Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at www.PDPlan4Life.com) Copyright 2013-20 Sheryl Jedlinski
by Sheryl Jedlinski
When I posted my story, “Make my day,” it elicited the Facebook equivalent of a standing ovation. My victory over a bully who was determined not to share his swimming lane was celebrated throughout the Parkinson’s disease (PD) community. One woman commented that she “would have been stunned by his lack of courtesy, gone elsewhere or gone home, and then thought of all the brilliant things (she) should, would, or could have said. From now on, I am going to think of you, and this, and swim in any damn lane I choose (metaphorically speaking).”
Why did this particular post trigger such strong feelings? I would venture to guess that, among other things, people with Parkinson’s (PWP) as a whole don’t have too many wins in our column, making even the smallest of victories empowering and cause for celebration. What can we do to help ourselves live well with PD today? Empowerment can take many forms; some as simple as choosing your own neurologist/Movement Disorders Specialist, learning all you can about PD, and making informed treatment choices with guidance from your healthcare team. Team members should be sensitive and responsive to patients’ PD-related concerns, such as body image and feelings of isolation and of being a burden to others.
Adding exercise to your routine will improve your overall health and sense of well being without introducing any negative side effects. Getting together with others facing similar challenges exposes us to different techniques for more effective self-management of PD. Taking a more active role in managing our PD (i.e. making lifestyle changes), helps us achieve improved medical outcomes, greater independence, and a better quality of life. Obtaining optimal care hinges on establishing an effective relationship between us and our doctors.
Meanwhile, a sense of powerlessness ebbs and flows throughout the PD community. On days when our symptoms are well-controlled, we tend to project a more positive attitude and a general sense of well-being. Other mornings it takes all the strength we have just to get out of bed and face another day with a body and brain that turn on us every chance they get. We feel tired and powerless from the moment we open our eyes. No one steals our power; we give it away, piece by piece, over time. The important thing to remember is that none of us has to face PD alone. The strong, extensive PD community provides a sense of belonging that promotes happier and healthier living for all PWP.