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Chief 2

New to Parkinson's

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Chief 2    0

Hello group,

I am newly diagnosed with PD and outside of my family nobody knows.  My doctors says that I have young onset as I am 43 years old.  I am interested in hearing from those who were diagnosed young and what information they shared with their employer.

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LAD    215

Welcome, I was diagnosed at 46 but probably had it for a few years prior. My coworkers knew and were very supportive.  You need to do what's comfortable to you. I am not sure what or if  you are required to tell an employer.  I guess it depends on your job. Eventually, PD is just a part of your daily life and part of who you are. 

I don't announce I have PD to whoever I meet but I don't hide it either. I go with the situation as it comes. 

good luck 

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Hunter Dan    69

welcome , I was DX at 50 but had symptoms well before . Telling people of your DX is a personal choice , I generally don't talk about it unless someone asks why my hand is shaking or why do you run off to the bathroom so much etc  . I guess it is because I don't want people to look at me and say things like poor guy he has parkinson's or for people to treat me any different than they had before . That being said ,for work purposes it depends on what line of work you do and is it affecting your ability to perform your tasks ? I was a union Steamfitter  (pipefitter ) and was having issues with balance and had a couple falls at work . Using my left hand for delicate tasks was becoming increasingly more difficult . The balance issue was a huge concern as most of our work is off of ladders or in some type of man lift  . These are some of the same reasons I went to have my symptoms checked by my Doctor and eventually the neurologist . When I was 100 % sure what I had and how much it was affecting my abilty to perform I told my boss . In my case I was rather lucky as my boss was also a good friend that I had gone through the apprenticeship program with 24 years earlier so he was very concerned and supportive . I guess it comes down to Do they need to know now and if they will be supportive of you and do you feel they have a need to know .

Dan

 

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chuck172    1

Hunter Dan, I was a union Steamfitter too, If I had developed PD while I was active my co-workers would have smelt blood and nicknamed me "shakes" or something.

Pipefitters would have made great pirates.

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stump    463

I got my Dx at 38.  19 months later and work still doesn't know.  Far as I'm concerned it can stay that way until I'm close to needing to request accommodations.  Mean time I'd rather not risk losing out on a cool assignment or promotion because someone decided to get stupid.  Most of the time, if I keep up on my med schedule, my symptoms are not readily apparent.  Eventually that will change.  For now this works, for me.

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adams234    242

Welcome Chief,

I was diagnosed at age 35, 8 months after I started my current job. I was up front with them during the whole process. I am lucky because I work in a Nursing home so they understand what was happening.

Each persons is different. If you think that you are going to have a had time at your current job with your current symptoms then maybe disclosing is a good thing. This can stop any rumors from forming. If you think you will be able to work with out issue then no need to tell. I have only told my direct boss and the department I work with. If word has gone to HR they have said nothing. In the last 3 years at this job I have seen no change in the way they treated me.

Good luck

Adam

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NeverGiveUp    5

Hello, I am 43 and just diagnosed about two months ago.  I am an Assistant Principal at a High School and over all the discipline of 700 teenagers.  I have sit down with the assistant Superintedent and explained my situation.  Told him we are taking it day by day and hope to be ready for the start of school.  Medicine is helping but the fatique is terrible.  I agree with LAD, I dont annouce to everyone, just explain when needed and if they dont understand so be it. 

 

going to be good talking with you being we are both 43.

thanks

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LAD    215
On June 24, 2017 at 0:45 AM, NeverGiveUp said:

Hello, I am 43 and just diagnosed about two months ago.  I am an Assistant Principal at a High School and over all the discipline of 700 teenagers.  I have sit down with the assistant Superintedent and explained my situation.  Told him we are taking it day by day and hope to be ready for the start of school.  Medicine is helping but the fatique is terrible.  I agree with LAD, I dont annouce to everyone, just explain when needed and if they dont understand so be it. 

 

going to be good talking with you being we are both 43.

thanks

I find that kids are more likely to "go with it "... I sub at a school and I usually end up telling the kids if the opportunity presents itself. Then I get them to do sone of my "brain games " and they usually like it and we go on from there. It's a way to educate them that not everyone is MJ Fox or Muhammad Ali like every adult thinks when you tell them. That's one of the frustrating things about PD-it's different for everyone- no one looks the same. It's not your grandfathers disease anymore. 

Good luck and start collecting brain teasers! 

 

LAD

Edited by LAD
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MusicMan    771

As far as the kids go, It was great that the guy was on American Ninja. He didn't do so well, but it showed that we are not helpless, shaky, drooling invalids. Many of us get by for many years with mild to moderate symptoms. Kids get more from seeing something like that than most other things

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LAD    215
53 minutes ago, MusicMan said:

As far as the kids go, It was great that the guy was on American Ninja. He didn't do so well, but it showed that we are not helpless, shaky, drooling invalids. Many of us get by for many years with mild to moderate symptoms. Kids get more from seeing something like that than most other things

Jimmy Choi also did an live FB interview yesterday.  It was very good.  You can find it on the MJ Fox Foundation Facebook page.  He was very candid and real in his answers.  

 

LAD

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