Challenge This

Ice buckets may dwindle, but ALS is still rare, deadly and unknown

Since losing her son to amyotrophic lateral sclerosis 11 years ago, Santa Fean Claire Whitaker is still coming to terms with living with the disease. “I saw it up close,” says the 86-year-old, “and it’s mean.”

ALS, a deadly motor neuron disease also called Lou Gehrig's, received widespread national and international attention when the Ice Bucket Challenge—an online fundraiser that encouraged people to either donate $100 to the ALS Association or dump ice water on themselves and donate a smaller sum—went viral earlier this summer.

The challenge has since calmed down, but the disease, of course, is still very real. On the last Wednesday of the month, Whitaker attends an ALS support group on the Southside Library.

"It's very powerful to be in the presence of these people, all of whom know they have a limited lifespan," she says.

She's also preparing for the upcoming three-mile Walk to Defeat ALS, which will be held in Albuquerque on Saturday, Sept. 28, starting at 10 am at the Isotopes Park. SFR recently sat down with Whitaker to talk about her connection to ALS and her role in fighting the disease.

SFR: What age was your son when he was diagnosed with ALS?

Whitaker: He was 49 years old. He had a wife and five kids. He was a very successful TV writer and producer. It was first a little limp. Then it was a big limp. I was kidding him about being a middle-aged jock, because he was playing a lot of basketball and coaching at that time. And it just got worse. The next thing was he could no longer walk. And then his hands began weakening. His voice began to fade. And his breathing became labored. Finally he could not speak at all. But he had a wonderful device, a kind of halo device that went around his head. He still had neck muscles, he could tap on little sensors, he could tap out Morse code.

How long did he survive between diagnosis and death?

Two years and seven months. They say [one can survive with the disease for] three to five years, but he had it before [he received the diagnosis]. We were living in Arizona, and we sold our house. We moved two doors from him, so that I could be there. It got so he couldn't communicate. Every day, my daughter-in-law would shower him. Just the physical stuff was enormous. And the emotional burden of it, too. You're losing somebody you love, and you're helpless. You have to try and comfort them and keep them stimulated. It's just emotionally, mentally, physically, everything…burdensome really isn't the word because you're doing it because you love somebody.

How did you get involved in Santa Fe?

I had been working closely with the ALS Association, and one of the officers there put me in touch here. Somebody told me what the Santa Fe support group was and when it was. And I asked if it would be OK if I went. They don't go into potential treatments or cures because they don't want to raise any false hopes, but it's what you can do to make yourself more comfortable and to get the most out of life. And so it might be how to modify your home, so it's easier to get around, or so that's it's easier to shower. Or dietary concerns, as they get so they can't swallow, and resources for that.

Why is awareness for this disease important?

It's considered an orphan disease because at any one time there are only 30,000 people in the country that have it. They die fast. They don't hang around. As I follow the research, I realize that some of the discoveries that were made can be applied elsewhere. They are making enormous strides with stem cell research. That's why I think anything at all you donate to [research for] a disease that is as deadly as this one is good. As my son said, he felt like he was buried in sand up to his neck. There was nothing he could move, and yet he could feel pain, he could feel an itch.

What did you think of the Ice Bucket Challenge?

I loved it. I know it got to be annoying for a lot of people, but I thought that it was brilliantly conceived. It was simple, something you could do at home. It was silly, so people would watch. And then the fact that you pass it along to your friends. Who could not resist? I did it. It got 1,000 shares on Facebook and now it's on YouTube. I think it says "86-year-old great grandmother takes Ice Bucket Challenge."

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