I'm struggling with whether to keep working, to look for a less demanding job, or to retire. My symptoms are getting worse (unsteady on my feet, stiff arm, typing errors due to uncoordination) but I'm still functional at work, and I enjoy my profession. But work is stressful and stress makes my symptoms worse. And I'm exhausted.
Do I need a vacation, time off, a different job, or to just retire. How do I decide?
Please share your struggles on this issue. After you got PD, did you quit work, change your work schedule, retire? How did you decide? I'd like to learn from your experiences.
Thanks in advance for commenting on this post.
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maybeme
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I'm 61 and have been diagnosed for 3 years. Have had symptoms much longer, like everyone else. When I was diagnosed I was determined to keep working and not let it slow me down. I lasted two more years and retired last June. I worked in a high school as a counselor. Exhaustion was the main issue although several falls helped me as well. I knew I was not very productive. Adjusting to retirement has been a process. Glad for the time with wife and grandchildren and children. Sometimes miss being "someone". Overall, a good decision. PD is a relentless foe for sure. The truth is, I could not do a full day's work now if I had to. Good luck on this tough decision.
Thanks for sharing, Grayland. I too am 61, diagnosed for 1-1/2 years. I'm fortunate that I can still do a full day's work--an office job requiring a lot of cognitive ability. Stress absolutely makes my symptoms worse. My thinking is not as clear now either--but maybe it's just the stress. I seem to do fine on weekends, and will be thinking about all this when I go on a vacation coming up.
It's not just people with health problems who have difficulty trying to decide when to retire. I am a carer and loved my job, primary school teacher, right up until the final year. I always said I would not tollerate being a second rate teacher and I felt that I was slipping into that. My husband had not been diagnosed with Parkinson's at that time and he was worried about money. So, I took early retirement in the knowledge that I could get a job stacking shelves if we needed the more income.
When John was diagnosed he was signed off sick dur to uncontrolled syptoms and he actaully got to retire before me.
We do have enough money and that is important. However, without Parkinson's which is now well controlled, John would never have had the 5 excellent years witth lower stress and reasonable mobility. We would recomend retirement if your mind is in the right place.
Good points--the parkinson's gave him 5 years with lower stress and with mobility. Important for sure!! Great point--you could always get a job doing something if retirement didn't work out. Thanks for the input!
I retired a year after my diagnosis and will never regret it. A lot of my identity was that i was a teacher so I had to adjust. Now after being diagnosed almost 6 years, the biggest gift I have is time.
"It would be nice to know what retirement in good health is." That's a very useful comment, and I have been thinking about it a lot. I don't want to wait until I can't function--I had hoped to have an active retirement. There is so much I want to do--write, art, read, even take some more classes on things that interest me.
It's hard to find a new doctor after you move. I wish you the best of luck--and I hope you find something that helps get rid of being discouraged. I'm finding the best medicine for PD and for depression is exercise. But I don't do it regularly enough.
I dont think you will be able to decide. The ilness will tell you when to throw in the towel.
Perhaps you should make contingency plans to alter your lifestyle so that it dosen't come as a sudden shock if one day you wake up to find you cannot do the job you are doing now.
I lived from 1999 to 2010 being told it was all in the mind, and I could not do my job. I had no choice I spent over three years wondering round my home aimlessly wondering that the hell was wrong.
You then come to a point where you give up the ghost or fight.
Luckily I chose to fight.
I might not be able to do a full time job, I want but by hell I'll not give in
If I loved my job, I wouldn't be considering retiring. I don't love my job any more (though I used to). I want to keep things the way they were at work.
It seems that if I decide now, I will be in charge, because I still can function. If I wait until I can't function, I'm no longer in charge. hmmm..... Food for thought.
I am only 54 and PD has forced me to stop climbing scaffolds, so I had to stop being a carpenter. I guess falling from 20ft up helped. I am having a hard time with setting at home. And Social security has decided to take me all the way to the end. So we sit at home and with little money left in the bank we can't do much. I do help my neighbors a little as I can and I have good friends that understand the things I can't do.
