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Starting New Job..Do I need to disclose?


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#1 eaglewoodwill

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Posted 18 November 2013 - 09:14 PM

Recently diagnosed 10-17 with PD (left side stiffness, tremor and rigidity).  Began Azilect last Tues.  No relief or side effects to date.  I have started a new job and was wondering if anyone had any thoughts on disclosing my diagnosis to my new employer.  My symptoms are mild to date and as of this writing I need no special accommodations.  I work from home mostly.  the only accommodation I would like is the ability to take my walks and keep moving!  Thanks for your feedback.



#2 PatriotM

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Posted 19 November 2013 - 06:17 AM

I would not disclose. Put yourself in your new employer's shoes. You've got a new employee who didn't disclose before he was hired and now is disclosing that he has a serious, incurable disease. That's going to sound like a huge liability to the employer. The easy thing for the employer to do is find a way to get rid of you.

Diagnosed 9/2013

Not taking any PD meds (stopped taking Mirapex due to fatigue)

Using exercise to battle PD

Walk minimum of 12,000 steps a day which improves rigidity,balance, etc (everything but tremor)


#3 christie

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Posted 19 November 2013 - 06:58 AM

Since your symptoms are mild and you don't need any accommodations, there's no reason to disclose your condition. You may not need to do that  for years to come.


-English is not my first language !

-Aged 39. Diagnosed at 35.

-Currently on madopar (levodopa and benserazide, 500mg daily) and Azilect (1mg daily).


#4 young_dad

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Posted 19 November 2013 - 12:36 PM

There's no reason to disclose.  However, I did disclose during my interview for my new job and I felt better for doing it and less stressed.  However, it might depend on what type of job you are doing and what type of company you are joining.  I wrote about my experience here.  I still am glad I disclosed and really like my current boss all the more for his response when I did disclose and for his support since I hired on.



#5 metfan31

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Posted 19 November 2013 - 12:40 PM

I disclosed at work and nothing has changed. My manager just asked me to let him know if I need anything.

#6 Donald Ennis

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Posted 19 November 2013 - 04:09 PM

unless it is effecting your work, no need to disclose. if your working from Home and no one ever sees you anyway, I wouldn't disclose anything unless it effects your work.



#7 mb26645

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Posted 19 November 2013 - 09:52 PM

I was in my new job for 10 months before I was diagnosed. Mind you, in those 10 months I had no clue what was wrong. When the diagnosis did come down I decided to keep it a secret. My first disclosure was a semi-official one to my manager, meaning that I kept HR out of the picture. This was to accommodate what I call "soft" requirements such as a more flexible work schedule. My next disclosure was to HR, this one being the official one that included a note from my doctor specifying my condition.

That's where I am at - 6 years after being diagnosed. I am not sure what's next but my main challenge today is keeping up with the pace at work. I have monthly meetings with my manager - this is where I try and communicate my needs and challenges.

- marc

#8 Beau's Mom

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Posted 20 November 2013 - 12:53 PM

Not all managers are understanding. Mine told me if I couldn't get the job done, maybe I should be looking for another job (a totally illegal and insensitive thing to say to someone who has just disclosed a debilitating illness). I believe HR is the best route to take, because they know the laws protecting you and, unless they want to invite a lawsuit, would never violate the Americans with Disabilities Act. I've heard some sad stories about folks who waited too long to disclose and lost their jobs because of poor performance issue.

 

Another benefit to official disclosure is that it establishes clearly that there may be a need for accommodation now or later. As things progress, this documentation will become essential in establishing criteria for disability both from the employer and Social Security Disability Insurance. Documentation of how your condition affects your ability to work may make approval more swift when that time comes. It's an uphill battle without good documentation. 


I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

 

First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.

Diagnosed December, 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.

 

Current medications at age 62: Sinemet 25/100 ODT every 2.5 hours while awake (7/day). One Sinemet 25/100 CR between midnight and 4 AM. Trazodone 200 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 115 caregiver hours/month keep me sane.

 

All of the above subject to change based on progression, stress level, and dyskinesia. Whew! I'm glad I finally wrote that all out.


