For some Delawareans with multiple sclerosis, fundraisers like this weekend’s Bike to the Bay aren’t just another yearly event on the calendar. They leave life-long impressions on those living with the disease.
Since getting diagnosed with multiple sclerosis five years ago, Jason Troyer has tried to make the most of it.
Like most people, his first attack came unexpectedly. He was 26 at the time and didn’t know what was happening to him.
[audio:http://www.wdde.org/wp-content/uploads/2012/09/biketothebaypkg.mp3|titles=Listen to James Dawson's feature on the impact on Delaware's Bike to the Bay for MS.]
“When I first got diagnosed, I was numb from the neck down and I just couldn’t feel anything and everything. It felt like my whole body was asleep. You know, I had that whole tingling sensation throughout my whole body,” said Troyer.
At first, he took his doctor’s advice to learn everything he could about MS. But stress from reading about what the disease could hold in store for him brought him to a breaking point.
“Man, talk about starting to get depressed," recalled Troyer. "You’re hearing all these stories about what people are going through and so I just stopped reading them because I said to myself, you know these things that could happen, they might not happen. Why worry about something that might not happen?”
For Troyer, the diagnosis became a catalyst for adopting a healthier lifestyle. Weighing 315 pounds at the time, he eventually shed 135 pounds.
Four years ago, he rode in his first Bike to the Bay fundraiser and has returned each fall. Troyer was hooked after finishing the race for the first time.
“You’ve got the great big finish line, people there cheering you on. You come through there and you feel like you’ve just won a race. Even though, obviously, you’re not really necessarily the first one through, you really feel like you won,” said Troyer.
Run by the National MS Society’s Delaware Chapter, Bike to the Bay raises money to fund ongoing medical research in hopes of developing further treatments for the disease.
The state’s only multiple sclerosis specialist, Dr. Jason Silversteen explains medication for the disease only emerged recently in the early 1990s.
Prior to 1993, patients used steroids to help abate new symptoms, but the treatment didn’t stop their overactive immune system from attacking their brain and spinal chord.
With the Food and Drug Administration’s approval of Aubagio last week, sufferers now have nine different treatments to choose from and a tenth, BG-12, has showed strong promise in clinical tests according to two new studies published online in The New England Journal of Medicine Wednesday.
But all of those treatments only work for patients with one type of MS.
Silversteen explains that 85 percent of patients have what’s called a relapsing form of the disease, which is characterized by sudden attacks spaced out over time. The remaining 15 percent progressively deteriorate.
“Unfortunately, despite our progress with the relapsing form of the disease, coming up with drugs that modulate or suppress the immune system to try and reduce attacks and progression of disease, we have not moved the bar very much, if at all, for those people that have what’s called progressive disease,” said Silversteen.
That’s one reason why he says fundraisers like these are critical for supporting new drugs and treatments through a lengthy clinical trial process. From start to finish, it takes on average about nine years for a new medication to hit the market.
The options patients have now greatly reduce the chance they’ll relapse within five years. But Silversteen says scientists need to expand the way they think about treatments.
“We need to find another way to sort of measure, uh, how well these drugs are working," said Silversteen. "We’re going to start to evolve into different tests, different techniques at analyzing, uh, what is actually going on in the brain of somebody with MS.”
As for Troyer, he says his new oral pill is wonderful. It’s easier for him to take than an injectable medication and he isn’t as prone to forget to take it. Now his focus is on riding the 175 mile, two day Bike to the Bay course to Dewey Beach this weekend.