Rarely is there a time that I don’t think about Warren. It’s uncanny. I don’t love him, yet he is with me all the time, so I seek ways to accept him. Warren is the name my three kids and I gave to my diagnosis of young-onset Parkinson’s disease (YOPD). Instead of saying the scary term, “Parkinson’s disease,” we laugh and say things like, “Warren is around,” or “Warren kept me awake all night.” I have no choice but to respect him, as he has taught me about gratitude and the importance of being present.
I was diagnosed with YOPD at 41 years old. Following the diagnosis, I began to realize how many of my symptoms were signs of Parkinson’s. I had lost my sense of smell seventeen years earlier. At the time, I thought my son was especially sensitive to smells, and I often joked that he “took my sense of smell.” I was also a marathon runner and I started to fall a lot during training. My foot also started doing this funky, painful turn. I had no idea that this may have been a symptom of PD.
Two years later, and with much stress in my life, I developed a tremor in my arm and sought medical advice. When I visited a neurologist, she watched me walk and noticed that my left arm did not swing. I had never even noticed that!
I never imagined being diagnosed with YOPD. I was a single mom and a full-time teacher raising three kids. I tried to find child-friendly literature to explain Parkinson’s to my kids; there were some books, but most of them included a surplus of medical jargon. I am currently working on a children’s book to provide families with the springboard they need to discuss this disease and how it may impact them.
I was in denial about PD for a long time, and it was my daughter’s school project that pushed me to accept my diagnosis. She created a carnival “Go Fish” game titled, “Fishing for a Cure for Parkinson’s.” WOW. Kids say the darndest things.
Now ten years later, I “runwa” (run/walk) and try to get my heart rate up nearly every day. I walk “BIG” and do a variety of exercises. I also try to challenge my brain daily. I am stronger than I have ever been, and I put my physical and mental health first. It hasn’t been easy, and Warren sometimes still shows up, but I eat healthy and I have finally figured out how to stay asleep! I work hard to keep a positive attitude.
I was first introduced to the Parkinson’s Foundation through the Community Partners in Parkinson’s Care program. Now that my children are older, I can devote more of my time to supporting the Foundation and assisting the Parkinson’s community! One way I show my support is through fundraising for Moving Day. This past year I raised more than $1,200 for Moving Day Twin Cities, and I plan on surpassing that amount next year.
I look forward to sharing my knowledge about PD and finding more creative ways to raise money for research. I hope that one day, I can finally break up with Warren! Learn the 10 early signs of Parkinson’s disease.
Learn the 10 early signs of Parkinson’s disease.