Asheville – April is Parkinson’s Disease Awareness Month. Ed Horton, who chairs the 501(c)(3) Parkinson’s Support Group of Asheville, reported that membership has now reached 240, a significant increase from just 30 after the COVID shutdown. Two officers died from the virus, and the president resigned following her husband’s passing. When members finally emerged from their Zoom rooms, those who remained were eager not only to continue but also to expand the group and make it more vibrant than before.
They reached out to media organizations and local neurologists’ offices. “We had to overcome a lot of resistance from neurology groups,” Horton recalled. These groups were reluctant to recommend the support group to newly diagnosed patients. Upon reflection, Horton believed this was because they did not want to discourage their patients, who might see their future reflected in the suffering of those around them, knowing that these individuals represented only a portion of the members who attended meetings.
Additionally, support groups often have a reputation for being gripe sessions, where time is spent lamenting rather than finding solutions. Horton shared the story of a couple from Tennessee who now attends their meetings. They had previously visited a support group in Tennessee and “They both left crying. Everybody was saying, ‘Woe is me!’ They found our group so much more positive and so much more helpful.”
The Asheville group grew so much that they had to split into five subgroups for caregivers and four for patients. “They’re very successful,” Horton reported. “I tell them they can talk about anything. It might be football or constipation. The important thing is that people have a place where they can share their concerns.”
A major issue with neurological disorders is that the science is not as advanced as patients would like. Parkinson’s is a neurodegenerative disorder that typically affects a part of the brain called the substantia nigra. The disease manifests differently in each individual because it can be triggered by impaired transmission or reception, or simply a lack of neurotransmitters in any of this structure’s millions of nerve cell bodies.
Christopher Hess of the University of Florida often states, “We can give patients dopamine, but we don’t know where it’s going to go.” Additionally, some Parkinson’s patients experience neurodegeneration in areas of the brain that respond better to treatment with norepinephrine. As Parkinson’s progresses, side effects from medications can become more debilitating than the disease itself. Until nerve regeneration advances beyond laboratory experiments, doctors can only aim to slow the disease’s progression and manage symptoms.
Horton has heard many stories from members, recalling one patient advised against exercising. Current best practices emphasize that the body repurposes nerves, and when patients become sedentary, walking nerves may be reassigned, causing atrophy and neuropathies.
Horton expressed regret over the lack of volunteers and donations to support the Parkinson’s community, noting a nationwide shortage of movement disorder specialists. The Parkinson’s Support Group of Asheville collaborates with local YMCAs to offer programs like kickboxing and rock climbing, along with activities to keep members active.
Monthly meetings feature business discussions and professional speakers, with local neurologist James M. Patton as a favorite. The April meeting will be an expo with local vendors promoting senior engagement beyond traditional care facilities.
Concerns arose about the Beers and Cheers events due to literature linking alcohol consumption to Parkinson’s symptoms. Horton stated, “the jury’s still out,” explaining that the events aim to foster socialization in Asheville’s breweries and bars, which can accommodate larger groups. For more info, visit parkinsonsavl.org.