did anyone ave 2giv up work because of pd... - Cure Parkinson's
did anyone ave 2giv up work because of pd im finding it very hard 2 work 5 hrs a day for 5 days
I thought about this for the past two years and made the move a week ago. So far, it is a big adjustment but I started to feel like I had no choice
hi hun how long you been diagnosed? i've been given up about 8 years i worked as a supermarket checkout assistant and just felt like i was holding everyone up it was affecting my confidence1998 i was diagnosed
This question has been asked many times and it stil is the 'first' time for us. Yes we/I have had to 'give up' my wonderful (extremely stressful, demanding, and a dream come true) job. I hid it for as long as possible, and then realized that was just adding to the overwhelming stressful work day. I left when I knew I was not working up to my reviews. It was a depressed time period afterwards, but I know now I can not do that job when the stress was literally shorting my life by making the PD worse by the day. I spend my time working with pwp and groups, and of course family. Take a deep breath, pray about it, and then do what is best for your health. God bless, You are in my prayers.
To ftadh, bawford, Mazpar, and all of you wonderful courageous people who have been diagnosed with Pd or are are caretakers of PD patients..I salute you!
It is not easy getting this diagnosis or living with the disease much less when it forces you to give up your job/ career etc. it may feel like is the end of the world at first, but I am here to tell you that by the Grace of God you too can overcome and rise above the storm if this is what you must do to be able to live a happier purposeful life . I know because this happen to me, I was forced to give up my career as a neurologist and movement disorder specialist (ironically)which was my life's passion when I got diagnosed with this disease. The stress ofmy field was taking all my energy away and aggravating my pain and preventing me to enjoy my family. So now, I get to be a mom and still do what I love by teaching others about PD and serving in advisory boards for national PDF. You too, can make a difference and have a purpose even if you no longer have a "job." but, as above I also recommend much prayer and to follow your hearts and do what is best for your health and family in deciding whether or not to continue working. I still miss my patients and practice but I know that all things happen for a reason and there is a higher purpose in all this. We must stay positive and build one another up.
May God Bless all of you.
It was like cutting off my leg, but 3 years ago I closed my private practice PT clinic after 20 years. It became a liability and I was not capable of meeting the demands of many people. In the last week I have heard from 2 former patients stating that they miss me... I have not successfully defeated the depression yet. It is a very difficult decision but eventually most of us have to make it.
etterus,
Wish you were in Los Angeles area. We desperately need at PT Clinic that specialized is movement disorder disabilities. For something like that you could be a decision maker, and train the therapists to do the kind of routines they need, which are vastly different than everyone else.
I actually am an orthopedic manual therapist which is quite a bit different from the movement disorder needs. Lost my manual skills. I'm still learning neuro though.
I retired from my job, as a school teacher, 5 years after I was diagnosed with PD. It was hard, but my body couldn't take the stress. It was an adjustment, but you just get in another routine and it gets easier. Just do what your body and your heart is telling you is best. Blessings.
I live in a small rural area, it took 3 years to find out what was wrong with me.
By then I was so miserable, muscles in spasms, couldn't keep my eyes open
after 11:00 a.m. I was missing work and making errors.. so they fired me.
I have never been fired, in one way I was upset but then relieved. It was then that I finally was diagnosed. That was 4 1/2 years ago and I am glad to be at home!
yes I quit 2 yrs ago, now fighting for dis/ssi going to court tues. had dbs surgery in Oct. this is crazy.... but nothing worth it comes easy to those who really need it!
I have to admit to dreading having to give up work. I have been in the fortunate position that I've never actually had to work, but I chose to.
My employer has provided me with lots of adaptations such as Dragon software and a dictaphone, they have been great. I work for the local education authority as an adviser to the nursery's and preschools who are working with children with special educational needs.
I love it with a passion, and have no intention of going anywhere very quickly. I will be devastated the day I have to give up work, I am quite an independent person so to be dependent on someone else to support me will be horrible.
My husband is great, he would never begrudge me anything , but I want to be able to buy my own things with my own money. Be Independent for as long as possible and enjoy the job I love.
I know the time will come when I don't have a choice,like many of you. You're very brave to make that decision.
