Out of curiosity: How many in here are still working 100%? (I am still trying as best as I can, but it gets harder every week.)
Still working?: Out of curiosity: How many... - Cure Parkinson's
Still working?
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haugenk
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73 Replies
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I am NOT.I retired ar age 56, 3 years ago and it was the best thing i could have done. The.stress relief was one of the besr things i could have done for my symptoms.
Thanks for your response 'laglag'. I will think even more on early retirement myself. What was your occupation?
I worked in the Accounting department for a transmission company. We sold transmissions to the Military so I had to adhere to a lot of specific rules and regulations and it just got to be too much. I worked about 9 or 10 years after I was diagnosed and I was able to make it in to work most every day, but it was difficult most days. I would highly recommend it if you want to help your symptoms and you can afford it. I didn't think I could afford to retire, but after I talked to a financial investor he came up with a plan that helped me achieve that goal.
i retired 1 year ago best thing i have done.. But i worked 9 years with PD.
Would that mean you regret the previous 9 years?
No it was just time to retire. At the time i retired i was having major issues with my meds.
Had a great job but could no longer deal with the stress. I was a land survey surveyor. Mostly i did construction layout for buildings, roads and bridges. Very precise work. Had to be within 1/4 of a inch or better on all projects.
Some of the bridges where a mile long but still within a 1/4 of a inch. We used GPS that accuracy of 1/8 on a inch over 10 miles horizontal and vertical.
The instrument we used had a accuracy of +/- .0001 of a foot. My main job was drawing the project i autocad and giving that data to my field crew who laid it out on the ground.
Thanks for your job-description Bailey_Texas. I can definitely see that the level of precision needed in your job was hard to maintain with an evolving PD. Luckily, I am a University Professor, so the necessity for accuracy is seldom there. My main problem might perhaps be described as follows: I can do (almost) anything if I can decide when to do it. I can do (almost) nothing if somebody else defines the schedule. Have a nice day
Kjetil
I was diagnosed two years ago at the age of 56 but I'd definitely had symptoms for about 2/3 years before that. Stiffness, tiredness, less resilience. I worked in social welfare in senior positions, long hours. Three years ago, I decided to take a part time job and I'm CEO of a charity. I work 3/4 days a week but the big difference is - as you say - I largely set my own schedule. My job is partly about legal and technical stuff, partly about people - leading my staff and engaging with a vulnerable client group. So I'm very privileged. I need to work both financially and because it's what I do - I love my job. In the days I don't work, I look after myself very well, get lots of rest and exercise. I don't believe I could work at the pace I worked at before and was lucky to be able to make adjustments.
I trade securities. My particular system requires intense concentration and multitasking sustained over a couple of hours straight. I love doing it and I feel well while I am doing it no matter what else is going on in my life. If the day ever comes when I am no longer able, I am done.
Hello
You have had Pd for just one year? What symptoms do you have and what makes it so hard to maintain your work. Also if you don't mind what meds do you take.
Just one year in is such a early stage for most. Being 10 years in and i could still go back to my job if need be. In the last 1.5 years i have manage to turn back time buy almost 10 years with different meds and exercise. I would hope you could completely control your PD at such a early stage.
Just trying to help
Bailey
Diagnosed 1 year ago. But symptoms for 7 years. I suffer from another chronic disease as well (30 years) which has complicated the diagnostic process. Mainly I have challenges when lecturing (bad memory) but research works pretty well.
I get that bad memory thing. Boy do I get it.
Mr. Bailey you know how different each person can be.
True read his reply it makes it clearer.
Caretaker for son 54 years old....who passed CA Bar, CA CPA exam, was teaching math at middle school during day and playing BIG gigs night. DX Jan, 2015. June 2016 had to go out with Disability Retirement. Did not have a choice. Heavy duty anxiety (rides in back seat of car), Double Vision (20 Prisms), sweats, FATIGUE, slurred speech, cervical dystonia, etc etc. HE is NOT working. Wonder if the stress of working those last 18 months exacerbated his PD condition. Suffers forgetfulness.
Sorry he is struggling so much. Some people recommend yoga. Might be worth a try to help with his anxiety.
Thanks!
How much anti anxiety meds does he take?
Hal-9000 my son does NOT take ANY pharma meds. He takes L-theanine (supplement). He, at present refuses pharm anti-anxiety. I remember you sharing that you use to ride in the back seat because of your anxiety. HIs and my agreement is that we will give it a "go" and then if no progress he will try pharma. I share (print out) with him your sharing on anxiety and progress with pharma.
