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vipowitz

impications of informing employer of PD diagnosis?

51 posts in this topic

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?

Now that it is with the EEOC they have 180 days to investigate. But the normal length is usually about 3 months at the most. After that then we either negotiate a deal or to court, it all depends on what the company wants to do.

 

Social Security Disability is based on the amount of work credits that you have accumulated throughout your life. I'm 41, and I fall 1 point shy of having the proper amount of credits so I don't qualify for either. I had to take a few years off to help take care of my father who also had PD. He died three years ago next month (July 21, 2008).

Edited by Gary K

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Hello,

 

Just wanted to mention, re the disc surgery, I have recently undergone surgery to remove part of a lower disc (L5) and a small amount of bone surrounding this. This was due to severe pain down my left leg (S1 nerve) that eventually left me unable to walk. I am very happy with the results so far. The pain has gone. My back is getting stronger through the exercises I have been given. I wish really that i had had the surgery earlier.....I was also very fearful of having it done, but because I left it so long, I now have numbness in my left foot and lower leg due to nerve damage. I'm told this may be permanant.

 

I am aware that I was attending one of the best UK hospitals for this surgery so was very lucky in this respect. My surgeon was excellent and gave me a lot of confidence and explained my options clearly.

 

kind regards

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Hello,

 

Just wanted to mention, re the disc surgery, I have recently undergone surgery to remove part of a lower disc (L5) and a small amount of bone surrounding this. This was due to severe pain down my left leg (S1 nerve) that eventually left me unable to walk. I am very happy with the results so far. The pain has gone. My back is getting stronger through the exercises I have been given. I wish really that i had had the surgery earlier.....I was also very fearful of having it done, but because I left it so long, I now have numbness in my left foot and lower leg due to nerve damage. I'm told this may be permanant.

 

I am aware that I was attending one of the best UK hospitals for this surgery so was very lucky in this respect. My surgeon was excellent and gave me a lot of confidence and explained my options clearly.

 

kind regards

Hope all continues to go well gazelle!!!

Edited by Gary K

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gazelle............thanks for sharing your experience.....I have intermittent numbness and tingling in the foot that I drag (right) and occasionally my left also. The orthos are indicating they want to do cervical spine surgery and have not even looked at lubar spine. I am in no pain at this time and want to avoid surgery if at all possible.

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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.

 

Hi Netgypsy, Wondered about your comment re: not driving at dusk. What is the problem? Thanks, Lin

 

Good luck!

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Thanks for the great posts. Most timely as my husband and I are facing these questions right now with his job. He was diagnosed with PD in 2005 and has done well but work is taking longer and longer which cuts down on his exercise and sleep which, of course, makes his symptoms worse. Seems like a difficult circle to get out of right now. His Movement Disorder Specialist and Internist have recommended a short term leave (4-6 weeks) where he could perhaps get some voice therapy, sleep, exercise, adjust medications, etc. Has anyone tried that? If so was it helpful? If you take short-term disability, does the doctor give the diagnosis to your employer or could we use the great words about "tremor" from NetGypsy? He works in a competitive "young peoples" business (he's 58) and has always been a top performer. His company is large and has just completed the fourth round of lay-offs in the past couple of years, leaving more and more work for fewer people.

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Thanks for the great posts. Most timely as my husband and I are facing these questions right now with his job. He was diagnosed with PD in 2005 and has done well but work is taking longer and longer which cuts down on his exercise and sleep which, of course, makes his symptoms worse. Seems like a difficult circle to get out of right now. His Movement Disorder Specialist and Internist have recommended a short term leave (4-6 weeks) where he could perhaps get some voice therapy, sleep, exercise, adjust medications, etc. Has anyone tried that? If so was it helpful? If you take short-term disability, does the doctor give the diagnosis to your employer or could we use the great words about "tremor" from NetGypsy? He works in a competitive "young peoples" business (he's 58) and has always been a top performer. His company is large and has just completed the fourth round of lay-offs in the past couple of years, leaving more and more work for fewer people.

I know this may sound strange coming from the situatican some that I am in now but trying to hide the diagnosis is not a good idea. Have the doctor write a letter to his employer and tell them what he has and that he is under his care for it. My situation is totally different as I had an assistant manager who thought he could do what he wanted and hide it. But soon he will find out that what he did will cost him his job and get my job back. Trying to hide it of make up names for it doesn't help. All that will do is have someone say that he can't do the job anymore. Say what it is. As I have said there are laws there to protect you as well as the EEOC to fight for you. My situation will be rectified and the truth will come out. Taking a short term leave would probably be a good idea. It will let your husband get some much needed rest and maybe adjust medications to be more effective. Don't let the stress get to him or you. I know that sounds easy, I let the stress get to me and all it got me was depressed and worse off then I needed to be. Remember there are always people there for you, use them every opportunity you get.

