Local Man Struggles with ALS

Published 08/22 2014 04:25PM

Updated 08/22 2014 05:39PM

BOSWELL, SOMERSET COUNTY - A few months ago, few Americans had heard of ALS, a progressive disease that affects about 30,000 Americans.  Since late July, when the Ice Bucket Challenge went viral, more than $40 million has been raised to fight amyotrophic lateral sclerosis (ALS).  One local couple is grateful for the attention to the devastating disease they've lived with for more than a decade.

Dave Hostetler just celebrated his 70th birthday on Thursday August 21.   He spent it in the wheelchair he's needed for more than 12 years.  Dave was diagnosed with ALS in 2001, when he was 57 years old.

His wife Betty says the whole family was at Hershey Medical Center for the diagnosis.  She remembers, ""we cried and cried, and then we tried to find out as much as we could about the disease. Some of it we didn't want to know."

On the positive side, Betty says, Dave's outlived most patients who survive 2  to 5 years on average, but he depends on her and other caregivers, for all of his daily needs.

She uses a  lift device to get him out of bed, or anywhere he needs to go. He also has to be bathed and dressed. Six days a week, she gets help from caregivers coordinated through the Alleghenies United Cerebral Palsy organization, and paid for through the Medicaid Waiver Program.

Betty says, "it's not how Dave and I envisioned our later years, our retirement years, Dave's desire was to hunt and fish and we never dreamt that our lives would be like this."
Dave hasn't been able to talk much since his 3 strokes and since he doesn't like computers, refuses to use a talking board.

"I believe Dave hears what he says plain as day," Betty says. "He knows exactly what he's saying but when I heart it, it's not that plain." But the couple, married 46 years , manages to understand each other.

"I look around and I see people that are so much worse off than Dave and I,  I am so grateful that we have what we have," Betty says.  She says their faith gives them strength and helps them cope with the disease.

Dave says being ornery helps him relieve the stress of dealing with ALS.  Betty  says frustration sometimes does make him cry.  Still, she says life is good.

The whole family tries to take part in the annual ALS Walk in the Johnstown area. They're proud members of Hoss's team, taken from the name Hostetler.

Betty says she's glad that the Ice Bucket challenge has raised so much money for ALS.  She hopes it helps lead to a cure. The ALS  Association has paid for Dave's ramps and also gave the couple a grant, to help when  Betty had surgery.
The ALS Association office, headquartered in Pittsburgh oversees 31 counties in Western Pennsylvania, and has 300 ALS clients.  The Association helps 900 clients in Pennsylvania.



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