My Parkinson Story is a weekly column featuring member of our community, sharing their stories with PD. We are interested in sharing a wide array of experiences, including yours! PD looks different in everyone, and affects everyone differently, including friends and family of those with PD. If you’d like to share your story on our blog, please email us.
In late 1998 a friend was visiting at my home when my husband came home from work. She asked me if he had had a stroke as he seemed to be pulling his left leg forward more than stepping by leading with his knee. Several months earlier he had started a new job which required him to drive back and forth weekly between northern Ohio to be with our daughter and me on weekends and to Cincinnati where he worked Monday through Friday. I hadn’t noticed his altered gait. As I thought back over the past few months, I realized the shaking of his left hand I had attributed to stress when added to his change in walking might have an underlying medical origin.
We made an appointment with our family doctor. The doctor then referred Jim to a neurologist. After some tests the neurologist prescribed medicines for him to try. How Jim responded to the drugs would tell us if he had Parkinson’s Disease or if more tests would be needed. In the spring of 1999 the neurologist told us Jim had Parkinson’s but that we had caught it in the early stages. Although that sounded like good news, I felt like my world was coming apart. I had only known one person who had Parkinson’s — my best friend’s father Bill. Growing up he was like a second father to me. His diagnosis had hit me hard but watching this lively, funny man I had admired my whole life being destroyed by Parkinson’s was almost unbearable. Although his mind remained sharp, his tremors increased making it impossible for him to walk, confining him to a wheelchair, then to a bed. The tendons in his legs contracted and he could no longer straighten them out. He was in constant pain and it became difficult for him to swallow. Bill died in 1995 of complications resulting from his Parkinson’s. Once Jim was diagnosed, I researched everything I could find about Parkinson’s: medicines currently being used, symptoms, studies being conducted, support groups and national foundations. I learned that there were better treatment options now than when my friend’s dad had been fighting against this disease in 1970 through 1995, that no two Parkinson’s patients are the same, everyone’s progression is different as are their symptoms. That gave me hope.
In 2002 our daughter started high school and wanted to change school districts. The home we had built four years earlier when we first moved to the Cincinnati area was a 2-story house with the master on the second floor. Not knowing how long Jim might have before he wouldn’t be able to climb the stairs, we moved to a home with a first floor master. (We are fortunate that up until 2020, stairs hadn’t been a problem.)
One thing that stood out in my research was the beneficial effects of exercise in slowing the progression of Parkinson’s symptoms. Jim joined a weekly “PowerUp!” exercise group and went to "RockSteady Boxing" sessions that met several times a week. These were both offered by staff at foreverfitness exclusively for persons with Parkinson’s. The owner and her staff are well trained professionals who care about, challenge and encourage each of the participants. There’s a great sense of camaraderie and Jim and I would highly recommend giving it a try.
In 2012 a class was being started by three specially trained dance instructors through Parkinsons Support & Wellness (then, Tri-State Parkinson’s Wellness) for persons with Parkinson’s and their caregiver/partners. Coincidentally one of those teachers is our daughter so she didn’t ask us if we were interested. She told us we would attend! And we are so thankful she did. We’ve met a terrific group of new friends and feel better physically and emotionally. When our class location was closed down due to Covid-19, the teachers continued to keep us moving through Zoom video conferencing. That worked out great for Jim and I because we moved to our retirement home in North Carolina in August 2020 and we are still able to meet with everyone by video classes!
We participate in seminars online to keep informed about treatment options and we support Steady Strides and Parkinson Support & Wellness activities. Things are very different now than they were back when Bill had to struggle with this awful illness. New approaches towards treatment and physical activities are showing promise and giving us hope for a much better outcome.