Marianne and Ned, always very active outdoors, have tried to remain that way even with Parkinson’s. Marianne, who played varsity field hockey in high school, ran the Orlando OUC Half Marathon in the mid-1980s and as recently as 2013 was a member of the Edgewater Crew masters rowing team in College Park. Although she can no longer stand or walk without assistance, she continues to pedal her high-performance, recumbent tricycle around the neighborhood, and she’s learning to use both a high-tech walker (called a U-Step II) and an electric wheelchair to get around Lake Eola Park, where she and Ned moved earlier this year after 32 years in College Park.
Marianne also enjoys reading – and baking. (Ned likes to point out, much to Marianne’s annoyance, that she was their high school’s 1973 Betty Crocker Homemaker of Tomorrow!) Most of her baking now consists of cakes, cookies and pies, but her favorite recipes initially were breads; the first year she and Ned were married, she made all they bread they ate each week from scratch – until they started gaining too much weight!
Even before the UF surgical trial in early 2016 worsened her Parkinson’s symptoms and led to the MSA diagnosis, Marianne had been getting outpatient physical, occupational and speech therapy at Florida Hospital as needed. Thanks to her and Ned’s interest in bicycling, she also found a program called Pedaling with Parkinson’s, an exercise program and social group based in the Crosby Wellness Center in Winter Park. That led her and Ned to Florida Hospital’s Parkinson Support Center, where they have become regulars not only at the Orlando support group but at several of the center’s other programs; like the cycling group, they offer valuable socialization – connecting with others facing similar circumstance – as well as group therapy for Marianne, caregiver respite for Ned, and the latest Parkinson’s information for both of them.
Marianne’s positive outlook – “Don’t worry, be happy,” she says – helps her manage the stress of dealing with a progressive disease. She chooses to focus each day on enjoying her family and friends as best she can. Her advice for those recently diagnosed: Don’t wait for a doctor to draw you a map or direct you to all the groups and services available; chances are the doctor will prescribe one or more appropriate medicines, and perhaps some therapy, but it’s up to you to look around, do some research, and tap into your local Parkinson’s community and any specialists, medical trials or educational resources available. “The more you get involved, the more you will learn about your illness, yourself, and the many opportunities you have to succeed,” she said.