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September 19, 2020, a date I will always remember, the date I was diagnosed with Parkinson’s. For me that word meant that my life was over, here I was 67 years old with a disease, that there was no cure for, and I was going to spend the rest of my life needing someone to take care of me. I was no longer going to be able to do the simple things in life that I took for granted.
I soon found out how wrong I was! I found a support group (Detroit Support Group). My neurologist referred me to Speech Pathology, Physical Therapy and Occupational Therapy. I also started exercising 7 days a week for at least 1 hour a day. The best medicine for PD is to get out and join groups to meet people that know and understand how you feel. I am now a part of Rock Steady Boxing (Parkinson’s Movement Center), Motor City Upbeats Therapeutic Singing Club, Water Aerobics, and I also started a personal Journal about my feelings concerning Parkinson’s which I named Fear Knocking at My Door. My best support is my family, they have been with me since day one of my PD journey.
I am inviting you to join me in this journey, together we can slow this disease down if not stop it all together.
At the age of 42, after experiencing a tremor in her left pinky, Jennifer was diagnosed with Young Onset Parkinson’s Disease. Her first thoughts were shock and fear, as this diagnosis never crossed her mind. She knew nothing about Young Onset Parkinson’s Disease. Initially, her main concern were her young children and spouse and how the disease would impact their lives and their future.
While living with Parkinson’s disease can be challenging, she has never asked the question, “`Why.” Instead, she would rather focus on the “what”- What can she do to try and stay healthy both mentally and physically and also what can she do to help make a difference. With the help of her faith and her very supportive family and friends, she knows she will persevere. Rather than feel sorry for herself, she is determined to make something positive out of the situation. She is using her passion to provide means for continued awareness and research for a possible cure.
Shortly after her diagnosis, Jennifer decided she needed to be a voice and to bring hope to others battling with this disease. She started a non-profit organization; has successfully started a support group in Southeast Michigan; has held several successful fundraisers and has had a presence throughout the states of Michigan, Ohio, Illinois and Florida at Parkinson’s walks. On a day-to-day basis, the goal is to continue to bring hope, awareness and support to anyone touched by this disease.
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.
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.
“You have Parkinsons Disease.” I will never forget those words in July 2021 when I was first diagnosed with PD at age 55 by a Neurologist with poor bedside manners. I was devastated with this shocking unexpected news, and in a dark place emotionally and mentally. To seek a 2nd opinion, I contacted a highly regarded Movement Disorder Specialist. She was wonderful and spent 2 hours with my wife and I confirming my diagnosis. After the military, I built a successful career over 20+ years in the automotive industry in senior leadership positions of increasing responsibilities. I have been sought after frequently in my career as a Senior Leadership Mentor to high potential employees.
The US Department of Veterans Affairs has classified me as a 100% service-connected disabled US Marine Corps veteran due to contaminated drinking water at Camp Lejeune, Jacksonville, NC. However, I am living my best life with Parkinson’s with diet, daily exercise, and strong positive mental toughness.
As a former highly trained US Marine, I feel that I am uniquely qualified to help support Veterans in the Parkinson’s community, and someone newly diagnosed with Parkinson’s. My sincere objective is that by sharing my story, I can improve someone’s quality of life and address the inevitable anxiety and fears that come with our shared PD journey.
I was diagnosed nearly 16 years ago, and although I have had some physical decline, I maintain a generally optimistic outlook for the future. Early on, I made the decision to take the initiative to find out how to live my best life moving forward with this disease. As an athlete, I was happy to discover that exercise was key to slowing the progression of the disease. I also learned early in this journey that everyone’s experience with this disease is different, and that I shouldn’t “borrow trouble,” by assuming that symptoms other PD patients experienced would ultimately be my fate as well.
I have had not one, but two DBS surgeries, so I can speak of that experience first hand. Also, as a facilitator of the PD SELF program (a fantastic program that teaches self efficacy tools to newly diagnosed people with PD and their care partners) in Detroit for 5 years, I feel that my experience with that program would be helpful to those folks who are overwhelmed by a new diagnosis.
Although I have had to hang up my hockey skates, I can still golf reasonably well, and still enjoy a vigorous bike ride. My nature photography hobby which used to include walking great distances, lugging heavy cameras with huge lenses, has transitioned to short walks carrying a single lightweight camera and a built in zoom lens.
I am blessed to have my incredible wife Rose as my care partner, and tremendous support from my friends and family. I don’t know for sure what the future holds (but then again who does?), but my faith allows me to face that future peacefully.
I was diagnosed with PD in September, 2009, a month shy of my 43rd birthday. I have since run the gamut of available pharmaceuticals – carbidopa/levidopa, Azilect, agonists, etc. When the drug therapies were losing their effectiveness and after much discussion of our options with our neurologist, my wife and I ultimately decided on Deep Brain Stimulation (DBS) surgery. The surgery was completed in June, 2020 and we have no regrets. The results have been (pun intended) stimulating!
As the 5th of 6 children, I have always been very active physically, playing all kinds of ‘ball’ in the backyard as a kid with my siblings, neighbors, and friends. Since getting the COVID-19 (lbs that is!) and with the rigidity progressing from my PD, I find it much more difficult to stay active these days. However, I still believe that activity/exercise is a very important tool to delay the effects of PD.
Peronally, I have a wonderful wife of 35 years, Heather, two terrific children, Grace and Gabriel, and a dog named Bodie. I am a retired financial analyst in the automotive industry. I feel very honored, blessed, and grateful to MPF to be given the opportunity to share my experiences as a mentor and invite anyone who is struggling with the decision to DBS to reach out to me.
But I’m only 43, I can’t have Parkinson’s.” That was my reaction when I was first told I likely had PD. It took another year of doctors to confirm that diagnosis.
I spent several years wrestling, bargaining, and finally accepting that I had this progressive disease. I had reached a crossroads of “now what?” Do I sit around feeling sorry for myself and let this disease consume me? Or do I take charge of my future and live my life to the fullest for as long as I can. Please read further to see how I came to terms with Parkinson’s Disease.
On a warm summer morning during one of my usual early Saturday morning rounds of golf at the Brookshire, I took an extra moment on the tee box, allowing all of my senses to take in the picture-perfect morning. Without warning, tears began streaming down my face. Although I had been diagnosed with Parkinson’s six years earlier, it wasn’t until this perfect moment in time that I was overcome with the reality that I have an incurable progressive disease which will someday likely rob me of moments like this and take away my ability to play the game that I love so much. This was the inspiration for the golf outing I host each year.
With help from my wife, Brenda, my daughter Madison, my Mom, my Dad, and many others along the way, our golf outing has grown into something far beyond anything I ever could have imagined. It has given me something positive on which to focus my time and energy. It has resulted in the formation of Making the Turn Against Parkinson’s and helped me find a voice I never knew I had. It has granted me peace of mind knowing I have a connection to golf despite what the future may hold for me. But most importantly, it has provided me the opportunity to make many new friends and meet a lifetime of interesting people I wouldn’t have otherwise.
To quote my own personal motto, “I cannot say being diagnosed with Parkinson’s has been a good thing. But I can say, good things have happened to me because I have Parkinson’s.”
Whether meeting on the course or by phone, I hope I by sharing my experience with Young Onset Parkinson’s and Deep Brain Stimulation surgery, I can help you better understand your own Parkinson’s journey.
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