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Rita Bornstein, Ph.D., former President of Rollins College, right, and John Gabriel, former General Manager of the Orlando Magic, currently with New York Knicks, 2nd from right, both diagnosed with Parkinson's disease attend Parkinson Association of Central Florida board members meeting Monday July 5, 2016.
(Red Huber / Orlando Sentinel) |
Michael J. Fox may be the national face of Parkinson's, but a local group is reaching out to Central Florida patients who many not know where to turn for support.
There's Rita Bornstein, former president of Rollins College, who's fighting the neurodegenerative disease with a smile and sharp sense of humor. There's John Gabriel, former general manager of the Orlando Magic, who has Parkinson's and is putting his connections to use to help set up the group's next annual Parkinson's Walk.
There's attorney John Palmisano, whose wife, Lisa, was diagnosed with the disease three years ago at age 41 and who wants to raise awareness about the younger patient population.
They are all members of the Parkinson Association of Central FloridaMarti Miller is president of the association. Her husband was diagnosed with Parkinson's 15 years ago, and she's leading the local charge in Central Florida to raise awareness of the disease.
"We just want people to know that we're here to help you. You're not alone," Miller said.
Miller and a few others got together in 2012 to form a local chapter for the National Parkinson Foundation.
Last year, they broke off from the national group when they were asked to merge with another chapter.
Aside from organizing an annual walk, the association is a resource for the four-county area, linking patients with programs and support groups.
"We're going to make ourselves known and reach those people who are sitting at home with Parkinson's and embarrassed to go out," Miller said.
Miller, who works closely with local hospitals and physicians, has big dreams. She hopes that eventually the association can play a role in creating a comprehensive Parkinson's treatment program in Orlando comparable to UF's Center for Movement Disorders and Neurorestoration in Gainesville, which is a one-stop shop and a resource for many patients in Central Florida.
The association raised more than $73,000 in its annual walk this April, most of which stays here in the area.
"Our hope was $50,000, but we had more than 500 people come," Miller said in a phone interview, suddenly distracted when she realized her husband had headed off somewhere in the backyard.
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Steven Marshall, 58, of Orlando diagnosed with Parkinson's disease takes a swing Wednesday, June 01, 2016 at a punching bag during a 30-minute session held at Title Boxing Club in Winter Park.
(Red Huber / Orlando Sentinel) |
"This damn disease is the worse disease of all," said Miller, while coaxing her husband to come back into the house. "It takes your body, then your mind, but it never takes your soul. It doesn't kill you either. It's a life sentence.Parkinson's is the second most common neurodegenerative disease after Alzheimer's. Local experts estimate that about 7,000 people in Central Florida live with it, but it's hard to know exactly how many people are affected because some patients are undiagnosed or misdiagnosed.
For instance, Anita Miller (no relation to Marti Miller), was diagnosed with the disease 26 years ago at age 39, but not until after seeing several specialists.
Sometimes "the early symptoms, like stiffness, are so nonspecific that patients are referred to other doctors like orthopedists or rheumatologists," said Dr. Mark Klafter, an attending physician at Orlando Health and senior partner at Neurological Services of Orlando.
"A full third of patients don't have tremors, so if you absolutely rely on tremors, you'll miss one-third of the patients," Klafter said.
Anita Miller's husband, George, started to notice a change in his wife during early evening walks.
"She started kind of throwing her left leg up," he said. "Then she started walking without swinging her right arm. And then it got worse. There was no pain. Things just wouldn't keep up. "Palmisano, a member of the association's board, also saw similar symptoms in his wife: her arm wouldn't swing.
There are other early symptoms that can include constipation, loss of sense of smell, depression and anxiety. Sometimes, "things go on for years before motor symptoms like tremors, shuffling steps or loss of arm swing and rigidity issues occur," said Anissa Mitchell, manager of Parkinson's Outreach Center at Florida Hospital and a well-known figure in the Central Florida Parkinson's community. Sometimes, "things go on for years before motor symptoms
like tremors, shuffling steps or loss of arm swing and rigidity issues
occur," said Anissa Mitchell, manager of Parkinson's Outreach Center at
Florida Hospital and a well-known figure in the Central Florida Parkinson's
community.
The disease is still not well-understood, but so far scientists
know that it results from degeneration of part of the brain called the basal
ganglia and deficiency of dopamine, a neurotransmitter.
The gold standard drug therapy is dopamine replacement.
Sometimes as a last resort, physicians resort to deep brain stimulation.
And there's exercise, ranging from dancing, biking and even
boxing. Research has shown that exercise can delay the progression of the
Parkinson's.
"I walk on the treadmill every day," said Bornstein,
80, who was diagnosed in her 60s. "I bicycle. I do my Parkinson's
exercises. And I do a few other things. I spend about 45 minutes a day
exercising."
Anita Miller is mostly in a wheelchair at this stage of her
disease, but she bikes in a two-seat bicycle with her husband. The two also go
to boxing class at Title Boxing Club in Winter Park, which has started classes
for people with Parkinson's disease. Her husband puts on her boxing gloves and
then his.
"We get out as much as we can because movement is what it's
all about," said George Miller. "What is it that you say about
yourself?" Miller asked his wife. "I'm a tough, old bird," she
said with a chuckle.
Back in a small room where Marti Miller and others hold their
board meeting, discussions have already started about next year's annual walk.
This time, maybe they'll add on a run, too.
"Don't take Parkinson's as a death sentence,"
Bornstein said. "Follow the advice of your physician and manage your
illness to the extent that you can ... I wake up optimistic every day. I keep
very busy."
nmiller@orlandosentinel.com or 407-420-5158
Video:
http://www.orlandosentinel.com/health/os-parkinsons-treatments-challenges-20160722-story.html
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