What has your life been like since your diagnosis?
At the time of my diagnosis, I was working full time as an advocate for children in the foster care system, which required court appearances and accurate note taking, two actions that were heavily impeded by my Parkinson’s. I was able to continue in this role for about two more years before things progressed to the point that it became time to retire.
I then tried volunteering part time for local nonprofits by providing transportation for clients and providing office support. Over time, this too became difficult and I had to withdraw from these community activities. The exception is that I participate in numerous clinical studies and trials focused on Parkinson’s issues through Oregon Health Sciences University and the VA.
I do have a regular weekly schedule of exercise that includes yoga, cardio and strength workouts at a gym, non-contact boxing and daily walks with my dog. However, the things that really keep me going are the support and prodding by my wife to keep living well and the philosophy that I will not let Parkinson’s control my future.
How do you live well each day?
I believe that maintaining a regular daily routine is a critical component of living well with Parkinson’s. I focus on what I am able to do rather than what I am no longer able to do. I have household tasks that provide a sense of purpose and I get out into the community to keep life interesting, even if all I can do is walk my dog and wave at the neighbors. The social interactions I have at my gym or at my Parkinson’s support group are key factors in helping me fend off depression.
What do you wish you would have known when you were diagnosed that you know now about living with Parkinson’s?
Receiving the diagnosis was a traumatic experience that left me feeling unsure about my future. And my wife and I were left pretty much on our own to find resources in the community. It would have been nice if there had been someone to guide us in locating resources that fit our needs and to hear that it is possible to live a full and rewarding life even with the diagnosis.
If your experience has been similar to Charlie’s, be sure to connect with one of our ambassadors here. Davis Phinney Foundation ambassadors share our resources and information throughout their local and regional communities to help people take action and improve their quality of life with Parkinson’s.
What do you wish everyone living with Parkinson’s knew about living well?
It is possible to have control over how Parkinson’s impacts your life by keeping a positive outlook, exercising regularly and maintaining an active social life.
Share Your Victory
Each month, we spotlight someone from our Parkinson’s community who embodies living well today – what we call Moments of Victory®.
Your story, like Charlie’s, could be featured on our blog and Facebook page so others can learn from your experiences and victories.