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Did you choose to retire after receiving your Parkinson’s diagnosis?
My dad’s introduction to Parkinson’s took place in his 50s. At the time, he worked as a realtor in the community. At first, the diagnosis didn’t change the structure of his life. But as it progressed, he began scaling back at work and taking fewer clients.
Almost ten years later, he’s almost entirely retired. He points to the stress that working puts on his body and how it impacts his symptoms as reasons for his retirement.
Did you choose to retire after receiving your Parkinson’s diagnosis? If so, why? If not, why not?
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40 Replies
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The day we got the diagnosis from my Neuro, the first question out of my husband’s mouth was “can she retire with this?” That was at 5pm on a Friday. On Monday morning I called my boss and retired. We both cried over the phone — he was making way too much money off of me — and that was the last tears I’ve shed over this insanity.
It was definitely the right thing to do, in hindsight — I qualified for a lucrative disability program. Had I hung on, working with this diagnosis hanging over me, it might not have gone as well. It gave me the means to address my situation head-on. That was almost five years ago and I would not change a thing.
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Anita, I’m glad that you made the right choice to support yourself. I’d imagine that facing retirement can be a scary thing. I think that my dad is happy to have retired as well. But some people like to stay busy!
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Shortly after my diagnosis at age 57 I made a plan to retire by 60. This was driven by a number of factors. First, at that time, I was suffering minimal effects, so there was no rush. However, my father was diagnosed at the same age as me, and I observed that by delaying his retirement to age 63 he missed a period of decent health that would have been better spent retired, and I didn’t want to repeat that history. As I reached 59 I was finding myself struggling to handle the work-related stress that used to energize me, so I knew it was time. I met with my manager and we recruited a successor to transfer knowledge on my last project. It worked out for everyone.
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Hey Jeff — your summary of what happened for you as you chose to retire made a lot of sense to me. Wish I could say the same about mine. Hey, did you ever get strange looks from peeps that don’t understand some of the debilitating effects of PD? When I told my cohorts in psychology I was planning to retire due to what I was experiencing (mostly non-motor symptoms) they immediately tried talking me out of it! In nearly every instance, they used poor financials as a main reasoning for continued employment. Even my GP supported the notion. I can understand why they might place import onto finances, as I understood their argument.
Now that I have elected to fully retire (I left my practice in late Nov 2022) I feel much more certain of my decision, even though we’re living off the smell of an oily rag. It has placed much more pressure on my spouse, which bothers me more than anything else. So far, we’ve managed to survive, but recent massive inflation and our post-COVID economy has prompted her to work six days a week just to cover our bills. I feel whakama (ashamed) asking my spouse to do this.
Was financial benefits everyone’s deciding factor for retirement?
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Alan, I think the financial piece of it was one of the main pressures my dad experienced. My mom was a stay at home mom for most of our lives, so she has only been in the workforce for about 10 years. And expecting her to be the breadwinner after all of that has put a bit of strain on my parent’s relationship. But I also think that my dad (who has Parkinson’s) would struggle to work full time while navigating the disease.
It’s all pretty messy, isn’t it?
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Dear Mary Beth
Your parents faced the very same situation as my wife and I currently face. With three dependent boys to raise and my wife choosing to be a stay-at-home mum (in order to home school) my wife has had to take up the working mantle and I found myself less & less able to conduct my practice after the second year — I’ve explained why below.
PD is a thief that steals or independence, aye?
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Hey Mary Beth. I couldn’t agree more. My spouse was a stay at home mom for our three boys for over 22 years. Suddenly we’re faced with this huge change called PD. She is a real trooper and stepped up to the plate when this all transpired. But it hasn’t been easy for either parent to be honest.
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Hey all:
I was diagnosed at age 65 with no plans of retiring as I had three dependent sons on the spectrum. I’m now 67 and am fully retired. I was a practicing therapist and found it more & more difficult to manage not only my tremors with meds, but some of the less pleasant side effects of PD. This reality made it more and more difficult for me to continue working. Memory issues, poor sleep and severe back pain made (and continue to make) life unbearable at times.
I currently receive a retirement superannuation from the Govt. It barely covers our rent. My wife is trapped working after 22 years at home with the kids. These changes have left me feeling bereft and afraid I made a poor decision retiring. Sleep disorder (RBD) plagues me along with my established sleep apnea issues (I’ve had this for 18 years). I’m experiencing more anxiety, depression and fear even though I take my A/D’s regularly. Music (playing and listening) is a lifeline for me in this sea of despair.
