When Allison Smith-Conway was diagnosed with Parkinson’s at the age of 32, she got serious about looking for role models with whom she could identify. She conducted some research to find people who were doing good things in the Parkinson’s community and discovered Davis Phinney and the Davis Phinney Foundation. The Foundation’s “live well today with Parkinson’s” message resonated strongly with her, so when it came time to nominate someone for her support group’s Parkinson’s Pride award, Davis came to mind immediately.
“I’ve always been athletic myself, was a cheerleader back in school, and I could relate Davis’ loss of physical ability when it was such a significant part of his part of his life. If it was tough for someone like me, I couldn’t imagine what it must be like for him,” said Allison. “Like Davis, I wanted to focus on feeling as good as possible right now and keeping myself as healthy as I can for as long as I can.”
In February, 2011, The Victory Summit and Davis came to the San Diego area. Allison invited Davis to accept the Parkinson’s Pride award in person, while he was in town for the pre-Summit dinner. “It was a very exciting moment,” noted Allison. “I got very nervous, even though I am normally totally calm in situations like this. It was hard to get the words out, because he had no idea how influential he’s been on my life.”
Davis encouraged Allison to “create a PD wolf pack” – a network including her support group, caregivers, friends, family and medical team – that can come together to provide support without risk of any one person becoming drained. “My husband doesn’t have to bear the full burden, because I have this whole ‘pack’ of others on whom I can rely.”
Allison believes that with Parkinson’s disease, educating yourself is key. The more you know, she says, the more you can share your needs and experiences with family and friends and get the help you need.
As a certified personal trainer and marital and family therapist, it was natural for Allison to look for ways to complement the support resources available in her area. “I thought, what would I need for support? And I discovered there was a lack of continuation of care, especially related to the mental aspects of living with Parkinson’s. As a result, I created Parkinson’s in Balance (www.parkinsonsinbalance.com) to deal with the emotional issues that come with the disease.”
She also noticed that support groups are not one-size-fits-all, and learned that many young-onsetters like herself don’t want a structured group with question-and-answer sessions over coffee. “YOPD people like support, but we don’t necessarily want to see what we might experience later with this disease. I enjoy meeting at a community event or for a fitness class – maybe go out for lunch and casual conversation with other people with PD afterwards.” She has met many other people with YOPD who have shared similar sentiments and contacted her to find ways to talk about their disease with family and friends. This is validation that there is an important role for programs like her Parkinson’s in Balance to play.
“Some people have told me I’m a hero for coming out with my disease and encouraging others to talk about it. But I think whether it’s me or someone like Davis, we’re just people who needed help and realized that in offering ourselves and our stories, it helps us at the same time it might help another person out there with Parkinson’s,” commented Allison. “The true heroes are all the people who get up every day, even when they feel like crap. They’re the caregivers who keep going, even on days when they feel drained or resentful of their situation. Those are the heroes of PD, and there are thousands of them who deserve encouragement and praise.”