Aug. 4, 2016
Bonita Leary shows the members of the local Parkinson's support group a rough draft of a brochure sharing information on the group. by Tammie Gercken/The News Herald
Morganton resident Bonita Leary took the bad news of a diagnosis and turned it into an opportunity to reach out and help others.
Told by doctors she had Parkinson’s, which is described as a “progressive, degenerative neurological disease,” about a decade ago, she sought out a support group, but finding none, decided to start her own.
“My concept has been for many years now that if there’s something that’s not being done, that I can do, then that’s what I’m supposed to do,” Leary said. “It became obvious that a Parkinson’s group was needed, that there were other people here that needed it, not just me.”
She sent flyers to the hospital and local pharmacies, and eventually got a group of people together that live with this movement disorder. They met at the hospital for the first couple years, and then were invited by the Grace Ridge Retirement Community to hold the meetings in its arts and crafts room.
The group now meets there every third Saturday at 10 a.m. They support each other and share information, and invite area medical professionals to present a program at each meeting related to Parkinson’s. Leary said between 12-30 people attend the meetings, depending on the program being presented.
The presentations have featured different disciplines such as neurology, anesthesia, pharmaceuticals, psychiatry, nutrition and physical and speech therapy.
“Every muscle in the body is affected with Parkinson’s, so there’s no doctor who is not concerned,” Leary said.
She has found the group instrumental in helping her cope with the disorder.
“What we’re trying to do is learn to live effectively with Parkinson’s,” Leary said. “We try to begin by saying, ‘This is the day the Lord has made – I will rejoice and be glad in it.’ We will share with one another coping skills or frustrations, but we’re not whiners. This is not a whiner’s group. There’s a feeling of camaraderie of being there with people that understand. The support is just knowing that we’re there and enjoying being with each other.”
Some members recently took a field trip to a Parkinson’s Empowerment Symposium in Asheville sponsored by the National Parkinson’s Foundation Center of Excellence and the Movement Disorders Center in the department of neurology at UNC-Chapel Hill, where they received valuable information.
Leary spoke about the difficulties she’s encountered with the disease over the years, starting with frustrating process of actually finding out it’s the culprit behind random symptoms, an ordeal which sent her back and forth between different doctors ordering a multitude of tests.
“Most people have had Parkinson’s for quite a while before they’re diagnosed,” Leary said. “There is no test to diagnose Parkinson’s. You simply eliminate other things. When you’re diagnosed, you don’t know much about it, and the frustrating thing is, the doctors don’t know, either. The best doctors will say, ‘I don’t know,’ and will get you to a neurologist.”
Leary strongly recommended that anyone diagnosed with Parkinson’s immediately seek out a neurologist that specializes in movement disorders.
Confounding diagnosis is the fact that people with Parkinson’s manifest different symptoms. Leary, for instance, does not experience the classic tremors associated with the disease.
There is currently no cure for Parkinson’s, but some symptoms can be treated with medication. Leary also described a cutting-edge treatment called “deep-brain stimulation” surgery, in which parts of the brain are hooked up to a computer that sends current to them. She said some of the support group members have tried this with varying degrees of success.
Leary said regular exercise is key to help manage physical symptoms and stay mobile.
“Attitude and exercise are the two things we cannot go without,” Leary said.
The disease has slowed her down and forced her to give up some things.
“One of the things I have learned with Parkinson’s is to pace myself,” Leary said. “Speech is problem for me now, and if I’m tired, it’s harder. You grieve losses. I started playing piano when I was five years old, and I cannot play two hands together now. I can’t swim anymore, because I can’t coordinate my hands and feet to work together. I can’t turn over in bed. I have to get out of bed and stand up to change positions. You learn to deal with losses. The challenge is to keep a positive attitude, and that’s an absolute must, because the vast majority of people with Parkinson’s have depression. Some of that needs to be treated, but some of it we can deal with ourselves, and that’s a choice. You just have to decide that you will keep a positive attitude. If you don’t, you’re sunk.”
Leary said she thinks denial and shame may be hurdles keeping some people with Parkinson’s from seeking out support, and encouraged anyone living with the disorder to join the group.
“People don’t want to say they have Parkinson’s, but they don’t need to be ashamed to have it,” Leary said. “They don’t know how much they need a group. We need them just as much they need us. They are valuable. The ways they’re learning to live with it can help us better understand how to live with it.”
Those interested in joining the group should contact Leary at 828-334-1958 or bonitaleary@charter.net.
The next Parkinson’s support group meeting will feature an interactive presentation on neuroplasticity and reprogramming the brain given by Carol Gerson, a certified “Ageless Grace Educator/Trainer.”
Tammie Gercken can be reached at tgercken@morganton.com.
http://www.morganton.com/community/local-support-group-created-for-parkinson-s-disease/article_9e873b5c-5a82-11e6-b1a7-43cbf909fa7b.html
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