Search for a Mentor in Michigan

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:

Hi! My name is Kathy. I am a care partner for my husband, Gary, who was diagnosed in 2012 with Parkinson’s and, more recently, with Dementia. I’m so glad that you are looking for support on your caregiver journey! I would be honored to be a listening ear and to share my experiences of caregiving, in hopes that it can lighten your load and give you hope.

I spend a lot of time researching Parkinson’s related symptoms, treatments, medications, exercises, therapies, daily living accommodations, and more in my effort to maintain my husband’s quality of life. I love to share what I learn with others to help them have the knowledge and resources to make informed decisions. Knowledge is so important when it comes to managing Parkinson’s and being an advocate for your loved one.

I am grateful that I can be here for my husband, but being a caregiver is hard. It is so easy to get lost in caring for your loved one and not take care of yourself or do activities that you enjoy. This can be from a lack of time or energy, or the guilt of being able to still go, do and enjoy things that your loved one can no longer do. It is critical that you redirect some of your time and energy devoted to your loved one, towards yourself.

I tell you this, because I didn’t take my own advice until I made a trip to the ER for stress induced heart palpitations in 2021. At that point, the knowledge that I need to take care of myself literally made the 12 inch journey from my head, to my heart, and I started to take action. Since then, I have allowed others into our journey rather than try to put a happy face on and keep them at a distance. And recently, I took the hard step of placing my husband in a facility for a week so I could get true respite. It ended up a blessing for each of us.

Taking care of yourself is not easy, it takes time and energy. But the benefit of doing so will result in a stronger and more energized you. You deserve self-care and you are worth it.

Contact Kathy:

I am a Person with Parkinson’s who was diagnosed prior to my 37th birthday. Hearing those words, “You have Young Onset Parkinson’s Disease,” I’ll never forget those feelings of confusion, heartache and not knowing where to turn for help. I had three kids still in school and I was working full-time. Then I felt I didn’t exactly know what Parkinson’s meant but I didn’t have time for it.

I quickly learned over the last 8 years that my lifestyle was going to have to change as “Mr. P” (Mr. Parkinson’s) had its own plans for me. After going through the most unique and powerful self-observation, self-healing, Deep Brain Stimulation, I understood that this is simply a new chapter in my life.

I may not be able to skydive like I did before, but I’m learning how to navigate and enjoy life within itself. My perspective on most things is that I cannot lose my sense of humor. I am determined to make the rest of my years, the best of my years, one day at a time.

Contact Melissa:

The only thing I knew about Parkinson’s Disease was Michael J Fox but, in reality, I knew nothing about PD until my husband, Frank, was diagnosed in 2018. Up to this time, we led a pretty active social life, golfing, travel etc. I’m sure like most others in this situation, the initial signs were completely lost on us, but now, of course, make absolute sense. The small handwriting and hallucinations being the most prominent to start with, and right-side tremors followed. Because Frank could no longer drive, I retired from my fulltime office job to be at home with him. We’ve spent the last 6 years educating ourselves as much as we can and after 4 visits to the ER over the past year, have finally landed with a neurologist (our 3rd), cardiologist, and PCP (our 2nd) who we feel are providing us with the very best care/advice possible. This has been a scary and challenging time for both of us, coming to terms with this life-changing diagnosis, adjusting to our new lifestyle and setting achievable daily goals. But every day brings something new. And as strange as this may sound, this ‘something new’ is actually rewarding because we’re learning more and more about not only the disease but about ourselves, and how to cope on a daily basis with Parkinsons and each other. We’ve found that just taking one minute, one hour, one day at a time has been the best approach. My sincere wish as a Mentor to anyone with Parkinsons is to first, provide comfort and assurance they are not alone, and secondly to provide support and share knowledge with them, their family and friends about all the resources, information and events that our Parkinson associations have available. No one should have to take this journey alone.

Contact Talei: