Parkinson's group organizer sticks to upbeat

A 66-year-old Spring Hill woman will launch the first support group for people with the disease in Hernando County in October.

By SAUNDRA AMRHEIN

© St. Petersburg Times, published August 7, 2000

[Times photo: Maurice Rivenbark] Jean Crowe of Spring Hill, who takes more than a dozen pills a day, says of Parkinson's disease: "I always try to make people feel there's hope."

Speeding into the sunset in her 2000 Cougar with the T-roof open and Mozart blaring, Jean Crowe escapes for a few hours from the disease in her brain.

Parkinson's disease leaves some of its victims unable to grip a spoon, let alone the steering wheel of a cherry-red sports car.

But Crowe says a dose of something as powerful as her 15 medications has kept her mobile and independent since the day eight years ago when the disease was diagnosed.

It was a positive attitude, she said, that turned anger and sadness into a spirit of giving, inspiring Crowe to start two support groups in New York for people with Parkinson's disease and their families.

Now the 66-year-old Spring Hill woman plans to start the first such support group of its type in Hernando County in October.

"I always try to make people feel there's hope," Crowe said. "I have confidence there's always going to be something down the road."

After moving to Spring Hill in May from New York, Crowe asked her Tampa-based doctor about support groups for people with Parkinson's disease. The closest one, she learned, is in New Port Richey.

Jim Ennis, who runs First Call for Help, a local non-profit information and referral service, confirmed that no support groups for Parkinson's disease exist in Hernando County.

So Crowe has decided to launch her third group, this one in Spring Hill.

Its first guest speaker will be Dr. David Malka, a neurologist with offices in Spring Hill, Brooksville, New Port Richey and Hudson. He says he sees about two or three Parkinson's disease patients a day.

During his presentation in October, Malka plans to talk about medications and new treatments on the horizon.

After a diagnosis, he tells patients: "This is not the end of the world anymore."

In the past, patients used to stiffen up to the point they weren't able to move, and some would choke on their own saliva, he said.

But modern medicines, surgery and electrical implant devices, all of which seek to mimic or stop the deterioration of dopamine in the brain, allow many patients to live active, healthy lives.

One of his Hernando County patients rides a motorcycle.

"It certainly can be debilitating," Malka said. "But most people I see are well controlled and can get by on the medication. There're probably just a few that are that far gone that we can't do much for and that are bedridden."

Crowe hopes to eliminate feelings of alienation or embarrassment some Parkinson's patients may feel as a result of the tremors brought on by the illness. At the same time, she is also encouraged by more public awareness about the disease becauseit affects public figures such as actor Michael J. Fox.

"I think a lot of people think it's senility, the old age process," Crowe says. "But we are not senile. We just want to live productive lives."

It took some work for Crowe to reach herpositive frame of mind.

Eight years ago, she was a successful underwriter for an insurance company when her employer relocated Crowe and her husband from New Jersey to Saratoga Springs, N.Y. During a routine physical required by the company as a result of the job move, a slight weakness in her left armled toa diagnosis of Parkinson's disease.

The company, where Crowe had worked for 23 years, decided to push her into early retirement, which forced her into bankruptcy.

"I felt I was given a death sentence, and on top of that, I felt like I was not worth anything," Crowe said. "I felt like all my dreams were destroyed."

She soughthelp from a church-backed support group and a psychiatrist.

At first, she was angered at her priest's suggestion that group members would come to see their diagnosis as a blessing.

"But looking back, I see how much I've grown in spirit and in faith," she said.

After a year of therapy with the group and her psychiatrist, Crowe was able to change her approach.

"I was able to put the anger aside, to use myself as an instrument to help others," Crowe says. "You can't go forward if you're holding onto the anger."

At the support group, Crowe plansto bring in guest speakers. If enough people sign up, Crowe is thinking of separating them into two groups: one made up of those with Parkinson's disease, the other made up of family members and primary caregivers who can openly discuss their worries and frustrations without feeling guilty, she said.

"They need it as much as the patients need it," she said.

Crowe knows from experience that spouses need a break. To give her husband, John, some space, she'll take the car and go shopping.

"My husband is my mentor, my coach and my best friend," she said. But the pressures from the disease can be overwhelming.

Though Crowe faced the first seven years following her diagnosis without the trademark tremors and other symptoms, the past few months have brought pain and some uncontrollable shaking.

Her doctor, after telling her she is a "walking drugstore," is trying to wean her off some of her 15 medications in the search for something that works better. Some mornings, it's hard to get going.

"It's like saying you have a headache, but you can't take any aspirin," she said.

At times it's difficult to make even her two adult children living in New Jersey understand what she's going through.

That's why support groups are so important, she said.

"There are days you don't want to burden your family," she said. "They love you, but they don't know what the illness is all about. You need to have people who are experiencing what you're going through."

As part of the group, Crowe wants to set up a buddy system, so members have one person they can call between monthly meetings if they need an understanding ear or a drive to the store.

"You come in like a flower; when you leave, you're a bouquet."

If you go

The organizational meeting for the Parkinson's disease support group will be from 1 p.m. to 3:30 p.m. Oct. 3 at the Spring Hill Enrichment Center, at 1244 Mariner Blvd. For information, call Jean Crowe at 666-9327.

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