My father’s Parkinson’s symptoms worsened after his retirement
A decline in activity and a loss of purpose took a toll on his health
March 3 marked one year since my father passed away. As I reflect on his journey, I realize how much his retirement contributed to the worsening of his Parkinson’s symptoms. In hindsight, I see that while retirement should have been a time of relaxation, it played an unexpected and significant role in his decline.
Before retiring, my father was always active. His career as a teacher, combined with managing multiple businesses, kept him constantly engaged both physically and mentally. The first signs of Parkinson’s came gradually — subtle hand tremors and occasional stiffness — but he’d brush them off, attributing them to age. But as the years passed, these minor symptoms grew more pronounced, and his retirement seemed to mark a shift in his health that we didn’t fully understand at the time.
Retirement was meant to bring rest, but it soon became clear that without the structure and rhythm of his professional life, my father’s Parkinson’s symptoms were intensifying. His previously active lifestyle was replaced with long hours of inactivity at home. He began to move slower, his rigidity worsened, and his cognitive abilities declined more rapidly. My father’s disease seemed to thrive in the absence of stimulation.
The loss of routine hit him hardest. As a teacher, he’d been constantly on his feet, moving from class to class, engaging with students and colleagues. His businesses, though demanding, provided him with a steady rhythm of planning, negotiating, and managing. But in retirement, these daily engagements, both physical and mental, came to an abrupt halt. Without these outlets, his condition began to deteriorate faster than we could’ve anticipated.
Perhaps the hardest shift for us to witness was how the loss of purpose affected his spirit. Parkinson’s disease is not only a physical ailment; it also affects a person’s sense of self. My father had always been a proud, highly respected figure in our community, but as his Parkinson’s progressed and his role as a provider, teacher, and mentor diminished, he began to feel irrelevant.
This loss of identity, combined with the physical effects of the disease, made it harder for him to maintain his motivation to move. The less he moved, the stiffer he became, and the less he engaged with others, the more withdrawn he became.
For us, as his family, this shift was a constant reminder of how Parkinson’s affects the mind and spirit. We didn’t fully grasp how vital maintaining a routine and a sense of purpose would be for my father. We were still learning about Parkinson’s, and we didn’t realize how much the disease thrived in an environment of inactivity.
Now, in hindsight, I understand that caregiving goes beyond physical care; activities like exercise, which we hadn’t prioritized, could’ve made a significant difference. Had we understood this sooner, we might’ve done more to keep him mentally and physically active, perhaps by helping him find new passions or goals.
The absence of structure and routine had a profound effect on his condition, and I now see that maintaining a sense of purpose is key to managing Parkinson’s disease. Although our family and close relatives made good efforts to help him, perhaps we could’ve done more to slow the progression if we’d realized this development earlier.
What I learned from my father’s experience is that navigating Parkinson’s involves more than just managing physical symptoms. It’s about managing the loss of a person’s identity and purpose. When my father retired, he lost his job, but he also lost a vital part of himself. His professional life had been a huge part of who he was, and without it, he became vulnerable to the deeper effects of Parkinson’s. We did our best to support him, but we couldn’t replace the sense of fulfillment he once found in his work.
For those navigating Parkinson’s disease, especially in its later stages, I urge you to consider the impact of losing routine and purpose. If you can, try to maintain activities that engage both the body and the mind. Whether it’s continuing to work, exercising, finding new hobbies, or staying socially connected, maintaining a rhythm is crucial.
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.
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cesar gonzalez
yes it is true ,is better keep a eye on exercicses
Francisco Manuel Ginçalves
Boa noite.
Concordo. Realmente comigo estava a acontecer o mesmo, após a reforma.
Mas consegui não parar, estar o menos tempo possivel no sofá.
Como vivia sózinho, julgo que ajudou pois tinha de fazer tudo, lavar a roupa, limpar a casa, fazer o almoço e jantar etc etc. Quando algum amigo me diz que se vai reformar, digo, pensa bem no que vais fazer após a reforma. Hoje com 11 anos de Parkinsson, continuo como no dia em que fui diagnosticado. Apenas uma grande diferença, fui submetido a cirurgia DBS. A cirurgia não cura, vou morrer com parkinsson , mas não de parkinsson. Quem reune as condições para a cirurgia, o meu conselho é façam. Não podemos parar. A ciencia está a evoluir rapidamente.Brevemente poderá haver uma luz ao fundo do túnel. Força.
