Twitchy Woman

Exercise. Do whatever you enjoy. I love to dance and listen to music and I think that counts too. My symptoms always seem better when I’m listening to music and dancing with my husband

Cathleen, Person with Parkinson’s

16 years ago, I received the tentative diagnosis of Parkinson’s Disease. At that time, the prevailing view was that People with Parkinson’s would have about 5 good years before things started to decline. I am thankful every day that my symptoms have not progressed much over the years and I have long outlived the predicted outcome. Because of this blog, I have met many others who are also living well much longer than expected. 16 years. later, I am starting to notice changes that signal there are more to come. Unfortunately, it seems that in the last year, I have heard about several longtime PD friends who have suddenly taken a turn for the worse. In light of that, a few months ago I started asking people who have been living well with PD for a long time, what they think are the reasons they are doing better than others. And conversely, why have some suddenly gone downhill after all this time?

Exercise and take good care of yourself physically and emotionally

Jeanne Hammond, Person with Parkinson’s

There has been some research on people living with PD for many years. Most notably, Laurie Mischley, ND, MPH, PhD, who has been following People with PD for many years to find out who the outliers are and what they are doing to live better and longer lives with PD.

I want to look at this from the person with Parkinson’s point of view, not a researcher’s point of view. What do you think has contributed to your longevity with PD? Why do you think you have succeeded where others have not? What advice can you give others who have been newly diagnosed? To find answers to these questions, I created a survey for people who were diagnosed over 10 years ago with Parkinson’s. Over 110 people have responded to so far. Thank you to all who have taken the time to respond to me. The survey is still available if you want to take a look at it. All answers are confidential. I may get in touch with some of you to dive deeper into some of the issues that face us.

For those diagnosed less than 10 years ago

I want to hear from you, too. I have created a slightly different survey for this group which you can find here. Is your experience different than ours? Was getting diagnosed any easier? Did your doctor encourage you to exercise more? Your responses will help us determine what progress has been made and where we need to improve our medical care. It will also help us develop some guidelines for talking with our doctors and becoming better advocates for ourselves when we see our doctors.

What’s next?

I want to hear from more of you in the next few months. I think that there are a lot of different reasons why some of us do better than others. There is no one answer to this. Each of you has a story to tell about your journey with Parkinson’s, a story that is unique to you and others can learn from. We need to speak up and be heard so that our doctors and researchers can provide better personalized care for each of us.

Sneak preview

Get involved in an exercise program and stay with it. I think exercise slows the rate of progression of PD. Find something that is fun and challenging to do.

Sally Swope, Person with Parkinson’s

Want to know what is the most important thing you can do to live better with Parkinson’s? The survey says……….Exercise, Exercise, Exercise! Nearly 50% of those who have responded so far have said that Exercise is the most important thing that you can do to live well with Parkinson’s for many years. Also mentioned often: “Get up and get moving !” In other words, don’t just sit at home having a pity party. Staying active is a key component to living better with PD. More insights into what works for us to come in a few weeks.

Some inspiration from ‘Jeopardy!’

‘Jeopardy!’ contestant Harvey Silikovitz, who has Parkinson’s, inspires fans with ‘longtime dream’ to be on the show. He shared on the Today Show how a missed voicemail from a “Jeopardy!” producer in 2019 would delay his appearance on the show by more than five years. Watch his interview here: ‘Jeopardy!’ champ with Parkinson’s shares touching story

Have a great week!