[craigj]

I am plagued by the question of when to stop work and apply for disability. I am an employee at a Barnes and Noble bookstore. I work a register,bag up product and computer research. the tremors in my hands and lack of flexibity have made me very slow at my job and I have become very self conscious in front of the gneral public, not to mention frustrated that I can't perform at my very best. My employer is aware of my PD, but I think not very aware of the implications. I used to look forward to going to work but not anymore. One day last week I just gave up in the morning as I was taking forever to get ready and called in sick. I hated doing that.

Does anyone have any thoughts on my situation ?

[indigogo]

Hey Craig -

The answer to this question is different for everyone. Having a supportive employer/work environment is essential - the more supportive, the longer you can work.

You said your employer is aware of your PD but not the implications. Do you have a good enough relationship with him/her to help him understand? The stress you are under will only continue to exacerbate your symptoms (especially in public) unless those with whom you work are understanding. You don't need or want the stress.

How much you want to keep this job or keep working at all will guide how far you want to push this. Here's a link to job accommodation information for PD http://www.jan.wvu.edu/media/PD.html

Good luck to you - it was almost this exact same question that brought me to (the original version of) this forum over 5 years ago. My situation was much different than yours; the advice and support I found here was invaluable.

[steffi 001]

The link Indigogo supplied will be so useful,but I just wanted to welcome you and add a little bit of encouragement.I was about 40 when my GP absolutely refused to allow me to continue my work as a supply teacher.So...I had little choice I`m afraid.And that hit me so hard but his aim was to give me more "quality" time for myself and looking back I would have struggled to juggle home committments with the demands of work so...it was a wise decision.In your case,it seems that you are aarriving at the decision yourself,probably with reservations.
Is there anyway you can still work but maybe cut your hours...job share or something? That would be a way of winding things down gradually.
You say you are more self conscious in public.I empathise but in my own experience,find folk are so very kind and understanding when they know what I`m up against.This of course is dependant on how open you feel you can be about your condition,and to talk about it isn`t everyones thing.
Could you change your job within the company and do more behind the scenes as it were?Is there a role within that criteria?

If you could talk with your boss,you could maybe arrive at strategies to ease your stress when the tremors take over.A break, someone to help you out.

Please don`t feel alone in this,So many of us have either been through this or are in the motions of...The support is right here throughout.

And finally...if and when you do decide to quit work,you will almost certainly find that new doors open.And life is still good.

Take care
Steff

[Ling2]

craigj, and worst of all, we do not have comprehensive social medical protection as you have in States. Here (in Hong Kong), we have to plan for our own fate (health, career...) ourselves and only GOD cares about us! After 6 years of dx, I am spending ages in getting ready for work in the morning <before medication kick in> - wearing shirt, buttoning, putting on trousers! My boss knows of my PD but he does not understand how PD affects me until a few months ago, I told him bluntly that with the disease progresses, I "have" to work on flexihour and to focus at the backstage as this would help me destress and lead a more leisure working life. The open dialogue works as it get my boss to put his foots on my shoes and avoid him from "over-expect" my capacity.

And craigj, you should know your boss/ superior well enough whether an open dialogue would help in your situation. My suggestion is:

If you wish to continue to work , try to manage your boss as well as co-worker expectation as this could avoid misunderstanding that you are slothful when actually you just cannot effort to be overloaded with work.

On the contrary, if you have lost your interest in work or found it unmanageable and the support system (social security) is sufficient for you to make such a choice, just lax and quit at time you felt comfortable.

All the best

LING

[Teretxu]

Ling, I'm a bit shocked to hear that wealthy and thriving Hong Kong provides no comprehensive medical protection to its citizens, I was convinced of the contrary.

Craig, I stopped working 8 years after diagnosis, because I couldn't sit in front of a computer for 8 hours, my cramped back muscles started aching within the first 10 minutes and never stopped all day (plus I was getting slower, and becoming a scatterbrain). When it got so bad that even a good night's sleep failed to relax me, I went on sick leave.

Spain has full health coverage, so I stayed on sick leave for 18 months (max. period allowed) and then the doctors had to decide whether to send me back to work or initiate retirement application proceedings. Since I had not gotten better, but worse, the choice was obvious. I'm retired with full pay, free medical care to include meds, and when I become totally disabled I will be entitled to a "caregiver" provided by the Social Security.

Everybody is different, though, some are still working after more than 10 years, others have to quit within the first three years - it depends on the job you do, too.

I believe you will know best when the time has come to retire. It's when you absolutely see no way you can do your job the way it's supposed to be done, and when you realize that work is such a strain that you no longer recover over night.

