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 when she and her sister signed up together.
“It’s become a family affair. Now more than twenty of us volunteer for the event including my husband, daughters, brothers, sisters-in-law, nieces and nephews and friends,” said Barb.
Barb’s father was diagnosed with Parkinson’s disease (PD) in 1979 at the age of 48.
“I didn’t know anything about PD, but I knew it was bad. When I heard the diagnosis, the first thing I did was to run back to my apartment to look it up in the dictionary,” Barb said. “At first we didn’t think much about it, but by the mid 90’s Dad’s symptoms became more pronounced. I took my father to a support group at the Parkinson’s Center at Methodist Hospital. After a few meetings, my mother joined us in the support group and they continued to go for many years.
Dad loved to go to the day program at Struthers Parkinson’s Center. His specialty was ceramics. He made seven ceramic dwarfs. When he passed away in 2005, we all wanted the dwarfs. We wanted to remember our dad/grandpa and his willingness to try different things he had not done before.”
Barb’s first volunteer position was at the Struthers Parkinson’s Center day program. She would help a client bake brownies, help with lunch and assist individuals so that they could participate in activities. From there Barb got involved with Parkinson Association of Minnesota (now NPFM).
Barb is dedicated to helping people with PD and their families. Barb’s mother passed away early this year from cancer. When asked why she chooses to volunteer for PD versus cancer, she replied, “Everyone knows and understands cancer. Cancer groups have lots of volunteers. But most people don’t know about PD or understand it- they think PD is just tremors. People don’t realize there are other non-motor symptoms such as dementia. PD is misunderstood and underserved.”
Today Barb works part time for NPFM and volunteers there. When someone calls in to NPFM, Barb is the one who picks up the phone and tries to help the person on the other end, whether it is a person with PD or a family member of someone with PD. Barb said, “The other day a woman who was just diagnosed called to get more information about PD. A wife who is a caregiver for her husband called to find out where she could get some respite care. I can connect with these people because I have been there. I give them information and suggestions. Sometimes they just need to talk to someone who understands what they are going through.
“The people who are involved with the PD community in various ways are amazing. I see people at events that I have known and worked with for years,” said Barb. Barb and her extended family will participate in Moving Day next year. And Barb’s family of people in the PD community will be there as well.
Story written by Susan Gangsei, author of The Light in the Middle of the Tunnel – Harrowing but Hopeful Stories of Parkinson’s Family Caregivers.
Life is bittersweet for Steve Snater. He is living with his parents so that he can be a caregiver for his father, who has Parkinson’s disease (PD). “It sucks in every way,” said Steve. “But it is wonderful that I can be there for him.
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.
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.