Wanda Kim
What a profoundly moving and insightful post. With my own Parkinson’s, I felt the diminishment of self very strongly. My physical limitations came with self-imposed limits that were attempts to minimize falls, exhaustion and social embarrassment. As the author also observed , the less I moved, the greater my limitations became.
What changed for me was the realization that my limitations were physical but they did not have to be mental or spiritual unless I allowed them to be. My spirit is strong. My will is strong. I decided to take my experience and use it to further research and advocacy for the end of Parkinson’s. I have retired from my career in finance and I have found a deeper purpose.
I am living with my Parkinson’s. I would not have chosen to have this condition, but I believe my life is more rewarding on many levels because of it.
Barbara
This reads like it was written about me, except my retirement only began 1 month ago and I know how to prevent the above outcome.
I'd like to curl up and just "veg out". I am seriously missing my job, my customers and my co-workers. I no longer have access to e-mail, slack. etc. I no longer drive, so that outlet is gone.
I know I must register for daily excercise classes here at the senior living apartment center where I live.I also need to get involved with some of the classes and activities that are offered here,
At 80 to reconfigure my life is difficult.
I'm a 'fighter and a survivor" and I will move myself in the necessarry direction, but i encourage anyone who is in this position or has a relative that is newly diagnosed, to get moving in a new direction as soon as possible. (Rock Steady is aa good place to start!
Alan MacKenzie
Chukwuemeka, your deep understanding of what your father went through before passing away speaks deeply to my soul, as I'm sure it will for millions of others in this situation. Your final statement, "Whether it’s continuing to work, exercising, finding new hobbies, or staying socially connected, maintaining a rhythm is crucial" seems so poignant to me at this juncture of my disease. I retired after 18 years as a therapist and 2+ years with PD. I wish I had someone like you, with your wisdom, to guide me through the rough waters of early Parkinson's. I'm striving to stay busy through routine exercise and adopting new hobbies, reading, watching films, etc. But loss of motivation is, as they say, "a bitch" (whoever they are).
Thanks for your insightful article. I look forward to reading many more of your addresses in future. Take good care.
David Dunn
As someone with early Parkinson's who retired last year from a very busy work and social life, I completely agree with your assessment of what contributed to your father's deterioration. I am very sorry for your loss. I never thought about how important the discipline of having a work routine and an intertwined social network was so essential for my mental and physical health. I remember how fast that dull surprise hit me. I thought I could step back, and it would be 'better' for my progressing symptoms. It wasn't. The decline was rapid and sudden; like having a full schedule one day and an empty calendar the next. If I hadn't self-motivated out of that morass, am sure I would be frozen in a recliner every day, while my wife and children tried to figure out how to 'treat' me.
Fortunately for me, I figured it out. Stay incredibly busy. Fill it up. So.... I serve on a non-profit board, became a CASA (court appointed special adviser representing children in foster care in the courts), a standardized patient at the local megaplex hospital system (hey - they even pay me) and stay connected to two poker groups, and a Romeo group (retired old men eating out - one rule - no soup). I also do selective small business consulting. Physically, I do Rock Steady boxing and despite my family's exasperation, at 70 with stage II Parkinson's taking C/L 5X/day, I still very actively ride a motorcycle - last year I rode from Pennsylvania to Alaska and back! And I am fortunate that i/we can still travel, so we go to far off destinations once a year. Do I shake? Yup, so what. Nevertheless, rather than needing to 'treat' me, my family must scan my calendar to find time to see me. And that is just the way I like it. I hope this motivates you to do the same....Again, thank you Chukwuemeka for sharing your family's experience with Parkinson's.
stanley horwitz
I was diagnosed with Parkinson's five years ago. I also have severe osteoarthritis in both knees. I have terrible pain in both knees and down both legs from the knees to the ankles. I have had cortizone shots and hydroluric shots. Nothing works. Does anyone have advice. I take sinemet. I wonder if I need to add another medication to help ease stiffness?