I was never ready for this. It hit hard and is getting much worse fast.
It took 10 years of doctors and tests to find a Doctor that could tell me what was going on.
Climbing scaffolds!? I couldn't do that even before the PD! And falling! OMG. It's good it wasn't worse! At least you didn't break your neck.
I'm sorry to hear that it took such a long time to find out what was going on--I assume you had symptoms that nobody could figure out the cause. I was "lucky" in a way, because an orthopedist I went to (because I fell!) noticed I had a tremor and sent me to a neurologist--who made a tentative diagnosis, gave me Sinemet, my symptoms got better--diagnosis confirmed. I was glad to know it wasn't a brain tumor--the top guess on my list.
I also would have a hard time just sitting at home. I hope it gets better for you and that you can find something to improve your outlook. Thanks for sharing your story.
I worked for 28 years and loved my job. I wanted to continue to work forever. BUT I was getting very tired. I had to drink six cans of Diet Coke each day just to stay awake and on my feet. Then a new boss arrived and the stress was unbearable.I tried to talk myself out of the stress but couldn't. I feel that stress is the major cause of ever disease. WE are pre-disposed to a certain hereditary list of possible diseases and when stress comes one of the items on the list takes over. I have seen many friends have major family or work issues and have found themselves with cancer 10 or 12 months later.Avoid stress whenever you can.If that means quitting work so be it. I found some excellent volunteer work that was very rewarding and it did not include paper work, responsibilities of decision making or required meetings. So it was wonderful. Take care and best of luck.
Your situation is similar to mine (except for the 6 cans of Coke)--I have a new boss also and the stress keeps getting worse. And stress definitely makes my symptoms worse. If only I could stop caring--that's what makes it stressful, I care a lot about what's going on at my work. But I may need to just remove myself from the situation, because I can't stop caring. Doing volunteer work sounds like a great idea--helping others. It's inspiring. Thanks.
Does your company have a long term disability benefit? I worked for a year after diagnosis in a stressful, but fulfilling executive management position when I decided it was too much. My employer had a great LTD benefit of 60% of salary til age 65. I also applied for SSD. Best decision I ever made. I feel guilty when my husband leaves for work every morning. But when he's sleeping at 3:00 am and I'm wide awake, guilt fades fast.
Tough decision I agree. But stress will make your ailments progress quicker too. Stress is a crippler. You could try dropping a couple of days and if that does not help then stop and find something calmer to pay your attention to. Life skills coaches are a good thing to become so you can pass all your experience onto others and the feeling of helping even though you need help yourself is quite satisfying. I on the other hand have to go back to full-time work as my hubby only just been diagnosed and is not eligible for any assistance and out Soicial Security payments in England are being redesigned and means tested so you have to be really sick now to get onto the ladder. I now have to become the lead funder for us and when I really should have been retiring in 3 years only to find it will be eleven years now,,, phew that leaves a big hole in our lives that needs some funding. I am trying but it is hard when pushing 60 to get a good job. Chin up chuck! keep us all posted. Linda
Oh my--so sorry you can't retire sooner rather than later.
Stress is, indeed, the problem for me. The main problem. I like the suggestion "stop and find something calmer to pay your attention to." Maybe another job, parttime, instead of outright retiring. hmmm....
I worked as a systems analyst until 67. a meeting with financial planner showed my cash flow would improve if I retired so a no brainer. I had fun for 6 months until I had a torn meniscus. Downhill since then Now I'm 72. But I keep fighting. Loneliness is a problem that work solved.
I didn't make the decission it was made for me but by me - I had a car accident coming home from work. When i first found out I had PD i wanted to keep working so I cut my hours. I was okay for awhile but eventually PD caught up with me - the stress of worrying about falling asleep on the job and being unsteady on my feet was just exhausting. you'll know when for me it was a combination of symptoms and not feeling i was doing a 100per cent on my job. Yes i miss working and the people but it was the right time.
