"We took a ride to Alfred Station," Linda Johnson said. "We met the Bicycle Man, turns out he's the entire northeast distributor for this kind of trike."
Although the disease has been present all her life, Johnson has only felt the symptoms for the past eight years.
"I started feeling off balance about eight years ago," she said. "We'd be hiking or backpacking and I couldn't walk until I could see my feet."
Johnson, who has to reach out for walls and furniture just to get around the house, still retains her full-time job as an engineer at Sensis in Dewitt, a company that makes airport collision avoidance systems.
"Up until last year, I was traveling to Switzerland, Brussels, Amsterdam, Paris. Now I really can't travel alone anymore," she said.
The Johnsons met as engineers working at Lockheed in New Hampshire. They moved to Cazenovia when the entire radar division was transferred to Syracuse. They have two children attending Cazenovia Central schools.
"My kids are wonderful. They have been more helpful than I've seen out of any other kids and I'm a handful," Linda Johnson said. "It's the little things like I can't do laundry because I can't see my feet. How many kids do laundry?"
"She's not a handful," said Brian Johnson, age 14. "And I think she can make it, the bike ride."
Linda Johnson, if nothing else, does not lack for family, friends and support. The Johnsons have already raised close to $20,000 on their own for the cause.
"I feel fortunate for the adult onset; children diagnosed with this have a very hard time of it," she said. "The disease progresses; I used to feel a little unbalanced, now I have to hold onto walls, furniture and anybody near me. People wind up in wheel chairs in 10 years or even sooner. Or we can just find the cure and move on."