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Jim Kennedy puts Parkinson's on pause
Wednesday October 03, 2012
Appealdemocrat.com - It started with stuttering.
Then came pain and the loss of fine motor skills. Eventually, Jim Kennedy found it impossible to put in his contacts, punch numbers on his cellphone or even turn around.
Life with Parkinson's disease had made the sharp, active man a prisoner in his own body.
"I went in and said, 'I can't do this anymore,'" Yuba County's former treasurer-tax collector said of a trip to the doctor that eventually led to a new lease on life.
Now 66, Kennedy was diagnosed with Parkinson's five years ago. A degenerative neurological disorder resulting from the loss of dopamine-producing brain cells, it affects about half a million people in the United States, with an additional 50,000 cases diagnosed every year.
Kennedy has an atypical version of the disorder, lacking the signature trembling by which it is most often recognizable but suffers from other frustrating and painful symptoms.
Despite suspicions, he lived in denial for a long time before his diagnosis.
"I said, 'I can't have that, I don't have that,'" he said.
But his wife, Wendy, a registered nurse, saw the symptoms clearly.
Kennedy, a member of the Yuba Community College District board and other community boards, had begun to stutter for the first time in his life and was walking with shoulders hunched while shuffling his feet.
When Wendy pressed him to explain the pain, offering all the diagnostic analogies she could think of, he said he felt like he had jammed his fingers in a light socket and electric current jolted down his center.
The only way to officially diagnose Parkinson's is by administering medication and seeing if it works. So, the Kennedys finally went to the doctor.
"A half hour later, I felt better and it was like, 'S---, that's what it is,'" Kennedy said.
After his diagnosis, he read as little about the disorder as he could.
"I didn't want to know. I knew it was going to be crummy," he said. "And if I didn't know, it wouldn't affect me — wrong."
Prisoner of Parkinson's
As the disease progressed, Kennedy could no longer roll over in bed or to walk the porch around his Browns Valley home without falling down. He lost about 50 pounds and Wendy began attending Yuba College board meetings with him to help him stand and sit.
"It's heartbreaking, but the hardest part was watching him deal with the loss of who he perceived himself to be," Wendy said.
John Cassidy, chief executive officer of Sierra Central Credit Union, where Kennedy is a board member, called every day — and still does — to check in. And when Wendy had to go to Seattle to take care of her mother, another friend came and stayed with Kennedy in the foothills for two weeks to help with the most basic of needs.
"I've found out who my friends are, and it's really nice to know how many I have," Kennedy said.
Despite medication, his symptoms worsened, and six months ago, he could not mask his condition any longer. He announced he had Parkinson's during a Yuba College board meeting.
It was around that time he went to his neurologist, Dr. Wenchiang Han at Rideout Health, to see what could be done. Han referred Kennedy to Stanford University School of Medicine, where he met with a neurosurgeon about the possibility of deep brain stimulation.
The two-day surgery involves implanting a neurostimulator, kind of like a pacemaker, into the chest, and inserting four thin wires about 4 inches into the brain with electrodes targeting the affected area. An extension wire connecting the lead to the neurostimulator transmits electrical impulses that block signals causing the Parkinson's symptoms.
To qualify, he underwent a barrage of cognitive and skill tests and evaluations to see that he was strong enough mentally and physically to undergo surgery.
Kennedy's neurosurgeon at Stanford only does two of the surgeries a month but was able to schedule him for the procedure Sept. 6.
"The surgery itself was one of the scariest things I have ever done in my life," Kennedy said, noting he was awoken mid-procedure and asked to move his limbs so surgeons would know they were in the correct parts of his brain.
Dr. Han, who started seeing Kennedy in 2007, said in being relatively young and in good health, Kennedy was an ideal candidate for the procedure, especially as the disorder continued its natural progression of decline.
"Usually, it starts with the shaking. At that stage, it's an annoyance, but it doesn't interfere," he said. "But as the disease progresses, you get trapped in your own body. Your mind is perfectly clear, and you can't do anything. I think that's very horrible for people to go through."
Han is hopeful that with medicine, surgery and advances in technology, quality of life can continue to improve for Parkinson's patients.
"We are doing quite well with what we are doing compared to years ago," he said. "Luckily, I think with what we have nowadays, we can manage it OK."
Wendy, who had retired early to help care for her husband, said that once approved, the decision to proceed with surgery was easy.
"It was, do it now or I don't know where he was going to be six months from now," she said.
After surgery, a change could be seen almost immediately.
His body, which had been tensed for years as a result of the symptoms, finally relaxed. His stuttering reduced, and he was able to take long strides again. Kennedy doesn't know if he ever will be able to return to golf — one of his favorite activities — but that's OK.
"It's like a miracle," he said. "The state of modern medicine is absolutely mind-boggling. What they were able to accomplish with me, I can't believe it ... If this is as good as it gets, it's so much better than it was, I'm fine."
Kennedy returns to Stanford in two weeks to begin to calibrate the neurostimulator. It will take up to a year to fully program the device, but he can expect to see benefits of the surgery for about 10 years.
"It's not a panacea. It's not going to cure anything. It's gonna help with some of the more severe symptoms," he said.
The one thing it won't help with is the few people Kennedy can relate to about the disease and find some validation for his feelings and frustrations, because even though the disorder is not uncommon, it is not relatively widespread.
If anyone in the community is suffering from Parkinson's and wants to talk to him, he says he is listed in the phone book.
"It's a lonely existence," he sad. "Anyone I can help, I'd be happy to talk to them. I'm not an expert, I'm just a poor bastard whose got it."
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