Caroline
My situation was a little different, I always supported myself and my 2 children and loved my job teaching preschool. I made the decision to be done working when I felt stressed and not working up to my own high standards. It w asn't long before disability kicked in and I was supporting myself, my kids are grown and on their own. My husband helped when he had to, but knows when to back off. Been home 4 year s now, takes me longer to complete tasks, but the stress(black cloud) is gone except for my health concerns. Last week and this week, I actually made a walkway to my house with very little help. Before I could have completed it in a day or two, but I finished it by doing things differently than I would have before, I toted materials one by one in my little red wagon, used a tiny, kids shovel, and had help with the heavy lifting. And it turned out great! Now I'm going to take a week's break, recuperate and rest, then figure out what goal next.
Yes, I worked as a school cook, and was 'retired early' because of my pd. I was getting a lot of dystonia in my left foot aand hand, which was deemed dangerous by employers due to health and safety regulations.
Yes - i was a firefighter and hid it for quite some time while my tremour wasn't too bad . During a routine medical i was asked to do a "balance test" which i failed , I was referred to the OH doc who said that while i didn't have significant balance problems i "may develop" them in the future. I was taken off "Operational duties" and stuck behind a desk for 18months before being retired due to "Ill Health" in September 2011 (I didn't choose retirement - I was retired !!). Looking back , they probably did me a favour - i'm certainly less stressed and have evened out a bit. I was dxd in 2005 at the age of 40 and retired 3months before my 46th birthday - if you feel you can't cope at work any more please think seriously about cutting yourself some slack and retire - go out on a "high". Retirement takes some getting used to - i'll be retired longer than i worked (hopefully) but that is PDs fault and not mine !
After teaching religious school for 16 years, i have JUST retired. The stress of the preparation and behavioral differences just became too stressful for me. I was diagnosed almost 2 years ago. The decision to retire was extremely difficult for me emotionally...I love what I did. But I didn't have a choice...I was no longer the teacher I once was. It has not hit me yet, as it is the end of the school year and just feels like summer. I'm sure this is going to be a tough transition, but don't feel I had a choice. I needed to be fair to all the children yet to come. I will miss my job tremendously, but once again, pd has taken control of whether I work this job or not, I will not let it control everything, for as long as I can.
I was laid off in January-now I know it was the Best thing that happened-I wouldn't have wanted to make the decision-and now I can see I wouldn't have been able to get through the day. I'm doing Charity work from home-on my own schedule-and for me, this is a good place. When life gives you lemons, make lemonade!
Mari~
My husband diagnosed in 2007 and had to retire June 2009 because he just couldn't handle the day to day work activities and added stress of the disease . It was a very difficult decision to make but now we just try and focus on the positive and make the best with what we have. Good luck to you!.
I had never been fired before. But after two in a row, I knew it was time. SSDI pays way more then I ever dreamed. Remember when applying for SSDI to always talk about your worse day and what you can no longer do. You will be fine, really.
It's the same in the UK - you really need to tell them about how bad things can be , it's the only way they'll listen !!
I second that. Found out it is crucial. I answered in general rather than worst day. Feel certain this contributed to being denied on my initial & 1st appeal.
Hear, hear!
When we did our in office interview he went off meds for a couple of hours. Then he took them in front of the interviewer and when the sinemet kicked in, she was shocked. And SSDI was way more than we thought too, but still does not cover the meds for the month during the "donut hole" Comtan is just way too expensive.
It will be 1 year this June 10th that I retired from my job working with preschool children and their families. I dearly loved my job, but knew I would have to give it up when my balance issues were becoming more and more obvious. I retired before my boss, who is a good friend, had to ask me to leave. After 25 years at my school, it was very difficult. Now I spend my days taking better care of myself. My husband bought me an adult tricycle and I have been exercising every day. It really helps. I just accomplished a 6 mile ride yesterday! Leaving your job probably won't be easy, but it may be the best thing for your health. Good luck to you.
