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Riding for a Cure to Dystonia

Jake Silverman has been battling the disease since fifth grade. Jake's Ride is Sunday.

Jake Silverman seems like any other eighth grade kid. He likes to ride his bicycle, play ping pong and fish. He goes to Devils games and is a Giants fan.

If you ask him what his favorite class is at Millburn Middle School is, he'll tell you lunch. Only after prodding from his mother Nancy Silverman will he say math is his favorite subject.

But Jake is battling Dystonia, a disorder similar to Parkinson's Disease. It's a neurological disorder that causes muscles to spasm in one or more parts of the body. It affects 500,000 people in North America, and it can take five years to diagnose.

Jake has trouble writing, and it's only been within the last year that he started wearing normal shoes. But things were much worse for him starting in fifth grade when the disease first surfaced when he had strep throat.

"The doctor didn't think anything was wrong with him," Nancy said. "Writing became more difficult and then he just couldn't stop moving."

The doctors finally diagnosed Jake with strep throat and gave him antibiotics, but Nancy said he was never the same. In fact, she said, he got worse to the point where he couldn't go to school and had trouble walking. He stopped being able to wear regular shoes and either had to go barefoot or wear slippers.

Jake said it was like someone else was telling his body what to do.

"You would need to hold me down to make it stop," he said. "It was like someone was in me and telling me what to do."

Jake said it was annoying not going to school because he rarely got to see his friends. He was confined to a wheelchair and then a motorized scooter, but when he did see his friends they used to race the wheelchair and the scooter.

"Through all of this, Jake's personality never changed, and his friends were right there with him," Jeff Silverman, Jake's father, said.

Finally in April 2007 Jake was diagnosed with Dystonia when he was in sixth grade. The doctors decided to use medication to control the disease, and he was taking 30 pills per day. But the muscle spasms and the pain that came with them continued. Jeff said nothing was working.

Nancy and Jeff would be up all night massaging Jake so he could sleep. Jeff said they wished Jake could sleep all the time because it was the only time he wasn't in pain.

Jake said he also hated the feeling he had when he was on the pills. He never wanted something that would alter his personality. "I wanted my mind," Jake said. "It was the one thing I could control."

About a year and a half ago Jake underwent a surgery for Deep Brain Stimulation at Massachusetts General Hospital in Boston. Electronic nodes were attached directly to Jake's brain in the first surgery. A battery was implanted under his skin in a second surgery. The battery sends a charge to his brain to tell his muscles not to spasm.

Nancy said the procedure is not FDA approved and is used most often in humanitarian efforts. There was also a chance it wouldn't work, she said. But Jake said he was so bad at that point he didn't think it could get any worse.

Jeff said the immediate result from the surgery was Jake stopped getting worse. It took a year, however, for him to start getting better. He's shown significant improvement, he said.

"We had to be so patient," Nancy said. "We wanted that instant miracle."

It wasn't smooth sailing, though, because Jake suffered an infection in his stitches and in his stomach, which was extremely painful. It put him in the hospital for a week.

Through it all Jake never lost his sense of humor. When he went to Boston for the surgery, he shaved "18-1" in his head to celebrate the Giants Super Bowl win over the New England Patriots. The doctors in Boston, however, shaved off the one.

It was Jake's optimism and sense of humor that helped his parents. "He got us through the day," Nancy said. "When we should have been getting him through the day, he would get us through the day. He took the fear out of (the disease)."

Jake was back in school last spring, attending classes for four hours per day. He's in school nearly the full day now, skipping physical education. He earned straight A's last school year.

Now the family works to bring awareness to Dystonia and raises money for The Bachmann-Strauss Dystonia & Parkinson Foundation. The second annual Jakes Ride for Dystonia Research will be held Sunday at 7:30 a.m. to noon at Glenwood Elementary School. The event raises money for the foundation, and the first ride raised enough money for four research grants.

Nancy said the community has been supportive of the family right along. Complete strangers were sending Jake gifts and well wishes. His classmates never made fun of him and were supportive, Nancy said, and some even came to Boston to see him during his surgeries.

"People were so friendly and wanted to help," she said. "Dystonia is a lonely disorder. No one has ever heard of it."

But the community learned quickly about Dystonia, she said, which was helpful because she stopped needing to explain it.

Jake's Ride was conceived when David Gardner heard the family's story at a party and wanted to help. Last year 750 riders participated and 150 volunteers helped. This year they expect 1,000 riders to participate and 150 volunteers to help.

There are one, five, 10 and 20-mile rides for participants to raise money. Jake plans to ride the 10 miles, although he's not sure he can finish. "I'll do as much as I can," he said. His family plans to ride with him as far as he goes.

Jake hopes for the future there's a quick and easy test so someone can learn they have Dystonia in five days instead of five years. He also hopes for a cure or a treatment. In fact, he wants a treatment more than a cure because it would help more people. "It's just a matter of time (before it happens)," he said.

Brett Biebelberg September 30, 2009 at 07:44 PM
There was an episode on Dateline a few months ago about dystonia. One of the boys the show followed wound up receiving Deep Brain Stimulation as well and life was on it's way back towards normal for him. Very interesting.
CM October 01, 2009 at 02:05 PM
What an inspirational story in Jake's courage and the ability of Millburn's young people to come together and support him. It makes me sad that this story has not been picked up by the mainstream media rather than the infamous, sensationilized "slut" list. What a shame. Why is it that it is not interesting for the media to focus on a story that shows the good side of Millburn's youth?
Steve Zarren November 02, 2012 at 07:37 PM
Hi, I am a former sufferer of dystonia and want to offer you my support if you are still struggling with this awful disorder. I have put many years of my life into helping dystonia sufferers find relief, and through my efforts was able to get a medical study done at Johns Hopkins Medical Center with the program that helped me. It is my pleasure and privilege to work full time in helping dystonia sufferers find relief and get educated on the health fundamentals that I have discovered that can make a huge difference on improving one's health. I have been effective in helping dozens of dystonia sufferers find relief and have worked with those in over 20 countries and 47 states. Please feel free to call me if you would like to learn more about my work and how I have been helping others. There is nothing more enjoyable than seeing those I work with find the relief and hope as I received many years ago. Remember - I Care, Steve Zarren 410-486-2525 http://www.dystoniadisease.net

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