'They see me strug gle and they worry'

By Frank Abderholden fabderholden@scn1.com

Grayslake woman's brave battle with ALS


This 37-year-old mother of three is forthright about her disease and retains a tight grip on her sense of humor, even though she cannot grasp the cap on a pen and pull it off.

Probably the hardest part of Aimee Chamernik's life in Grayslake is not the deterioration of her young body, but explaining to her children that in the not too distant future she is going to pass away because of amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig's disease.

"They definitely worry about things most 9- and 6-year-olds don't worry about. They see me struggle and they worry," she said of her children, Nicholas, 9, Emily, 6, and Zachary, 2,

"But we keep them a part of the conversation and keep them informed as to what's going on," she said. Her husband, James, agrees.

"It may seem counter-intuitive, but often kids are more scared when they think the adults around them are hiding something, and they feel they can't ask questions and trust the adults to give a straight answer," he said.

Aimee says they have a rule, "There is no question that is off limits," she said.

"They pick up on so much emotionally, that's why honesty is so important," she said. And that can mean some hard questions, like the one Nicholas asked about the survival rate being between two to five years with the onset of the symptoms.

"He asked, 'Does that mean we have one year left?'" she said.

"We can't know exactly how much time we have," she answered him.

So she stays focused on the important things.

"We try to squeeze in as many good memories as possible. We're here now. I want to use the time we have right now to have as much fun as we can," she said.

On Saturday the whole family will be joined by friends and former co-workers for the fifth annual ALS Walk4life at Montrose Harbor in Chicago where her "Ask about Aimee" team has set a goal to raise $15,000 for the Les Turner ALS Foundation.

"I was diagnosed Sept. 8, 2004...not that we're going to celebrate or anything," she said dryly about the two-year mark.

The symptoms started 18 months earlier, the first being slurred speech. "I was reading aloud at night to my children and my son would correct my enunciation. I chalked it up to be tired," she said.

But when she mentioned that to her doctor, her doctor didn't think that sounded right and she went through a battery of tests before the final diagnosis. There is only one drug approved by the Food and Drug Administration for ALS called Rilutek. It has shown modest effects for slowing down the progression of the disease.

"And that's really it. Although there are lot of different supplements people are trying," she said.

She can also take medications that help her deal with other symptoms. Strange effects of the disease are illogical responses to things she experiences. "When a child gets hurt I laugh. It's very, very frustrating thing, especially for the kids. They rely so much on non-verbal body language. I'm much more likely to laugh when I'm concerned or angry," she said.

She uses a cane to help her coordination and balance and she will play catch with the kids in the house because it is safer than the uneven ground outside. Aimee knows a cure may not be found for her but she hopes medical advances such as stem cell research will get more of a boost. She was disappointed with President George Bush's recent veto of a stem cell bill.

She explains that she won't debate the sanctity of life, but "I don't understand how just throw away frozen embryos. That to me is unforgivable. All types of patients could be helped by the research," she said, citing recent work that found stem cells helped mice with ALS improve muscle movement.

In the meantime she is concentrating on her family and answering those darn kid questions, like Nick asking if she was worried that Zach might not remember her when she is gone.

"I told him that I definitely worry about that, and I also worry that he might not be able to remember me. But all I can do is keep fighting as hard as I can. And I let him know I'm counting on him, his sister and dad to show Zachary lots of pictures and tell him lots of stories to help him know me," she said.

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