Hi all,

I'm wondering how many of us on the forum are still actively engaged in career on a full-time or part-time basis? If you had to or decided it was best to leave your job earlier instead of later, how many years after your diagnosis did you do so?

I was hoping to work around five more years, but somedays I wonder if I will make it back to work as a teacher in the fall. I was diagnosed at age 40 last year but have been symptomatic for 7 years before starting meds.

Also, if you feel like answering...if you take Sinemet did you have the proverbial 2-4 year honeymoon where everything sailed along like you didn't even have PD, or did you notice fluctuations pretty early on?

Thanks!

Laura

Laura, this is one of the main problems facing young onset PWP, and I expect everyone will have a different answer. I think alot depends on the nature of your job, and the support of your co-workers and supervisor (if you have one).

I was a college librarian, diagnosed at 45. I managed to work for 10 years after diagnosis, retiring on disability about 3 years ago. I was blessed with a wonderful director who agreed to any accomodations that might help me continue to work, and colleagues who taught an extra class, or answered a reference question for me when I was unable to. I know not everyone is so fortunate.

I knew it was time to retire when it took all of my energy to drag myself to and from work each day; when my work kept piling up and when I had to rely too much on others for help. I think each person reaches the point where they know it is time.

As for Sinemet, i had closer to a 5 year honeymoon -- for a long time I felt "normal" again. Then i had to start increasing the dosage and frequency, and add other meds -- Requip, Comtan, but still was able to function fairly well. It was about a year ago that i started to have longer offs and more fluctuations and now freezing. But I had 14 pretty good years, and consider myself fortunate for that.

Like I said everyone is different -- we do the best we can to fight whatever this disease hits us with for as long as we can. Being in a group like this surely helps
linda

What timing for you to have started this thread Laura! I'm trying to work through the decision myself and it isn't easy. My diagnosis came at the age of 27 just as I completed my residency in family medicine, so as long as I've practiced medicine, I've had the PD. Last year, 11 years after my diagnosis, it all came to a head. Between my career, 3 young ones to care for and a home to run, I found myself completely exhausted and overwhelmed. My husband (my ultimate support!) made me take a 6 month hiatus which made a world of difference. Surprisingly, the patients and staff were all very understanding and caring during my absence.

Ultimately I returned to work in March of this year and although I'm working part time and much less than I did previously, I find myself having more difficulty with the physical and mental stress that this career brings. The dilemma: give into that sense of responsibility and guilt (and caring!) that I have for my practice or change directions and find some other way to use my training. I just have this pervasive fear that if I continue to work then a few years from now I may look back and regret that when I was most productive, I didn't pursue other avenues, spend more time devoted to my young family and my own health. Does anyone else feel that way?

Sorry back to the questions at hand. I have been on and off Sinemet over the years and didn't really have much of a honeymoon period, perhaps 1 or 2 years. For awhile I found myself on escalating doses but when I reached 6 - 8 tabs per day, the dyskinesias, headaches, malaise and fatigue far outweighed any benefits. I then switched gears to Stalevo, Requip and Amantadine and on days I work I only need 1 or 2 Sinemet. On my days off, I can get away with none.

It's a truly difficult decision Laura and I agree with Linda that everyone is different and each situation unique. Life I guess is full of changes, many of them not easy. The decision about whether or not to work I think requires a change in mindset. Perhaps it's not so much an ending of a career but rather the beginning of a new phase of life.

Soania

Hi
good topic, close to heart. I am at disneyland with my daughter and her two friends. Its greawill write more later

Girija

Hi All,

Girija: I hope that you're trip is magical...how lovely for your daughter!

The month I self-diagnosed, two months before I saw an MDS, and already at Stage 2.5, PD devastated my 20-year career in nonprofit development.

Rendered it unfulfilling. Impossible. Guilt-ridden. Gone. Disappeared to the dustbin of history. Just on the brink of saving the world (lol), I had to save myself.

The calculus was simple: use my few hours of energy each day playing eternal catch up at work leaving no energy for my family or myself...or ditch the job and conserve my energy for my two boys, my darling and my health?

No contest. It was obvious what I should do. Yet before I could act on it, I hit a wall. Physically, emotionally and psychologically. I simply collapsed. My body had made the decision for me.

Unbelievably 7 months have passed. I miss my colleagues, the intellectual challenge, the sense of usefulness. But I know it's better this way, whether Social Security approves my SSDI application or not. My heart goes out to those who don't have --or don't feel that they have--any choice but to work.

Poor but happy Rose

Hi,

Thank you. It's when reading all of our stories, I feel most angry at having PD. Why should we even be faced with such a decision?

