ALS: Hope for what might be

By EDNA GOLDSMITH
First published: Monday, June 16, 2008

Thursday is the birthday of baseball great Lou Gehrig, who gave his name to amyotrophic lateral sclerosis, the disease that took his life shortly before he would have turned 38. Like everything else I know about baseball, I know this because of my brother, Michael.

Growing up, Michael yearned for an athletic younger brother. Instead, he got me.

I was not what you'd call a natural at the bat, but he was not one to give up easily. That's why his favorite team was the Baltimore Orioles: He liked their spirit. When they lost the pennant in 1960, they did not give up. Instead, their motto became "It can be done in '61."

So of course he tried to improve my swing. He put together a contraption using one of my mother's frying pans to assist in foot positioning. When this didn't work, I was redeployed to holding the football for him so he could perfect his place kick.

Lest this sound like a feminist nightmare, it wasn't. My interests may not have been athletic, but well into adulthood he's been my cheerleader. So much so that a friend of his said to my husband, "I hope they warned you that Edna and Michael come as a package."

My husband knew this before we got married, and didn't mind. Whenever he heard me on the phone with Michael, I was laughing. No matter what type of disaster the day had served up, one call to him and I'd be fine. Michael always had jokes and solutions.

But when he called a year and nine months ago to tell me he had received a diagnosis of probable Lou Gehrig's disease, it was no joke, and since that time, and confirmation of the disease, I, along with the rest of my family, have been looking for solutions.

To search online is to search in vain. Lou Gehrig died 67 years ago, but little progress has been made in finding the cause of ALS, a progressive neurodegenerative disease that is always fatal. The one drug approved by the FDA slows down the disease only minimally.

After being diagnosed with ALS, Lou Gehrig told others his chances were "50/50." It's not clear whether he was trying to spare them, or whether they were trying to spare him, but it is clear the disease spares no one who gets it.

Before my brother's illness, I would sympathize with a colleague when she'd stop by after hours to talk about her sister's battle with ALS. Regardless of what I was doing, I would stop, and I would listen. I even took to wearing the red "Strike Out ALS" wrist band, and said that I would participate in the Annual ALS Walk.

But though I listened to my friend carefully, I realize now that I heard her only dimly, as though I were underwater. It never occurred to me that ALS would strike my family.

When my friend talked about the disease, it still seemed far away. It was Tuesdays with Morrie, not any day with Michael. It was part of a book or movie package, not part of my own personal one. And that I discovered on my first ALS walk in 2006 is how ALS walks into most people's lives -- out of the blue.

ALS is a rare disease, and compared to the sea of people I jogged with years ago in the Race for the Cure for breast cancer, the turnout for the local ALS walk is meager. But 30,000 Americans have ALS at any time. There are about 5,000 new cases of it each year. To participate in a walk is to get a glimpse of how many lives are affected.

The day of last year's walk, this area's sixth, was cold and cloudy, but there was an air of festivity as groups of family and friends waited to begin. By the March of ALS Faces exhibit, an energetic woman in her 70s told me she was walking in memory of her older sister and a middle-aged woman pointed to a picture of her friend. "I was part of his care team," she said.

Later, as I walked down the Avenue of Pines in Saratoga Spa State Park, I saw a boy who couldn't have been more than 4 walking "in honor of his daddy."

A small study in Italy recently suggested that lithium may stem the disease. My brother's doctor said this report has taken the ALS world by storm. At first my brother's spirits were buoyed, but now they are more tempered.

His doctor has cautioned that at best lithium can slow the illness down, not arrest it, and my brother knows that no large-scale testing has yet been completed. A therapist friend of my brother's says he tells his terminally ill clients, don't think "what if," think "what is."

It's been great advice, helping all of us stay rooted in the moment, the only thing we have. But even as I think what is, I hope for what might yet be.

I am, after all, the sister of an Orioles fan.

Edna Goldsmith lives in Troy.

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