Wow--did you fall asleep at the wheel? I was sitting at a stop light the other day, closed my eyes, then realized I had actually fallen asleep. Lucky I was stopped at the stop light!! My doctor changed my meds--now I'm not as sleepy.
don't know if i fell asleep or blacked out but we think i fell asleep . a side affect of my meds. for me i was lucky no one got hurt except for the trees i landed in. i'm gladyou were stopped at a light. guess someone was watching over us.
I retired at 55 which was 3 years before I was diagnosed but I knew something was up because I started to lose my confidence giving Presentations for example
I would agree with some of the Commentators that you want to avoid stress - so choose the option that will give you less stress]
I used to teach aerobics classes, and my left leg would get sort of spastic after about 40 minutes of vigorous activity. I dismissed it as nothing. But it was the first sign of PD for me. Unfortunately I had to stop doing the classes because of uncoordination, I couldn't do the steps any more. But the regular exercise was, I'm sure, suppressing my symptoms.
I haven't exercised today--after I finish at the computer, I'm getting on that exercise bike in my bedroom! Yep, I really am! (unless I take a nap)
I'm having the same dilemma now. I was planning before diagnosis to work until 66;after diagnosis, I was planning for 62. My job has it's stressful times but I was managing it. Then, my agency got a new director and everything has changed. I am so much more stressed, people can hear my neck when I try to snap it because I'm carrying so much stress there.
I also have a new general counsel but he's wonderful to work for - but my boss retired, I took her job and am having trouble finding someone to do my job, so I'm doing 2. As I told him, work doesn't stress me; people stress me. My husband is 12 years older than I am and thought (both of us did) that I would take care of him in old age - now he's having to do some things for me. But I tell people I have no time to have a chronic disease, I'm too busy taking care of someone with a chronic disease. He has a pump, but he can't hear it because he spent 27 years around airplanes. I hear it all night long, but I'm awake anyway, so I limp around the bed and check his blood and put the number in the meter and give him glucose if he's low. I dream of going to an independent living situation where I can concentrate on exercise and we have restaurant-like food, and there's help if we need it. In April, I've been diagnosed 4 years - I had the first symptoms 8 years before with the REM Sleep Behavior Disorder. I've always read that you have 10 good years after diagnosis. I don't think I'll get that. I have 2 years to go before I have enough money so that I can retire. I am 57 now; the thing I hate most about this disease is I feel like an old woman.
So, my advice is if your job stresses you, no matter how much you love it, if you can afford to, retire and work on your health.
I was hired by one person, then supervised by another (who I think had a different idea of what I should be doing), now am supervised by yet another person (who seemed promising, but I'm now wondering). And the position under me (which is also a supervisory position) is vacant, so like you, I'm wearing two hats, doing two jobs. The stress of all this is really taking its toll.
An independent living community--or even assisted living--where someone fixes and serves you dinner, and where they have activities like movies, and other entertainment--I'm going to one of those if I can't function any more and if my husband is not able to help. Luckily I took out long-term care insurance some years ago--that was a really good idea.
Regarding the sound keeping you awake--have you tried those foam earplugs that you squeeze, insert into your ear, then let go so they expand again? They work great.
Hi, Good to read your letters,That is the problem that I must decide in the next 7 days ,should I go to work or stay att home,I know and feel I need to retire but I feel so guilty as to not going to work,Ihave been planning to retire for about a year now but work ethic gets the better of me .Why I have to decide,I have aa lot of contracts to deal with ,such as ,rewiring,double glasing,cladding and ventilation,all building work and I dont think I can take the stress,also my hearing is not good now.I feel now is the right time to feel less stress and look after me,but why do I feel guilty?
Maybe you feel guilty because of a strong work ethic that has gotten you through all the years. But it sounds like the time is right for you to just take care of yourself. Maybe there is a way to get out of the contracts because you are ill. Good luck.
I was diagnosed in 2003 at age 50. I worked until 2009 but the last year and a half were rough. I worked as an agent with New York Life. I made my decision to retire after falling asleep twice in 10 days. Stress and fatigue did me in. I also moved from Nevada to New. Mexico. To the person in Az, if you don't mind traveling to Albuquerque, Dr. Jill Marjama-Lyons is an excellent PD movement specialist. I travel 230 miles from Las Cruces to see her. Good luck on your tetirement decision.