I struggle to keep active — but still am trying to keep it up, as I know exercise is absolutely crucial. I’ve decided to try Genealogy to keep my mind active. I feel my life is busier now than when I was semi-retired at 65!
Oh well, I’ll keep plugging along. It has to get better ’cause it can’t possibly feel any worse…
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Mary Beth, just allow me to say you are an incredible key master! Not only do you ask very salient “pump primers” but your timing seems impeccable (for my journey, at least)! Keep up the great involvement with PD Forums, OK? And tell your dad for me that he is a very lucky bloke to have such a caring and perceptive daughter. He’s a very lucky man…
Your fan, Alan
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Alan, you’re very kind. Thank you for your words of encouragement. And for YOUR participation. I think that Parkinson’s seems a little bit less frightening when we can talk about it. So, I’m really grateful for people like you in this community. Thank you!!
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First of all, I agree with Alan M.
I was a practicing dentist for 41 years. In my last year or two, I started having strange symptoms that I didn’t correlate with Parkinson’s. I was ready to retire, and the timing was very opportune – I sold my practice about a year before the pandemic. After more tests and questions to my physicians, I was finally given the Parkinson’s diagnosis. While I was not pleased to hear this, it was in some way a relief to finally have an answer that explained all the symptoms I was experiencing.
So in a sense Parkinson’s was a retirement “gift,” but not the cause of my retirement. However that was 2-1/2 years ago, and I would have been forced to retire by now with my current symptoms.-
It is interesting how having a label can provide relief (even if it’s not the label we want). How do you spend your time, now that you’re not running a practice?
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I was stamped with Young Onset of PD when I was 53. By that age I had no idea or even basic awareness about Parkinson’s Disease. We had not seen or heard about anyone having PD amongst my relatives, friends and other acquaintances, not even in past 3-4 generations. In fact PD was not so widely spread in India untill recently. So nobody in my family and friends were shocked, feeled it a devastating earthquake, a doom’s day, end of the world, etc.
However, the serious voice tone and expression of concern with which my neurologist pronounced “This is known as Parkinson’s Disease affecting movements. it is progressive and incurable unfortunately. We in the medical science don’t know yet lot about it. ” signalled me that it should not be taken lightly. For few minutes I tried to visualise remaining 6-7 years of my stressful job as manager in the highly demanding, always-on-fire IT industry and asked ” Dr Will I be able to continue my this type of job ? ” His response was very comforting. ” Yes, by all means. You will have to eat few medicines lifelong, do some exercises I prescribe. It usually takes 7-8 years until it starts getting that bsd. ”
Luckily my wife or anyone from my family did not come with me in this meeting. I didn’t tell them the whole story and kept worry part confidential for few years. My symptoms were very mild and responded nicely to the medicines and exercise. For 4 years nobody except my family knew that I had PD as I could work and perform personal activities as if PD did not exist. I was quiet confident to complete my whole service term and retire at 60.
Around 57, however the mounting workload and the waning effect of medicines eventually started dictating my health. My symptoms started manifestting more obvious and noticable. The increased doses of medicines, exercise and yoga did not help much. I was frequently missing my goals and targets but could manage by damage control measures and unconditional support from my project teams.
Near close of 58, the situation in my workplace turned unfavorable. Many folks in my higher level managers and lower level teams moved on or were reshuffled. I was used to deal with such changes. But now my PD had progressed significantly. New symptoms like fatigue, loss of energy, confusion, forgetting, freezing episodes, stooped gaits started manifestting more obvious than before.
It was a hard decision to quit sacrificing 2 years of service but I had no choice.
Long story told short – Yes, Parkinson’s Disease compelled me to retire early.
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Ravindra, my dad chose to keep his diagnosis relatively secret for a few years as well. I think he wanted to maintain his normal lifestyle for as long as he could. Do you think that was the best choice for you as well?
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Ravindra, my dad chose to keep his diagnosis relatively secret for a few years as well. I think he wanted to maintain his normal lifestyle for as long as he could. Do you think that was the best choice for you as well?