tank u for ur answer i tink it would b better for me as i get so tired im standing in a shop which doesnt help
My husband had been a mechanic for 39 years! He injured his low back from too much heavy work. Had surgery done and while recoving from the surgery he started having tremors. Doctor thought it was depression and anxiety from not being able to work. We found out he needed another surgery on his back. He was let go from the job due to being out of work for longer than 1 year. That was their rule. We found out after seeing 5 different doctors that he also had PD. He had never been fired or let go from any job before. He was used to hard work all his life and then to be told that was the end of his working carieer he felt lost! He still does!! Not being able to work on anything. He does know that he can't because his body tells him this and also his doctors. He hates that he gets told by so many people that he still looks good and like nothing is wrong with him!! He does not take this as a compliment. He feels they think he is not telling the truth of his condition and just doesn't want to work! The meds help hide the tremors and when he is "on" he may LOOK good but does not always feel good!! I'm sure you all know what he means!! He tries to explain this to some but is so tired of doing so, Also he will not go out when his meds are not working or when he is "off"
When ever we have car trouble he hates that he can't work on it. He knows that he has to take it to someone else! He still can not adjust to this. He can not trust anyone. He knows how and what should be done to fix the problems and when he sees the person working on his vehicle he can tell if they know what they are doing or not. This is very frustrating to him because mostly they do not know!! His question is...... how does everyone do this? How do you trust and find a good mechanic??? And another question he has is do you get the same comments and how do you deal with them? Thank you for answering him and good luck to you on your decision. I hope you will have an eaiser time if you decide to retire.
I have suffered thru the same kinds of comments - more so in the first few years after Dx. At 1st tried to explain "on" & "off", dopamine, brain cells, transmitters, etc. Really didn't help much. So hard to adjust to lack of understanding & emotional support. My sisters didn't believe I have PD. Felt like I had to prove it to them. What a horrible position to be in!
Worst is when I hear things like I'm not trying or I'm inconsiderate. I have cognitive deficiencies secondary to PD including confusion, poor memory, forgetfulness & poor concentration. Would be considerate if I knew what was going on quickly enough. They should know that from my past. Why don't they know that my feelings haven't changed? Only my capabilities have changed.
Frustrating most people can't conceive of what's happening in parkie bodies. Think shaking is only real feature. My sister & a few others have said some of my symptoms are just part of the aging process we all go through. Guess they don't see me enough to recognize severity & frequency of mishaps & cognitive problems. Guess can never know type or intensity of another's pain. Yet, my sister has recognized mine lately & encouraged me to get a prescription for a strong painkiller.
The comments, etc. kept me emotionally devastated for a few years. Knew had to let go of the hurtful emotions; but it was a long difficult journey to finally let go & accept it was unreasonable, as much as I crave it, to expect anyone to fathom how it really is in my mind & body. There's a peace with letting go of unreasonable expectations. I feel so lucky to be a part of this community where we all are more attune with each other than with non-parkies.
I was a nurse for 46 yrs , diagnosed in 3/2006, continued working fulltime in mid-management in longterm care until April 2011 when I felt that I could not meet all the requirements of my different positions. I was approaching my 65th birthday anyways so I decided to retire as I was getting more fatigued and I wanted to have energy to be able to continue enjoying life. I have more giood days than I do bad ones and I have yet learned to pace myself and have the tendency to oiverdue on those good days and pay the price. I have been a doer and caretaker most of my life and I think that's what keeps me going. I AM more aware of the effects of the PD----sleep poorly, found out from my new BF --after being alone for 15yrs I now have a roommate---and he tells me I shriek and whimper in my sleepI have no recolletion---side effect from PD meds, along with fluid retention and intermittent bouts of urinary incontinence, use a cane for short distance walking outside the home and a rolling walker for longer distances but on the positive side I still drive, able to spend time with my grandkids locally, take care of my home without help, my BF and I are taking a 2.5 week road trip in July and on our return home I fly to Italy for my youngest daughter/s wedding so I HAD to retire so I would have time to fit everything in------I am truly blessed that the disease progression continues to be slow, and like your husband imbanni---I am often told how good I look but they don't see me when meds have worn off, and I didn't sleep well and look like something the cat drug in---BUT considering the alternative I deal with it the best I can. Sometimes I think this disease is harder on some men---do you attend support meetings, are there any volunteer opportunities in your area that your husband could perhaps share his knowledge of auto mehanics with? I wish you both the best and this site is really very helpful.