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Dear Golden01,

 

I wholeheartedly agree with Gary. I went through a voluntary redundancy process whilst still undiagnosed with PD but exhibiting a lot of the symptoms. I was in no fit state really to deal with such an important decision and it was life changing. I walked away from a twenty year career, a well paid job, medical insurance, a pension and health cover. I tried to hide all my symptoms because I didn't want to be seen as not 'managing' or 'coping'. With hindsight, if I had been more open about the problems I was experiencing, the redundancy process may have (in my opinion should have) been stopped until I had received treatment. I was diagnosed with PD just two months after leaving, and the financial impact has been huge.

 

Your husband is ill. It is not his fault. Like Gary says, there are laws to protect him.

 

Good luck

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Gary and gazelle66,

Thank you for your thoughtful answers. Your words provide a lot of wisdom and "food for thought". I appreciate your insight and willingness to share your experiences. For me, I've had to put some effort into getting over my aggravation that PD is impacting our financial future at the same time the economy took a dive (we've both had salary cuts, furloughs, etc.). I've gotten over being mad and think I can be of better help to my husband as we get on a path to making the best decisions. Because he's been able to manage his symptoms fairly well, I think we've been able to stay in denial about the impact the disease might have for our future. That isn't necessarily a bad approach but is only useful for awhile. Your responses have helped a lot. Thank you again.

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Gary, A couple more questions for you . . . Did you work for a big company or a smaller one? Also, once EEOC takes your case, are there ongoing costs to you during the process? Thanks for your answers!

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Gary, A couple more questions for you . . . Did you work for a big company or a smaller one? Also, once EEOC takes your case, are there ongoing costs to you during the process? Thanks for your answers!

1 - I worked for a big company. Can't say who beacuse my case is not in public record yet.

 

2 - The filing with the EEOC is a requirement for discrimination cases. My attorney had to file the Charge Of Discrimination with them first so they can inverstigate, then we go on to the courts. There are no ongoing costs it is a part of the lawsuit process.

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Golden - I took 9 weeks of family medical leave so I could rest both mentally and physically. I was honest with my employer regarding my PD diagnosis and left my boss know that my intent was to return to work after I was rested and able to get my medication to work.

 

I've since gonee back to work. I asked for a reasonable accommodation of a flexible work schedule, and my doctor made that a condition of my return to work. The biggest challenge is the fatigue. If I don't have an early meeting, I go in a little later and give meds a chance to kick in. If I get fatigued, I go home. However, I know that I need to do work at home if I don't put in the hours at the office. This works for me for the time being. I'm very luck because my employer has been great.

 

Good luck

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jenette. glad to hear that you are keeping on. I haven't informed my employer yet, waiting to see a movement disorders specialist in a couple of weeks, but i find that although my job is generally highly stressful, it keeps me from thinking about my situation as much, whch is a godsend. Have a great weekend

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Oh my . . . what a day it has been. My husband met with his boss to explain that he had PD and that he'll be taking a 5 week short term leave of absence. He will have the letter from the doctors next week as we were waiting to learn when his voice therapy could start (got the info on that just this morning). After my husband shared the info, his boss explained that he was being reassigned to a job with with much more rigid hours and responsibilities including 7 AM start time on three weekdays and 2-11 PM shift on weekends (currently he works weekdays with very flexible hours which has made working with his PD manageable). Since he hasn't already turned in the paperwork for accommodations, not sure what options he might have at this point. He is moving ahead with the 5 week leave starting at the end of the month which will give us some time to figure it out, get some rest, and adjust his meds. Any thoughts or suggestions?

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sounds fishy. If he told his boss first, then was told he was being reassigned, he can claim retaliation. Especially if he hasn't had performance problems.

