In January of 2016, when my husband Jim turned 64, he had been watching a thumb tremor on his left hand for about two weeks. While waiting for a neurologist referral, we prayed and researched.
When the neurologist watched Jim walk, he said, “He isn’t swinging his left arm and I see a tremor in his right arm too.” After a brain scan to rule out anything else, he told us that it was “a little bit of Parkinson’s.” We both cried. He was kind and said it was not a terrible thing, that there were much worse diseases. He said it was so minor that Jim did not need medications unless he wanted them! Within two weeks, he had full-blown head and arm tremors. So back to the neuro for Sinemet, which immediately worked.
Within days of Jim’s diagnosis, two people mentioned Rock Steady Boxing to us. Since I manage the fitness department of a large senior center, I decided to bring it to Huntsville, AL, as one of our programs. Our head coach Dallas, Jim and I were certified. We gathered a group of 28 volunteers (most of whom are still with us) and started Rock Steady Boxing Rocket City in 2016.
At Rock Steady headquarters, Jim was assessed as a level three, meaning that he had bilateral symptoms and his balance was questionable. In a two-month span, he fell 12 times, and got a cane without being prompted. His falls seemed to happen when he attempted left turns.
After boxing and PT, Jim was able to drop the cane about 10 months later and has not used it since! What a victory that was! He has volunteered as a Marshall at a major golf tournament, attended several and managed beautifully. He has been assessed as a level two for over three years.
He does woodworking projects in his spare time making cigar box guitars, a classical violin and wooden covered cooler boxes to name a few. He coaches Rock Steady and boxes, and even though he had to retire, he works a few hours a week in my fitness department, mostly doing things for the Parkinson’s community behind the scenes that he was already doing as a volunteer.
We have received a Parkinson’s Foundation Community Grant for three years for our Parkinson’s Voice Project sponsoring SPEAK OUT! ® and LOUD Crowd® and it has been very successful. We have four speech pathologists on board, and one started a Parkinson's Choir the week before self-isolation. PD Dance will move into our senior center space when it is safe to open again.
I am in my second year serving as a Davis Phinney Foundation Ambassador, and now as an Aware in Care Ambassador with the Parkinson’s Foundation, it is humbling to help mentor our 150 boxers, families and Parkinson’s community estimated to be 5,000 in North Alabama. We work closely with the Parkinson’s Care Clinic that opened four years ago at the Physical Therapy Department of our large hospital system. We cannot emphasize enough to the people with Parkinson’s to seek physical and occupational therapy and speech intervention early and often, and to seek out a Movement Disorders Specialist.
We have seen powerful results with a team of fabulous professionals. We have several well-respected neurologists who sing the praises of these programs and what they have done to help their patients. The doctors at the University of Alabama at Birmingham Movement Disorders Clinic have said that we have more services for Parkinson’s than they do!
I became an Aware in Care Ambassador because I already serve the PD community, and I wanted a one-stop-shop where anyone can call or come to my office and learn about everything we offer to help people with Parkinson’s live well today and provide hope where there is often none. (Learn more about the Aware in Care hospital kit now)
Our goal is to open a Parkinson’s Place of North Alabama where all these resources can be in one location, with a physical therapy satellite clinic, nurse navigator and additional classes such as yoga, balance & flexibility, educational seminars and support groups to name a few.
My husband recently told me that he feels blessed to have gotten the Parkinson’s diagnosis because without it, we would have never met this community of wonderful people all fighting for the same goal. He looks at them as a team, working together for success in the most important fight of their lives.