Hi cowmom27!
Thank you for your suggestions!! Yes we have looked for support groups but there does not seem to be one my husband feels comfortable with. We are going to meet a couple who live in the same city as us who found us on this site!!! We are sooo looking forward to it!! 
They are the opposite of us. She has PD and her husband is her caretaker. I think this is going to be a good thing for all of us!! One on one kind of support for the 4 of us!!
I want to thank you for your concern and I agree that my husband should volunteer at a school or community business with his skills!! He tells me that he is too embarrassed to do this though.... I still pray that someday he can get past that feeling. I agree with you on that fact that it may be more difficult for men. They are taught their whole lives to be strong and not show weakness. This is a male thing they teach each other. So when a man feels sick and weak he feels like the rest of the men will see him that way too. Kinda' like the jungle and the survival of the fittest thing!! On the other hand I admire those who don't do that and can get past that thing!! But we are who we are and some can change and some can not. I still admire my husband for soooo many other things!!! His strength to continue on and fight this monster! His kindness to me!! His love and understanding and concern for me! He does not want to be a burden to me. I tell him that would never happen and I know he would do the same things for me if I were the one sick.
Again, thank you for your suggestions and concern!! God Bless you always!
hello
yes i had to give up work. i am a funeral director and grief specialist, in this bisiness you dpn't work on a schedule, you work on the schedule of the ying and it always seemed to be feast of famine. i truly loved what i did , and i fought to stay as long as i could, unfortunately i also at the time was being treated for fibromyalgia and chronic fatigue, so by the time i got the pd dx i was pretty worn down. i couldn;t do the 7 days a week and sometimes 10 plus hour days. i left before i was asked to leave. driving was becoming diffucult, concentration impossible and this is information for paper work really can't be with mistakes . i have been gone from my job for 5 years this past feburary i remember the first year was so very difficult i went thru withdrawal from being a work aholic and from the people i helped over the years both at need and in the aftercare. i thought i had left too soon, but hindsight is 20 20 and i left much to late i thought i went out on top of my game, but i was less than half of my game. follow your gutt, it will guide u the right way.
btw since i have lfft work i can not believe how much better i feel and am doing
but i still hate going back to where i worked because i know i was good at the job and i miss all of it.
blackcat
Although my career was PT, I always perceived myself to be a biomechanic. While I was going to school I was poor and the only way to have a car was to fix the old junk myself. I managed to do this most of my life and kept a fleet of 5 vehicles on the road when my 3 kids were going to college. I loved it though frequently swore I'd never do it again.
With regards to your husbands question, the only advice I have is to speak knowledgeably when talking to a mechanic. They are less likely to attempt to cheat you if you appear to know what is going on. If they perform well and fairly send them word of mouth new customers. It is getting much more complex so being knowledgeable is a true challenge.
Hi Etterus! I appreciate your concern and answer to my husband's question. Your advice makes sense to me!! We definatly would recommend him/them if they did a good job!!! My husband always praises people also and lets them know right away how appreciatlve he is when a job is done well for him. He never talks down to people nor does he try to quiz them. He just asks the basic questions about the problem and how they intend to fix the car or truck. He can tell by their answers if they know what they are doing or not.
Well, thanks again for your suggestions!!
I wanted to keep working past retirement age. My jobs fulfilled me. I loved working. But, the last time I worked was in 2005. Got fired from the job on my boss' 3rd try. Had begged to stay, thinking my boss was wrong - no one could do the job as well as I could. Didn't realize the extent of what I called my "limitations" at the time. So I embarked on a job hunt. Was in a Work Force group & couldn't keep up with others.
Finally accepted that poor memory, disorganization, & slow pace were severe enough to impair my job performance. Friends, family, & I tried to come up with jobs I could do. Tried volunteer work in a library & in an animal shelter. Had to stop volunteering in library due to misfiling & dropping books, CDs, DVDs, etc. Had to quit animal shelter volunteer job because I fell down & into cages & broke dishes, couldn't clean fast enough, & couldn't get the cats back in the cages myself. At that point I knew there was no job I could keep because I'm a liability risk.
