Career Dilemma

[dc45]

Hi Everyone, I'm looking for some advice and experience from the group. I have yet to tell my employer about my PD, however with symptoms becoming more noticeable (recently work has taken much of my time to exercise the way I should) I feel the time is near that I must tell or someone is going to say I'm drunk all the time! The dilemma, I'm in my mid-forties and have a good job for a really good company, however I'm on contract but hope to be hired on permanent. I just got a new boss today and he seems like he would be on my side but it's hard to know. What should I do? I need the $ and benefits for a while yet. I know there are laws but those could be bypassed by just letting my contract expire. Thoughts welcome. Thank you

[qazwsx11]

I’m in a similar age and situation age however I am full time. Before I got diagnosed there was time when people would notice my gate and I had a default neutral answer. Something like “That’s the way I am” or some other dismissive answer. I was able to come up with ways to cope with my paralysed fingers on the left hand as well . My company and manager were very supportive but I never told them the dx. The only time I shared in a casual conversation came to bite me in a promotion choice that was not done in my favor so I decided to concentrate not on telling the dx, but to share my physical limitations and the accommodations I need to cope. E.g. time for exercise, dr appointments. Etc. This seems to be a better approach.

I also work in tech so the last thing I want is someone questioning my mental abilities, which after the dx became sharper then ever. Nothing like a the realization of shortened horizon.

My suggestion for you is do not tell your dx until you’re hired. If someone is questioning that you look like drunk tell your manager that you are not drunk and leave it at that. It’s non of their business and frankly really ignorant.

Are you taking meds to help you with symptoms? If not find out what works. My meds helped me so much that none can really tell I have an issue most of the time. Plus my functional restrictions are gone on meds

Hope this helps. Stay strong!

[honeycombe3 in reply to qazwsx11]

Hi dc45,

What an excellent question. I was a headteacher when I was dxd 13 years ago, age 56 working with pupils who had severe mobility & communication problems. This was demanding physically & mentally. Being at the start of treatment my symptoms were more pronounced than they are now & less controllable as I hadn't developed an effective drug/treatment regime. I was astonished to find that many of my staff did indeed think I had hit the bottle.

Using the same strategy that we did with our pupils, I told the staff as soon as I found out what they were thinking & explained what was happening & what might happen in the future.

In UK most schools are run by the State & we have fixed terms & conditions which cover most aspects of employment law (the Burgundy Book). When I told my employer this started a chain reaction: I was referred to the occupational health service & negotiated my career prospects with them. As they did not want to lose the experience they had invested in my development I was seconded to central government to help set up a support service for families of children with Special Needs. I worked at this, which I loved, until PD forced my early retirement after over 10 years.

Sorry this was a long reply but I feel that it is important for people to see beyond the immediate. Life doesn't stop because you have PD but you have to be realistic about your life goals.

[dc45 in reply to honeycombe3]

Hi honeycombe3 thanks for the info on your experiences with this issue. Not a worry that its long some good hope offered in the details! Cheers!

[jeeves19 in reply to honeycombe3]

So you endured the education system with PD until 66?! You must certainly have found your vocation. I can't wait to get out. I'm so disillusioned with the factory system re GCSEs, Ofsted and my Head has been particularly unhelpful with my condition.

[dc45 in reply to qazwsx11]

Mishop, thanks for your feedback, my situation does sound similar. However I apparently haven't found the right cocktail of meds yet as I find it hard to consistently mask symptoms. So to answer you yes I've been seeing a movement disorder doc in Chicago and I currently use the Neupro patch and amantadine x2 per day. I'm not sure what I should do yet. I'll weigh all my options after I figure them out. Thanks again

[qazwsx11 in reply to dc45]

Have you tried sinemet? I had a neuro who was hesitant to do it and started me similarly on agonists. They did not do anything for my symptoms. Then I switched to a professor in one of the top university hospitals in the world and he outright said that in my case agonists will do little. Switched me to sinemet and I am back to a very good state. On my last assessment he said that I basically scored as a healthy person. I still feel the ups and downs but at least I have few streaks where things work well and I can work, exercise, have sex, even dance.

