August 19, 2014, by Todd Neva
“What happened to you?”
I’ve been asked that question, or some variation of it, many times by people I meet.
“I got sick,” I would answer. “I have a neurological disease. It’s a brain disease, called ALS.”
If my new friend is older, I tell him I have Lou Gehrig’s disease. Older folks know that disease, heard of the man, the baseball legend Lou Gehrig, and how he died.
But I wouldn’t call it Lou Gehrig’s disease if my new friend is younger than, say, 50.
“ALS stands for amyotrophic lateral sclerosis,” I explain. “Amyotrophic is Greek for no-muscle-nourishment. Every voluntary muscle in my body will weaken, and I will become completely paralyzed, even losing my ability to swallow and breathe.”
“Oh! How do they treat that?”
“They don’t. There’s no known cause, no cure.”
“Oh!” His eyes widen, suddenly realizing the significance of this disease that has put me in a wheelchair, robbed me of my independence, took everything from me but the love and support of my family and friends.
“But life is good,” I ease the tension. “Not everybody gets to retire at age 41.”
For conversations like those, I am glad to see the ALS Ice Bucket Challenge.
The ALS Ice Bucket Challenge is raising awareness of this orphan disease, this devastating disease that cuts down a small percentage of people,* but does so cruelly and quickly, usually within two to five years.
The disease impacts each pALS, person with ALS, differently. For some the disease starts in the arms, then moves to the legs, then to the bulbar, which are the muscles in the core of the body controlling breathing , swallowing, and speech. For others, the disease starts in the legs, then moves to the arms, then to the bulbar. For some the disease shows up first in bulbar, slurring speech and sometimes leading to an initial misdiagnoses of stroke.
However it starts, every pALS has to deal with change. The toughest challenge for me has been change. At any given point, I think to myself, “If it would just stop now, I could deal with it.” But it doesn’t stop. This disease, ALS, is relentless, robbing me of independence month after month. I vividly remember the first time I couldn’t swing a golf club. “It’s okay, I thought, I can do without golf.” As clearly as I remember where I was when I saw the twin towers collapse, I can picture myself sitting at the kitchen table when I was first unable to squeeze a mustard bottle. “It’s okay,” I thought, “my wife can put mustard on my hamburger.” There were more setbacks, month after month, each devastating: unable to comb my hair, unable to button my shirt, unable to pull on my cowboy boots, unable to drive, unable to bathe myself, unable to lift a glass to my mouth, etc. I have very limited use of my hands. I struggle to walk. I fall occasionally. I sleep a lot. I require a personal caregiver for the most basic tasks. But even now, I think, “If it would just stop, I could deal with it.” But it doesn’t stop. ALS is relentless.
The ALS Ice Bucket Challenge is raising money for a worthy organization. The ALS Association announced on Monday, August 18, that it has received $15.6 million in donations compared to $1.8 million during the same time period the year before.
ALSA provides practical support for pALS and their caregivers, such as adaptive equipment, support groups, social service guidance, and financial assistance to help with medical expenses. I have benefited personally from the organization, and I’m very grateful for them.
ALSA also provides grants for medical research. This is a wonderful time to be funding ALS research because recent discoveries have given valuable insight into the mechanism of the disease. There are a few medical trials, which are in progress now, that are looking promising.
So whether someone chooses to just dump the ice water over themselves, to just donate, or both, it’s all good. Thank you! People are becoming aware of this disease, the money is flowing to the ALSA, and we’re all getting a good laugh in the meantime.
* Less than 2 in 100,000 people are diagnosed with ALS each year in the United States. About 30,000 people are living with ALS in the United States at any given time.