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vipowitz

impications of informing employer of PD diagnosis?

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Having recently (3 months) been diagnosed with PD,I am concerned with the implications of informing my employer. Have a stressful joband want/need (financially) to be permitted to continue working. Have slight gait impairment and minimal right hand tremor that do not affect my job performance (which is exemplary). Would my employer somehow be concerned with their workman's comp liability should I fall and be injured if they had knowledge of my condition? I have no balance problems. Anyone have any experience with this situation?

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Don't hide it from them. Tell them the truth up front. Every situation is different. I was diagnosed in 2009 and there was no problems until recently. But in my case I had a jerk of a boss who decided to put more and more work on me. He didn't want to deal with my PD anymore so he made sure I got worse. Just last month I got an option to either resign or be let go. Now I have a discrimination lawsuit in progress.

 

Know that there are laws protecting you with your job. Not everyone is like the people I had to deal with. You just might have someone who understands and will help you. But remember like I said there are laws protecting you. You are still early in you diagnosis, everyone's progression is different. A little advice though don't let the stress get to you, I let it get to me and take it from me it doesn't help. Stay calm, relax, and always have people around you to help you through it.

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I was diagnosed in February after a year of hell. I went to 4 neurologists before I was finally diagnosed. It was so bad that I was walking with a cane. My boss and colleagues were watching me deteriorate the whole time. When I was diagnosed we were all relieved to find out what was wrong. I immediately took medical leave so I could rest both physically and mentally, and get started on the right medicine.

 

I chose to tell my boss and colleagues. PD is a disability and there are laws protecting you and, if necessary, you have the right to ask for reasonable accommodations. I am an executive at a financial services company. I asked for flexible work schedule with ability to work from home on occasion. Stress affects PD and the fatigue at times can be overwhelming.

 

I'm very lucky in that everyone at work has been nothing but supportive and understanding. The Sinemet has made a huge difference for me. I'm only 49 and not ready to give up my career. Being open and honest is the best thing to do. There will be days that I struggle with PD at work and it's good that everyone understands what's going on.

 

If your work performance has been excellent and you are a good employee, any reasonable employer will be accommodating and understanding. If they aren't, then remember that there are laws protecting you. Good luck!

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jenette......thanks for the reply. What medications did you start with and how have you tolerated them? Any results yet?

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gary....

 

what symptoms did you have when you informed your previous employer? Were the neuros you saw in the port st lucie area? how about the attorney taking your case? have you started meds and which ones?

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I started with Sinemet 25/100 three times a day. It made me sick and had panic attacks. So I cut the pills in half and tried that for a few weeks. I've been on a whole pill since April and feel much better. The unbearable pain has subsided and I'm walking without a cane. Everyone at work comments how much better I look. I still have fatigue, constipation, and some pain. But it's manageable. I see the doctor in July.

 

How are you feeling? Have you decided to tell your employer?

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hi jenette

 

glad your symptoms are more manageable. I am in no pain,have numbness in right foot,(I drag it) arthritis in big toe,occassional numbness in left foot, have right hand tremor, and maybe right leg tremor in hamstring and calf muscle, but its more like trembling at times than tremor. I am going to top neuro/movement disorder specialist at Cleveland clinic next week. othopedic surgeons tell me I have 3 messed up cervical discs and they believe "95%" of my problems can be gone with cerivical disc surgery(fuse 3 discs)........they "doubt" that I have PD. 2 Neurologists tell me I have PD and I'd be nuts to let "those guys" touch me, let alone cut me. Haven't decided about employer issue, waiting for more advise and Cleveland's opinion. I'm truly confused. Thanks for asking

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There's a personal story on this website, "Five Things I Think I Know About Surviving on the Job with Parkinson's Disease," that addresses a number of issues related to your question.

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I have degenerated discs in both my cervical and lumbar spine. I get epidural steroid injections every 3 months which work great. Surgery should be last resort. What treatment have they offered you other than surgery?

