At first, Scott Dunaway noticed the small changes in his body. He’d catch his balance by taking a step to the side. And when he looked down, his left hand would twitch.
But he wrote these subtleties off, until a year and-a-half later when his symptoms stared him straight in the face.
“I was on a day hike and we took a wrong turn,” the Fort Mill resident said. “It got hot and I started feeling like I was getting exhausted, but I was used to working in the heat all the time.”
A carpenter by trade and an avid outdoorsman, Dunaway had always acclimated easily to the elements. However, he could suddenly sense his body was struggling.
“I got hot on the back of my head and my right leg just stopped completely working,” he said. “I had to find a stick and walk back out. It was at that moment that all my worst predictions came true.”
At the age of 47, Dunaway was diagnosed with multiple sclerosis. Within the five years since, he’s seen six neurologists, tried seven medications, traveled to California for treatments, and donated himself for clinical trials at the National Institutes of Health in Washington – but nothing has worked.
According to the National Multiple Sclerosis Society, MS is a disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and the body. It involves an immune-mediated process, an abnormal response of the body’s immune system directed against the central nervous system.
The most common form of MS is called relapsing-remitting; About 85 percent of people with the disease are initially diagnosed with this type, according to the National Multiple Sclerosis Society. It’s characterized by attacks of neurologic symptoms followed by lapses of partial or complete recovery.
Dunaway was diagnosed with primary progressive MS, a continual worsening of neurologic function with no early relapses or remissions. It affects approximately 15 percent of people with MS.
“MS is a like a slow-moving stroke. It gives you time to contemplate life in no other way that I know of,” he said. “It completely flipped my life upside down.”
After only five years with the disease, Dunaway’s movement is limited to intervals of about 12 feet – mostly from the bathroom to the chair. But he’s keeping his upper body active and his heart strong in preparation for his next procedure.
“Your immune system’s like a teapot and once it tilts and starts letting out a little water it wants to fall over. But if you ever get it to stand straight again, it will very easily because it’s balanced back out,” Dunaway said. “That’s what HSCT does.”
He’s referring to Hematopoietic Stem Cell Transplantation. It is similar to a bone marrow transplant except the patient receives his or her own bone marrow. In an attempt to reboot the immune system, the patient’s blood is drawn and stem cells are stored for later use. Doctors administer a powerful cocktail of chemotherapies to suppress the patient’s immune cells, then infuse the patient with the stored stem cells.
Dunaway said it’s his last hope. But the therapy hasn’t been approved by the U.S. Food and Drug Administration, so he has to travel out of the country for it.
“In America, they have clinical trials. They’re doing relapse-remitting all day long,” he said. “Most people are younger with that type of MS. You have to be under 50 and preferably under 40 (to qualify).”
But Dunaway’s 52 now with primary progressive MS. So he’s scheduling the procedure in Mexico, the closest hospital where he can undergo HSCT. However, his health insurance won’t help cover the $65,000 cost.
To help offset the expense of the treatment, several of Dunaway’s friends are planning a fundraiser. On Jan. 13, from 3-11 p.m., four bands will converge at Events at Manchester in Rock Hill – Outlaw Symphony, Weekends, The Rockaholics and the Taylor Brothers Band.
Tickets cost $30 for adults and $12 for age 12 and under, the price includes a barbecue plate. Event organizer Roseann Chase said she’s still looking for more silent auction items. She’s known Dunaway since they attended Fort Mill High School in the ‘70s.
“Scott still has young kids,” Chase said. “I knew he had MS, but I didn’t know that it was so aggressive. He’s declined very fast over the last five years.”
According to Dunaway, his odds are 70/30 that HSCT will halt his disease. But he said even if those numbers were reversed, this is his only option.
“People like me, with primary progressive MS, we’re in such a tight window. Are you sick enough that you’re willing to go through that? And are you too sick that you can’t go?” he said. “If you’re on the train I’m on, then you’ve only got a couple of years to get that figured out before it’s too late.”
For tickets, visit eventbrite.com/e/scott-dunaway-ms, call 803-417-8108 or email firstname.lastname@example.org. Donations can also be made at youcaring.com/scott-1009031. Events at Manchester is located at 1965 Cinema Drive in Rock Hill.
Stephanie Jadrnicek: email@example.com