Let's just say a year ago was my low point. I had Freezing issues, I could not stop my brain from constantly thinking. My back was in constant pain. I was so desperate that I looked into CBD Oil and medical marijuana. I have never touched the stuff and it was quite prevalent in junior high. When I started the treatment for anxiety the first thing I remember is that I yawned. I didn't realize how long it had been since I yawned. My back loosened up and my communication skills improved. The more I took the better I began to feel and think. I am now at the maximum dose for Zoloft and I could use more. I could not handle trips any more and now I can. I would highly recommend it. The only thing that I see a negative is the impact to your libido but first things first.
Thanks, printed out your response. Will show it to my son.
OK -- I'm a woman so it is probably different for me. But at 68 libido is one of the last things on my mind. I don't understand all the hype for sexual enhancement drugs. Don't get me wrong....I've had a very full sexual life....been married happily for 50 years and that don't happen without spice....but it doesn't bother me a bit that I don't have that constant need anymore.
I would encourage your son to try Sinemet to see if it would help his anxiety and other symptoms. Everything we put in our body acts like a drug. Food, supplements, drugs from a pharmacy all cause changes in our body. There's plenty of research to support taking levadopa for anxiety. It is the gold standard for PD and it doesn't stop working.
C/dopa is the generic for sinemet. My son was on that generic and is still taking 100mg 3X daily. He was taking 250mg 3Xdaily. His anxiety was the same. The L-theanine has helped, but only lasts about 3-4 hours. I would encourage you to research Mucuna pruriens. I would like to get my son completely on it, but it takes time.
Stress increases as disease progresses so more dopamine required.
Hikoi, I haven't changed anything and anxiety yesterday and today seems to be lessing in severity, also sweats. I think the Mucuna is taking more effect (he started it on Aug 11th....6 weeks ago started at 50mg L-dopa, up to 120mg L-dopa). I wrote to his Kaiser MD for a supplement for ANXIETY other than L-theanine. He said he considers that supplement the best for anxiety.
Enjoysalud
I think you are probably right, the mucuna is helping, it is increasing his dopamine level which is what I believe he requires to help with his anxiety. You need far more mucuna I believe to get the same effect as C/l but I haven't tried it myself as it seems so involved getting the right dosage.
Heavy duty anxiety,, Double Vision, sweats, FATIGUE, slurred speech, cervical dystonia, forgetfulness are all classic PD symptoms. I hope when he gets sorted on the meds this helps him feel better. Good on you for your dedication. It's not easy.
Some doctors use this form to Highlight non motor symptoms of PD. They then discuss them at the appointment.
parkinsons.org.uk/sites/def...
PS: I get more anxious when my meds are wearing off that is before another dose. It's getting more noticeable as the years pass.
Hikoi, thank you! The Mucuna is driving me nuts. All that I read is that equivalent to C/L you need LESS of Mucuna to get same effects. Right now he is on capsules of NOW (equal to 120mg of c/L) plus 1 tab of C/L, 100mg. Both 3X daily. I want to get him on Zandopa, but want to give him a month or two on this. He gets his 2nd Botox shots for cervical dystonia in November. I am near to encouraging/pressuring him to get on Prozac low dosage of 10mg. HOWEVER, his anxiety seems to be less severe. His sweats have DEFINITELY lessened.
Isn't it amazing how many of our body systems rely on that dopamine!
Stress makes everything worse and I can vouch that stress aggravates my PD symptoms.
Yeah,
I used to be a really good in handling stress. Nowadays, I can handle almost nothing. Even a simple dentist appointment seems to be out of reach.
I'm the same! I didn't realise this was a symptom
PD being a brain disease, seems we can find ways to deal with the symptoms that block us from being and doing what needs to be done. Read Michael Kinsley who was diagnosed 20+ years ago, writer and journalist brimming with intelligence and humor.. there are a number of creative and brilliant folks still contributing. Good luck getting your groove.
All right you people. Am I going to have to slap you all. In case I have not made it clear there are many neurotransmitters . Ask your DR about Sertraline or Zoloft. I understand it sounds scary but if your brain is low in serotonin it is low, replace it. Torture by Ice cream is all about motor vs non motor. I need Dopamine to move and I need Serotonin to deal with stress and anxiety.
You'll probably like what we say as a group when we're done with boxing.
"I scream, you scream, we all scream for Dopamine".
Park_bear, I agree that stress aggravates PD symptoms. Are you on a pharmaceutical anxiety prescript?
I have read you share that you take Mucuna. Right now my son is on 120mg of Mucuna, NOW brand (equivalent to sinemet), and 100mg of C/L 3X day. He takes lots of supplements.....as do many of this site.
Fortunately for me, I do not easily get stressed out and so have no need for those kinds of meds.
I take plenty of supplements including NAC.