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Hi Mary,
I didn’t hide the diagnosis of PD itself but maintained secret the hard times expected few years later as my PD advances. Because my Dr. assured that it will take few years for PD to start impact day-to-day movements and non-motor symptoms to manifest. Until then I will be able to do my job as a normal person. So I thought there’s no reason to scare my spouse and other family members right from day one. As time passes I would give them heads-up on upcoming conditions.
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Hi Mary Beth,
I’m a minister with YOPD and I’ve responded well to levodopa, though we are seeing progression. Most days, I would say I’m not ready (and I’m too young) to retire (I love where I’m at). Today, I don’t feel good. Ugh…
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I’m sorry you’re not feeling well, Troy. Hopefully the bad days don’t last too long. Do you take Levodopa to help manage the dips?
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Hi Mary Beth,
Yes- Levodopa, Mirapex and Lyrica. On a positive note- feel good today! Thanks!!!
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I enjoyed my job and never really thought about retirement. After the diagnosis I thought I could continue working. But executive function problems meant my problem-solving abilities where less that great. The biggest problem was having to leave my home in Wyoming and move to Connecticut. In many ways life is easier here but I still wish pretty constantly that I was in Wyoming.
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I’m afraid I retired before the diagnosis. I searched for a long time for information on what I was going through and got a number of different diagnoses but none really helped. The search went on for about 15 years with increasing symptoms. Finally, 5 years after retiring early, I was diagnosed with Parkinson’s.
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My first diagnosis was in 2009 age 39, but I refused to accept and denied I had PD.
I was working for a dutch company on a project in Mexico when I was diagnosed for second time in march 2019 aged 49. I voluntarily informed them of my situation and with weeks they forced me into mandatory two year medical leave on an 80% reduction in take home pay and mandatory monitoring and assessment by government health authority. at the end of two years I was declared permanently disabled and incapable of any form of work and this forced into early retirement due to permanently disabled and incapacitated at age 51, totally unprepared and mentally not ready. It was law and the ruling was with my home country Australia and this caused same situation so now after 5year of legal wrangling and no income I have been forced to apply for early pension payout from Australia because I can’t touch my 4 dutch pensions until I am 55&1 day so October 2024. So I didn’t choose to retire but rather was forced to retire and it has had a catastrophic affect on me. I am only recently becoming myself again.
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Ouch Andy — that’s a rough ride!
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In 2022, I turned 60 and was diagnosed with Parkinson’s. After retiring as a school principal in 2018, I started an encore career with a non-profit. I chose to continue working with modifications to my work schedule. My direct report supervisor is supportive. The mental stimulation helps keep my brain occupied so I am not thinking about having Parkinson’s. Before coming to work, I stretch to work on flexibility for 3o minutes and try most days to do 30-40 minutes of cardio either walking on a treadmill or an outdoor walk. This routine keeps my body limber for sitting in meetings or traveling for work. At lunchtime, I take a 15-minute walk most days to keep my body limber.
I am fortunate in Central Ohio that the Ohio Health Neurological Wellness Center offers evening fitness classes to work on strength, balance, flexibility, and cardio. The evening classes make working and a commitment to fitness possible.
I am taking life three months at a time. If it becomes a challenge to work and commit to physical fitness essential to delaying the progression then I will consider retiring for a second time. I might have Parkinson’s but I choose to push so Parkinson’s doesn’t have me.
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I was diagnosed with Parkinson’s in 2018. I was neonatal nurse and had the responsibility of 3-4 infants. As I progressed with my symptoms, I decided to retire in July of 2020. I noticed that I wasn’t as dexterous as I once was, and the stress of the job exacerbated my symptoms. I wish I could of stayed on, but I had to do what was best for me.
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Hey Deborah — I totally understand “…the stress of the job exacerbated my symptoms” — I was same, especially my non-motor symptoms.
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I was a manufacturer’s representative for professional audio-visual equipment, and the pandemic made my job almost impossible. When I was diagnosed at the age of 69 later in 2020, that was it and I decided to retire. I have not looked back since.
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It’s complicated. The last year at work (11 years after diagnosis) I was both a valued and essential asset to one program I worked on and dead weight on two others I supported. When COVID came around it provided a good excuse to let me go and 2 to 1 in favor, I walked out the door with my box of Dilbert paraphernalia a free man. I was angry for a minute, then I told myself: Wait a minute. I worked 4 months past my announced retirement date (Like I said, it’s complicated). They gave me a good severance package and set me up to claim unemployment insurance. What is there to be angry about? Besides, it was time, it was really overdue. While I could perform very well on the one program because I had worked it and related programs for more than ten years, the other two were new to me with new methods and requirements. I no longer had the mental horsepower to take on new work, so it was time to go.