I reluctantly applied for SSDI. And all this was BEFORE I was diagnosed with Parkinsons. Had no idea my array of "limitations" were all caused by one medical condition. Didn't even pass my mind that shaky hands, poor depth perception, various cognitive deficiencies, balance problems, & a new type of pain in jaw & neck could ALL be caused by one diagnosis. Was determined permanently disabled. Sure miss the satisfaction I got from my work. I'm always eager for a chance to put some of it to use in my everyday life.
My brother who is 49 and diagnosed for about 9-10 years now had to give up his life as a vounteer fire fighter and a toll collector for the Illinois Tollway. The fire department was his life.
Imbanni, I am so happy that you have found a couple near you going thru a lot of the same things you & your husband are. It is less intimidating than a room full of people. Of course the feelings for your husband haven't changed---he is still the person you fell in love with and married. My philosophy where the PD is concerned is this----I may have PD but I will be damned if I will let it have me---not yet anyways. Can I ask if your husband is on an antidepressent? I take Wellbutrin sr 150 mg twice a day----its mild, but it definitely helps. When I was 1st diagnosed 6 yrs ago I was mad as hell----but after 2 weeks or so I got up 1 morning, looked at the person in the mirror and told 'her' look...you have PD and you can't give it back so you better learn to live with it....I never hid the fact that I had PD and made it a personal goal to find something to laugh about.. everyday....even if it was laughing at myself. Doesn't mean that I don't have days that I am never frustrated and cry when I can't do something that use to be so easy......then after 15 yrs of living in my empty nest alone I find a gentleman who actually has more medical issues than I do!!! The nurse in me has purpose again and he can make me laugh daily. So life in western NY is currently good and will enjoy what I have..........who knows what will happen next year. Keep me posted on how you are doing, consider the antidepressant if not already on one and look for the humorous side of life----a smile uses fewer muscles than a frown. Sending hugs to you both..................GAIL
I retired midyear after some 30 years in education. I was approved for disabilty retirement which improves my pension.
I loved my job for many years, and i felt damn good at it too, but when my performance began mysteriously to slip I lost my enthusiasm. Once I had a dx I knew I had to get out of there, and I did. Easy call.
Retirement! I needed it, I deserve it, I love it.
This is not really an answer more a confession - Thanks to all who have replied to this question - reading through the answers/comments has made me sign in ,
I was diagnosed or at least confirmed in 2008 but suspect I had been showing the signs for 6 or 7 years prior.. I'm a workaholic - a Quality manager with responsibility for 22 sites across the UK - and in 6 weeks time I'm retiring early. For the last 18 months I have been under pressure from wife , family , medical team and friends to give up but I had to come to the decision myself . The job has always been demanding and I have always enjoyed it but waking up one morning feeling grim I asked myself the question 'Why do I want to keep doing this' and the answer was 'I don't.
I gave my employer (been there over 24 years) 3 months notice - and I'm still working my way to the end of July.- I am not looking forward to the last month - I have warned my colleagues that if I get emotional its the PD or medication
Comments in the previous answers have made me feel more positive. I have a number of opportunities to do some voluntary work and I am hoping I might be invited to do some training and mentoring for me employer - all to keep my mind active
4 years after confirming it I still haven't really come to terms with PD yet but the replies I have read have made me more hopeful about the future. -maybe if I stop fighting it so hard I might feel better - just hope I've got the calculations right
Apologies for this turning into an essay - and thanks to anyone reading this for listening
im still tryin to accept my dxs in march ave pd bout 3 yrs id say my job is partnership with my best friend running a ladies shop involves a lot of standing and concentration on orders just have lost interest because it tires me out so much im 51 and am goin mad with everyting
I don't think that I know HOW to work anymore. Very frustrating!!
Yes! I taught deaf and hard of hearing children. I couldn't sign to them any more. MY hands shook so badly and I was getting very tired. I guess you could say I was stuttering! I had taught fo r 28 years and wanted to keep going. I think of these little ones every day and miss them deeply. However, I have found out there are other avenues in volunteering that are just as rewarding. So now I ma working with Mentally challenged adults....and we are going to put on a Melodrama. WHo would have ever thought I would go in that direction? There are so many in need outt there. It's fun to find a new self and unused talents you thought you never had. All is well.
