FREEBURG — The thing Joel Newman never mentioned when talking of his Parkinson’s disease was the unfairness of it. He’s too busy focusing on finding treatments to help him feel normal again.
“It’s slowly debilitating,” said Newman, 55. “It affects your movement. You have tremors. Your focus isn’t really there. There’s some pain. It’s terrible.”
Wenzhuan He, MD, a neurologist at UPMC Susquehanna, described Parkinson’s disease as “a progressive illness which targets brain cells in the specific area of your brain that produces dopamine, a chemical that helps relay messages from your brain to your body.” The loss of dopamine can cause people to “develop a tremor and have difficulty turning thoughts about movement into action.”
Newman was diagnosed with Parkinson’s about seven years ago, when he saw a doctor about a twitch in his left index finger.
“At Geisinger the guy told me, ‘You’ve got Stage 1 or Stage 2 Parkinson’s,’ and I lost it,” Newman said. “You know, you’re telling me I’ve got an incurable disease that’s just going to worsen progressively.”
Today Newman’s left hand twitches constantly, even while he sleeps. Chronic spasms make his arm feel like a rock. He can drive with difficulty. He sometimes wears a brace to keep his left foot from dragging when he walks. Standing or walking for more than 10 minutes is tiring. Focusing on a conversation can take effort.
He also deals with injuries brought on by his early athletic years. A 1982 Selinsgrove Area High School graduate, Newman qualified for the 1981 Pennsylvania freestyle and Greco-Roman All Star Wrestling team, was third in the 1982 PIAA Class AAA Wrestling Championships and won the 1984 freestyle Greco Roman Eastern National Wrestling Championships at Lehigh University.
“My back’s shot. My neck. My knee,” he said. “Part of Parkinson’s is, it takes away your ability to move. I can’t even work out anymore.”
One thing he’s grateful to still have control of is his voice. Just a week ago he and a friend went to Front Street Station, in Northumberland, and he sang karaoke to a Joe Cocker song.
“I did a lot of singing in my life, and I was told I was pretty good, back in the day,” Newman said. He even sang with Debbie Reynolds about 20 years ago at a Bloomsburg Food Show.
Daily medications help slow the progression of Parkinson’s disease, but there is no cure. Newman takes carbidopa-levodopa to help replace some of the dopamine his brain is losing, but the medicine can eventually cause tremors of its own, he said.
Alternative treatments have shown some success with Parkinson’s, but they’re not necessarily covered by medical insurance. Newman has started a Go Fund Me page (www.gofundme.com/hope-for-joel-b-newman) to try to raise money for new treatment.
So far, Newman’s looking at four treatments: Deep brain stimulation, MRI-guided focused ultrasound, pluripotent stem cells (derived from the skin) and regenerative stem cell therapy from bone marrow. Only the first, deep brain stimulation, is covered by insurance, but Newman is “not too thrilled” at the idea of brain surgery.
He was impressed with a video he saw of a woman named Kim Spletter who underwent MRI guided ultrasound at University of Maryland Medical Center in Baltimore. After being wheeled in to the procedure, she was able to walk out on her own. The stem cell therapies also offer advantages and disadvantages that must be weighed.
“I can’t wait to have one of these procedures,” he said. “I need hope.”
Alternative treatments can run from $13,000 to $30,000.
“If I was working, it’d be no problem to get the money,” Newman said. “Any help I can get from anybody, I’ll be grateful. If I could just get these tremors stopped, it would give me a better quality of life.”
For more information, visit www.gofundme.com/hope-for-joel-b-newman.