GRAND RAPIDS, Mich. — The push to keep going for John Wilkinson comes from red-colored, paper-tasting liquid in small vials.
“To try to do something, anything, that might help slow down the disease or possibly reverse it and improve,” said Barbara Harvey, John’s fiancee.
The Grand Rapids man says he’s not ready to leave Barbara or their friends and family. At one point very active in his life, he’d love to play another game of pickle ball or ride his bike too.
“The HEALEY trial at least gave us some hope,” said Harvey.
In late 2019, doctors diagnosed John with amyotrophic lateral sclerosis, more commonly known as ALS or Lou Gehrig’s disease.
Wilkinson’s symptoms started with weakness in his hands.
ALS affects the nerves that control a person’s muscles and eventually paralyzes their body. For 85 percent of patients, it’s not known why they develop it. Within three to five years, they pass away.
Just recently, Wilkinson lost his ability to talk.
“It’s hard, but we try not to think about the downside of it,” said Harvey. “John is a really upbeat person, so he doesn’t worry about too much on what he can’t do. He focuses on what he can do.”
The FDA has approved three medical treatments for ALS, but only two slow the disease down and results vary widely.
Wilkinson says the one treatment he has been on since his diagnosis doesn’t do much.
Doctors say speeding up research is crucial, which is why Spectrum Health decided to join an innovative program called the HEALEY ALS Platform Trial.
“It’s just a great way to sort of look at multiple drugs at the same time in a population that doesn’t have a viable cure right now,” said Paul Twydell, a neurologist at Spectrum Health.
The HEALEY ALS Platform Trial, a national study led by the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital, allows researchers at 54 sites across the country to test multiple ALS treatments at once.
According to officials, the trial time is cut in half to six months and reduces costs by 30 percent.
Wilkinson was Spectrum’s first participant. He started his treatment, which is one of five currently being analyzed, in February.
There are now seven other people from West Michigan enrolled.
“These trials are geared towards sort of looking at those common pathways of ALS, in essence, hoping to slow it down by going after another aspect of what happens to the neurons in our body once the disease has started and what are some therapies that can maybe prevent the degradation of those nerves instead of actually stopping the process before it full starts,” said Twydell.
Wilkinson notes very little has changed since he started, but he isn’t discouraged.
“Everybody progresses differently,” said Harvey. “It’s hard to say if he would’ve been worse if he hadn’t had it.”
Although Wilkinson wants it to help his diagnosis, he says another reason to keep pushing is the idea that it could help other patients and their families.
“Even if this particular treatment fails, the scientists can move on and say, ‘Well, that approach didn’t work; we need a different approach,’ and if it works, maybe we can help other people who get diagnosed,” said Harvey.
For people who need ALS resources in West Michigan, Wilkinson’s family suggests the Susan Mast Foundation. It provides support and guidance for patients and caregivers.
To learn more, click here.