The Self Is Dead: Struggling With Loss of Identity in Parkinson’s
Parkinson’s disease (PD) can wreak havoc on a person’s sense of self. It has changed many aspects of my self-concept. Who is this “new” me? What happened to that fellow I knew for so many years?
Since I began writing about Parkinson’s, I have been plagued with this overriding sense that I can’t get in touch with the me I knew so well in the past. I’ve been looking for years, and my old self can’t be found. Not only that, but I can’t even find the looking glass anymore.
So I stopped searching and started investigating. Why was my old self-concept now dead to me?
In my book “Possibilities with Parkinson’s: A Fresh Look,” I describe the death of the self and the formation of a new identity. My focus at the time of writing was on the disease process stealing my ability to keep working in my chosen profession. It wasn’t just one career; it was three.
My career as a geologist required intense physical ability for sustained work outside — walking for hours and not falling on the rocks. Being a therapist required constant emotional control. Parkinson’s gave me unanticipated emotional outbursts. This also influenced the decision to leave my third profession as a college professor. All this has led to a loss of identity.
Retraining myself as “Dr. C,” a Parkinson’s News Today columnist, has given me a new identity, but not an answer to why the old self-concept continues to evade me. The me that I was so familiar with is gone, and I’m left uncomfortable in my own skin. It’s very unsettling.
A breakthrough happened when I realized that the brain process involved in constructing one’s sense of self is malfunctioning with Parkinson’s. The American Parkinson Disease Association (APDA) agrees:
“We are not really used to talking about Parkinson’s as an agent of personality change because we focus on the disease as a movement disorder … But both [dementia and executive dysfunction] manifest as a fundamental change in who the person is … However, there is no question that the brain is changing because of PD. Because a substantial part of our personality relies on our brain function, it is not a stretch of logic to ask if a changing brain produces a changing personality.”
We communicate, move in and out of relationships using our body, and this dance helps to define our self. That all changes with Parkinson’s.
The APDA also suggests that the change in the known self can cause internal and external conflict. Families often expect the Parkinson’s patient to be the same as they once were, recognizing only the physical signs. But the Parkinson’s family member is not the same person who existed at an earlier time in life. I can no more return to an earlier personality state than I can change my poor muscle coordination.
For example, now I refuse to go shopping on the weekends at the food store, or really any store where customers congregate. It is taxing, draining my well of resources and increasing the risk of an average day turning into a bad day. It takes all my mental energy to navigate a crowded store while looking for the aisle that contains whatever is on the shopping list.
I can’t perform multiple motor tasks in a high-stimulation environment. For example, while in a crowded store, I’m simultaneously reading the signs above the aisle that could direct my search, avoiding collisions with oncoming shoppers, and trying to read the labels. This causes my anxiety and frustration levels to escalate.
Moving through 3D space is a struggle. I mentioned my shopping aversion to a fellow Parkinson’s patient, and she said, “You’re preaching to the choir.” That wasn’t a surprise to me. The revelation comes from considering the long-term effects of this malfunction in movement. Or as Mrs. Dr. C puts it, “traveling through the space-time continuum without the thrusters firing in sequence.”
I’ve spent at least seven years walking around, bouncing off walls, and dragging and catching my feet on even surfaces. It’s difficult to accurately “aim” my body movements. This 3D movement blindness is a permanent condition now, with me every day. With it comes a change of the self, very different from the one who moved easily and experienced the world empathically.
Self is now Parkinson’s, and I am cautiously, mindfully, moving within that world. The old self is dead. Long live the new self.
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.
I love reading Dr C's articles. This one really hit the spot. Truly, we need to engage in conversations like this, to combat the continued stigma we face...no, I'm not letting PD get to me - yet...but I've had several PWP to go down that road, and never return.
Thank you for sharing your thoughts. I have enjoyed your articles and appreciate the information and
support they have given me. Good luck to all of us.
Dr. C, this article reallly hit home for me. I used to be an athlete; cyclist, dancer, racewalker. I am told to do things that give me joy, kind of difficult when PD symptoms steals those things from us. I thought maybe drawing, but my fine moror skills are shot,. Perhaps writing; however, my handwriting is illegible and I dont type too well anymore. As I was writing this comment, I hit the wrong key and lost everything I had typed. Yes, there are voice to text software programs, but I am not up to going through the aggravation of installing, plus my speech is starting to slur. my anxiety keeps me away from public places as it becomes overwhelming to go out and do the simplest things i used to take for granted in the past. But, I will still keep on searching for the new self
The way I see it, parts of us have to step back when we have a diagnosis such as PD but I don't see the self as being dead. The self that was identified with roles, that had motivation to achieve, or perhaps create in order to get the dopamine reward are now used up. Maybe these parts will become distant memories, maybe they will be able to return which I'd like to believe. Meanwhile, other parts have to come to the forefront: self-caring, reinvention, stillness and contemplative parts to create a new self.
