Introduction:
Hello, my name is Denise Rieman. I am a Registered Nurse educated at the University of Cincinnati. I am a lifetime resident of Cincinnati, Ohio. I have been living with Parkinson's Disease for over nine years. My journey with Parkinson's began following two years of failure to diagnose. Having to advocate for myself to reach a diagnosis of Parkinson's, I am passionate about advocating for persons unable to navigate the healthcare system themselves and raising awareness about the disease. The years since have been challenging, but it has also taught me a lot about resilience, hope, and the importance of community.
My Parkinson's Disease Story:
Diagnosis:
Share when and how you were diagnosed with Parkinson's disease. September 2015 began my 1st symptoms with my right foot and leg. I often experienced the toes on my right foot curling in my shoe during a brisk walk or exercise. I referred myself to numerous specialists in my area until July of 2017 when I was able to get an appointment with a movement disorder specialist at the Cleveland Clinic. Local movement disorder specialists were scheduling further out in the future. While pre-registering for the Cleveland Clinic visit, their electronic questionnaire alluded to the diagnosis of Parkinson's Disease. I was shocked. The actual office visit was really one of acceptance for me. I had the diagnosis within 10 minutes of the start of the actual exam.
Describe any initial symptoms you experienced and how you felt when you received the diagnosis. While participating in a cardio-dance class, my right leg suddenly quit moving. It was the oddest sensation; I describe it as feeling like a 'tree trunk'. The leg felt heavy, grounded. As I shuffled a few steps to the side, outside of those still dancing, I recall thinking, " Did I just have a stroke?". The diagnosis itself is devastating. I often say, 'All I ever wanted to do was move and, I now have a movement disorder'.
Living with Parkinson's:
Discuss how Parkinson's disease has impacted your daily life, including any challenges you face with movement, balance, or other symptoms. Parkinson's Disease has challenged me most with painful dystonia of my right foot. Usually at the most inopportune time. I notice these episodes are more severe or longer duration under stress. Secondly, frequent waking or just plain inability to get a good night of quality sleep impacts my productivity at times. Lastly, fine motor skills of my hands limit my writing, typing and cooking at times.
Mention any changes you've had to make in your lifestyle or routine to accommodate your condition. Simple things I've included are electric toothbrushes for one. In the kitchen, I use gadgets like a 'pulley' chopper; those are things once nearly impossible are now doable. I've learned to use Dragon Talk to Type software for work purposes at the computer. Actually, I walked away from my corporate job to spend less time at the computer and started my own business this year! Mostly, I laugh more and worry less about the things I cannot change.
Treatment and Management:
Talk about the treatments you have tried, including medications, therapies, or surgeries. Having done some reading about Parkinson's Disease between the time of 'enlightenment' of the Cleveland Clinic's pre-registration questionnaire and the actual visit. I had decided I wanted to delay dopamine dosing as long as possible. I did however, desire symptom relief. I began selegiline twice daily. Several months later, pramipexole was added to my regimen. Lastly, Sinemet was added in 2020.
Highlight any strategies or practices that have been particularly helpful in managing your symptoms. Early on, I understood the importance of exercise in controlling symptoms both physically and mentally. I found a local gym preparing to open. They were offering Rock Steady Boxing. I became the gym's first participant, and I boxed three times per week. The results were evident quickly; I regained rhythm in my stride, walked while swinging both arms, my posture greatly improved, and my confidence returned. Outside of boxing, I bowl, play golf, pickleball, billiards and returned to dance aerobics. I even became certified to teach Zumba in 2019! I engage in some form of exercise daily.
Support and Community:
Describe the support you have received from family, friends, or support groups. Where would I be without the support of my boxing mates, our gym and the staff, my friends and family?! I shudder to think. I motivate my Parkinson's peers at the gym and they motivate me to work hard. My family would do anything I ask of them and that reminds me that I am loved. My friends call me an inspiration and that reminds me of my gifts, regardless of Parkinson's disease.
Emphasize the importance of having a strong support system and how it has helped you cope with the disease. Even the strongest of us wrestle with self-doubt at times. Having someone that knows you well enough to call you out on it and encourage you to move forward is what brings you joy and fulfillment despite disease.
Hope and Future:
Share your hopes for the future, both for yourself and for advancements in Parkinson's disease research and treatment. My hope is that quite simply, we rid the planet of Parkinson's Disease. I want to be able to test our children and identify those at risk early in hopes of changing outcomes. I would like to identify and rid the planet of noxious agents that cause Parkinson's Disease. For myself, I want to be able to continue dancing and, at the very least, be able to continue to walk wherever and whenever I want.
Offer any advice or encouragement to others who are living with Parkinson's disease. Get out there! If there is somewhere you want to go or something you want to do, make it happen. Don't wait. If you can't visualize the pathway, start small, ask others for help. Grow your network of friends and support people; don't let your world get smaller. You can do it and, you will find love and fulfillment!