I know this is not forever but if it gets me a decade to support my family until my daughter graduates from high school and maybe college, I’ll be really happy.

Find a neurologist specializing in Parkinson’s.

[dc45 in reply to qazwsx11]

I have not tried sinemet yet but I will discuss options on my next visit. Maybe that's my issue my body doesn't respond to the agonists. Currently I go to the movement disorder clinic at Rush University

[richardo123 in reply to qazwsx11]

I am 57 years old and My last visit with the neurologist I was told I was on the max of medication he could give me I asked him how much longer he felt I could work he said maybe two years . I have been off since April with a herniated disc and it is finally coming around. Thinking about the two years of work I thought about the fact that I have two grandchildren that I would like to enjoy so I decided to apply for LTD based on the fact that I've had PD for 14 years I love my job but I also love my grandchildren and it's been a roller coaster ride trying to decide what to do. my wife figured out going on LTD my take home pay would almost be as much as my take home from work so I applied for the LTD back in August and I had a phone interview from the insurance company about a week ago only to find out that they want to submit more paperwork for my doctor to fill out. THEY don't make it easy for you to get the benefit. we have been living off my wife's 3 day a week job . I've been experiencing anxiety stress and frustration. I have always said to myself I need to concentrate on what will give me quality of life. I decided this decision would do that. I have been very fortunate in that my employer is backing me up, a rare commodity these days. here's to hoping a decision is made soon. So moral of my story is do what what will best give you quality of life you will enjoy. I've always said to myself I will control the PD PD will not control me and I'm sticking to my guns no matter how I feel. Have a great day and keep your head up. Hope with me that things get settled soon.

[Sleeplessparki]

Hi dc45,

I was 50 when I was dx and I was at a similar cross road as you are today. It can be scary, in my case I was concerned that they would somehow find away to get rid of me or lay me off. So I found a good ERISA lawyer and he recommend I give to my boss a letter, that he essentially ghost wrote for me which basically stated that I was in the early stages of PD and at some point in the near future that I may need special considerations as it related to work. This ultimately protected me under the ADA rules and from that point on they treated a lot better. In my case there was also a long term disability policy that I needed to protect as well. But my recommendation to you is to get a good lawyer to advise you. It was the best 6k I ever spent.

Best wishes

[qazwsx11 in reply to Sleeplessparki]

Great tip. I’ll find a layer and compose such letter.

[Marg52]

If it’s getting harder for you cover up the illness. You should say something soon it’s better to be honest with him, then go in one day and say I can’t work anymore cause I’m sick. Good luck I say this cause my husband tried to hide it from friends of our till they started to ask questions we had to tell them.

[Astra7]

I wouldn't say anything until you get made permanent. Make up some excuse if someone says anything - like you have an ear infection which effects your balance etc. People don't understand Parkinson's and will assume you won't be able to do anything. I think they might be reluctant to put you on permanently especially if they pay your healthcare (are you in the US?).

I've told almost no one and just blame my limping and stiffness on tennis and old age!

[qazwsx11 in reply to Astra7]

Totally with you on that astra7

[NancyJHP]

I'm in my 50's, but have similar issues to yours. I've had multiple jobs in the last five years, before that I was always employed for a long time. I wonder what my employers think is wrong with me, if they think I'm on drugs, or I'm a drunk, or what. No doctor I have spoken to seems very sympathetic about writing up the necessary paperwork so I could get social security disability income. My physical problems are probably not as noticeable as my mild cognitive impairment (I forget what I'm doing, forget people names, don't recognize people I work with). I live in the NC, in the US, and there isn't much of any type of employment protection here, sick or not. If I were you, and I thought I stood a chance of getting hired permanently, I would keep my mouth shut until after I was hired permanently. I would maybe casually mention to my boss something like, I must be getting old, I feel so stiff after sitting awhile, at the end of an unrelated work-type conversation. Now, once you are hired permanently, the letter about the disability sounds like a great deterrent to getting fired. The employer that did fire me made up another reason to get rid of me, that wasn't true, to avoid bringing up the medical issues. I worked at a law firm and they routinely fired everyone who got sick to keep their insurance premiums down. My frequent doctors appointments were pretty noticeable.

