“Faces of Parkinson’s” is a book that features the stories of those with Parkinson’s disease (PD), care partners and family members. The idea stems from an event, “Parkinson’s Family Event,” started five years ago after the passing of my parents. With a limited budget of about $1,500 left by my parents we sought to bring those with Parkinson’s together with a goal to garner more family support and education and grow the PD community. The evening includes a meal and has always been free! We like to think we are giving the caregivers a night away from responsibility and those with Parkinson’s an evening out!
My mother had Parkinson’s; my father was her caregiver. As most of us have learned with Parkinson’s, the disease progresses with time. The struggles become tougher for the person with PD and their caregivers. Many times, the caregiver does not ask for help, which compromises their health as well. It was not until my father was hospitalized with heart surgery that we had to take over as caregivers. To say we were overwhelmed and unprepared is an understatement! Sadly, my mother died in the month that my father was recovering in the hospital from his surgery and they never had a chance to say good-bye.
Parkinson’s Family Night emphasizes family. In past years we have featured a comedian with PD and a motivational speaker with Multiple Sclerosis who climbed mountains and proceeded to plan climbing trips with those with PD. In 2019 we wrote our book to share stories of this disease from all perspectives. Sharing the stories creates community, reminding us that we are not alone. It offers insights into backgrounds that may have led to a PD diagnosis, suggestions that can make life easier, hope and positivity!
The Parkinson’s Foundation community grant allowed us to complete our book and continue to host our free family event. Every family that attended the 4th Annual Parkinson’s Family Night received a book. To accompany the book, we showed a video interviewing people in the book. Some were shown in a Rock Steady Boxing Class. Some stories made you cry, some made you laugh! We had 111 participants at the 2019 Family Night!
For our 5th Annual Parkinson’s Family Event we are changing things up with a BBQ luncheon on September 6, with a band and dancing. Our theme is “The Faces of Parkinson’s” and we will allocate our remaining grant funds to add art! We are working with area artists and offering monthly art classes culminating with an art show at our next event.
When the Stay-At-Home orders came about, and everything was suspended we still had art supplies! We delivered art kits to anyone in our PD community who wanted to participate! Hopefully our annual event will go on! Parkinson’s Family Events are open to all that we can reach through our area support group, My Rock Steady Boxing Program, the area Senior Centers, the Wisconsin Parkinson’s Association and media.