booklet offers an introduction to ALS, so you can begin preparing to meet the coming changes. MDA also gives each person with ALS copies of its very helpful and thorough books, Everyday Life with ALS: A Practical Guide and the MDA ALS Caregiver’s Guide.

From this booklet you’ll learn several encouraging things about having ALS: that your diagnosis is in no way your “fault” … that many physical functions remain unaffected in ALS … and that better treatments and technological devices are constantly being tested and developed for every aspect of the disease.

It’s good to know that society is far more aware of people with disabilities today, and the laws entitle you to equal employment opportunities and access to public places.

By the way, people with ALS can survive much longer than expected — in my case, more than 17 years since the earliest symptoms. I know of others who’ve had the disease for 15, 20 or more years.

You’ll find, as I did, that the love of your family and friends will give you strength. A hopeful attitude and good sense of humor will keep ALS in perspective, as only one part of your life.

And remember: MDA and all its resources are there to help you and your family. You’re not alone.

Glenn Harwood
Crofton, Maryland

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