How I’m Doing With My New Parkinson’s Self

Many of us with Parkinson’s disease experience a shift from our former persona to our new self. Some readers have reported that they can no longer do what they once used to do.

Some lost attributes are physical — we can’t walk as far as we used to or participate in sports, for example. Mental processes also have changed — we think a little more slowly and become more easily distracted. The old self is nowhere to be found, and nothing I do can change that, despite desperate efforts.

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“Doing” has been a lifelong process for me that is tied to my self-identity. It was developed while cramming for exams during 13 years of college education.

This deep diving into total project immersion required not keeping track of the hours, as time became irrelevant. Eating, sleeping, and maintaining a semblance of a routine was thrown to the wind. Getting into a project — or better yet, getting it done — was the point. My sense of self was defined by the finished product and the process of doing.

Now, whether it’s gardening, cleaning our storage area, or researching a new book, there is always something that needs “doing.” The problem is I can’t do things the same way anymore. Yet I find that searching for something to do has become a way for me to avoid sitting with this horrible illness. I need to keep busy and avoid too much thinking, flailing, and grasping, which is a habitual path to overdoing and exhaustion.

Overdoing things, or the opposite, apathy, significantly affect homeostasis regulation. I can’t push myself to do things or lie around feeling sorry for my lost self because it shifts me out of balance. Being out of balance triggers the flicker effect, and the more I push, the louder the flicker becomes. When I’m out of balance, I bounce off the walls, both mentally and physically. It’s not pretty, and it’s darn hard to accept this as my new self.

So, the “new me” needs a different way of doing things that is slow and steady. But Parkinson’s throws up a roadblock of motor hesitancy.

When I slow down or rest, I have difficulty initiating muscle movements. I’ll tell myself to get out of the chair, but the Parkinson’s brain and body aren’t on speaking terms. My thoughts about moving are met with a lack of muscle initiation in my legs, torso, or arms. It’s a transitory state, but it’s also annoyingly consistent.

To address this, I use the “Hi and Goodbye” approach to not doing things. When that nagging voice urges me to push harder, I reply with, “Yes, I’m not ‘doing’ like I used to.” (That’s the “Hi” recognition of my situation.) Then I think, “It’s OK.” (That’s the “Goodbye.”) And I can push that feeling back. I open a space to practice the pause between, followed by mindful attention to the moment. And it’s all done with gratitude for what the moment has given me.

I’m a product of our culture’s addiction to the constant state of doing. Having a chronic illness changes all that. No longer are we able to just push through, meet every deadline or commitment, or complete projects when we think or wish we could.

Sometimes just getting up and showing up are challenging enough. There are days when I feel I don’t get anything done. A day spent taking care of medical issues and basic needs makes those activities feel worthless because I wasn’t “doing.” This new sick self isn’t what I signed up for, and I struggle to stay positive.

What helps me to be positive is knowing that I still have lucid productive moments, and that stillness is not the same as doing nothing. Incorporating a routine to capitalize on these lucid periods really helps. The routine is flexible yet reinforces that there are blocks of time when I can be productive.

Putting routine in place helps to reduce the negative consequences of living with chronic illness by giving me time to practice the things that provide me more lucid time each week, such as what I call “CHRONDI” and “TBM.”

Both the routine and the practices need to be implemented within the proper intent of mindful doing. I’m not pushing and I’m not flailing. This includes understanding and accepting stillness. These are the first glimpses of my new self, a work in progress.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.