Telling co-workers about my PD

[jt12]

Like I had said in a previous post, I try so hard to be positive about having PD, but there are those times when I feel lousy and I just want people to know what I'm going through. I've only told a couple of people at my work and of course my family, but I feel bad for not telling more people at work because I've known most of them for over 20 years. It's part of my character to not complain and just go with the flow of life. I just don't want anyone feeling sorry for me or possibly losing good relationships because they don't know how to deal with it. I am still trying to deal with the diagnosis but I'm not sure trying to deal with this on my own is good.

[qazwsx11]

Same here. I am just hinting to close co workers about the difficulties I have to deal with. Often someone would notice my off time and ask me why I am limping. I work in hi tech so I don’t want to give opportunity to people to misjudge my performance based on medical misinformation.

My take is that unless it’s not absolutely necessary do not disclose. Self declare as someone with disability and if needed ask for accommodations. If your needs are met why overshare?

[NRyan in reply to qazwsx11]

I agree. It is a tough decision though. It can feel lonely when you don't share but I look at the up side. I would rather feel a little loneliness than pity from friends, neighbors, etc.

[jt12 in reply to NRyan]

That's so true, I don't want that.

[m-h1]

Hi jt12

I know how you feel an sympathise with you.

My problem after 4 years of diagnosis is that some people don't think there's anything wrong with me.

They don't see me when I'm shaking like a dog

They don't see me when I'm so fatigued that I can't even bother getting showered or dressed.

The are not with me at night when for the last few years I have not had a full night's sleep .

Or when it takes me half an hour to walk to the news agents which is only 90 yds down the road.

( Just over 75 metres to our metric friends .)

I think a metre is what you put coins in to park your car.

Anyway .I digress.

And these people are unaware of the part of our illness called social anxiety. When we don't want to venture from our front door and face the world.

And many more symptoms.

I am Church Warden , a privileged position . I tried to resign last year but they said no .we need you and convinced me to carry on .

Last Sunday some one came to me and said can you move the piano?

What !!! I couldn't even stand up for the hymns.

The same person is physically fit, plays tennis, and runs marathons. Thank God all are not like that.

I now find myself carrying my letter from the neurologist , to prove that I am diagnosed.

Why?

It makes me feel like staying home and locking the door on the world.

Onward and upwards. Keep going.

Martin H

Yorkshire England.

[S70AWD]

My experience with telling fellow employees was very positive. I talk to them from time to time about the ways in which pd affects me, so they're getting good educational information. They are totally supportive. I guess I am fortunate. I'm glad I have them, because where I live there are no support groups.

[Quipu in reply to S70AWD]

My experience with telling fellow employees was also very positive. My boss even prays for me. My problem is how my coworkers perceive me when I have problems walking or typing and moving the mouse. I am an IT coordinator and I'm wrestling whether to start taking sinemet. I'm currently taking 8 mil of ropinarole and .5 mil of azilct. Even typing this is a challenge for me. But I do my best to remain positive and active. Prayer helps me also.

[jt12]

Aw, thanks for all the replies. I wish we all didn't have to feel like this, but then do we put too much pressure on ourselves to feel like we need people to know about our condition or maybe not give enough credit to the people around us that want to support us in what we're going through? Oh Parkinsons!

[Beckey]

Is there a support group near you? Or an exercise class for PwP? It's great to get together with others who live with PD, no matter what stage. You can so totally be yourself in a way you can't with colleagues from work or other personal friends.

[stevie3]

When I was diagnosed (three years ago) I recall my Parkinson's nurse encouraging me to tell people as I would find if 'empowering'. I'm really glad I didn't, but I think it's entirely an individual choice based on your own needs and circumstances. I'm fortunate in that I'm part time and also in a senior position so have quite a lot of control. Were I still working in the very driven environment I used to work in, I think I'd find it very hard. My experience is that pd is not well understood and people think all sorts of things. I wish to continue to work as long as I can. In the end, I told two people I trust from my staff team in case I need some slack and I've left it there. I also blame my difficulty in movement occasionally on a bad back. I have had 'reasonable adjustments' made discretely - so, I use an iPad as I find my keyboard difficult and I can work from home on occasion. Within my social circle, I have also disclosed carefully. In particuLar, I chose not to tell my 87 year old mum mainly because she'd never leave it alone! I felt, however, someone in my immediate family needed to know and told my brother.

[richardo123 in reply to stevie3]

Amazing story . I saw my neurologist yesterday. I have been off work since 1st of may . Because of herniated disk in the neck and have had early onset Parkinson's for 14 years . All co-workers know. I love my job buyout is a very stressful one. Since being off I have been functioning near normal as a human being. I still have malfunction of freezing and have to get my wife to dress me or pull up my pants or put on a t-shirt because of the freezing but not happening as much. Because of the way I am feeling i have been like a yo yo thinking go back to work or put in for long term disability. I told my neurologist yesterday I put in for LTD and he said that was a good idea on my part. My wife filled in the forms and sent in a month ago and I am not getting any word back as to approval for the LTD. I just had a friend approved and they were 5 months waiting. Anyone else experience this ? I live in nova scotia.

[Astra7]

I've only told a few people at work and some of my closest friends. I want to pretend all is normal and don't want anyone's pity. I'll tell them when it starts to show more, hopefully not for years.