May 1, 2004

by Christopher and Reda Rice

In December 2001, we received some surprising news: Chris, was given a diagnosis of amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease.)

ALS is a fatal, progressive neuromuscular disease that often strikes adults in the prime of life. It starts with generalized muscle weakness, and eventually leads to virtually complete paralysis. There’s no cure for ALS — not yet, anyway — and the average survival is three to five years.

Because May is ALS Awareness Month, we want to tell you a little about our lives with ALS so you’ll know how this destructive disease affects more than 30,000 Americans and their families.

Chris, 39, has seen his disease progress in several ways: His speech is slurred and slowed, and he’s beginning to have difficulty walking. He still works full time as an information technology manager for Lincoln Property Co. and sometimes uses a computerized speech-generating device to talk on the phone. Recently, he was fitted for orthopedic equipment that will assist him in walking.

Despite the shock of the diagnosis, we seek to live our lives as normally as possible and to enjoy each day. Faith, family and a network of marvelous friends have helped us stay focused on positives. An equally important partner in meeting this challenge is the Muscular Dystrophy Association.

MDA is the nationwide leader in providing services for people with ALS and worldwide leader in funding the research to defeat the disease. To date, MDA has spent more than $155 million on services and research seeking better treatments or a cure for ALS. In 2004 alone, MDA will spend $15.6 million on ALS research and health care services.
The numbers are important, but from our point of view, MDA’s ALS Division simply allows us to live our lives.

Chris regularly goes to the Ronny & Linda Finger MDA/ALS Center at Baylor College of Medicine in Houston, where he gets care from some of the world’s top medical experts in ALS. MDA maintains 30 MDA/ALS centers at major universities and 230 hospital-affiliated MDA clinics across the country.

During our clinic visits, we focus on treating or controlling the symptoms and understanding the many details of the disease. MDA gives us peace of mind so that on the other days, we can focus on living.

And we have a lot of living to do: We’re blessed with three fun-loving, active children, ages 8, 6 and 4. We each have six siblings, and we enjoy getting together with our close friends.
In addition to leading the worldwide hunt for a cure, MDA gives us crucial help and emotional support. Along with clinical care, MDA’s ALS program includes support groups, help with purchase and repair of costly equipment like wheelchairs, and a steady stream of information about medical care and the latest research news.

Of course, our days are filled reminders that ALS has forever altered the trajectory of our lives. But thanks to our faith, family, friends, and the hope and help we receive from MDA, we still have many to continue.

We’d appreciate your support of MDA ALS Awareness Month activities in your community. You can make a difference.

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