Vail Valley Parkinson’s patients not alone
January 21, 2013
EAGLE COUNTY, Colorado – Two years ago lifetime local John Bade was diagnosed with Parkinson’s disease. He went looking for a support group and discovered if he wanted one he’d have to start it.
So he did. It’s not a government deal, but he had help from the county’s Health and Human Services department and the Parkinson’s Association of the Rockies.
Turns out there are four or five dozen Parkinson’s patients in the valley, and they get one or two more at each meeting – the fourth Thursday of every month at Trinity Church in Edwards.
“There is now a place to come to ask questions about how to manage the disease better, about care giving, and get those questions answered,” Bade said.
“It’s an upbeat group,” Bade said. “The idea is to help people.”
And then there’s this.
“It’s important for people to know they’re not alone,” Bade said. “We need people to be aware that they’re not alone, that they’re not the only one,” Bade said.
They share ideas about exercise and nutrition – both help – and medications.
“The current thinking is that exercise helps more than drugs, and wonderful new drugs are coming out all the time,” Bade said. “It helps with the ability of living with Parkinson’s.
The local Parkinson’s support group is the Eagle Valley chapter of the Denver-based Parkinson’s Association of the Rockies. Rick Schwartz helps run the statewide group. Schwartz drove himself up from Denver to meet with some local Parkinson’s patients when we caught up with him.
“It’s not a disease just for seniors,” Schwartz said.
Schwartz has a 24-year-old friend with it. Actor Michael J. Fox has it. Ben Petrick was 24 years old and playing for the Colorado Rockies when he was diagnosed. He lasted four years in the majors before he could no longer hit a big league breaking ball.
Schwartz figures it’s either people getting it younger, recognizing it sooner, or both.
Parkinson’s is a neurological disorder, stemming from the loss of dopamine in the brain. Dopamine lubricates the brain like oil in a car, Schwartz explained.
“Without it, things clank around and seize up,” Schwartz said.
By the time it’s diagnosed, about 90 percent of the dopamine is gone, Schwartz said.
Bade was diagnosed a couple years ago. His doctor sent him to a specialist, who examined him for a few minutes and said, “Yup, you have it.”
Still, the wrong diagnosis can be worse than none at all, Bade said.
“It’s important to see a specialist. The wrong drugs can be a disaster,” Bade said.
Medications help, and they’re getting better all the time, Bade said.
The shaking that often accompanies Parkinson’s is caused by the medications patients take to combat it.
“Those jitters are the drugs trying to equalize it,” Schwartz said.
Parkinson’s and the public
Parkinson’s patients sometimes fear both the disease and the reaction they’ll get when they announce they have it.
“They fear that if it gets out in their workplace, they’d lose their jobs,” Schwartz said.
He should know.
He’s a former major league baseball player and former new director for Denver’s Fox News, who helped start Denver’s Fox Sports Net.
When they were mapping out the Fox Sports Net launch, he’d fall asleep in meetings for Fox big wigs. He finally had to explain it.
“They were relieved,” Schwartz said.
Eventually he left television to work full-time with the Parkinson’s Association of the Rockies.
“Medical technology has changed everything,” said Reitmann, Eagle County Healthy Aging program coordinator.
No one wants Parkinson’s disease, Schwartz said, including him. He’s not going through it alone.
Lynda Brecke is a support group member and has been Schwartz’s care partner for 12 years.
At some point during the support group sessions, the care partners split off for their own meeting.
“Care partner is a tough job and it’s just as beneficial for them,” Brecke said. “They’re more apt to get sick themselves.”
Seventy-five percent of care partners are women and 60 percent eventually show signs of clinical depression. It’s called passion fatigue, she said.
“Everyone has their own way of handling it, and this helps,” said Bobbi Bade, John’s wife and care partner.
Battling Parkinson’s is not easy, and it is a battle, Schwartz said.
“While I always worked hard before Parkinson’s, most things came easily to me. With PD, ‘easily’ is not an option,” Schwartz said. “Parkinson’s is a battle. But it’s a battle that energizes me and gives me new purpose. Don’t get me wrong: I have my fair share of not-so-good days. I’ve had setbacks to rebound from. But I’ve also gained insights that I hope made me a better man.”
Staff Writer Randy Wyrick can be reached at 970-748-2935 or firstname.lastname@example.org.