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Manatee Parkinson's patients have avenues for support

MANATEE -- Between 6,000 and 8,000 people living within a 60-mile radius of Bradenton and Sarasota have Parkinson's disease, according to estimates by the Sarasota-based non-profit Neuro Challenge Foundation For Parkinson's.

"Some numbers suggest there are an additional 2,000 to 3,000 who don't know they have it," said Jennifer Williams, care adviser for Neuro Challenge.

Of those locally with the disease, Neuro Challenge estimates it served 2,000 of them in 2014, supplying free counseling and several free programs, including one in the Manatee County subdivision of Heritage Harbour called the Parkinson's Wellness Club.

Scientists don't know what causes Parkinson's, which is a progressive and chronic progressive movement disorder where symptoms, like the commonly known hand tremors, continue and worsen over time, Williams said. There is no cure for it.

"It is being diagnosed earlier and earlier," Williams said. "We are seeing patients in their 30s and 40s, but the average age is 62."

Called PD by those who have it and work with it, Parkinson's involves the malfunction and death of vital nerve cells in the brain, called neurons, Williams said.

Some of these dying neurons produce dopamine, a chemical that sends messages to the part of the brain that controls movement and coordination.

As PD progresses, the amount of dopamine produced in the brain decreases, leaving a person unable to control movement normally.

"Patients sometimes get freezing of the gait," said Williams, describing a condition where the brain and body are not communicating. "Their feet feel stuck to the floor. They may get a lot of leg cramping. They may get pain from muscle stiffness."

A whole set of non-motor symptoms add to the difficulty for these patients.

They may experience anxiety, depression, dementia, confusion, apathy and short-term memory loss, Williams said.

"There is also the Parkinson's mask," Williams said. "Patients often lose their facial expression. They look stern and that's how people think they have become.

In reality, what the patient thinks is a smile, is not. Their automated facial muscles are not working."

Their voices often get softer.

"They may mumble words, have difficulty swallowing and blinking their eyes, and even get internal tremors, which could affect their gastrointestinal system," Williams said.

Parkinson's club takes on topics in Manatee

On a recent Wednesday, roughly 20 people gathered in a large room at the Sarasota Memorial Health Care Center, 1040 River Heritage Blvd.

The Health Care Center is in Heritage Harbour, just east of Interstate 75 off State Road 64.

The attendees were all part of a relatively new Manatee County club formed by Neuro Challenge called the Parkinson's Wellness Club.

The group, which meets at 10 a.m. the first Wednesday of every month, is led by Williams, who designates a different topic each month for the free meeting.

The most recent topic was what to do if you are a Parkinson's patient and the area is hit with a hurricane.

The Wellness Club is an educational program. Patients can just listen to Williams and stay anonymous in the discussion, if they wish.

But Neuro Challenge, which was founded in 2008 by Doreen Sutherland, wife of Neuro Challenge medical director Dr. Dean Sutherland, also has a program in Sarasota called Parkinson's Empowerment Hour.

That program -- offered in Sarasota and North Port and scheduled to come to Manatee in the future -- allows spouses, patients and other care givers to talk among themselves about challenges, Williams said.

"Empowerment Hour is to network and socialize," Williams said. "It's not a therapy group. It's empowerment. They solve problems together."

Neuro Challenge has a staff of six. The organization gets calls from newly diagnosed PD patients daily, Williams said.

"We send out information packets about our programs," Williams said. "If they would like to talk to a care adviser, we reach out to them."

At the Wednesday meeting, some asked about their pets and if they had to take a transit bus provided by Manatee County whether their caregiver and pets are allowed to come along.

"The caregiver can come along and the pet is welcome in Manatee shelters," Williams said. "But you can't take animals in Sarasota shelters."

Hurricanes and medications don't always mix.

"Medications are extremely important," Williams told the group. "Parkinson's medicines have to be administered on time, every time because failure to do that could lead to motor symptoms. You should always carry three days supply with you but in hurricane season, you should have a month's supply."

Lakewood Ranch couple value the club

Lakewood Ranch residents June Schuer, 75, and her husband, Stan, know about freezing of gait and feet stuck to the floor. June Schuer was diagnosed with PD six years ago. She finds humor in her condition. She wants the world to know that Parkinson's isn't going to get her down.

"I have climbed a ladder," Schuer said. "I have painted a wall. But at times I do get frozen. It's a pain in the butt."

Schuer talks to her body at these times.

"I yell, 'Move,'" Schuer said. "One time my husband, Stan, yelled at my hand to move. I wasn't the least bit mad at him. He was talking to the hand."

"I am there for her," Stan Schuer said.

Stan and June Schuer were among the 20 people listening to Williams at the Wednesday meeting.

In 2009, Stan Schuer noticed something slightly different about June, his tennis-playing, highly athletic wife of 33 years.

"She had a slight tremor in her hands," said Schuer. "Her body seemed as if it had stiffened. She didn't swing her arms when she walked the same way."

June Schuer was examined by a neurologist who diagnosed Parkinson's disease.

"I didn't know exactly what he was talking about," June Schuer said. "When I realized what it was, I wanted to learn more. That's when we discovered this non-profit, Neuro Challenge."

June Schuer, who lives in Lakewood Ranch with her husband, takes a daily medication to keep her tremors somewhat under control. But the medication doesn't always work.

Stan and June Schuer said they value the Wellness Club and another Neuro Challenge programs where she and Stan can go to Williams' office in Sarasota and get free counseling.

"Having somewhere to go to discuss problems is of immense value," Stan Schuer said.

Hundreds are taking advantage of the programs, Williams said.

"Sarasota-Bradenton has some of the best Parkinson's resources in the nation," Stan Schuer said. "If you have to have PD, this is the place to have it."

Williams said that patients with strong support systems do better coping with PD.

"I am a very positive person," June Schuer said. "I have very strong faith. I feel healthy. I still feel good."

June Schuer views her PD as part of God's plan, even though she doesn't understand what God had in mind making her feet feel stuck to the floor at times.

"You plan, He laughs," June Schuer said.

Neuro Challenge's home office is at 5602 Marquesas Circle, Suite 211, Sarasota. Information: 941-926-6413 or parkinsonsneurochallenge.org.

Richard Dymond, Herald reporter, can be reached at 941-745-7072 or Twitter@RichardDymond.

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