Park_bear, thanks. He takes NAC too.
Absolutely!
what meds does he take
Hi Bailey, please read answer to Park_Bear.
Stress seems to be such a huge factor. I have an easy part time job - I'm an accountant - which I hope to keep for a while. My emotional randomness is a bit of an issue tho so I hope I can keep things under control.
Last week in a meeting my boss was waffling on as usual and I just burst out laughing which really suprised everybody and kind of pissed him off! He doesn't know I have PD.
Let me thank everybody for your answers, they provide variety. I understand that PD is a disease with large symptom variety.
I am happy I found this forum, it seems to contain honest answers.
Keep up the good work , all of you, whether you get paid for your work/struggle or not. Have a truly nice week-end.
I work full time as a Teaching Assistant but I'm finding I get very tired.I'm newly diagnosed though and in early stages.
My husband worked for nearly 9 years after diagnosis - the consultant told him in 2006 he would probably be able to work for 2!! He was the headteacher of a very successful school - outstanding rating by OFSTED twice !! He decided to retire when he felt he couldn't do the job as he wanted to do it. Since retiring his health has improved , stress is greatly reduced. , exercise - golf, running, HIT some form of exercise every day , gluten free diet have all helped . 10 years after diagnosis he's doing well , he's 59 .😀😀
Interesting and very Nice for both u and your husband. Thank you very much for your Feedback. 👍
Wish your husband was my head. I'm a teacher and the head gives me no compassion at all and is nothing but critical of most that I do. I understand that I'm a liability but am sad how so few people at work show any understanding or sympathy.
I to get frustrated by the apathy of those near to me. If somebody was close to me I would like to think I would check out their condition with info right at my fingertips.
I'm an orchardist and so I guess we're lucky. My hands don't work so well any more so we're employing a young man now to help us where it used to just the two of us. I worry about this as our income isn't a lot but as my wife tells me it doesn't really matter, it's good that I have my brain and so can manage things. Glad not to have a mortgage. I do find in the summer when it's very busy that I can't handle the stress so much either but I'd still rather do this than anything else.
Nice thread, great to hear about everyone
Diagnosed at 48 and still working 3 years later albeit from home now. I work in IT and still really enjoy the work, not so much the politics and moaning which I mostly avoid. I'm just glad I don't have to climb up a ladder for a living.
Thank all of you for such great insights. This is a wonderful forum and I'm constantly learning. I retired at 67 a few months ago and had planned to work until 70. Was DX in 5/14 but tired and stressed by commute and difficulty sleeping. Now I do yoga, chair exercises and Parky dance nearly everyday. As I live in Sacramento there are many Parky support groups and I attend as many as I can. The most outstanding thing I have gleaned is the COURAGE of so many Parky folks. Bless all of us!
46 and diagnosed about 18 months ago. Still working and plan to for several years. I have a co-worker that has been diagnosed for over 13 years and is still working after 2 DBS procedures. Hopefully the meds and exercise keep working for me.
I truly feel for those that still need to work with this horrible condition. I fully retired at 62, I'm 68 now. I know I could not work, I don't have the strength or stamina to do much, and I definitely do not have the cognitive ability I once had to solve problems.
I am 65, diagnosed with PD about 2 years ago. Main symptom is mild tremor left hand which gets worse when tired, stressed or cold. I am presently on rasaligine and mirapex. I am an ER nurse working 12.5 hour shifts both days and night shifts. It can get pretty intense at times but I function pretty well so far. With high stress my tremor can be noticeable and I worry about mostly starting IV's, but the tremor stops when my hand is put into action. I find that I move slower than I use to..not sure if age or PD and my thought processes seem a tad lagging which has me writing down the list verbal orders more often than not. My greatest fears are harming a patient and not being able to pull my weight. I am per diem and can make my own schedule and tend to average about 25 hours a week give or take. Want to cut back more but having a hard time doing so...they are so short staffed and its in my blood. I also take 48 hours of call a month for an agency that sends specially trained nurses to do workups on anyone claiming to have been sexually assaulted. I may do one or two cases a month each case averaging about 6 hours. I don't find this job stressful and may continue it when I cut back on my other job. This got longer thanI intended...sorry.
