HARRISON — There has always been something a bit odd in the way Jeff Stern walked. As a kid growing up, people thought his gate was off and over the last decade, people often asked him if he was limping.
He didn’t think so but began noticing more “weird spasm[s]” happening in his legs.
“I thought it was restless leg syndrome,” Stern said.
But that wasn’t what was going on. It all made sense to him in May 2012 when he was diagnosed with a rare neurological disease – hereditary spastic paraplegia (HSP) – which over time “steals a person’s ability to walk.”
“I think I’ve had it my whole life,” Stern said. “Even when I was a kid, others would remark I was walking strangely.”
After the life-changing diagnosis, Stern wanted to do something to give back and help others who suffer from HSP. That’s why he’s hosting a “Dining to Donate” fundraiser at Applebee’s later this month to help pay for research into the rare disease.
As for how Stern discovered he had HSP, the Bridgton resident always had trouble with his balance and coordination tests at his annual physical. So his doctor in Norway sent him to a neurologist in Scarborough, who did an MRI of his brain and other tests, including shocking his fingers and toes with electrodes and measuring his response time.
“That was not a pleasant one,” Stern said about the test. He also had his DNA tested at the National Institutes of Health in Maryland, which confirmed his neurologist’s diagnosis of HSP.
“The hereditary thing is kind of weird because no one in my family thought anyone had it,” he said, adding looking back, his now deceased uncle displayed some of the same symptoms as Stern did.
The disease wears down a person’s mobility through spasticity, where leg muscles become rigid and unresponsive, according to Stern. He is Maine’s contact person for the Spastic Paraplegia Foundation and according to its website, HSP also affects the hip muscles and people often have to use canes, walkers and sometimes eventually wheelchairs. He described the spasms as electric charges or shocks to his legs, which can sometimes last for a couple of hours.
“[There are] only 25,000 of us in this country who have it. I am one of the lucky ones,” Stern said, laughing. He noted he has a mild case. “There will probably be other things that will do me in.”
The disease has had major impacts on his life. He is the owner of Fiddlehead Environmental Consulting, which specializes in water testing and erosion control. His mobility has taken a hit and he now uses a walking stick given to him by his girlfriend, Sofe Silverman.
He had to come indoors and do more administrative work instead of all of the outside field work he enjoys so much. Stern has always been an outdoor enthusiast and regularly backpacked and hiked throughout the region. Now he has to limit himself to shorter, less steep hikes and make sure he has a hiking buddy.
“If I’m hiking – this is kind of the scary part – at a certain point my legs will get stiff and heavy feeling. I have to stop at a log … I have to say to my legs, ‘lift,’” Stern said. “I know other people who have this, they can’t get out. … I am so thankful I can do these things at least.”
He estimated in Maine, there’s roughly 30 or so people with the same disease and they’ve created an informal support group and keep in contact via email and also meet usually once a year for lunch. Stern said there could be more people in Maine with HSP because “it disguises itself as other things.”
“There might be a lot of people out there who might have it and don’t know about it,” he added.
There is no cure for HSP and Stern currently manages his symptoms through medicines that help control the leg spasms and cramping and through exercise.
“The doctors say to keep active, to keep things moving,” Stern said, noting he does by walking and riding a stationary bike. “Yoga – that’s been very beneficial. It has really helped [with] balance and coordination. Without that I think I’d be in a worse way than I am now.”
But there are others who are worst off than he is and that is why Stern wants to raise funds to research HSP. Dr. Craig Blackstone at the National Institutes of Health is “doing a lot of cutting-edge research on this,” as are researchers in Australia, England and Germany, Stern said.
“The reason were trying to do this fundraiser is we’re trying to find a cure for it,” he said. “They’re making progress on it so maybe they will [find a cure].”
His “Dining to Donate” fundraiser will be held from 4 to 9 p.m. on Thursday, Feb. 25, at Applebee’s on Route 26 in Oxford. The restaurant will donate 15 percent of each patron’s bill (excluding tax and tips) to support research for rare diseases at the Spastic Paraplegia Foundation.
Customers have to bring a flyer and give it to their server before ordering. Flyers at available at Books N Things at 430 Main St. in Norway and through Sterns. Contact him at firstname.lastname@example.org or 595-0317.