My Parkinson Story is a weekly column featuring member of our community, sharing their stories with PD. We are interested in sharing a wide array of experiences, including yours! PD looks different in everyone, and affects everyone differently, including friends and family of those with PD. If you’d like to share your story on our blog, please email us.
Five years ago, when I was diagnosed with PD, I wrote an article for the PSW newsletter. The tile was “My New Reality”. I expected the diagnosis, as our son had been dealing with Parkinson’s for about 15 years, and as a volunteer with the Parkinson Support & Wellness Organization, I had many opportunities to learn about PD. I knew too much about the symptoms I was experiencing. At least I did not have to deal with denial.
I began the newsletter article by commenting, “Life has always been uncertain, but the reality of Parkinson’s turns that up a few notches. As this new reality sinks in, I have allowed myself to consider what the disease will take from me and how rapidly this may happen.” I commented further, “Continuing to dwell on this was a waste of time”.
I concluded my article written 5 years ago by stating, “Through my involvement in PSW I had come to know and work with a whole cast of role models for whom I continue to have the greatest admiration and respect. They focus on what they can do rather than what has been taken away. These are the people who can and will show me the way. Now it is my job to follow their example.”
I ask myself today, “Am I following the example of those living well with PD? What have I lost, and how am I dealing with it?” PD certainly has its darker moments. However, the answer is that I am living well with the disease, as my symptoms increase in severity and change. I move and think slower. Balance is a substantial issue. If I lose concentration and think about something else while making simple moves like changing direction or position, the risk of falling increases dramatically. I have hit the deck several times. Concentrating on one thing at a time is an important adaptation. Multitasking is a thing of the past. I enjoy working in our Clifton home landscape. We have a substantial uphill in the back with lots of flowers and shrubs, which require regular maintenance. I cannot walk on that hill anymore without much higher risk of falling. I get the job done by crawling and scooting. Gardening or anything else just takes longer. While it may be frustrating, slowing down or changing the way of doing things is a reasonable price to pay to continue doing what I want and like to do. I hope as PD progresses, I can accept that some, or much, of what I want and like to do cannot be continued. I hope I will find new interests and challenges I can handle. I am sure that is what my role models will do.