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wearwear

How do you tell people that you have PD?

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stump    452

Aren't you actually protecting yourself by exposing your disease at the beginning? It would be hard for employers to fire you for other reasons and not have it seem like it's not about your disability.

If you are content with your current position, sure. If you still harbor ambitions for advancing, not so much.

 

It's not that I think the company would make any effort to get rid of me if they know, but all it takes is 1 individual to decide they'd rather not take a risk on me instead of someone presumably healthy to scupper a great opportunity.

 

I haven't yet, but need to make an appointment with an employment lawyer to discuss how to handle the inevitable eventual disclosure so that ensure I don't get screwed.

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miracleseeker    668

Would PD affect your ability to perform your job?  If what you do is not labor intensive and primarily a desk job then you should be ok right?  Let's say you cannot do your job once the disease gets worse then what's there to protect?  You can't expect a company to keep you or advance you if you can't handle the position.  It must be exhausting to work for a company that seems so heartless  to screw you over for not being a healthy specimen.

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MurrayPD2    219

Yeah, I know I took a risk on advancement, but if I can't handle the job anyway, I have to be content with my limitations at this point.  I am actually doing better than I was because I was untreated before, so they can judge by my performance and feedback.  I just got a notice today that a manager wants to discuss my tasking.  So, we will see what happens.  I have faith the people here will be fair. 

 

If I get bad and I know I am not keeping up as I should, I will let them know. I am pretty content where I am.  No reason to stress too much about it. 

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miracleseeker    668

I compare this to a ballerina who gets injured and can no longer perform.  There is always something else waiting for you or you stay in your field and take a less stressful approach.

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stump    452

Would PD affect your ability to perform your job?  If what you do is not labor intensive and primarily a desk job then you should be ok right?  Let's say you cannot do your job once the disease gets worse then what's there to protect?  You can't expect a company to keep you or advance you if you can't handle the position.  It must be exhausting to work for a company that seems so heartless  to screw you over for not being a healthy specimen.

 

I have a desk job.  At this point PD is not impacting my ability to do the job.  We shall see what happens later, but in the mean time I can certainly handle my current role and am still capable of handling a major promotion.  As long as that remains true I see no reason to give them a reason to wonder if I'll remain capable long enough to be worth giving a promotion to vs someone else.  Once I need the protections (or when it's obvious to me that I will soon, and that I'll no longer harbor further ambitions) then I'll tell them.

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miracleseeker    668

Only if you stop performing at the level you have been would your employer think of replacing you or have you do something less stressful if they want to keep you. I doubt they want a lawsuit from you if they can help it.

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stump    452

Once I get to the point I can't do my current job anymore I'd be going out on a disability retirement.  It's why I have the insurance.  I think they only require you to take a lesser position if you are qualified and capable of doing it and it pays at least 80% of your previous job.  If the only jobs you can still do pay much less than that, and I'll have to re-read the policy, but I don't think they can make you take a position that pays 40% of what you used to make.

 

Now, as a desk bound analytical engineer will the motor symptoms cause me to become disabled?  Possibly, but as long as I can drive a mouse and type halfway decently, and drive myself to/from work (or get a remote work setup) I will have to keep going if that all that PD is doing to me.  What will cause me to go out on disability is more likely to be executive function problems and other cognitive impairment.  Given the kind of work I'm doing, even if I am still functioning at the 50th percentile compared to the overall population I probably won't be meeting expectations at my work.  But, given my education and other experiences I'd be hard pressed to find a job that didn't require such a high level of problem solving and multi-tasking and spatial processing so on that still paid more than 80% of what I make now.  I'm sure there are jobs like that out there, but once I've declined enough to not be able to keep going where I am now I probably won't be able to get through a new degree program, or other substantial training program that would qualify me for such a job either.

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MurrayPD2    219

Once I get to the point I can't do my current job anymore I'd be going out on a disability retirement.  It's why I have the insurance.  I think they only require you to take a lesser position if you are qualified and capable of doing it and it pays at least 80% of your previous job.  If the only jobs you can still do pay much less than that, and I'll have to re-read the policy, but I don't think they can make you take a position that pays 40% of what you used to make.

 

Now, as a desk bound analytical engineer will the motor symptoms cause me to become disabled?  Possibly, but as long as I can drive a mouse and type halfway decently, and drive myself to/from work (or get a remote work setup) I will have to keep going if that all that PD is doing to me.  What will cause me to go out on disability is more likely to be executive function problems and other cognitive impairment.  Given the kind of work I'm doing, even if I am still functioning at the 50th percentile compared to the overall population I probably won't be meeting expectations at my work.  But, given my education and other experiences I'd be hard pressed to find a job that didn't require such a high level of problem solving and multi-tasking and spatial processing so on that still paid more than 80% of what I make now.  I'm sure there are jobs like that out there, but once I've declined enough to not be able to keep going where I am now I probably won't be able to get through a new degree program, or other substantial training program that would qualify me for such a job either.

I am in the same position.  I do need to be mobile for labs right now, but that can change without an issue.  I got a laptop to do some tele-work if I have a bad day.  We worked out a plan together when I was concerned where things were going, but now I am actually doing better.  Having another person here with PD that is working part-time inspired me to explore my options.  I also got speech to text software for when my left hand isn't typing well.  So far, no complaints.

 

My boss talked to me this morning.  He was just giving me more work to do since another task is over.  No issues so far.  Again, like you, that can change. I am waiting to turn on this DBS and see what happens next.  Right now, I am wearing a cap to work to cover my scabs on my head. I assume it may bother some. The scabs are much smaller now and I assume they will be gone by next week. The only place I have them is the two cuts on the top of my head, so it feels like some odd horns growing up there. :)

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Lonnise    60

Hi Wearwear:

 

I'm a little late to the game here so I'm not even sure my response will be read or helpful, but here it is just in case.  

 

Whenever I think about sharing "weighty" information with others I first ask myself what I want them to do with the information.  Next I ask how I expect those I choose to share it with will react.  That usually helps me sort through with whom, when and how I will share the information.

 

I think trusting your gut is excellent advice and I also hope you can accept and truly believe that openly asking for help and support is NOT self-pity.  In fact, it's one of the most confident, self-advocating things you can do.  When newly diagnosed with a life-long and/or life-altering condition that may be unknown and a little scary, it's FINE to need and want emotional support as you sort through and choose how you want move forward.

 

Moreover, asking for "emotional support and a non-judgmental ear" let's those you choose to tell know that you trust them and aren't afraid of being vulnerable around them which strengthens any interdependent connection you already have.   It shows you trust them to respond in kind; and that them saying "no, I can't help you right now" but thanks for sharing is a sign of a very healthy relationship.  You can and obviously do what you need to to take care of yourself and you are confident enough to ask others for help when it really would be helpful.  In turn, they should feel confident to do the same.

 

Remember the great song by Bill Withers - Lean On Me?  Makes sense doesn't it?

 

Best of luck.

 

LHG

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