What does it feel like to have Parkinsons? Part 2


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. Consequently I try to avoid thinking about it and just proceed with life as it comes along. Periodically I am reminded of my physical limitations and then it feels frustrating to have PD since my mind thinks I can do something but I am unable to accomplish it.

Marcy, Los Angeles

When I was first was diagnosed with Parkinson’s I was relieved. After all I had been told by five neurologists I was just a 50 year old women, who had to realize she was getting older, and was at that time of life! I was winding down my career of 17 years, and my last child had gone to college. They felt that was the reason for my anxiety, my shaking, my depression. The Doctors each gave me a prescription for Xanax. The sixth gave me Sinemet which changed my life,  I wasn’t  really worried  about Parkinson’s. I had always been an athlete so I felt I was invincible. As the years went by I had to start upping my medication because I lost my fine motor skills. Then my leg started doing figure eights. So a pill for that and then, a pill to control my constant nausea from the increasing pills, and several pills to combat my constant anxiety and depression. It affects us all so differently. So how does it feel to have Parkinson’s? Every is a new day.  I am grateful for the symptoms I don’t have.  Annoyed, very annoyed, every time I get a new one. I am happy with the smaller things in life, family, and a small group of friends. I am single so the PD certainly stopped my dating. Who wants to tell someone that you have PD, not very sexy! What I am trying to say is it changed my life immensely, but I am certainly more grateful for what I have on a daily basis.

Clara, Pasadena, CA

It’s an on again off again love affair. I absolutely love it when it’s off and get frustrated sometimes when it’s on. What’s the affair? Parkinson’s. The off for me is when I wake up in the morning get out of bed and forget to take my medication. The slight tremor in my left hand or shaking in my right leg begins,  just to remind me that I do have Parkinson’s and I need to take care of it. The tremor is only part of the bigger picture. I’m finding Pd works away at your self-confidence  slowly but surely. As I’m doing things a little bit slower now, and others want things done faster and faster, I’ve noticed the erosion of my confidence in being able to do things well and fast. Argh. Basically I ignore the tremors and focus on what I can do. It’s now a part of me. There are moments when I don’t tremor and think hey what’s missing?!


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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.