Living well with Parkinson’s is up to you

Parkinson’s is known as a “designer disease” because the symptoms, rate of progression, and degree of disability vary greatly from person to person. Coming to terms with this unpredictability, and the fear and uncertainty it creates, is key to living well with this disease.

As Parkinson’s progresses, it changes our roles in family, work, and social situations, leaving an indelible mark on each of us, and forever altering our sense of who we are and what the future holds for us. While it is natural to grieve for our losses, it is imperative that we keep the “pity party” short and get on with the business of living. Remember that no one — not even the temporarily healthy — is promised tomorrow. Some of us just come face-to-face with this harsh reality sooner than others.

We have two options — allow anger, fear, and depression to destroy our personal relationships and careers, or seize opportunity from the jaws of adversity and find new purpose for our lives. The key is to focus on what we can do, not what we can’t; and to make the most of our remaining good years. Everyone has a gift they can share to make an impact on the lives of others.

On my own 11-year journey with Parkinson’s, I have discovered things about myself I never knew, done things I never dreamed of doing, and forged friendships with people I would otherwise not have encountered. Working on pdplan4life with my good friend and co-founder Jean Burns is the most fulfilling venture I’ve ever undertaken. Your positive feedback has touched our lives as much as we have touched yours.

Your tremendous outpouring of grassroots support made the impossible possible, propelling the success of our campaign to make the PD tulip designed by Karen Painter the national symbol for Parkinson’s awareness. We expect it to do for PD what the pink ribbon has done for breast cancer, and to serve as a reminder that the cure will be found when we focus our combined efforts and funds on this singular goal.

What can you do to live well with PD?

• Learn as much as possible about Parkinson’s in order to partner with your doctor to make informed decisions about your health care.
• Begin a daily exercise regimen to help you remain active and independent and enjoy a better quality of life for longer.
• Participate in clinical trials — the only path to improved treatments and a cure.
• Raise public awareness of PD by talking to others about how this disease is impacting your life.