Take care
Teresa

[Virginia Therese]

I thought that I would like to "weigh in" on this topic, Craig. I am the carepartner to a pwp, and I just want to share with you how she handled the work situation hoping that it could help you. She...as with you...didn't know whether or not to confide in her employer(s) that she had PD...and the more she "stressed" over this, the more her symptom (primarily, tremor) became obvious. She decided to be "up front" with not only her employer(s), but also with her coworkers. Just that decision, alone, lifted such a heavy burden for her, and as a result, her predominant symptom (tremor) lessened. She, too, use to feel embarrassed...thinking everyone was conscious of her tremor, etc. UNTIL I pointed out to her that people have a lot more to do than to watch her tremor! My pwp works for an ear/nose/throat doctor/surgeon which requires her to assist him in office procedures where she has to use her hands all the time...either to provide necessary surgical instruments and/or to hold various parts of the patients' bodies while the doctor is working on them. I tell you this because this is a very difficult position for her to be and she has given much thought as to whether or not she's becoming a burden to her doctor and to all in the office. I want to tell you..nothing could be further from the truth because ALL...and I mean ALL of the people in her office setting have been and are so aware of my pwp's PD...simply because she made sure that they knew. There isn't anything they wouldn't do to help her, although my pwp still refuses any help, and I guess if/when she feels that she needs help, rather than accept it, she will probably make the decision to stop working...such is her nature...not to be a burden to anyone else. I know I have rambled, here, Craig...and of course, I am quite aware that not everyone is as fortunate to be in a workplace such as I've described. Only you know if things could "work" similarly for you in your particular office setting. I guess I just wanted to give you some possible "positives" about your continuing to work. I know for certain that it is best for my pwp to be at work right now rather than to sit home thinking about her PD. While she is working, she MUST focus on something else...someone else...and this gives her the very much needed distraction. I hope I've been able to help rather than to hinder you, Craig..good luck with whatever decision you make.

Therese

[wwally0]

craigj,
I would discreetly look into what coverage you are entitled to. You may want to contact a disability support group. I've been looking at these issues for myself. I was diagnosed when working on a 2 year government contract and as a result I have no insurance. In Canada coverage varies as different provinces have their own disability support programs and Federally folks who go on DCPP or Disability Canada Pension Plan may receive a low monthly income i.e. in my case about $1000.00 per month. Separate from government - your union Handbook would explain your own work place particulars regarding disability. I know your question focuses more on when the body is misbehaving enough to call it quits. Age, medication coverage, workplace policies all factor into the equation. I had to turn down 2 jobs recently b/c my tremors would interfere with typing demands. I’m starting a new gov. job in Dec. where I’m primarily on the phone and my drugs will be covered. It is a sad truth but much of my energy for managing my disease is financial. In closing, if you have a spouse - that might be another policy that may kick into gear. It's hard to push yourself further, but knowing exactly where you stand can help with decision making. Regards, Guy

[Sasha]

When to leave? I'm getting subtle - and not so - messages that my boss could live without me - my job is being divided up and redistributed among coworkers as we speak - very painful - but I need the health insurance, the income, kid still in college, and am not sure what I would do if refused for Disability. Or how I would spend my time.

On the other hand, would I feel better if I weren't subject to this stress? And the exhaustion of being there 9 hours a day. Accomodations aren't going to be made. I have FMLA. but part-time work or long lunch to go home and nap - not in the picture.

Did anyone actually feel better after getting out of the work environment? Thanks so much for any ideas or insights. I think I'm kind of in the
"deer-in-the-headlight" stage of this illness (that is a recognized phase, right? ) and can't decide which way to go - not to mention, will my body cooperate?

[indigogo]

Sasha -

For a number of complex reasons (some PD related; others not), I was bounced from an 18-year long job much earlier than I had planned when diagnosed with PD.

I was 41 when dx'd in 1999; worked my last day on July 31, 2002. I was devasted - I understand every word that you wrote.

5 years later, I'm glad to be finally stablized on SSDI and Medicare, and I feel stress free and hopeful for the first time (she said fatefully!....) since then.

It has been hard, but I think good for me, especially physically. The mental and emotional stuff has been much more difficult.

I think it's like pulling off a band aid - the strength it takes to get up the courage to pull it off and the initial sting are bad; it's all better after that.

You are in good company. There are so many of us who have had similar experiences. Losing my job has been the worst thing about PD. But I'm in a good place now.

[michael7733]

I was at the hospital with my son the otheer day when an elderly gentleman came up to me and asked if he could borrow my newspaper. I said, "sure, no problem,". He started rifling through the paper and said as he did so, "I want to see the obituary page. If my name is not in it, I am going to work tomorrow morning." I wasn't expecting a joke so, of course, I thought it was quite funny.

I have always been told that I should give a day's work for a day's pay, and I have tried to accomplish that plus a little lagniappe on every job I have ever worked, and I feel as though I succeeded. When I felt that I was no longer reliable, dependable and capable of giving a day's work for a day's pay, I humbly bowed out. Fortunately for me, at the end of my labor, I was self employed. I got out of bed on July 11, 2000, looked in the mirror and said calmly, "You're fired."

What do you feel is the right thing to do? On the other hand, if no one is complaining,...stay on as long as you want.

A temporary solution might be to simply adjust your medication times and doses to allow yourself to function for the time that you are at work.

michael b.