Great, people, greater thoughts. Thank you so much. i seem to be older than many of you. 75 now, dx. 3 years ago. Physician, psychiatrist, love to work, wonderful -- in any way you can imagine, much younger wife (45) that I think a lot about, want to leave her with enough money so she can do what she wants (work, not work, find a new man, get remarried, just play around, etc.---these last 5 are really painful to me but I know the spirit and fact of them are right. She has and continues to give me so much). Working?? Saw 11 patients, 1-hour each last and previous few Fridays (usually about 40 session per week) and was wiped out. And for the nth time, wondering should I be doing this, am I killing myself, wondering if I wasn't working, what the hell would I be doing. Have not figured it out yet. I hope I do before the grim reaper strikes. To make matters worse or better, I'm blessed to be in good shape (if one ignores sleeping problems that redefines "sleeping problems", ringing in my ears, memory problems that range from minor to monsterous, a right arm/hand that just don't work, muscular weakness right side, etc.. What the hell to do about working??All thoughts, opinions, directives, etc. welcome. Thank you in advance (how's that for being presumptuous). Ron
laglag in reply to
Retire! You'll find plenty to do. You can work on improving your health & you'll feel so much better!
in reply to laglag
Thanks. How did you decide? Usually, I have 30 reasons why not to retire, 10 to retire. Then they flip flop and then flip back, etc.. To make it yet more complicated, my wife says she isn't worried about money and just wants me to do what would make me happiest. Net, net, one on my reasons to keep working apparently holds no water and therefore should be discarded making it easier to quit. Are you ready--- I don't believe her. Get some help I say and I imagine you'd say. If I keep working I don't have the time, and if I quit working, I won't have the money. An enigma wrapped in a dilemma.
How did you decide? Ron
laglag in reply to
My symptoms were getting worse. I wrote out a timeline of how the symptoms were progressing & knew it would only get worse. I didn't think I could afford it, so I went to see a financial advisor & he determined I would financially be ok. He was right. I seem to have more money than I thought I would. My symptoms are actually better because I got rid of stress, I can exercise more, do more research on PD & take better care of myself. No doubt in my mind now that it was the best thing I could have done.
After I was diagnosed 3 years ago, I resigned as Chair of my dept., and went on a half-time appointment for 2.5 years. I didn't know how fast the disease would progress, but thought--correctly as it turned out--I could handle two courses per semester. Now I am officially retired, but well enough to teach one course per semester as a part-timer. I really appreciate the lower level of stress that retirement has brought. Fortunately the PD diagnosis hit me at a ripe enough age (66 yrs) here in the USA that I could receive full Social Security benefits.
Still working and hope to continue for another year. I work in the kitchen in a nursing home and really enjoy my job. It can be stressful sometimes because I need to be very accurate on the different textures etc for the residents. I have the best boss and co-workers who give me allot of support. I also do scheduling and I like that because it gives me a bit of wiggle room lol Some of the residents are very entertaining, and that helps to make my day enjoyable!
I'm 58. Same job 30 years PD 8 yrs hope to go at least 10 more but then again it's not work if you love your job !
Hi
I am still working 100% fulltime in fact I am a shift worker and yes it does get hard.
I only recently had a Apomine pump fitted, it sure has made a difference, and I mean for the better.
Hi Haugenk. The bet thing i ever did to help myself with Pd was to give up my job as head of a large company. The reduction of my stress levels was incredible.
Having said that, I now work an average of 10 hours a day writing and answering other patient's emails. That is not in any way stressful. I am now on my second month of the tour of Pd patients in the USA and Canada giving one or two talks a day, and still answering and writing the emails. Even that is not stressful, compared to my previous work.
Hi johnPepper, thanks for your reply. You seem more busy than ever. Writing does not seem as a problem for me either. Actually, I love it these days (after PD) even more than before. And by all means, it is not stressful. However, an appointment with my neurologist in 35 mins as well as an upcoming timed lecture in Sports economics is a different story. Keep up the good, and (as I can understand it) very valuable work
Best wishes Kjetil
Haugenk
From my observations those diagnosed young often work for many years, they have youth on their side and as well some have a different type of PD. Those older can often continue working if they have flexible work conditions or they are self employed so they can work around their symptoms or they work reduced hours.
There is a saying that the first five or six years are the honeymoon period after which the condition becomes more complex for many. Hope you find a balance that suits you.
Thank u very much for relevant insight Hikoi. If I can keep up for 5 more years, I will be more than satisfied. 57 now will turn to 62 in 5 years which is a normal retiring age in Norway. I really hope your "honeymoon" definition holds for me.
Best Kjetil
It will, I'm sure. You have some great people in Norway too. Here is one.
I'm 58, diagnosed with PD about 2 years ago. Main symptoms are mild tremor in right hand which gets worse when I'm tired, difficulty typing, and low energy. I am working full time as an IT coordinator at a college. I'm presently on ropinarole 6mg, also taking Mucuna, NAC, NADH, l-tyrosine, 5htp, and vitamins. Attended John Pipper talk in NJ and now doing fast walking. Thanks everyone for contributing to this forum!
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