 |
 |
 |
 |
 |
May 13, 2004
|
|||||
|
|
|
|||
|
May 13, 2004 |
|||||
 |
|
Vying to change a life affected by disability
Parkinson’s disease is the first thing one notices about Yellow Springs resident Tom Vondruska. At times he has bouts of dyskinesia that send his limbs, head and torso out like potentially menacing projectiles. At other times, his condition causes his body to freeze, as though moving through drying cement. Though he cannot drive and has considerable difficulty getting around, Vondruska likes to be out talking to people. And wherever he is, at six foot three inches and 230 pounds, he’s hard to overlook. Vondruska has watched his Parkinson’s develop from an imperceptible twitch or stutter step in 1994 to the eruptive muscle spasms that cause others to step back to avoid being hit by a wayward arm. He uses a motorized wheelchair for transportation and has chosen to remain in public and stay as active as he can. It’s his way of resisting his disability, and perhaps getting a little needed attention. Vondruska worked as a reporter for the Xenia Daily Gazette for nearly a decade before he developed Parkinson’s, and his sharp mind, quick wit and adeptness at telling a good story remain intact. Sitting on the Oten Gallery’s brick patio last weekend, he ripped a quote from one of his favorite authors, Mark Twain. “The only people who can properly use the word ‘we’ are kings, editors and those with tapeworms,” he said, leading into a story on writing. Like any good storyteller, Vondruska is prone to exaggeration and impulsiveness, which together makes a lethal mix when trying to deal with Parkinson’s. But it is no exaggeration that it is the medicine, and not the disease, that causes the severe muscle spasms. It is no exaggeration that varying drug levels cause his nerves to fire almost at random one hour, and then stiffen up like the Tinman the next. It is no exaggeration that eating, walking, stress and the weather cause the drugs to metabolize at different rates, forcing him to guess whether he will need the next dose in two hours or five. If Vondruska is not vigilant about tracking his cycles, he could easily find himself frozen in a doorway, flailing uncontrollably at the movie theater or face down in the snow in the dead of winter. In fact, he has been in all of these situations, putting himself at risk and in need of help from both local residents and public servants. A person with a severe disability should receive both help and understanding from the small community around him, those interviewed for this article agreed. Vondruska, 48, said that he has had to learn by trial and error to live with his gradually worsening condition, while at the same time resist succumbing to it entirely. He lost his sense of smell first, making it challenging for him to smell smoke and recognize spoiled food. Soon he had trouble writing and then began walking with a hesitant gait and his arms curled against his chest. Before the problem was diagnosed, people would ask, “why don’t you just move?” “Gee, why didn’t I think of that?” was his response. Then all his muscles, including intestinal and other internal groups, began to freeze because dopamine, the chemical messenger from the brain that guides the muscles, was no longer being produced. “I’m not sure how it all works, but it’s probably something like angels flying around in your neurotransmitters,” Vondruska said, trying to explain the progression of the disease. Parkinson’s runs in Vondruska’s family. Several family members suffered from the disease before he lost his father to it two years ago. His father, Vondruska said, did very little to resist it, and he died within just six years of diagnosis. Vondruska said that he resolved to do everything he could to resist letting the condition take over his life. “Parkinson’s is a use-it-or-lose-it type of thing, and I have to be active because I saw what happened to my father,” Vondruska said. In order to stall his deterioration, Vondruska walks every day, engages with people, rides his bike and vows never to use Velcro on his shoes. He doesn’t think it’s denial. He prefers to call it inertia, that is, pushing himself to live as normally as possible for as long as he can. He often gets frustrated with himself for knocking things over, slurring his speech and having trouble with the daily task of walking out the door. Anger leads to increased dyskinesia, he said, “which means I appear in the Yellow Springs News ‘police report’ needing assistance all the time.” “I know I take an officer off the line, so I try not to do it too often,” he said. “But I’m going to keep on fighting.” The Yellow Springs Police and Miami Township Fire-Rescue receive calls twice a week on average either from or about Vondruska needing