For Stone Mountain man, new ALS study is chance to beat the odds

STONE MOUNTAIN, Ga. - A Stone Mountain man says the ice bucket challenge may be long gone, but don't forget about people like him: people living with ALS. It's a fatal motor neuron disease that often takes the life of the person within two to five years.

Bert Hamilton thought he had a pinched nerve, but an online search led him to a doctor after he suspected he might have ALS, also known as Lou Gehrig's disease. The doctor confirmed he did, indeed, have the illness.

"I went to the elevator and cried by myself," recalled Hamilton.

The condition makes your muscles weak and difficult to control.  Hamilton's hands are clawed making it difficult to do many things with his hands.

"I kind of lose patience because you don't know if you're going to have enough time," said Hamilton." I'm not ready to die yet; I'm only 46." 

So, although he'd had some rough falls, he still fights.

"I had a nasty fall where I had 11 stitches from losing my balance," recalled Hamilton.

For almost a year, Hamilton has been participating in a new ALS clinical trial at Augusta University called the HEALEY trial. Trials began in 2020 with a small group of sites. Augusta University began participating in the study in 2022.

Hamilton is testing out one of seven drugs that could slow down the disease, extending life by targeting a key protein linked to the illness.

"The reason why that's so cool is that tdp43 is present in 95 to 98 percent of ALS patients," said Dr. Ben Barnes, a neurologist and assistant professor at Augusta University.

Dr. Barnes says Hamilton is toward the end of the mid-stage of the disease, and it's too early to say if his daily dose of this medicine will work.

" We look forward to the data analysis at the end of every regimen and anxiously wait to see if this one will be the answer our patients are waiting for," said Dr. Barnes.

Dr. Barnes calls Hamilton very strong and a good example for other patients.  Hamilton insists he won't give up.

"I want to be able to button shirts, I wanted button pants, I want to be able to tie shoes," said Hamilton.

Hamilton wants to beat the odds. He wants to live.

Hamilton encourages readers to learn more by exploring the ALS Association's website.