Diagnosis
Joan Blessington Snyder was diagnosed with early onset Parkinson's disease more than a decade and a half ago.
Date of Diagnosis
1991
Highlight
The phone starts ringing at 8 a.m. every day in Joan Snyder's house and doesn't stop, not even when she needs to take her strictly scheduled Parkinson's medications.
Whether fielding phone calls from media, or coordinating one of her many Parkinson's advocacy projects, Snyder immerses herself in life. But it isn't easy. She's constantly in pain. The medications she takes to treat her symptoms make it almost impossible to sit still. And when she starts walking around, she'll lose her balance and fall between five and 10 times a day.
Still, her work as president and founder of CALIPSO Connection, an Illinois Parkinson's disease support and activism group, and as coordinator of the annual fund raiser Shake, Rattle and Roll, is what keeps Snyder going. "I keep busy so I don't dwell on the negative things," she says. "I can't sit and say 'poor me.' I keep active and I start to feel young again. But my kids will tell you I'm anything but hip."
Staying active has never been a problem for Snyder. Before her diagnosis, Snyder "lived life to the fullest." She married her husband, Stan, when she was 36 years old. Two years and two children later, Stan was called into active duty in Desert Storm. With her husband gone, Snyder went back to work as a bar tender at the local country club to supplement the family's income. It was then she started noticing changes in her body.
"It all came about very subtly," she remembers. "I couldn't cut fruit for the drinks right. I couldn't carry three beers in one hand anymore. I couldn't count change easily. I couldn't carry a tray without shaking. I was not listening to the whispers of my body because I was too focused on the screaming demands of being a single, working mom."
By the time her husband came home, Snyder's symptoms had grown to include a limp, dragging feet, and an immobile arm. When she was diagnosed―something her neurologist was reluctant to do―Snyder felt mostly relief, an emotion that she now recognizes came from a lack of understanding.
Since her diagnosis 16 years ago, Snyder has experienced her share of ups and downs living with Parkinson's disease. When levadopa, the gold standard of treatment her doctor put her on, stopped working, she opted for an "antiquated" treatment, a pallidotomy, a type of brain surgery. The first was "more successful than her wildest dreams." The second nearly killed her.
Those operations spurred Snyder to action. She founded a local support group, heads up an auction-based fund raiser each year, serves in her local government, co-authored a book Voices From the Parking Lot, and contributes to national advocacy efforts.
"My signature line is a quote from Northern Exposure," she says. "'Hang tough, there's no way through but to do it.'"