Twitchy Woman: My Adventures with Parkinson's

Every day is a new adventure

A Parkinson’s friend

Since my latest fall and injury, I am finding it difficult to come to terms with that fact that I cannot continue to go through life thinking that I can do everything I did before. That the new normal is not the same as it was 10 years ago, or even as it was last week. I know that others feel the same way. For many People with Parkinson’s, there is an urge push ourselves to do as much as possible, and then pay for it for the next day or two when we can’t move. There is just no more gas in the tank.

Mr. Twitchy is trying to get me to slow down. That meant missing the Parkinson’s Policy Conference in Washington, DC. Fortunately there were over 300 people lobbying on behalf of the rest of us who could not attend. My goal is to make it to the California policy conference in Sacramento next month, which is only 1 day and a short flight from Los Angeles. However, if the fatigue and other symptoms don’t improve, I may have to skip that one, too.

So for now, I am taking things one day at a time. I need to take care of myself first so that I can do the things I really want to do. Most of all, I am grateful for the 17+ years that I have been able to do so much while living with Parkinson’s. After all, change is inevitable after so many years.

Telling your stories

When Michael Okun spoke to our group last month, he urged us to write our stories and share them with others. As you know our stories are constantly changing. You should make an effort to go back to your story every 6 months or so and update it. I know that for me, everything becomes a blur over time if I don’t add it to my story. Fortunately, for me, this blog often documents my story. I can look back at what I have written and compare it to what I wrote several months or even years ago. Something that I think is a new problem today may have actually occurred several years ago. I can look back at what I wrote and see if anything helped at that time.

Several of you have sent in your stories and I am going to start featuring them, one at a time, on this blog. I hope that you are inspired by today’s story to write your own. Please send your stories to me at twitchywoman18@gmail.com.

My Thoughts on Parkinson’s

By Linda

The old me wants to push the new me out.
My mind wants my body to move at 78 rpm, but it moves at 33 1/3.
You move slowly, but age quickly.
My bad days now outweigh the good ones.
I don’t want to become an invalid.
I’m stiff and feel hunched over.
My poor vision is getting worse, adding to my fear of falling.
My skeleton feels as if it has been rearranged. I’m not comfortable in my own body.
I’m losing my appetite for food and rarely feel hungry. When I do eat, I fill up fast.
I’m exhausted all the time and never feel rested.
When I take my medication I feel like I’m taking poison. The dyskinesia drives me crazy.
I love my boxing class. It’s the best thing in my life, and I even joined another one.
At doctors’ visits I see what my possible future might
look like, and it is not pretty.

When I tell people how long I have had PD, they often
say that I look good.
Parkinson’s disease is different in everyone.
I’m scared to get Deep Brain Stimulation.
Why is it so hard to cure Parkinson’s disease?
It is incredibly difficult living with an incurable,
progressive disease.
I’m afraid to try a radical treatment. Maybe a better one will come along later and I will no longer be eligible.
Why can’t I have stem cell therapy? Does it work?
Time management is key because it takes so long to get things done.
Simple things are now difficult, and I often repeat
tasks until they are done right.
Every morning when I wake up, for about 30 seconds I forget that I have Parkinson’s disease.
Recently I was sitting at a bar waiting for a food
order. A woman nearby was laughing hard, and I
realized how much I miss laughing like that.
I feel like I’ve lost my cool factor. I have a lot of
pain. If my vision were better, I might not feel so
out of sorts. I’m very slow now, and lately I feel the
changes more profoundly.

Still, I continue going to boxing. I can’t believe how
much I look forward to each Saturday.
I also started Tango for PD, although classes were
suspended during the coronavirus pandemic.
It is getting harder to stay optimistic, and sometimes
I feel very sad.

These thoughts were first written at the beginning of
the COVID-19 pandemic.
Diagnosis: April 1, 2009 — no joke.
I’m still here in 2026.
I’m a fighter, always was, always will be.

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