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Healthwatch 16: Neuromuscular Summit

SCRANTON, Pa. — For the fifth year, Geisinger Medical Center is hosting a neuromuscular summit. It’ll be held this weekend at Geisinger Commonwealth...

SCRANTON, Pa. -- For the fifth year, Geisinger Medical Center is hosting a neuromuscular summit. It'll be held this weekend at Geisinger Commonwealth School of Medicine in Scranton.

The event is for medical professionals, patients, and caregivers.

We talked with a man from Columbia County who knows firsthand there's a lot to learn.

Bob Cleaver of Bloomsburg is a U.S. Navy and Vietnam veteran who had surgery on his arm. When that arm still didn't work right a few years later, he came to Geisinger to get it checked out and that's when doctors discovered Bob had ALS. It was February of 2017.

"I know looking back I had it before that, though, so I figure about three years," he said.

ALS stands for Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's Disease. It's a progressive neurogenerative disease for which there is no cure.

But there is, as of a few years ago, a drug to treat it, called Radicava. It's an at-home infusion, an hour a day for 10 days in a row. Bob Cleaver thinks it's helping him.

"I have 14 days off. The last two or three days, I can feel I'm ready for another infusion, like I'm running out of fuel," Bob said.

"Studies have shown that it, in some patients, (it) slows the progression of the disease and allows people to have better quality of life and longer duration of life," said Dr. Scott Friedenberg, director of neuromuscular services at Geisinger.

Dr. Friedenberg says up until a few years ago, there was very little to offer those who'd been diagnosed with ALS.

"If you had a discussion with a specialist, they'd say, 'Sorry, we have nothing to offer.' In the last two, three years there's been an explosion of medical knowledge," Dr. Friedenberg said.

That's why Geisinger puts on an annual event called the Neuromuscular Summit. This year, it's at Geisinger Commonwealth School of Medicine on Saturday, September 14, a full day to discuss the topic with doctors, therapists, even a health plan rep to talk about finances.

As for Bob, he and his wife Jean have made some adjustments, like moving dishes down a little lower in the kitchen, but for now, Bob says he's taking it day by day, still traveling, still laughing.

"That's what keeps me going, though. My body may disappear, but the humor will still be there."

Bob Cleaver says he has a whole team behind him, including physical therapists, speech therapists, and nutritionists, just to name a few.

Go here for more information on the summit or call 570-271-6692.