Saturday, April 5, 2008
Faithfully Departing Posted at Notred Dame Magazine
Just a note to say that an essay very close to my heart has been posted at Notre Dame Magazine. It concerns a battle we're waging at our house against a horrific disease: Amyotrophic Lateral Sclerosis (ALS). Some may know it as Lou Gehrig's Disease. I wrote it to promote awareness, to reach out to others with such battles to fight, and because I want to make this disease pay.
My husband's family is stricken with the inherited form of that disease. He's lost a younger brother to it, aunts, uncles, cousins of all ages and now he is in the battle for his life. He's weaponless -- no treatment, no cure, no research that can even define the cause of the disease. Lots of theories, but nothing substantial to pin our hopes to. He takes vitamins and uses whatever equipment he needs to compensate for muscle loss.
Several organizations give us support and help. We owe so much to the ALS Association, the researchers they support and Rhonda Rittenhouse who keeps the monthly support meetings going. This monthly support group has provided us with new friends, information, and even some equipment that will give Derrol better quality of life. We've received monetary help through the MDA, Muscular Dystrophy Association. They help pay for equipment as well as quarterly visits to the ALS Clinic held at the Mayo Clinic in Jacksonville, FL.
We are so grateful to Dr. Boylan, clinical neurologist and friend, who runs the ALS Clinic and keeps giving us hope. Through him we attended an ALS Association conference for researchers in Tampa earlier this year. We were privy to the discussions concerning cutting edge research, most recent breakthroughs and best of all, we made friends with some lovely people from around the world. They are dedicating their lives to finding a cure for neuro-muscular diseases including ALS.
The first ALS Clinic Derrol attended caught both of us off guard. We sat speechless in a room at Mayo Clinic while specialists came to us. In one morning we saw more specialists than we had been able to see in the last seven years. They file in, do their tests, talk and ask questions, joke and smile and make us forget what horror has brought us there. He talked with physical therapists, speech therapists, occupational therapist, pulmonologist, well, the list continues. Whatever he needs to keep him functioning, they rush to help.
It has taken us a long time to 'admit' that we live with this disease. We'd like to just pretend it isn't here. But it just won't go away. So we acknowledge its existence and I'll be writing about it more in the future. You may already be familiar with the disease or a form of it if you read the book Tuesdays with Morrie by Mitch Albom or are familiar with baseball legend, Lou Gehrig's story.
The first question ALS victims ask each other is 'when were you diagnosed.' It is code for "How long do you have to live?" Most die within six years of diagnosis. Derrol, fortunately, has a slow-progressing form of the disease. He was diagnosed in 2005 and is just now getting to the point where he needs a wheelchair at least part of the time. Sadly we have watched other members of the support group decline from fairly independent to totally dependent with wheelchairs, feeding tubes and communication devices in mere months.
If any of you reading this are so inclined to help find a cure for this disease, please visit the ALS Association website and consider donating. By finding a cure for ALS, we quite possibly would also open the door to cures for Alzheimer's Disease, Parkinson's Disease, Muscular Dystrophy and many other neurological diseases.