#9 afroney

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Posted 25 November 2013 - 12:01 AM

Not all managers are understanding. Mine told me if I couldn't get the job done, maybe I should be looking for another job (a totally illegal and insensitive thing to say to someone who has just disclosed a debilitating illness). I believe HR is the best route to take, because they know the laws protecting you and, unless they want to invite a lawsuit, would never violate the Americans with Disabilities Act. I've heard some sad stories about folks who waited too long to disclose and lost their jobs because of poor performance issue.
 
Another benefit to official disclosure is that it establishes clearly that there may be a need for accommodation now or later. As things progress, this documentation will become essential in establishing criteria for disability both from the employer and Social Security Disability Insurance. Documentation of how your condition affects your ability to work may make approval more swift when that time comes. It's an uphill battle without good documentation.


Boy... If I had a supervisor that said something that nasty, I'd knock him out the day they walked me out. "Oops! Myclonic jerk!". Haha.

#10 bjenczyk

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Posted 10 December 2013 - 11:28 AM

I disclosed at work, but I have been there 10 years and knew the people I work with. I disclosed because I am more comfortable, and less stressed, having people understand why they get emails from me at 3:00AM, why I leave the office every day by 3:00 PM, why I am shakey sometimes, etc. In other words, I disclosed for my reasons, not anyone elses.

If I were in your situation I would not disclose unless it becomes necessary to do so. Necessary should be defined by your needs, unless your condition affects the safety or performance of others, or the lack of knowledge could hurt your employer.

To me this really is a very individual choice. If I were interviewing for work now I would probably disclose in the interview. I would do so because I need some special accomodations, because I want to be comfortable advocating for PD sufferers, because I am less stressed when people understand the reason for some of my symptoms, and because I would not want to work with people who can't deal with me

Dx'd 3/12 @ 48. Symptoms 7 years prior.
carbidopa/l dopa 25/250 6x daily, CR 2 pills at bedtime
No DaT scan, normal MRI. Dx'd by observation of neurologist,

Symptoms: left side rigidity when "off", sleep disruption, no sense of smell, minor fatigue, back pain

 

Still an optimist - what is wrong with me?


#11 Pawsswassus

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Posted 13 December 2013 - 02:03 AM

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#12 deborah

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Posted 14 December 2013 - 11:06 AM

I had been on my job for years and refused to tell them at first.  When the trembling was really bad I told the person I was working with on the project that I was in the process of being diagnosed but they didn't know what it was.  My friend who works for a disability attorney said that I should tell them because if my performance should suffer and they called me in to fire me because of it that at that point it is too late to tell them and they can still fire me.  I have to put them on notice that I have the disease so that if my performance suffers they can work with me to fix the problem if possible.  Thank goodness I don't have to look for a new job - although my job consolidated with the branch in New York and I now have to commute 2 hours a day longer - I had to go with them because I have PD.  I need the insurance.  I didn't want to have to take the chance of working with someone new because that is even more stressful.  If I had changed positions I would definitely tell the employer of my disability (if asked) (don't ask don't tell).  I don't think I would want to lie.  But on the other hand the thing is that the meds work so well only I know that I am having troubles.   Oh, well not going to discuss here - that is another post LOL 


:razz:  65

DX:  4/2010 confirmed 7/2010

 

Meds:

  • Azilect since November 2010 (1 mg per day)
  • Carbo/levodopa since September 2011 (25/100 5x day)
  • Neupro patch since July 2013 (2 mg per day)
  • Entacapone since January 2014 (200 mg 5x day with Carbo/levodopa)
  • Clonazepan .since June 2014 (.125 mg 1/2 tab if didn't sleep the night before)

I participate in as many PD trials as I can take the days off of work to participate.  Interested?  Follow sites below.  

 

http://www.parkinson...Clinical-Trials

 

https://www.michaelj...ml?Find-a-Trial


#13 Pawsswassus

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Posted 14 December 2013 - 05:49 PM

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#14 JudgeMugsoode

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Posted 14 December 2013 - 06:51 PM

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