** For 17 years Barb Green has walked and volunteered at the Moving Day Twin Cities: Walk for Parkinson’s annual fundraising event sponsored by the National Parkinson Foundation Minnesota (NPFM). Barb’s first walk was in 1997.
My dad was always a kid at heart. He did not like practical gifts. He liked to play sports and games like Jarts, golf, bocce ball, bowling, softball, pinball machines, and he loved to swim. Old movies and quirky TV comedies were fun entertainment for him. If you remember Mary Hartman or Monty Python then you will understand his wonderful sense of humor. Dad always had a home project he was working on and family time meant everything!
Diagnosed at 48, my dad lived with Parkinson’s disease for 26 years. It is the example of his life that I share with others facing an early diagnosis. The early years were not different for our family. We sometimes noticed the tremor in his left hand. It was 10 years before the disease progression changed our lives. Dad had to retire before he turned 60 and getting disability coverage was difficult as my parents owned their own business. Adverse reactions to some medications caused hallucinations, compulsive behaviors and bad dyskinesia. Driving was no longer an option. Twenty years into the diagnosis began the very, very difficult time. My mom did the best anyone could but at the age of just 70 he moved to the Minneapolis Veterans Home for the remainder of his life.
The Walk for Parkinson’s began in 1988. Obviously the primary reason for a walk is to raise funds to do the work that is needed. But, equally important is to raise public awareness and show support for those living with PD. We walked as a family for my Dad. My sister and I joined the Walk Committee in 1997. My daughter joined us in 2009. I became the Committee Chair in 2011 when we adopted the Moving Day branding.
Year after year I am motivated to continue this work because of the people in the Parkinson’s community. Their inspiration and hope for the future is all I need. I continue to honor my dad, as does my extended family, but it is also to honor those that are no longer with us, and to support those that are living with this disease now- the person with PD, their family and friends.
Moving Day has greatly enhanced our ability to raise awareness. The walk has grown substantially since 2011 in participants, teams and sponsors. It is truly a meaningful event. Our challenge is still getting more attention from the local media.
Moving Day is a time to remember my dad and a time for all families to focus on their loved ones. Dad was so proud that our whole family was involved as volunteers. This year there were 20 of us volunteering in different areas of the walk. I also reflect on others living with PD that were part of the original walks and are no longer with us.
I also love to hear from those who have attended their first Moving Day- they feel so supported. Standing on the hill at Hilde Park and looking at all the people is reward enough. My hopes for Moving Day Twin Cities 2016 is increased participation and increased awareness. Each time someone new learns about PD we have helped another family live better. Every dollar raised means NPFM can grow and expand the important work that we do.
My hope is that everyone diagnosed will have access to a physician who is a movement disorder specialist, they receive the therapies and support needed to live well.
Moving Day Twin Cities is truly a family affair. In the early years my mom and aunts volunteered. Soon my brothers and sisters-in-law volunteered. Then our daughters, nieces and nephews got involved. Now the next generation of spouses and friends have joined in. Engage your family and friends in Moving Day Twin Cities- watch what happens!
The fear can no longer be tucked away after a certain point. These questions and more present themselves when you notice what the disease is doing to your loved one on a daily basis.
As so many others, Marie Dydasco - Walch has to “watch” her brother’s Parkinson’s disease (PD) progress from afar. Marie is from the Island of Guam and that is where her family still lives.
Ashley and Justin Remus live in New Ulm, Minnesota, a farming community about 100 miles southwest of Minneapolis. They’re keenly aware of the lack of information and awareness about Parkinson’s disease (PD) in small towns and rural areas. In fact, they lived this lack when Justin’s grandfather was diagnosed with Lewy Body, a variation of PD, in 2007 and passed away in 2011. “It took three to four years for my grandfather to be properly diagnosed,” Justin said.