[S70AWD]

I'm afraid I have to agree with those who say wait until you are made permanent. The general lack of knowledge about PD may have unwarranted but serious negative consequences on your career. It shouldn't be that way, but this is the real world we're talking about.

[tomatera in reply to S70AWD]

Yes, bottom line it will not help your chances of becoming permanent at all. While it may feel good for the soul it will not help. I wouldn’t do it.

[Lionore]

Since you are in the US, I would agree with previous replies to wait until you are permanent to disclose your PD, and do what you can to speed up the process, for several reasons. You will then be entitled, at some point after your hire date, to whatever benefits are available such as short and long term disability. When you do have to take early retirement, your employment will count toward your Social Security Disability benefit amount whereas contract work will not count as much. This is because employers have to pay their share of the SS tax. I agree with others; find a well recommended employment attorney!

I held off retirement until 69 since I’m the primary breadwinner, kids grown and established but my partner, while incredibly supportive in countless ways, never earned much. I wanted to have a decent amount set aside for long term care needs.Had I needed to work even longer, I would have needed to go on C/L (Sinemet) which masked most symptoms; I held off on that until a few months ago. Is Sinemet an option for you? Can you discuss with your MDS?

When to disclose and when to retire, if going part time isn’t possible, is a very personal and individual decision. If you are too tired to exercise due to your work schedule, there is the possibility that your PD will progress more quickly than it would if you exercised consistently. Try to think of exercise as a second job and eliminate other activities if necessary. Can you walk on your lunch break or first thing in the am? Not easy choices, unfortunately.

[Maxkas]

I can only tell you from experience what happened to me. I was also under contract once my employer found out that I had Parkinsons it was all downhill he didn’t renew my contract And even though I was doing as good a job as I had always done with a bit more shaking my contract was not renewed “due to budget cut backs” I Iwas devastated my career was finished I started to doubt myself and a lot of my self-esteem Flew out the door But eventually My husband and I decided to look at the silver lining And we hit the road and did a whole heap of travelling which I wouldn’t be able to do now that I’m at retirement age

I was 53yrs old when I was diagnosed I’m now 65yrs old with lots of great memories of our around the world adventure

Good luck with your decision

Kas

[sunvox]

I have SCA1. SCA1 is a neurodegenerative disease that is in many ways similar to Parkinson. I got rid of my few symptoms. I helped my dad and my aunt go from a wheelchair to a walker. I believe many people who are in the early stages of a neurological disorder are capable of managing their symptoms and delaying onset for a long time by using a combination of therapies.

This is an opinion and not a proven scientific fact, but the principle is captured in this study and in this lecture:

vimeo.com/191664871 - This is a video every patient with Parkinson's needs to watch.

ncbi.nlm.nih.gov/pmc/articl...

Also, are you up on the latest research on Exenatide?

If it were me I would use a combination of:

1) daily exercise including yoga and running and weights

2) a diet high in cruciferous vegetables, low in carbs, and low in calories

3) supplements that I had researched and discussed with my doctor

4) medicine determined with the help of a doctor

This is my routine:

1) exercise 5 days a week minimum

2) a diet low in carbs and calories, mostly vegetarian, and rich in cruciferous vegetables.

3) supplements including trehalose, Niagen, and ptersotilbene

4) 2 cups of green tea daily

5) physical therapy (initially I had therapy for balance) I do not need it now.

I am 51 years old with 3 kids and a wife and I'm the primary bread winner. I refuse to accept that I have no influence over my condition and am choosing to fight with every tool that might be helpful, and I know that for myself the change in my body has been nothing short of miraculous. All those subtle signs that aren't even part of a diagnosis today are gone: fatigue, difficulty talking, declining strength especially in my legs, changes in my hand writing, and balance trouble.

