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

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by Dr. C |

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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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The Loss of Identity and the Quest for a New Self

“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.

Comments

James Waggoner avatar

James Waggoner

I can identify so closely with your mindset and, experience. Accepting idle time in a mind that was trained to be forever driven and productive has been a challenge. Your perspective has helped. Thanks

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Jean Mellano avatar

Jean Mellano

Wow Dr. C, i totally relate to this post. Thanks for articulating how you feel. I feel the same

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Stephen swift avatar

Stephen swift

Just like I feel. Very well expressed.. It’s great to take 30 mins to get to where an object is only to find someone moved it

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Dr. C avatar

Dr. C

Hi Stephen ~ It's taken me more than 150 columns to describe a life with Parkinson's that you do so succinctly, with a touch of humor. Thanks for checking in to the columns.
Dr. C.

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Bob Davidson avatar

Bob Davidson

A perfect description of Parkinson's. On Feb 20 it will be 3 years since my diagnosis and sometimes I struggle to eloquently describe my new life. This article will help. Thanks

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sandra wilkinson avatar

sandra wilkinson

Understanding and stillness - aren't they the truths. You speak such sense and I love your book.

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kishore belani avatar

kishore belani

Very impressive observation and well described. I think people with PD can only understand the full effect of the disease on the mind and body.

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Richard Odessey avatar

Richard Odessey

Feb 2022
I've had PD for 4 yrs and have had to readjust my expectations of what I could do and couldn't do. However PD has given me time to pause and reassess the deep questions of who I am and what is my purpose. My sister sent me a book on meditation and mindfulness (John Cabot Zinn, also see Jay Shetty) which I read from cover to cover. And then I began practicing and meditation. Since I had no other appointments on my calendar save for the occasional Dr visits I could give this activity my full attention. At first nothing happened. However as I began to understand the technique (it took awhile) I noticed that I started thinking more abort my purpose and role as a member of my family. My shift has had several remarkable effects. I began to appreciate how blessed I've been. and I appreciated what a wonderful wife I had to support me. And the support and love I've govern and received from my family.
As a result I no longer feel useless or less than I used to be. My advice I'd give you from my experiences is to stop dwelling on oneself and what was lost or feeling sorry for your self. Instead use your time and talents to supporting other people you love and all the blessings you have been given. and in fact I am now happier and at peace now than I was even before PD.
and what I didn't expect is some of my PD symptoms have diminished. My cardiologist was surprised to find that my heart murmur had disappeared.
I have experienced these benefits with relatively little mediation and practice. However I do practice gratefulness every chance I get --I highly recommend it.

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Mike avatar

Mike

Dr.C,
Is it possible that my current speed is my ‘new best’ speed. That is fast enough for my retired 65 year old life. In retirement I have had to accept being less busy. I exercise lots that takes up a bunch of this retired life. I am just grateful to God that my former work life has provided the financial cushion that allows me to focus on physically coping with my new found condition. I am realizing that God has given me this new challenge as a blessing. Mike

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Mike avatar

Mike

Richard,
I have found that Parkinson gives my life more definition. I was also able to catch it early (63) and dedicate my life
to copping with it. My wife has been a blessing . When I first retired there was a lack of a plan, now with the condition
I have something to battle “one day at a time”. I also have pals in person or on line who I can share my struggles
with. Thanks for your encouraging article. Blessings, Mike

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