My First Five Years
Steve Walsh 8/13/2019
It hardly seems possible. It was 5 years ago during our annual family vacation in the UP that I first heard the words “I think you have Parkinson’s”. It was our daughter Jessica (a nurse) who diagnosed my Parkinson’s simply by watching me walk. Jessie lives in Utah and had not seen me since Christmas. The changes that were so subtle and gradual to me were glaring to her. Upon our return home a visit to our new neurologist confirmed Jessie’s diagnosis. I was officially a PWP (person with Parkinson’s). As I sit on the deck enjoying the view, I can’t help but reflect on these past 5 years and how my Parkinson’s diagnosis has changed my life. I have learned so much these past 5 years. I’ll try my best to explain but I feel like my words may not adequately capture my experiences. Nevertheless, I’ll give it a shot.
Things I’ve learned in my first five years with Parkinson’s
- I have a large and loving network of family and friends. OK. I didn’t learn that from Parkinson’s. I already knew that. However, being diagnosed with PD (or other debilitating disease) certainly gives you a greater appreciation for the loving people in your life. Then you learn that not everyone is blessed with such a support system and your appreciation grows even greater.
- The world is full of amazing, caring, strong and courageous people who are anxious to help you in your journey. This is not unique to PD but since that is my journey that’s what I will speak to. I can honestly say that each time I attend an exercise class, an educational event, a support group meeting, fundraiser or any PD related event I come away energized and inspired. The same is true for the global online Parkinson’s community. I have made many PD friends whom I have never met. We support and inspire each other every day.
- If you are going to have Parkinson’s, Louisville KY is a good where to be. Please pardon the grammar. “A good where to be” is kind of an inside joke with my family and friends. I even wrote a song titled “A Good Where to Be”. Anyway, back to the point. I was able to see a Movement Disorder Specialist (Dr. Justin Phillips) shortly after moving back to Louisville in Oct 2017. Dr. Phillips has been a great friend to the Parkinson’s community. Another advantage to being in Louisville is the Parkinson’s Support Center of Kentuckiana (PSCKY). The PSCKY offers a wide variety of educational, exercise, and support programs for PWP and their families. The Rock Steady Boxing program founded by Doug and Ann Pifer is just one example of the great programs the PSCKY offers.
- If you think it sucks to have Parkinson’s, try being a Caregiver. I’ve said many times that I have no choice when it comes to having Parkinson’s. My wife Terry chooses everyday to stand by my side on this journey. As I stated earlier, not everyone is blessed with such a “true companion” (Marc Cohn). I will never take her love and support for granted.
That’s all for now. I know I’ve learned a lot more about PD symptoms, medications, therapies, etc. and that stuff is important too. But the people – family, old and new friends – those are what I treasure the most from my first five years with PD.