In my case, I HAVE to find work. I would really love to stay home with my little one and possibly work part-time, but I don't think it's financially feasible. Needless to say that added stress does not help in the least. I have a job interview next week and fear that my meds won't work, or that I'll get a surprise early wearing off. Having to hide this makes it so much more difficult- as if we all didn't have enough to deal with already; we end up feeling inadequate because we can't keep up and like social pariahs because PD is for "old people".

Linda, I happen to be a librarian too. I worked in public libraries for many years before switching to the K-12 setting. I'm glad you had supportive colleagues. Hope you're still active in libraries somehow?

Soania, I can't imagine. You've always had this PD thing with you from the start. To answer your question: yes, I think by all means we struggle between wanting to feel productive and "normal" when it comes to career yet also feeling that we should spend as much time as possible with loved ones. If part time in a clinical setting is too much at this point, I think exploring other outlets for your talent and knowledge is a good idea. Might you be able to teach as adjunct faculty near you, or teach an online course? Maybe there's a way you could creatively combine your children and career...is there any way you could volunteer in a medical setting and have your children there helping too? You'd still be able to share your expertise and stay connected to what you feel passionate about- this would be great for kids to see too. Just an idea.

Rose, "poor but happy" says it all. I'd say "poor but rich in spirit" too

-Laura

Yes, i miss my work, but physically and emotionally, I know that I am better off taking an early retirement. I've been able to use my research skills for volunteer work and Parkinsopn's advocacy, and found that has helped me cope with the job loss.
The Parkinson's Disease Foundation has published a number of useful resources on living with PD, and I wrote a Fact Sheet for them on-- "Employment and PD: Working It Out". It is available online at :
http://www.pdf.org/pdf/Employment%20...a%20Herman.pdf

I think the Job Accomodations Network is especiallly helpful - they will suggest specific adujstments in the workplace that can help people with disabilities continue working. It is linked to from the Fact sheet or go directly to the JAN pages on PD at
http://www.jan.wvu.edu/media/PD.html
linda

My wife is a costuming consultant a Disneyland. She works for Walt Disney Imagineering mostly. Other than a 13 year hiatis to start a family, she has worked for them since high school.
We met at Walt Disney World where she was a costumer and I was a lighting designer-gaffer.

Hi Laura,

Welcome aboard. you are doing very well with posts. I am a 65 year old woman who just retired at the end of October. I wanted to stick it out to 66, full retirement but just could not do it. I worked in a doctor's office, 7 docs on staff, cancer specialist for ear, nose and throat. Talk about stress. I finally decided to leave when I knew the stress was doing more harm than I needed. Since retiring, I have had two visits with my neuro. He says I look better than I ever have. I was diagnosed in 1998. He said it just proves how much damage stress can do. I wish everyone who needed to retire could but it is difficult in this day and age for sure.

I have been on Sinemet off and on for years. Right now I am taking 4.5 a day with good control of my tremor. Adjustments with the meds has been made over the years according to my needs. I do note that I am having more trouble getting up from a chair, turning in bed and general stiffness. However, I consider myself to be very fortunate that my progression has
been slow to date. Good luck to you Laura

Hi, Laura. Your thread was one of the reasons I finally got around to registering. It's a topic (along with so many others about PD) that interests me, so I wanted to respond. I left my job just last Fall, after many years as librarian for a company (3 librarians on this forum--you, me, & Linda; no occupational linkage to PD I hope!)

My library & my position were eliminated, supposedly just a budget decision in a bad economy, but it was time for me to go. Even before my diagnosis 2 years ago, I had noticed symptoms for many years that made me less effective in my work (pain, stiffness, fatigue, harder to multitask, not quite as sharp, easily stressed, slower, low energy, depressed, eventually a faint tremor in right hand). After diagnosis, I was also anxious & extremely distracted by the many new required actions & decisions & thoughts running through my head (choosing doctors, meds decisions, financial dilemmas, work decisions, family issues, disease research, progression fears, etc.), so I became even less effective. It's always hard to tell what is pure PD & what is emotional reaction to having any disease, some mix of both, probably. Whatever, I needed less stress, but also needed the paycheck & was afraid to quit. So in a way, it was a relief when they made the decision for me.

At 63, it is probably an easier decision for me than for those of you not near retirement age, and probably also easier to get disability. I applied for (what a bureacratic nightmare!) and eventually received short-term state disability & longterm SS disability, plus supplemental private insurance disability. Altogether, I hope this combo will get me by for a while. I miss some aspects of my work, but overall I think it was clearly the right decision for me--as long as the money holds out! And hopefully reducing the stress & focussing on what matters most will help directly with PD symptoms/progression, or at least with my ability to deal with whatever comes.

Best of luck,
Peony