When should someone tell people at work you have PD. . I limp and am stiff on the right side.

[Casper3564]

[soup]

This might be better answered by somebody in Canada since laws are different all over the world.

However, in the UK (England anyway) you can only expect your employers to adjust your working conditions if you tell them you have a need for it. In large organisations this is usually dealt with professionally as the Human Resources Department will be well informed about employment legislation.

In smaller organisations you might have to be more assertive to claim the changes you are entitled to. The Parkinson's UK helpline on 0808 800 0303 will be able to put any UK people in touch with an expert in the field.

Another way of looking at it is that, although your work colleagues do not need to know for adjustments to be made, they have probably been wondering what is wrong with you. They are also a group of people outside the house who can offer support comradeship and gentle leg pulling, and would welcome knowing that you are not an alcoholic or about to die in front of them.

On a personal note my husband John bit the bullet quite early on, got masses of support from the university where he worked and after sharing his tissues with all and sundry everybody pulled together, made sure he had gym equipment whenever he went to use it and even did very slow runs with him. (They also didn't knock too loudly on his office door in case he was having a 'power nap.')

You do not have to give up work until you want to.

[Balderdash]

A story by a friend with PD

Walking down my local high street last Tuesday, on autopilot, lost deep in thought on some earth shattering subject like the scandalous state of potholes versus the whacking great local authority’s pensions bill, both funded by my Council Tax payments, I was oblivious to the world and to the individuals sharing my bit of pavement.

“Hi there! How’s it going?” asked a voice above the traffic noise, words that started my exit from my inner world. A good slap on the shoulder hastened the exit.

“Fine,” my subconscious replied out loud on my behalf.

I became aware of my assailment’s identity as Wee Jim the Painter, who, without the slightest invitation from me to go beyond the initial exchanges of greetings, proceeded to monologue on all the people scrounging from the state. He included such low life like the unemployed (me), the disabled (me), and the English (me). Paranoia was starting to take hold of me.

As I stood there not listening to Wee Jim, I pondered on the word fine. “How’s it going?” or “How are you today?” or similar questions are always answered by me as “Fine!” or, if I’m in playful mood, I drag out the syllables of “Fan-tas-tic!”

Last Tuesday I was far from fan-tas-tic, things were not going well and to reply to Wee Jim’s greeting as “Fine!” was nothing short of a lie. Each limb had aching bones, I was walking slowly with uncertain, clumsy feet, my speech was slurred, I couldn’t get the small change out of my pocket and I craved sleep.

In the newsagent, trying the simple act of buying a newspaper held up the queue of busy people behind me: I lost the battle with my pocket trying to extract a pound coin, then dropped my wallet which emptied some of its content on the floor. The assistant took the opportunity to serve some of her normal, sane customers whilst below I fought with the floor to release my credit card from its wet and dirty grip. Having won that battle, and extracted a twenty pound note from my wallet in preparation for payment, I rose to my normal height.

The assistant ignored me and her eyes went to the next in the queue – which turned out to be the right thing to do if not for the right reason. I had stood up too quickly and was suffering nausea and the world was becoming rather grey. In short I was fainting! (Fainting in public is not advisable – believe me – I’ve been several times. But will leave that for another day).

Fortunately I was able to hang on to the counter and avoid collapsing in a heap. I was now aware of the assistant’s horrified look in my direction, no doubt I was a funny colour. She snatched the paper out of my hand, scanned it, and thrust it back in my hand, along with a fist full of change and the receipt. I left the shop clutching this as I was in no fit state to resume battle with pockets.

So all was fine!

Looking back, I ask why hadn’t I told Wee Jim how things were really going for me? Why not turn to the people held up by me in the newsagent and apologise for holding them up and tell them that I have Parkinson’s? Would it do any good? Possibly.

Wee Jim might gain an understanding of what it’s like to live with PD, challenge his prejudices. His ability to get a point across is strong, pity he’s not on our side. I doubt it. Noel coward defined a boor as any person who, when asked how they were, proceeded to tell you. Wise words.

Strangely, upon reflection, I feel I was at fault in the newsagents. Like many Parkies, I like to look “normal” – I don’t have many of the obvious signs like a tremor. Clumsy and slow – yes. The assistant wasn’t naturally aggressive, probably just stressed out by an awkward customer who was possibly under the influence of drink. In these situations where our PD is taking control, I believe we have a duty to let others know. How can we expect understanding if we don’t let them know we are far from normal?

Hey, I’ve got PD, the sun is shining and today I really feel fine!

[honeycombe3 in reply to Balderdash]

Hi Balderdash, I always tell people up front that I have PD, in a light manner, so if they notice me losing the thread in a conversation or fumbling to find a word (or whatever today's symptom is) they will know why. I have never had a hostile reaction: usually I get asked about the better known symptoms which I rarely exhibit (tremor, stumbling etc) & end up discussing the nature of PD & its effects on my life. I have found that most people's lives have been touched by PD usually through a friend or relative. It is nothing to be ashamed of embarrassed about: for us it is a fact of life.

[grandmasanta in reply to Balderdash]

I feel your pain. You have an attitude that I like.I believe that everyday is a holiday and every meal is a feast. On bad days I remember that it is better to be seen than to be viewed!

[michaela13 in reply to Balderdash]

I usually just blurt out, "I have parkinsons". I think you're right. We need to let others know what it's like no matter how embarrassing it feels.

[PatV]

I always tell everyone I have pd. Sorry I elbowed you, rolled over your foot, can't count my change. Sometimes it starts nice chat :D. I told everyone at work because it took 3 yrs to diagnose

[cheerspark]

I feel your pain too. The same issue is still haunting me. Here, I am referring to the immediate office environment rather than the organization or strangers.

In my case, it should be what rather than when to tell. Some seemingly caring & helpful colleagues will offer to understand your problem. The best time to tell is here. Then, the grapevines grow fast. You don't need to bother anymore. Next, question for you is how far your retirement is. Of course, occasionally you have to prove that the PD monster does not affect your memory & decision making especially when there is disagreement at work.

I do not suggest keep anything in the dark. Overtly, no one will pose as a discriminator against PD. However, PD is being used in office politics subtly. I hope you have better luck than me.

[Hokuto]

Just as symptoms vary from person to person, the conditions under which you tell your employer and fellow employees vary as well (culture issues, etc.). I told people at my university as soon as I was diagnosed, since I felt it imperative to let them know the reasons for my occasional odd behavior and lessening ability to concentrate. At the same time, I sometimes feel that it may appear I'm using Parkinson's as an excuse, but there's no denying the effects of the disease on our behavior. I'm not ashamed of having the disease (it wasn't my "fault" after all), but I do feel bad when I have to take advantage of fellow faculty members' assistance when they're already so busy.