Betty Strom’s (1930 – 2011) Parkinson’s story is told by her daughter, Monika Strom.
Betty Strom was never her Parkinson’s. As the disease made her world ever smaller, her courage and soul expanded. A few days before her death in 2011 at age 80, she begged to join her neighbors in a field trip to Underwater World. That was my mom. Betty learned she had Parkinson’s in 2001 after 10 years of incorrectly diagnosed, untreated symptoms. She was an RN; she knew what to expect; she fought it by never letting it define her. She walked every day; when she couldn’t walk she rode her stationary bicycle; when she couldn’t ride she swam; when she could no longer swim she soaked in the whirlpool. Even as her vision and fingers failed her, we could still coax her to play her beloved piano, albeit one-handedly.
Betty’s disease was indeed challenging. It was difficult for her to feel hostage to her own body. It was more difficult for us as her family to feel helpless. So we came to ignore her disease, too. And when we finally had to say goodbye, I found in her systematically downsized possessions all that really matters to anyone of us: photos of family and friends, mementos of the best experiences of her life, reminders of her faith, evidence that she had truly lived life fully, uncomplainingly, with curiosity and expectation of something interesting at every turn.
I support the National Parkinson Foundation Minnesota in honor of my mom, to make day-to-day life for other Parkinson’s patients and their families easier, freer from worry, so they can focus on living and loving life. We are grateful for the support of the Struthers Parkinson’s Center, the Mayo Clinic Department of Neurology, and the fine example of so many other Parkinson’s patients and families who inspired us then and now.
Monika Strom is a member of the National Parkinson Foundation Minnesota Board of Directors.
Ross, a cardiologist, was diagnosed with Parkinson’s disease (PD) six years ago. He first noticed a tremor and weakness on his left side. He recognized what was happening. He had a complete neurologic evaluation, and voluntarily reported his diagnosis to the state Board of Medicine. His employer, his associates, and his neurologist were all supportive.
If you want to see Parkinson’s in a new light you only need to drive by Mike Justak’s home in Plymouth, Minnesota. He shines not one light, but more than 50,000 of them. For the holidays his home turns into what he’s dubbed “PD Shimmers,” a Christmas light show synchronized to music, in order to raise awareness of Parkinson’s disease (PD).
“You have Parkinson’s.” Those are 3 words I heard more than ten years ago – three words that were not in my plan, and I am a planner. I plan the plan to plan.