By Mark Schmerling

 

Dealing with Parkinson’s—one’s own diagnosis, or that of a loved one—can be a daunting journey, but thanks to the Foothills Parkinson’s Support Group, no one needs to deal with the condition alone.

 

Local residents Mary Hay and Liz Stuker, both of whom have Parkinson’s, discussed what it means to them, and how the condition affects their lives.

 

Both have embraced physical activity, and both try to be as capable as possible, but as individuals, they deal with their lives in their own ways.

 

Hay lives alone, while Stuker’s husband has been a strong supporter. Both women enjoy the benefits of involvement with the support group.

 

Parkinson’s patients learn that their condition is “progressive,” Stucker noted. However, Parkinson’s itself is not fatal. Hay and Stucker note that Parkinson’s patients, like all others, will eventually die, but it won’t be from Parkinson’s itself.

 

Regarding her physical activity, “You pretend you’re getting ready for the Olympics,” said Stuker, who was diagnosed in 2014. “Instead of ending up on the Olympics team, you end up on the survivor team.”

 

As with anyone who decides to incorporate exercise into his or her life, you need to find an activity you enjoy, like walking, Stucker said.

 

Hay said she goes to a gym where she lifts weights.

 

Parkinson’s patients, Hay emphasized, often find themselves with lowered blood pressure from Parkinson’s medications.

 

Hay and Stucker understand that admitting one has Parkinson’s is not the same as surrendering to it. They have both met individuals in denial of their diagnosis.

 

“I at least try to live a normal life,” Stucker emphasized. “I focus on the things I can do still.”

 

Finding a neurologist whom one trusts, and on whom one can rely, is paramount, the women noted.

 

Stucker’s neurologist, though in Durham, returns Stucker’s e-mails and phone messages within two hours should she need help with something. Stucker is proud that her neurologist allows her to determine medication dosage, which she has upped gradually, as needed.

 

That independence, she said, provides her with “a sense of empowerment.”

 

Once a neurologist diagnoses Parkinson’s, patients are best served by a neurologist specializing in movement disorders, Hay and Stucker noted.

 

Richard Kennedy, who is active in the Foothills Parkinson’s Support Group, observes that once you lose trust in a health care person, you might as well find someone else. He does not have Parkinson’s himself but two members of his wife’s family must deal with it.

 

“This is all new to us,” Stucker admitted.

 

Hay noted that some medical professionals tell their patients that Parkinson’s is progressive, that one will never get over it.

 

“That’s not the way to practice medicine,” she insisted.

 

Hay, who did not respond especially well to medications, has undergone deep-brain stimulation through surgery. That ended the tremor in her left hand, but then the tremor moved over to her right hand, she said pointing to that hand.

 

Hay added that exercises such as bicycling and dancing are among exercises good for balance and coordination, if one’s brain is focused on the activity. Some Parkinson’s patients use stationary bikes indoors, for better safety.

 

Hay found her initial diagnosis “very depressing.” Stucker found a great deal of support with the Foothills group, and also joined a book club.

 

Part of Hay’s diagnosed involved being asked to identify smells from a series of some 30 open containers, as Parkinson’s patients can have a much-diminished sense of smell. She recalled identifying only two of those.

 

Both women note that the jury is out on whether heredity or environment cause Parkinson’s, though they mentioned a peach grower who had the disease who had also been exposed to chemical pesticides.

 

Stucker, who suffered a head injury when she was much younger, wonders if traumatic brain injuries can bring on the condition. The medical community is learning more about the long-term physical and behavioral effects of repeated concussions.

 

Regardless of what brought on the condition, “you need a sense of humor,” Hay offered.

 

As some Parkinson’s medications produce unwanted side effects, physicians have no “one-size-fits-all” protocol. Hay reported that some medications can trigger compulsive gambling, shopping and sex.

 

“I don’t gamble” Hay stated. “I don’t care about winning or losing.”

 

Stucker admitted that in the beginning of her Parkinson’s experience she became obsessed with cleaning. “Luckily, it was not for very long. I didn’t have time for anything else,” she said.

 

“Clinical trials are fascinating,” Hay suggested. “I recommend them.”

 

Some research focuses on testing cognitive skills, to determine the flexibility of a patient’s brain.

 

Hay observed that when Parkinson’s patients are unable to perform a given physical task as well as they’d like, the cause might be something in the brain, or in the muscles simply not working.

 

However, she adds, we can re-write some of our problems by training other nerve passageways to help perform the task.

 

“I’ll try anything,” Hay emphasized. “I think the bottom line is to come to the (Foothills) support group.”

 

Hay also recommends Parky Ballet in Spartanburg, part of Ballet Spartanburg. Ballet Spartanburg offers a Parkinson’s Disease and Neurological Disorders dance class. The contact number is 864-583-0339.

 

“It’s therapeutic,” she said.

 

Parkinson’s patients often must confront some loss of independence.

 

“I’m still driving,” Hay stated.

 

“Driving scares me,” Stucker admitted. “I always had trouble with directions.”

 

Both women recommend staying with more familiar activities.

 

The Foothills Parkinson’s Support group welcomes individuals with Parkinson’s, caregivers, and those who might have a loved one with Parkinson’s.

 

The group meets the third Wednesday of each month at 1:30 p.m., in the large room of the Landrum Library. Meetings last about one hour. For more information, call Dot Kennedy at 864-404-8000, or Richard Kennedy at 864-404-8001.

 

“The support group brings out the best in people,” Hay stated. “It is a good group,” Stucker added.

 

The support group welcomes those from Polk County, and from northern Greenville and Spartanburg counties, and works closely with other support groups in Greenville and Spartanburg.

 

Parkinson’s patients and members of their support network can also find help through the National Parkinson’s Foundation (800-473-4636, Parkinson.org) and the Michael J. Fox Foundation for Parkinson’s Research (michaeljfox.org).

 

“There’s a future for the research in Parkinson’s,” Hay stressed. They need to listen to us.”

 

 

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