Falling asleep during the day is scary. It's hard to get enough sleep at night. For over a year, I didn't sleep more than 4 hours at night--I would wake up completely alert, feeling like I didn't need any more sleep, and get up. But it finally caught up with me--I was so exhausted that I was on edge, and I cried at a meeting at work. Not a good thing to do. I am finally getting some sleep at night, and not feeling so sleepy during the days. I'm not on edge at work, as before, but I do cry when I think about leaving the place I work--it's been my life for 20 years.
I was starting a new job in May 2006 as a staff RN in a busy ER--had employee physical in the AM and was diagnosed that afternoon with pd at age 60. Worked there for 17 months, never had 1 pt ever comment on my tremor, never missed an IV either but due to some issues I HAD with the treatment of the elderly I decided to return to the nrsg. home where I previously worked. I went from night supervisor to a co-manager position and then to an assistant manager. During my last year there I was getting more fatigued, depended on my cane and on bad days a rolling walker to make my rounds. It became clear to me that it was getting harder to meet the expectations of my position and I felt the staff was watching out for me--while appreciated they had enough to do./ I was turning 65 on 4/27/2011 and my last day was 4/29/2011---retired after 46 yrs as a nurse-it has been an adjustment and there hasn't been a day that I don't miss my staff and residents. But my life is very full, busy and I don't have that much time to dwell on it. Retirement is a personal choice, weigh the pros and cons, pursue a hobby you always wanted if only you had time, travel, enjoy your family. GOOD LUCK with your decision, do what's best for you and your health.
Thanks for sharing! I've been working at the same place for 20 years--most of the time I've loved it there. But the place is changing, and change is stressful. Maybe I just need to go somewhere else and not retire. I'm thinking about all the options.
Hi,I am all for retiring! If you can do it ,I say do it. Why wait? I cannot afford to retire yet, we owe we owe,its off to work we go!! I am a Barber/Hairstylist,for 30 years now.and love my job.
I worked 20 years full time,cut back to part time for 3 years and started having symptoms;
shaking and tremors mostly,on just the right side.It was business as usual until customers started complaining and my boss asked me to leave.I left crying not knowing what was wrong with me.After 6 months of not working and symptoms not subsiding,I knew something was wrong,it was not carpal tunnel like dr. thought. I was diagnosed 2 years ago and currently work part time as a care giver until we can sell our home and down size. My husband and I have made that our goal by years end and we both look forward to me not working.I know it will give me the oppurtunity to get healthy and fit and live a happy stress free life with the man I love. I hope you enjoy retirement now as much as I am going to later.
I worked as long as I could, until my balance and othe PD problems became a hinderance to do my job effectively(on my feet most of the day). My neurologist suggested I stop working before i hurt myself. No problem getting disability, got it first time applied. The toughest part is not getting up to go to work daily after almost 40 years, it will take time to make that adjustment. Make sure you have "things to do and keep yourself busy" or you'll go crazy.
Hello...I have been diagnosed with PD for 3 years now. I'm now 58 and have a professional job at a local university. I've decided to retire this September after 30 years of work I loved as an engineer and metallurgist. In 1978, I had a severe motorcycle accident which left me unconscious for 3 hours...myself and my neurologist believe that it may have led to my Parkinsons. The choice was easy for me and my supportive wife as I have been getting more confused and tired on my job and it just wasn't up to my high level of work. Stress makes my symptoms worse and in my heart I know its time to enjoy life. I'm still mobile and don't have much motion symptoms when my meds are all working I'm able to carry on my daily functions. I have cut way back on what I used to do...now I enjoy walking our dogs, gardening, reading and doing Sudoku puzzles which keeps my mind active and daily treadmill walks. I wish everyone with Parkinsons to consider how one feels and try to move on with your life...there is a lot of positives to early retirement. Best regards to all with PD and their families, Mark
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