What does it feel like to have Parkinson’s – Part 2 revisited

Here is the second of two blogs from several years ago about how if feels to have Parkinson’s. In addition, I just received a new short film by Sue Wylie, whose film, “Kinetics” premiered at the WPC in Kyoto in June, 2019. Sue tackles the same issues highlighted in this blogpost and the previous one, in a game show format that is funny and informative at the same time. What a Load of Balls. Enjoy!

April 11, 2018

In honor of James Parkinson’s birthday and #WorldParkinsonsDay today, I want to share the rest of the stories from my Parkie friends. My intent when I asked them to describe how it feels to have PD was to have them describe the physical manifestations of Parkinsons. However, many of them stressed the emotional and cognitive issues that are also part of the package of issues that come with the disease. These range from apathy, fatigue, social isolation, denial, lack of confidence and more. But the one thing that underlies every one of the stories is a feeling of hope and appreciation for the good things in their lives. Everyone is grateful for the things that they can still do, in spite of PD. That is what keeps us going.

Mike, Los Angeles

Knowing that I have PD makes me feel like there is a risk that my friends might define me by my disease and that could become a focal point of our relationship — something I do not want.

Click here to read the rest


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A Note To My Readers

I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.