medical, logistical or social intervention. Fellow members of the Independent Order of Odd Fellows lodge drive him on errands, friends often take him in at night, and the Village Mediation Program has helped him rebuild relationships that have soured because his needs are sometimes overwhelming. Vondruska’s activity extends beyond the norm because his personality is beyond the norm. He is a risk taker, he admits, and testing the limits often gets him in trouble. In recent years he has had conflicts with employees and other patrons at Peach’s Grill. At Antioch College he has engaged in inappropriate conversations with female students. At the Community Physicians of Yellow Springs office he caused a disturbance in the waiting room. In town he was caught parading nude in the middle of the night while playing what he called a joke on an acquaintance. Any type of public or other stimulating environment increases Vondruska’s dyskinesia, which increases his stress, which increases dyskinesia, and so on. The social activity that keeps him well and sane is the same stimulus that works him into a kinetic downward spiral, which can sometimes get out of control. Some residents and businesses have grown tired of accommodating Vondruska during these incidents. Both Peach’s and Antioch have banned him from their properties, his lodge status with the Odd Fellows was jeopardized, and charges of indecent exposure against him are pending. Some of those who initially had compassion for him have developed a tough-love type of interest in seeing him take at least some responsibility for himself. Odd Fellow member Chris Kinter, along with other lodge members, has spent significant time and energy helping Vondruska deal with his disability. But they expect Vondruska to try to help himself, Kinter said, something the lodge has seen little of. “He’s a steamroller, and I want to say to him, ‘help me help you,’ ” Kinter said. “Tom needs to be proactive for his own benefit. There’s little things I really believe he can work on.” Others at Antioch, Peach’s and Community Physicians preferred not to comment or did not return phone calls. Tucker Malishenko, who has worked with Vondruska for several months through the Village Mediation Program (VMP), believes businesses and organizations have made decisions to protect their own interests but likely feel badly that they cannot help Vondruska with his situation. Malishenko said that he began relating to Vondruska as a mediator, but quickly realized he could not properly do his job without first taking time to understand how Parkinson’s affects Vondruska’s life. He said he went beyond his job to become a friend and advocate for Vondruska. Parkinson’s profoundly affects Vondruska’s life, Malishenko said, but he added that Vondruska needs to take more responsibility for his behavior and the decisions he makes. Police Chief Carl Bush, who has had many conversations with Vondruska since joining the force in December, echoed that perspective. “Tom has a responsibility to consider the rights of others, and at the same time, others can try to understand him better,” he said. “Everyone’s got to give and take a little bit with this.” Vondruska, recently divorced and a father of two teenage sons, admits he needs to make some personal changes. “I’ve made some bad choices, and I’ve realized I have a lot of frustration and a lot of anger built up that I need to deal with,” he said. “But I also wish people would look at where I’m coming from.” “I hit dogs, cans, walls, trees, and if I accidentally hit you I’m sorry,” he said. “Tell me when I’m wrong, but please do it in a gentle voice.” In the past several months, Vondruska has become a candidate for a new surgery at the Cleveland Clinic that stimulates the brain and should help reduce his dyskinesia. He hopes to have the procedure done by early summer. Vondruska also has slightly shifted his medication, allowing him to give up some of his energy in exchange for less dyskinesia. The prospect of physical relief, coupled with his effort to reach out to the community through VMP, may help produce positive results for everyone. “I’ve been struck by the changes in Tom over the last few months,” Malishenko said. In the last month Vondruska has chosen to stay home more to write on his computer. He has tried to clean his Lawson Place apartment and spend more time thinking rather than acting, he said. As Malishenko put it, Vondruska has begun to choose the sanity of order over the excitement of chaos. The mediation services played an important role in allowing that transition to take place, he said. “I think it’s a message about how the community could deal with all disabilities,” Malishenko said. “I hope in some fashion there can be a new start for Tom and for the community.”
|
|