My only regret — that I did not leave on my own terms — but they did better for me under their terms than I could have on my terms. It’s complicated.
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My wife worked in a banking job for a number of years after her diagnosis. Eventually, she was no longer able to keep up with the demands of her bosses. She tried even working extra hours without compensation. She eventually filed for disability undergoing independent medical examination and went before a disability judge who promptly granted her disability status.
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I did not retire – though I pretty much set my own schedule (self-employed). I’m still working today though it has become hardeer what with motor symptoms progressing. I wass diagnosed 15 years ago
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I worked as a neonatal nurse. Loved my job. I worked for a total of 39 years,seeing the care of these fragile infants advance as technology advanced. The environment is fast paced and you had to keep up with it. I was trained place long term intravenous access in the smallest of infants. That’s when I discovered that something was not quite right with me. I noticed that the left side of my body has tremors. I couldn’t attribute it to being nervous because I was one of the nurses that the doctors requested. So speaking with my PCP, she referred me to my neurologist. So in January of 2018, I was diagnosed with Parkinson’s. I retired about 2 years after my diagnosis because I found it difficult to keep up with the pace and the stress of the job exacerbated my symptoms.
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I was diagnosed 5 years ago at age 69. I am the editor of a national magazine. Working is exercise for my mind. I also exercise my body 5 times a week. I believe that as long long as you can physically do your job, you should continue working. Thank God for spelling and grammar checkers!
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I had already planned to retire from my IT job at age 62 and had given my 5 year notice long before my PD diagnosis. I put up with minor symptoms until after I retired in late 2019 and saw a neurologist early in 2020. After playing a lot my first year of not working, I volunteered as a janitor for my church the next year. As things got worse I fully retired after 15 months. I now generally stay close to home except to fast walk on the treadmill at the Y 3-4 times per week. I miss not having freedom to do whatever I want due to medication scheduling.
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I chose to retire after forty years of college teaching. Within six months my symptoms started–extreme lightheadedness, balance and walking problems–and for a week my feet slapped the floor like clown feet. It took two years for me to be diagnosed, which meant I received no treatment. It’s not uncommon for people to get sick after they retire. Sometimes I wonder if I had kept teaching for a year or two more, would my PD have waited?
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My HWP is only 55, so long time until we can afford retirement, however, there is no way he will make it to retire until Social Security. Has not told the job yet, too afraid. He would like to go out on Long Term employer disability, but not bad enough yet to qualify I’m sure (diagnosed 2014), but starting to struggle cognitively and anxiety so worried his days are numbered if the company sees his work being affected.
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I was told I had PD in 2016 and retired in 2021. At the time of retiring I was 81 and traveling to Utah, Iowa, Nebraska, Texas, S & N Dakota and Minn. While working I had tremors in both hands. I worked out 7 days a week .
Perseverance is the name of the game. Working out, communicating with others will definitely help save the day.
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I did not retire when I was diagnosed with PD but retired 2 yrs later and sooner than I wanted to because PD was affecting my performance. This decision was extremely difficult as it forced me to accept and admit I had PD, that it had progressed to the point where it was impacting my daily activities and that my future plans needed to be significantly modified. The depression, hopelessness and sense of no purpose consumed me for 3+ years. I’m not sure where I would be today had my primary care not helped me to find a psychiatrist who was persistent and patient enough to stick with me as we tried 6 different antidepressants, multiple dosing and timing approaches and finally found a medication that actually helped me gain a satisfying place in this world. I will be forever grateful for that help and support. I am finding new purpose and happy to have more quality time on this planet.
Maria
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I actually had to retire before I was diagnosed. My cognitive abilities were no longer at a level where I was able to complete my tasks within the time frame that the company required. I also couldn’t sit at my desk working on my laptop for 9 + hrs. each day. I knew something was wrong but wouldn’t have thought it was Parkinsonism. There’s no history in my family for this movement disorder so, other than knowing that Michael J Fox had it, I knew nothing about it. That’s about the same time that I moved back to NY from Charlotte, NC. I wanted to be near family.
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