PITTSBURGH — Ed Cwalinski recalls the most painful two years of his life.
“I had Thanksgiving dinner on the floor. I couldn’t go to school. I was homeschooled,” said Cwalinski. “There was a point that I didn’t want to live anymore.”
He has dystonia. It’s a movement disorder that can cause the muscles to spasm.
Home videos show just how painful it was for him when he was a senior in high school, but that was 21 years ago.
Now he’s “99 percent. I live a normal life,” said Cwalinski.
That’s why he wanted to catch up with us, two decades after, what was then, a groundbreaking surgery with AHN doctors. At the time, he was the youngest person to have deep brain stimulation for his dystonia in North America.
Dr. Donald Whiting with Allegheny Health Network did the surgery. He put an electrode down deep into Cwalinski’s brain so that it touches the part of the brain that controls body movement. It’s connected to a device that’s implanted under the collar bone. Post-surgery, stimulation can be adjusted to control the muscles and spasms by using a computer program on a tablet.
“To try to get some semblance of normalcy to the motor function in the body,” said Whiting. “It’s an active, evolving kind of treatment because the disease is progressive. This isn’t a cure it’s a treatment so it has to adapt as the disease adapts.”
After Ed’s surgery in March 2000 he was able to walk for the first time in two years. That fall he went onto college. He resides in Gibsonia where he has been working in IT.
“This DBS procedure has given me back my life. And what do I want to do? I want to help other people,” said Cwalinski.
He is the co-leader of the Western PA Dystonia Support Group. He has paved the way for others suffering from the debilitating effects of the disorder, as the FDA approved deep brain stimulation for dystonia a few years after he had the surgery.
“He’s personally offered hope to hundreds of people with dystonia,” said Doctor Whiting. “So I think he’s a perfect example of giving back when you really benefit from something. "
The electrode only has to be implanted once and doesn’t have to be replaced. Some of the other equipment will have to be replaced every 10 or so years.