Your titles always draw me in and your words resonate with me far better than the most of the "helpful" information directed to us YOPDs. Thank you.
IN 1980 I EXPERIENCED MENTAL ILLNESS WHICH I WAS NOT AWARE OF. I KNEW SOMETHING WAS DIFFERENT BUT NOT WHAT. I WENT TO A PSYCHIATRIST 5 OR 6 YEARS LATER TO FIND OUT I HAVE SCHIZOAFFECTIVE DISORDER FOR LIFE. SO I HAVE NOT BEEN MY ORIGINAL SELF SINCE I WAS 30. EVERYONE JUST THOUGHT I HAD BECOME WILD AND BAD. NOBODY KNEW I SHOULD BE GETTING MEDICATION. OH WELL, 4 TO 5 YEARS AGO MY FAMILY DOCTOR DIAGNOSED ME WITH PARKINSON'S DISEASE. I DON'T KNOW IF THIS IS UNUSUAL. BUT MEDICATIONS FOR BOTH ARE COMPATIBLE AND ANTI PSYCHOTIC MEDS HELP WITH PD AS WELL. iS THIS RELATED, ONE DISEASE WITH THE OTHER.?
I was a dancer, teacher and choreographer for 40 years before being diagnosed with PD in 2014.
My whole persona as a dancer forever changed and I am sad and devastated.
I'm a dancer who can't even walk properly!!!
I've reached the conclusion that my old self no longer is in the same form. I was an Optometrist for 40+yrs. Now that my career has ended, and disability allowed a smooth transition into retirement, I've been able to pursue any and all areas of interest. In my case, art has become a fulltime occupation, its' collection and creation. I don't look back. I've taken the best of my past and fused it with the present. How often does anyone have the opportunity to recreate their narrative.
Hi Paul ~ Your comment about creativity and art is a strong self-help strategy in managing Parkinson's. We did a column last year (http://parkinsonsnewstoday.com/2021/07/23/lets-open-door-creativity/ ) that may interest you. A friend's husband was a former chemist and after PD diagnosis developed a previously unknown but wonderful talent in painting. Hope you enjoy that column.
I am experiencing all the things you mentioning at times. What is not always understood by other people is you have to think about the movement to do it right. It is exhausting and can be frightening. I was walking home from work in the winter and started freezing in motion not in temperature.. I just wanted to lay down in the snow. You say to yourself "Keep going with big steps". So yes the old self just did it and now the new self is spending a lot of time & energy on getting through basic daily routines. Hopefully with a smile and a new way.
Hi all ~ I really like how "Paul" identified in such a positive manner his approach. It can be taking "the best of the past" and "fusing it with the present". Re-creating our new narrative can be a positive experience. It's just hard sometimes to leave behind the old narrative and self image. It's a passage of grief and loss. It's taking a journey to discover what could be the next part of our lives. Courage and persistence are companions for the journey.
Thanks for reading the columns
richard k everett
Dr. C. Many thanks to you and those who have joined this conversation, it helps and also brings tears to know I am not alone with this. I was a logger and timber faller in the great north woods of northern ca., and I thought of myself as invincible, a timber beast. Needless to say, I have learned a lot, and I am a different person in many ways, good and bad. I try to embrace where I am at today and be happy for what I can still manage, but deal with the fear of where this is going. I feel for my loved ones, seeing me go through this and most of all my wife and caregiver who is consistently by my side through all of this. I thought logging was the biggest challenge a man could ever face. This has been humbling to say the least. Those big steps are a challenge. My regards to all of you. Rick of the Woods
For me the surprising illumination was that this chronic illness, Parkinson's, by nature of its malfunctioning mind/body system was causing my neural patterns to be rewired by the faulty input from this system. That association of faulty wiring to faulty re-mapping is the illumination I'm trying to convey in this column.
Jean, as you said.... typing, writing, athletics ..... and then the voice changes.
A large research company is working on a free voice-typing program than can learn our voice [with training by us] and handle the slurring etc. They named the beta PROJECT based on its ability to RELATE to us [PwPD and others].
Several volunteers like myself from the PF volunteered to help with early testing last year. That is full disclosure.
Hello everyone ~ It is a challenge to relearn how to move. Think of yourself as being on a major highway, that's the old way of thinking -- easy to drive, easy to travel. The new way of thinking is like a foot path through the brambles. A shout out to Rick of the Woods who probably encountered a lot of brambles in the forest. But the more you travel the new path, the easier it gets. And there were times when I wanted to lay down in the snow -- but Mrs. Dr. C. wouldn't let me.