Letters to the Editor 5/02/2003

Published 12:00 am Thursday, May 1, 2003

Choosing to live with ALS

May is ALS Awareness Month, and we hope you’ll take a few moments to give some thought to amyotrophic lateral sclerosis. If you’re not very familiar with that disease name, we understand. We were only mildly aware of Lou Gehrig’s disease until March 2001, when it hit our family like a sledge hammer and Steven received a diagnosis of ALS at age 35.

That’s the way ALS is. Scientists have some ideas about what causes it, but they don’t know for sure, so it usually strikes out of the blue. It hits adults in the prime of life, and it can strike anyone.

ALS starts with generalized muscle weakness, and eventually leads to virtually complete paralysis. For most people, it progresses pretty rapidly, and it takes away the ability speak, then the capacity to breathe without assistance. The average survival is three to five years, though with newer respiratory equipment available, life expectancy is gradually increasing.

ALS entered our lives just as Steven was enjoying the greatest potential for growth in his sales career in the telecommunications industry. He was looking forward to many years in his role as father of our now 5-year-old son, Christopher.

Needless to say, we initially struggled with what this diagnosis meant for our family’s future. We’ve held on to a positive attitude, and every time we hear that prognosis of three to five years, we remind ourselves that no one really knows how long someone will live.

Whatever the number of years we may have, we’re determined to make it a time of quality, with a focus on our child. If ALS has a blessing, it’s that it’s helped us focus on what matters most.

Backing up our determination and our hope are the services of the Muscular Dystrophy Association. As the world’s leading provider of services for people with ALS and the research to defeat the disease, MDA gives us an important rock to lean on.

MDA offers the 30,000 Americans with ALS the best in expert medical care through its 29 MDA/ALS centers at major universities and its 230 MDA outpatient clinics across the country. It also helps people buy needed equipment such as wheelchairs and communication devices, and provides a steady stream of information about medical care and research findings.

To date, MDA has spent $140 million in ALS services and a worldwide research program seeking a treatment or cure. MDA-funded scientists are conducting several clinical trials of drugs that could affect the disease progression, and are pursuing every lead that comes up.

We’ve found particular comfort and strength by connecting with others who have this horrible disease through an MDA-sponsored support group. Support groups allow us to learn from ALS &uot;veterans&uot; and to share information with those just joining the fight.

We’ve chosen to see ourselves as living – not dying – with ALS. We’re grateful to all of you whose support enables MDA to help us keep fighting.

- Steven and Jennifer Bishop