Bottom line: There is a wealth of information and things that can help and there are numerous individuals using many various means to keep their illness at bay. I believe anyone can do the same if they have the discipline and support of others.

I have a great deal of animal model research and clinical trial research on supplements all of which is pertinent to Parkinson's. Feel free to send me an email if you're at all interested.

[Hil101 in reply to sunvox]

I'd be interested in getting this info from you please. My partner has had some success along the lines you mention but we may be missing something

[Serenity_finaly-1]

MOVEMENT...MOVEMENT...MOVEMENT

Parkinson's is so much more than movement. Word substitution works both ways, communication lost.

Case in point- I asked my wife if she wanted a bean burro. It was a simple yes or no but you know women. After discussing her feelings on the situation I walked away with yes get me one. I returned with one and she asked me why when it was obvious her response was no.

[bassofspades]

If anyone asks or comments i just tell them i have a neurotransmitter imbalance. It's not a lie.

[ddmagee1 in reply to bassofspades]

I like that answer! Neurotransmitter imbalance sounds like a good explanation to give, when people get inquisitive! By the way, I like the name bass of spades. I am curious how you came up with that. You seem to have a gift for words. That surely comes in handy at times.

[bassofspades in reply to ddmagee1]

Thank you!! I am a Bass Guitar player, best in the world, and Bass Of Spades was the name I came up with for my work as a recording artist. Never made it to the big time though.

I work in Inteventional radiology and cardiac catheterization assisting doctors with procedures. Yesterday one asked me why i seem to move at my own pace (slow) and i said because if i move fast my hands shake. He asked why that is and i told him it was because of a neurotransmitter imbalance. He totally bought it so im sticking with it!

[ddmagee1 in reply to bassofspades]

Thanks! Amazing! I am a trained classical musician-vocalist, so I was just wondering. It must be challenging for you at times, working with your hands and dealing with shaking ( yes, I have that problem too ). I admire your perseverance and I can imagine it would be very demanding work, assisting professional physician’s with radiologic and cardiac cath. procedures. Having a sense of humor like yours, will always be in your favor! Best to you in all you do! Thanks so much for sharing!

[bassofspades in reply to ddmagee1]

I can still play, no problem except certain classical guitar passages.

[MBAnderson]

a lot of articulate and thoughtful answers here. personally, I come down on the side of taking care of yourself first and do whatever you need to to become permanent, but without lying about your condition because a misrepresentation may come back to bite you, that is, disqualify you for benefits. You can figure out how to do that by giving non-answers. health issues are personal and private and there is no legal, and I don't see any ethical, obligation for divulging in front what your personal health issues are. I have said the coworkers, "I don't discuss my health issues."After you say that a couple times, they stop asking. where do you draw the line? Do you have to tell your coworkers/employer you got hemorrhoids, torn rotator cuff, diarrhea? my attitude is, if you can do the job, your health is none of their business. lastly, your PD may not be an issue/impairment, i.e., it may become a moot point if you find a regimen that works for you.

[dc45]

Hi Again All, well the votes, opinions and thoughts are in and there seems to be a consensus, actually it's almost unanimous (in this small issue at least). I definitely should not tell my employer about the PD as a contractor. Then IF I get hired to a permanent job I should wait at least for a while until I have things legally covered.

Thanks again for all the experiences, stories, and advise. This really helped me change my mind and I think it is the best thing for me right now. Btw, I now think I won't get hired to a permanent position at this current company, just have a bad vibe after the meeting with the new boss. Sooo I will be looking a lot harder again!

[sunvox in reply to dc45]

Any progress on the job search?

[dc45 in reply to sunvox]

Unfortunately no, had a lot of activity and good amount of interviews for a while but so far no offers. It's getting a little frustrating. The contract job I was working was cut off short (as I somewhat expected) so things are getting tight. Keeping positive that something will break for me soon. Thanks for asking.