BY JADE REYNOLDS (jade@theitem.com)
Kim Austin is still one of her ex-husband's biggest health-care advocates. "In my mind, we're still married," said the financial analyst of information systems with Tuomey Healthcare System. "I still love him." In 1999, Tony Austin was diagnosed with Huntington's Disease, just three years after his father had been diagnosed. There is no cure for what the Huntington's Disease Society of America describes as "a hereditary brain disorder that leads to severe physical and mental disabilities." Limited treatments provide some relief from the spastic movements, Kim Austin said, but oftentimes can leave the patient completely sedated.
In the last two years, she formed a peer support group for South Carolinians facing this debilitating illness and their caregivers. "I thought about how they don't have a voice, and it kept eating at me," Austin said. "It became my focus. It's my passion." The group will hold its first fundraiser, a bowling bash called "Strike Out HD," from noon to 2 p.m. June 7 at AMF Columbia Lanes, 1733 Bush River Road, Columbia. Registration starts at 11:30 a.m. Tickets are $12 each and may be purchased in advance or the day of the event. A ticket covers two hours of bowling, shoe rental and drawings for prizes. Proceeds will go to the Huntington's Disease Society of America.
Austin said she also has Tony's children to think about. When her then father-in-law was diagnosed, Austin had already given birth to a son. She took him for testing. "They told me he had a 50/50 chance, but they wouldn't test until he was 18," Austin said. "It would put a life sentence on him before he's lived, and that's not fair. It's a very depressing disease." Then her husband started acting out violently, and she was forced to leave him for the safety of herself and her son. "The bad thing is the temperament change," Austin said. "I was in denial for a little while. But then I saw the disease progress. In the first stages, you seem drunk. Your speech slurs. You have falls and spills. Then, as the brain deteriorates, you lose bodily functions. You can't talk, and the more you try to talk, the more frustration and anger there is."
Now 19, her son has not been tested. "For him, it is what it is," Austin said. "There is no sense worrying. A majority are that way. They avoid it. But to find a cure, we have to do research." When he was younger, Austin's son did show concern. She recalls one time her son had a twitch in his arm. He asked her to feel it, and she comforted him that many people have muscle spasms from time to time. "For a mom, not knowing is tough," Austin said. "If he did bad in school, I wondered if it was the onset of the disease. I wondered, 'do I treat him normal? When do I stress?'" Her son may not wish to know for sure, but he has attended support group gatherings. "After a recent meeting, he said 'this is a good thing,'" Austin said. "'I'll consider being on the board."
She has also adopted her son's half-sister. The 13-year-old is interested in a medical program that follows a person who could have Huntington's Disease as he or she ages. "They don't say one way or the other if you have it," Austin said. "They just monitor. It's helping with research. She thinks that's awesome. She sees it as helping her dad in a way."
From the donations to the sponsors to volunteers and online messages of support, Austin has been pleased with the response for the group's first event. "It's amazing to see the kindness and generosity," she said. "It's touching to see people out there really care."
This isn't the group's final event, though. Austin has a walk planned for late September and hopes to hold a caregivers event in November. To register in advance, visit http://bit.ly/1w40lSj. Sponsorships are still available, and donations are accepted.
For more information on the South Carolina support group, contact Kim Austin at curehdinsc@gmail.com or at (803) 983-2052. For more information on Huntington's Disease, visit hdsa.org.
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Kim Austin is still one of her ex-husband's biggest health-care advocates. "In my mind, we're still married," said the financial analyst of information systems with Tuomey Healthcare System. "I still love him." In 1999, Tony Austin was diagnosed with Huntington's Disease, just three years after his father had been diagnosed. There is no cure for what the Huntington's Disease Society of America describes as "a hereditary brain disorder that leads to severe physical and mental disabilities." Limited treatments provide some relief from the spastic movements, Kim Austin said, but oftentimes can leave the patient completely sedated.
In the last two years, she formed a peer support group for South Carolinians facing this debilitating illness and their caregivers. "I thought about how they don't have a voice, and it kept eating at me," Austin said. "It became my focus. It's my passion." The group will hold its first fundraiser, a bowling bash called "Strike Out HD," from noon to 2 p.m. June 7 at AMF Columbia Lanes, 1733 Bush River Road, Columbia. Registration starts at 11:30 a.m. Tickets are $12 each and may be purchased in advance or the day of the event. A ticket covers two hours of bowling, shoe rental and drawings for prizes. Proceeds will go to the Huntington's Disease Society of America.
Austin said she also has Tony's children to think about. When her then father-in-law was diagnosed, Austin had already given birth to a son. She took him for testing. "They told me he had a 50/50 chance, but they wouldn't test until he was 18," Austin said. "It would put a life sentence on him before he's lived, and that's not fair. It's a very depressing disease." Then her husband started acting out violently, and she was forced to leave him for the safety of herself and her son. "The bad thing is the temperament change," Austin said. "I was in denial for a little while. But then I saw the disease progress. In the first stages, you seem drunk. Your speech slurs. You have falls and spills. Then, as the brain deteriorates, you lose bodily functions. You can't talk, and the more you try to talk, the more frustration and anger there is."
Now 19, her son has not been tested. "For him, it is what it is," Austin said. "There is no sense worrying. A majority are that way. They avoid it. But to find a cure, we have to do research." When he was younger, Austin's son did show concern. She recalls one time her son had a twitch in his arm. He asked her to feel it, and she comforted him that many people have muscle spasms from time to time. "For a mom, not knowing is tough," Austin said. "If he did bad in school, I wondered if it was the onset of the disease. I wondered, 'do I treat him normal? When do I stress?'" Her son may not wish to know for sure, but he has attended support group gatherings. "After a recent meeting, he said 'this is a good thing,'" Austin said. "'I'll consider being on the board."
She has also adopted her son's half-sister. The 13-year-old is interested in a medical program that follows a person who could have Huntington's Disease as he or she ages. "They don't say one way or the other if you have it," Austin said. "They just monitor. It's helping with research. She thinks that's awesome. She sees it as helping her dad in a way."
From the donations to the sponsors to volunteers and online messages of support, Austin has been pleased with the response for the group's first event. "It's amazing to see the kindness and generosity," she said. "It's touching to see people out there really care."
This isn't the group's final event, though. Austin has a walk planned for late September and hopes to hold a caregivers event in November. To register in advance, visit http://bit.ly/1w40lSj. Sponsorships are still available, and donations are accepted.
For more information on the South Carolina support group, contact Kim Austin at curehdinsc@gmail.com or at (803) 983-2052. For more information on Huntington's Disease, visit hdsa.org.
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