Chukwuemeka Uchebuakor
Hello Mr. Stanley, you may require a medical practitioner to examine your current state and make recommendations. However, remaining positive is always a positive approach and you don't pay for that - generate it. I wish you all the best.
Chukwuemeka
Noel
Hi Mr. Uchabuakor, Having had PD for the last 9 years, I can relate to your father’s journey. May I ask please - how old was he when he retired? Thanks.
Chukwuemeka Uchebuakor
Hello Mr. Noel,
Having managed PD for 9 years, I believe you may have found a management approach that works for you. Keep staying strong.
Meanwhile my father retired at 57.
ERNIE SADOSKY
unfortunately so true.....take it from ....me
Chukwuemeka Uchebuakor
Yes, it's true! Thank you for reading the column.
Esther Tolan
Dear Chukuemeka,
I found your article interesting. My husband has Parkinsons. I encouraged him to join a physical therapy class that is spcifically for those with Parkinsons. He goes twice a week. He did go to a Rock steady class but what he was doing cause pain so we stopped. Unfortunately he left his professions and has not found a way to fill that gap. He needs to join an organization but is not interest in doing so. Most of his friends have passed or moved to other locations. I do not know how to motivate him. I know he has to be doing more . What are your suggestions?
Esther
Es
Chukwuemeka Uchebuakor
Dear Esther,
Thank you for sharing your experience, and I’m so glad you found my article interesting. It’s clear that you care deeply for your husband, and I truly admire your efforts to support him during this challenging time.
It seems that one common experience for many people who leave their profession or retire, is the loss of a sense of purpose, especially if there is an underlying health issue. As you mentioned, many friends may have moved away or passed, which can leave him feeling more isolated.
Since Parkinson’s is such a personal condition that requires an individualized approach, I believe that the key to finding the right path for him lies in answering two essential questions: 1) Who does he enjoy spending time with? 2) What does he enjoy doing? Once you understand these, you can better tailor an activity or exercise plan that fits his interests and needs. Whether it’s walking, gardening, cycling, or any other activity, if it aligns with something he truly enjoys, it will be easier for him to commit to it without feeling pressured.
One important point is that people are more likely to commit to a process when they have ownership of it. Carefully studying his likes, dislikes, and habits, then gently prompting him for suggestions on what he would like to try, could be helpful. When he feels involved in creating a plan, he’s more likely to follow through with it. Including loved ones in the process, like exercising together, can also provide valuable motivation and foster social connection.
I hope these suggestions resonate, but please remember that everyone’s Parkinson’s journey is unique. It may take some time to find what works best for him, but with patience and careful attention, I believe he will eventually discover activities that reignite his sense of purpose.
Wishing you both all the best.
Chukwuemeka
Dennis
Dear Chukwuemeka, I am very sorry to hear of your loss.
I think that a sense of purpose is important to everyone who retires irrespective of Parkinson’s. In my own case, I retired at age 57 from a senior business role and my wife suggested psychotherapy as a new career. I spent the next five years in college and have been practicing ever since.
I was diagnosed with Parkinson’s seven years ago. I have no doubt that my work helps me to maintain a positive outlook as it gives that sense of purpose. What constitutes a sense of purpose is different for us all. It could be something as simple as gardening or DIY.
I agree that not enough attention is given to the importance of exercise. I have been to three consultant neurologists, and while they applaud, my regime, the importance of exercise was something I discovered for myself. Some would say that for Parkinson’s, exercise should be prescribed in the same way as medication. There are four key elements that assist in minimizing the affects of Parkinson’s. They are exercise, a sense of meaning , social interaction and diet.
It may have helped your dad if his regime was different but that is something that you were unaware of. Parkinson’s is different for everyone so we don’t really know what the impact would have been It seems to me that your dad was very lucky to have such a loving son who cared so much about him. I wish you all the best.
Chukwuemeka Uchebuakor
Hello Mr. Dennis,
I am so happy to read your comment and to learn that you have taken such positive steps to combat Parkinson’s disease. It’s truly inspiring to hear how you've found a fulfilling career path in psychotherapy, which provides you with that essential sense of purpose.
I completely agree with you that Parkinson’s is a very personal condition, and its management plan needs to be individualized, taking into account factors like age, interests, economic level, and location.
I also share the belief that exercise is a common and highly encouraged approach for every patient.