We were introduced to Parkinson 35 years ago when Joe’s father was diagnosed. Prior to that we had barely heard of Parkinson’s, let alone understood what it was. We were not his primary caregivers, but took on an ever-growing set of responsibilities around his house so he could maintain his independence and quality of life.
Twenty years later, Stephanie’s mother was diagnosed. She stepped into the role of primary caregiver, doing the shopping, banking, cleaning, laundry, coordinating doctor’s visits and managing the medicine. Again, we assumed responsibilities around her house so she could maintain her independence.
Then eight years ago in 2015, Joe was diagnosed. He went home and crawled into bed for 2 days. Stephanie on the other hand went into action mode. Taking the lessons that we learned with our parents, we made an appointment at the Michigan Parkinson Foundation, researched the right neurologists for us, and looked for clinical research trial opportunities.
We are a team! Stephanie understands the progression and changes I am going through and adapts our lifestyle to accommodate. I am overwhelmed by her willingness to take on this challenge while keeping a positive outlook as we walk this journey together.
We live an active lifestyle, working part-time, visiting with friends, volunteering, golfing, camping, and exercising. We spent 3 months this past year traveling with our camper. We realize we are not in control, but we keep a positive outlook and believe we can make a difference. We do that by volunteering at organizations and related events, working on committees, talking with students in physical therapy programs and participating in clinical research trials. It is our belief that without an understanding of the disease; diagnosis, slowing the progression, halting, and ultimately eliminating the disease will not be possible.
Feel free to reach out to Stephanie as a caregiver, or myself as a person living my best life with PD, or both of us as a team. We’d gladly share our experiences: