Advise, please!

[Penney]

How do others help co-workers & boss understand what we are going thru? I find words inadequate when trying to help them help me?

Any advise??

[Hidden]

When I told my co-workers and my boss they didn't do anything but they were always looking at my work performance and any little thing they said I was doing wrong they used it against me for a reason to fire me . I was a production supervisor there for 10 yrs and this happen in 2007 when the economy tanked so if I were you or anyone else thinking to tell them I wouldn't !

[Hidden in reply to Hidden]

I agree, they will use anything to get you out.. I don't know what makes people the way they are. To me it looks like they would help you in anyway they could until you could get help. As long as you can do your job don;t say a word to anyone. If you are shaking just say it is a reaction to medicine.. When things get worse you will have to get help.I have some great Lawyers if and when you need one.

[ronn]

My symptoms started in August, 2010. At that time I had, long since, been eligible for retirement. My supervisors and co-workers were great, but it came to a point where I could not, in good conscience, continue. My trembling was minimal, the slowness could be compensated for by working extra hours but diminishing skills in oral and written communication, along with short term memory loss were too much to ask my employer to overlook. (My job involved contact with the public). I retired in November, 2 months after diagnosis.

I don't know what your job entails nor what your symptoms are. It sounds like your boss already knows and has tried to help. Is your job in jeopardy? If not, you probably would be better off if your boss knows you can handle your job and your co-workers not even know what you are going through.

Wishing you the best

[Penney in reply to ronn]

Ronn ~ My job is not in jeopardy, I just had a real bad day the other day, my boss was at my office...I was pathetic, slow, stiff, weepy. I said to her, no one understands what this is like! She agreed.

I too, deal with the public + MONEY! Still able to do my job, it would just be nice to have something for them to understand.

I am eligible for retirement in April of this year. I still want to work...my Dr. said as long as I'm able, it's the best thing for me to stay busy!

Thank you so much for replying!

Penney

[Jerebet]

My experience was good. I sat with my boss and educated her about PD. I teamed with HR to help lead PD charity functions. PD has not affected my performance as a Web Project Manager.My boss set it up so I could work from home. i have survived 4 rounds of lay offs since my announcement. Some of my co workers are my best friends.

I would say go with your gut and keep an employment attorney in mind in case you need one.

[Hidden]

I taught school for 1 1/2 years after being told I had PD. {I now think I had it 6 years before told I had it.}

Wish I could have quit 6 months earlier. I had difficulty concentrating enough to grade papers. I even had trouble remembering my student's names....one was my granddaughter! The stress was unreal!!!

Six years later, I am doing better now, but have to remind myself it helps being able to avoid most stress.

[Hidden]

Education is key. You need to ask for the opportunity to speak to everyone in a group like in a team meeting. Then tell your story, get them to walk in your shoes. If they won't let you make a short video and send the link. Where are you? I'll come and speak? It's what I do! Good luck x

[Hidden]

63 god you look good girl!! X

[Penney in reply to Hidden]

Thank you! I try! LOL

There would be no place for you to speak, I work for a chain out of Montgomery, Al. I'm in Florence, Al. Actually, I'm leaving for a managers meeting on Monday, 2-20-2012, where I could tell my story, thanks for the suggestion!

Penney

[Hidden in reply to Penney]

woooooooo wooooooo FANTASTIC you tell them!!! yip yip yip

[hilarypeta]

Give them a book like the biography of michael j fox so they get better informed..communication is all ..

[Odette]

We made in Finland a guide for the people in working age with parkinson and for the employeers because of the need to have some information to give when just diagnosed and don`t even self know much or be able to tell much about the decease. It is also translated in english. I put here the link.

We just decided in internet to make it, two people wrote it and others commented it in net. Parkinson’s Disease Association in Finland published it.

It is very finnish because it tells about finnish system but I hope it hels you to think about how you could tell your co -workers and booss. I posted this guide to my bosses. And they had read it. There are in the end some cases that might help somehow.

parkinson.fi/sites/default/...

I hopr this link works.

Odette

[Penney in reply to Odette]

Thank you so much!!

[carolineb211]

II have been so lucky with my employers. I told them about my diagnosis the Day I was given it. my boss came to my house. We talked about what the condition was and the impact it might have on me both personally and professionally.she assured me that she would do whatever she could to support me to stay in work. I work for my local authority in the education department and have a demanding, often stressful job (. Not ideal for someone with Parkinson's)

During the first year I coped pretty well until my tremor made using the computer and the mouse difficult to manage, I began putting files where they shouldn't be, it was becoming a real nuisance. Despite this I was given a promotion as my manager said I deserved it, and I now manage team of three other people, all of whom know about my Parkinson's.

with all the difficulties I was having, I spoke to my boss, who said " okay what can we do to help". we contacted 'Access to work' who came and carried out a work assessment.we talked about my job and the Parkinson's and he came up with a selection of equipment to help me, including a new mouse, and Dragon software, complete with two days one-to-one training. My boss immediately signed it off, and I'm expecting the equipment next week.

My employer pays the first thousand pounds followed by 20% of anything over and above that amount.

Can't wait for my new gadgets, and the ability to get on with my job. I am very grateful for my management team for being so supportive.

My manager said she couldn't manage without me and that she was prepared to do whatever it took to keep me my job as long as possible.

Caroline

[gazelleuk in reply to carolineb211]

I think that is wonderful and testament to your employer and the choice of employee's they recruited.

Firstly It makes a difference because not everyone wants to climb the ladder of success but recognition is paramount to any individual.

I know you just want to work but just remember that you help your boss look good cos they are lucky your not in competition with them!

If someone Say's you should go for further promotion and you don't want that but they pursue it, just tell them you wouldn't insist on them remaining with you !

I am a woman with 2 Professions and my main Profession where I work, full time and still do,even though it' s ten years since I got diagnosed with Parker's had been a nightmare. I am fortunate because after 6 yr of being bullied I was taught how to trust again by some outstanding people.

The bullies were the worst kind because they fed off each other's insecurities but it made them feel good taking bet's on who was going to get me to cry first or retire or go on sick leave. The ones who lied and questioned my integrity are the worst but I know I have no respect for them. Now that they see me looking so well I know I am the winner for I can sleep at night. I know they will get what they deserve for that I am sure.

The moral of my story is, that you should remain active and don't let the ---- get you down

[carolineb211 in reply to gazelleuk]

Good for you Gazelle, how people can be so cruel is beyond me. still 'what goes around, comes around'. They will learn the hard way (I hope).

I admire you enormously for sticking with it for so long, it must have been a dreadful time.

It gives me hope that you have been able to work for so long after Dx, and continue to do so. That is my aim too .

Thank you, you are an inspiration to me. x

Caroline

[gazelleuk in reply to carolineb211]

Thank you Caroline that is very kind and supportive of you. i am a very determined person and won't make decisions about my future when stressed, unwell or emotional. I certainly won't allow other's to question my decision to remain until I reached a point whereby I felt of level head to make a decision which was right for me. They tried to impose their decisions upon me if they had have been diagnosed with the same condition.!

Anyway I was a tool for them to raise their profile for promotion and many did get promoted to the organisations detriment, which they will realise in time !

I had to stand up fpr myself against these bullies who scared off those who tried to get them to stop it or stand by me. I know in my heart they will be given a message at some time in this lifetime. They may even walk in my shoes at some point but If they do reach out to me I will ensure that someone is there for them but I will remain aside.

I pity those individuals who lied about me, trying to force me to retire: because they see me now and the transformation since I no longer work for them is phernomial because I now look fantastic and no longer shake !

[jillfd]

Watch for the difference between what your employer is saying to you and what they are saying directly to HR. I was a top manager, recognized as such by management but help was not forthcoming although I told my supervisor right away about my diagnosis. You would laugh if I told you the business I was in.

Remember that it is your life and take charge getting all your " ducks in a row" in case you need to retire. I worked too long under stress before retiring. Great news is that the progress of symptoms slowed greatly after getting away from that grind . And I have lots to do , never bored!

Funny thing is the I saw my old boss about a year ago and I could tell he was worried about seeing me. I did a little twirl around the room and told him the best thing I did was retire. He was very relieved.

[gazelleuk in reply to jillfd]

Jillfd

Thank you I understand what you are saying only too well.

I checked out my file and found some interesting information that had been written about me by people whom I thought were more than just colleagues. I applied through the official channels as well and received information that I had never seen previously and I was so angry I made the decision that I would remain at work and fight even if I was half dead and lying on my death bed.

It is amazing who you think at work supports you but secretly they are stabbing you in the back whilst stealing from you.

I have won because I have made a difference and know I have come through the other side with dignity and integrity.

I think you would not be suprised about my profession. Perhaps we could read each others notes !