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The performance may be the issue. The PD has slowed him down and he's compensated by working longer and longer hours. It may not have been enough. He's recognized the change which was why we decided on the short term leave to get meds adjusted, rest, have voice therapy, etc. He's been working 14-16 hour days and sometimes 7 days a week to keep up with his workload. As his MDS has said, even people without PD can't work those kind of hours without having an impact on performance and health. We've learned one of his medications (Artane) may be causing "mental cloudiness". The MDS doesn't want him to stop it until he switches to something else which he'll do when he takes his leave. The "mental cloudiness" is part of why he's worked longer and longer hours. He's tried so hard to not let the PD show or impact his work, the changes today are a big blow. The short term leave will be a good thing and give him a chance to regain some energy. He works in a "young peoples" business that is fast paced and competitive. Today, he said that he feels like an old horse put out to pasture (yes, he was raised on a farm!).

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Oh my . . . what a day it has been. My husband met with his boss to explain that he had PD and that he'll be taking a 5 week short term leave of absence. He will have the letter from the doctors next week as we were waiting to learn when his voice therapy could start (got the info on that just this morning). After my husband shared the info, his boss explained that he was being reassigned to a job with with much more rigid hours and responsibilities including 7 AM start time on three weekdays and 2-11 PM shift on weekends (currently he works weekdays with very flexible hours which has made working with his PD manageable). Since he hasn't already turned in the paperwork for accommodations, not sure what options he might have at this point. He is moving ahead with the 5 week leave starting at the end of the month which will give us some time to figure it out, get some rest, and adjust his meds. Any thoughts or suggestions?

Golden, I would recommend that you talk to an employment lawyer and tell them your story. This sounds all too familiar.

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Thanks for the advice, I appreciate your words of experience so very much.

 

The official paperwork will come from the doctor next week, we thought the short term disability was a "slam-dunk" but it may not based on the company that carries the policy (firm gives just 5 days sick leave and then you go on short term disability which requires insurance company approval). The new work assignment won't start until my husband's short-term disability is over (5 weeks). We hope with rest, exercise, medication changes, voice therapy, etc., he'll be in a better spot than today.

 

Then if this wasn't enough, I learned today that I have breast cancer. Will have surgery and probably radiation soon. I guess when it rains, it pours. Taking it one day at time or maybe just five minutes at time, is our goal for today.

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You certainly do have a few too many challenges. I'll pray for you both. I'm sure the rest of the group will do so also

 

God Bless

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Thanks for the advice, I appreciate your words of experience so very much.

 

The official paperwork will come from the doctor next week, we thought the short term disability was a "slam-dunk" but it may not based on the company that carries the policy (firm gives just 5 days sick leave and then you go on short term disability which requires insurance company approval). The new work assignment won't start until my husband's short-term disability is over (5 weeks). We hope with rest, exercise, medication changes, voice therapy, etc., he'll be in a better spot than today.

 

Then if this wasn't enough, I learned today that I have breast cancer. Will have surgery and probably radiation soon. I guess when it rains, it pours. Taking it one day at time or maybe just five minutes at time, is our goal for today.

I was diagnosed with breast cancer in 2003. There is a good discussion board at Cancer Survivors Network. Or you can ask me. Good luck and it'll be ok.

 

marcia

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Thanks for the advice, I appreciate your words of experience so very much.

 

The official paperwork will come from the doctor next week, we thought the short term disability was a "slam-dunk" but it may not based on the company that carries the policy (firm gives just 5 days sick leave and then you go on short term disability which requires insurance company approval). The new work assignment won't start until my husband's short-term disability is over (5 weeks). We hope with rest, exercise, medication changes, voice therapy, etc., he'll be in a better spot than today.

 

Then if this wasn't enough, I learned today that I have breast cancer. Will have surgery and probably radiation soon. I guess when it rains, it pours. Taking it one day at time or maybe just five minutes at time, is our goal for today.

We are all with you, Golden. Thoughts and prayers to you both.

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Thank you all for your kind words and prayers. I appreciate your concern more than words can say. I've always been one that is good at living in the moment and, in general (especially since my husband was diagnosed with PD), wanting to slow time down. Now, I want time to go faster, at least the next couple of months. Wish I could wake up and it would be Christmas!

 

One bright side, my husband will be on his 5 week leave when I have surgery and start radiation. Will be easier for both of us than if he were also juggling his work schedule.

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My case has been given to the EEOC and they will now investigate.

 

Gary, Any update on your case with the EEOC? This is such an important discussion topic. I've been off the Forums for awhile and wondered what has happened with your claim against your employer. The "Work" discussion thread has had some information about making decisions regarding continuting to work and it made me think of how helpful your posts were to me and my husband last summer.

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