DURHAM, N.C. — With all the wonders of modern medicine, ALS still troubles even the most accomplished physicians.
“ALS stands for amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease,” said Dr. Richard Bedlack, who runs the ALS Clinic at Duke University. “It’s a degenerative disease of a part of our body called motor neurons. Motor neurons are kind of like the wires that connect the front of the brain to the back where you make decisions to the back where you carry out actions. So, as it progresses, those motor neurons short circuit. You become disconnected from your muscles. You gradually lose the ability to walk, feed yourself, dress yourself, speak, swallow, eventually breath. Most who get ALS become rapidly disabled and live somewhere between three and five years.”
The disease and daunting and it is estimated that at 16,000 Americans have it.
“When I saw my first patient with it 22 years ago, I remember working under an attending physician thinking this is the most amazing thing I had ever seen,” Dr. Bedlack said.
But, finally, there is some hope largely thanks to the work of people affected by the disease who have decided that enough is enough.
“We’re just trying to prevent another family from going through what we did. Just as simple as that,” said Brett Hoge, who lost a stepfather to ALS.
Hoge has spent the years since raising as much money as he could to find a cure.
His latest venture is a golf tournament and party that will feature American Idol winner Taylor Hicks whom Hoge met on a golf course in Birmingham, Alabama.
“There wasn’t anything around here except the ALS Association walk,” Hoge said. “I wanted to work with Duke and Dr Bedlack. He’s the best and biggest and most comprehensive clinic around here.”
So he put together the event to bring not just money for research but some hope to those doing all the hard work on the front lines of dealing with the disease.
“And if I stop and think about it, yeah, it’s tough. There are some days when I wonder whether this is what I should keep doing,” Dr. Bedlack said.
But then he remembers the work being done all over to find not just cures but better quality of life for those who have ALS now.
“I think that we really are close to curing some forms of it,” Dr. Bedlack said.
See more in this edition of the Buckley Report.