My PD Story

After living with Parkinson’s disease (PD) for more than 30 years, I know how it impacts a person’s life and their loved ones.  

I first noticed tremors in my arm while participating in a fox hunt. It took more than eight years and several specialist visits to finally confirm my symptoms were a result of Parkinson’s disease.  

While my journey has not always been smooth, I’ve found happiness in keeping PD at bay by taking control of my treatment and working to overcome the physical and emotional effects of Parkinson’s. I’ve learned that viewing life through Parkinson’s can help you cherish each positive moment and work toward fulfilling your dreams. 

After all I’ve been through with this disease, I want to offer some advice that has worked for me to manage Parkinson’s. I recently wrote “Thirty Years with Parkinson’s Disease The Unscientific Truth” as a free study or self-help guide, using my life experience as an example. If you are interested in reading it, please contact Kelly Austin at kaustin@parkinson.org. Here are some of the thoughts I share in it: 

• Create an action plan that includes several small steps you can take on gradually. 

• Be your own advocate. Ask questions and don’t be afraid to question your treatment plan. 

• Find a quarterback in a doctor, someone who can help you navigate PD. 

• Determine what matters most to you and those you care about. Use this as a guide for your care plan so that you can achieve your goals and pursue your interests. 

• Add lots of exercise and mental stimulation into your life to keep your brain and body working. Don’t crawl into a fox hole and never get out. 

I would not have been able to fight this disease for so long if it were not for the support of my late wife, Adrienne, my family and my doctor. For more than 20 years, I drove 100 miles to see Dr. Lucien Côté, at Columbia University Irving Medical Center, a Parkinson’s Foundation Center of Excellence. He was an incredible man and doctor. He spent so much time with each of his patients, asking them questions and taking meticulous notes and forming treatment plans that were tailored to each patient. I am forever grateful to him, and I miss his kindness, comfort and wisdom. 

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I am also grateful for organizations like the Parkinson’s Foundation. Parkinson’s is not episodic, but I’ve found the medical world is set up to treat things in snapshots. That is not how Parkinson’s works, so people are often stuck looking for resources and support themselves. The Parkinson’s Foundation is wonderful because it provides education and helps people navigate the disease to live well. As proof of my gratitude for their educational work, I have made a substantial planned gift to the Parkinson’s Foundation. 

I firmly believe every person should have a life, even if they are fighting a disease like PD. I’m very protective of “me” and I don’t let the disease control me. I prioritize exercise and singing in my church choir. I’ve traveled and spent many years riding my motorcycle around the country with my wife. Today I ride a tadpole-configured, fat boy recumbent trike. I have never run from PD. I embrace it and the surprises it brings to my life. I hope these tips help others do the same. 

Make a lasting impact with a planned gift to the Parkinson’s Foundation. Learn more at Parkinson.org/PlannedGiving.