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If I had it to do over again I'd go on azilect and sinemet from the beginning since they work so well BUT it took me time to get the right dosage and deal with falling asleep after I eat. It was so bad I would be out cold in a restaurant. Provigil, a narcolepsy drug worked very well for that. A colleague has young onset PD and finally told all of us that he did have it and he took early retirement at the end of the year. But the funny thing was, after a couple of years he had dbs and it worked so well he was totally normal again and was afraid he'd lose his disability.

 

So be aware that the drugs available today can keep you normal MOST of the time for quite a long time, especially if you optimize your health. But again - you may have med crashes so whether or not you tell your employer quite frankly seems to be a safety issue. I, for example can't drive after I eat even now. It's just too risky. Also people with PD are not supposed to drive at dusk. They do fine during the day and at night but dusk causes problems.

 

As long as your symptoms are totally under control and you can do anything you want without med failure, you're fine. But if I were a crane operator for example I think I'd look into a different line of work if I had a PD DX.

 

Good luck and know your legal rights in the state where you live.

 

What I have done is simply told most people that I have inherited my mother's tremor condition and am taking medication that has some side effects. This is totally true. I just don't put a name to it. You can go the middle road and tell your boss that you have a tremor condition. That it is being treated successfully and you don't expect it to cause any problems but that on occasion you may shake a bit or have bit of a mild med reaction. Not putting a name to something sometimes is easier on everyone.

 

Good luck!

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jenette...............no offers other than surgery.......will see what cleveland clinic has to say next week.....seems to me surgery is nOT an option I would consider at this time

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netgypsy........ thanks for the reply and advise. I need to work or i'm kaput financially, early retirementnot an option. do you believe the narcolepsy was the result of the azilect, the sinemet, or a combination of both? By the way, I'm in florida.what's dbs?

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slapdasch2.......thanks for the reply.I can't find the story you are referring to. Can you please tell me how to find it?

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gary....

 

what symptoms did you have when you informed your previous employer? Were the neuros you saw in the port st lucie area? how about the attorney taking your case? have you started meds and which ones?

 

 

My symptoms were basically the tremors. But I began to slow down a little more as they piled the work on. The biggest problem was the stress that was making my symptoms twice as bad. My doctor that I see it at the University of Miami Medical School. My attorney is in Jupiter. I have been on meds since the beginning Jan 2009. i now take Azilect 1MG 1x/day, Requip XL 2MG 1x/day, and Pristiq 50MG 1x/day

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gary, thnx for the reply

 

did your attorney advise you to inform your employer while you were still on the job?

I got my attorney after I was let go from my job. My doctor in Miami advised me to tell my employer. He even wrote letters to them to tell them and that I was under his care for it. My employer was a total different story.

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thanks for the reply gary.......did your attorney say it was good that you informed your employer? If you had to do it over again, would you do anything differently? How have you adapted to the meds? are those meds the ones you started on? any side effects?

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thanks for the reply gary.......did your attorney say it was good that you informed your employer? If you had to do it over again, would you do anything differently? How have you adapted to the meds? are those meds the ones you started on? any side effects?

Yes my attorney said it was good to inform my employer. She told me it was the right thing to due. If I had to go back and do it all over again I would do it the same way I did. As my attorney has told me there are laws that are in existence for just this. The federal Americans with Disibilities Act as well as state Civil Rights Act. My employer was completely wrong in what they did. All they had to do was follow the law.

 

I have adapted well to the meds. I started with the Requip and then started the Azilect about 6 months later. The one thing that I get affected with is fatigue. I do get tired about midday and I need to take about an hour rest (nap) and then I am able to reenergize for the rest of the day. The meds keep tremors under control, it is just when I am under stress then the tremors show.

 

Just remember no matter what you do those laws still protect you. Thats why they were enacted.

Edited by Gary K

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gary.hope you have had a good week. What does your attorney say the time frame looks like? What about Social security? Can you get an enhanced amount or earlier full retirement amount if you are deemed disabled? Is it age sensitive? I'm 64. You?

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