Parkinson’s in the Workplace

One day at work you notice something is wrong.  You are moving more slowly, or perhaps your hand shakes at times.  Eventually, as the strange symptoms progress, you see a doctor.  You hear the dreaded words  “You have Parkinson’s Disease”.   Now what do you do?  You are afraid to tell your boss, for fear of losing your job.  You don’t want to confide in your co-workers, even though they have begun to suspect something is amiss.So you quietly try to get the job done, even though some days it becomes extremely difficult to complete your tasks.  It is clear that you are going to need some kind of accomodations at work, but you don’t know how to ask without “outing” yourself.

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I asked my husband, the retired labor attorney, for some advice on this topic, since several of my Parkie friends were concerned about what to say at work.  He referred me to Robin Dal Soglio, who had been an employment law partner at his law firm and now was a partner in her own firm.  She met with a group of us last week to talk about Parkinson’s in the workplace.

As employees, we don’t always know what our rights are if we have disabilities.  Many people are under the assumption that if they say something, they will lose their job.  Not true, according to Dal Soglio.   The most important things you need to know are:

  • You ARE NOT required to disclose your “disability” to anyone at work.THE ONLY TIME THEY  NEED TO KNOW IS IF IT MIGHT AFFECT YOUR ABILITY TO PERFORM THE JOB.
  • There are two sets of federal laws (and many states, like California, have similar laws) that most like apply to your employment situation:
    • Americans with Disabilities Act (ADA)
    • Family and Medical Leave Act (FMLA)
  • There is a difference between the “disability” you have and whether that disability raises job-related limitations.  Information about your disability includes: its definition, how you acquired it, how it affects your life, its prognosis, any medical treatments, etc. Employers generally have neither the need nor the right to know these things.
  • If your disability does raise job-related limitations, the ADA requires your employer to provide you with reasonable accommodations on the job to help you to be able to do essential functions of the job.  The employer is required to discuss these issues with you; what is “reasonable” and what is an “essential function” have to be determined on a case-by-case basis.
  •  The FMLA act gives you 12 weeks off per year, which can be taken in increments as small as 1 hour (so you can go to that much needed PT session or exercise class) to the extent necesary to take care of disability.  This might involve time off work for extended periods of time, time off to attend medical apointments, switching to part-time work for periods of time and possibly other accommodations depending on the specific factors involved.

Sometimes we need to look at things through a different lens, our employer’s.  It has a mission to accomplish and we must be able to contribute to that mission.  As People with Parkinson’s, we cannot look only at our needs and disabilities.  Those of us who are still working must also be mindful of how management has to accommodate our “disabilities” and how possible accommodations affect our contributions to the workplace.   This is why the law requires good faith communications between the employer and employee about possible reasonable accommodations and what the essential functions of the job are. Good faith discussions that enable you to continue working with reasonable accommodations for your disability can and frequently do benefit both you and your employer.

Dal Soglio gave us a list of workplace accommodations posted by the Job Accommodation Network (JAN).  This website can be very helpful for navigating the labyrinth of laws protecting you in the workplace.

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The Michael J Fox Foundation also published two guides on Parkinson’s at work.  You can download them here.

The bottom line is that you have control over when, how and even whether you disclose your Parkinson’s at work. If you are not sure what to do, check out the resources above or speak to an attorney who specializes in employment law.   Armed with the right information, you can work with your employer to determine how you can continue to work in your present position, even with Parkinson’s.

 

Many thanks to Joel Krischer and Robin Dal Soglio for providing this information.

 

 

From Apathy to Compulsive Behavior

Compulsive behaviour is when someone has an overwhelming urge to act in a particular way. This is usually out of character and the person may be unaware of their personality changes.

EPDA definition of Compulsive Behavior

Every once in a while, it seems like all of the PD bloggers start writing independently about the same topic.  Several weeks ago, I wrote about Apathy after reading an article posted on a PD website.  That same week, numerous other bloggers wrote about the same thing.  So last week I started thinking about doing a follow up blog post about Compulsive Behavior, since a number of you had commented about that being as big an issue as Apathy.

As I started to write about it, there was suddenly a flurry of blog posts about, you guessed it ……..Compulsive behavior!    Is it something I said?  Is there something in the blogosphere that leads all of us down the same path?

So, I took a break from writing, thinking that I could find something else to write about. But my compulsive behavior got the better of me and here I am, writing about it anyway.

Some people say that it is the medications that we take for Parkinson’s that cause complusive behavior.   Another theory is that we get a release of dopamine when we receive a reward of any kind.  The more we are rewarded, the more dopamine is released.  This is why some people  with Parkinson’s become compulsive gamblers or shoppers.  The rewards can be a closet full of shoes you don’t need or wear, or hitting it big (very rarely) at a casino.  And you just keep going back for more and more.   Unfortunately, these behaviors can become very destructive, and expensive!

Whenever you visit your Neurologist or Movement Disorder Specialist, you are probably asked if you exhibit any compulsive behaviors.  Adjustments in your medications or seeing a psychologist can help keep things in check.  Sometimes we do not recognize these behaviors in ourselves, so it is important that a family member or caregiver accompany you occasionally to your doctor’s visit.  They can give a more objective view about any compulsive behaviors that you show.

shoe-collection
So many shoes, so little time!
I found a good article about Compulsive behavior on the EPDA (European Parkinson’s Disease Association) website.  According to the article, there are good and bad compulsive behaviors that are consistent with PD.  Good compulsive behaviors may include taking up or renewing a new hobby such as painting, or learning to play the piano.  However, if the urge to indulge in the behavior gets in the way of other things,  such as sleep, you need to consider scaling back, as with bad compulsive behaviors.

So the bottom line is:  be aware of changes in your behavior that are indicative of compulsive behavior and be pro-active about seeking help when needed.

On a completely different topic, fellow Parkie Robert Smith just came out with a book, The Parkinson’s Playbook: A Game Plan to Put Your Parkinson’s Disease On the Defense which details how he turned his life around and is now mostly symptom-free and feeling great.  It has gotten very good reviews so far.  I have not yet read it, but would like feedback from anyone who has.

Warning: Possible side effects may include…..Can we get rid of those annoying drug company ads, please?

 

Several weeks ago I participated in a study for a drug company ad.  I did not know ahead of time what I was being recruited to do, which is probably a good thing.

Before I continue, permit me a short rant:  I hate TV drug ads. Really HATE them.  Who wants to watch late stage baby boomers (us!) sitting on the beach holding hands or playing with their dog (always a Golden Retriever) while some guy whispers in a rapid fire undertone a list of possible side effects that includes possible head explosions and alien abductions?  And then I am supposed to do what with this wonderful information?  Go ask my doctor to prescribe it?  Like she wouldn’t know without my asking?  Has anybody ever actually done that (well, other than for Viagra)?  Would you want to be friends with, or even converse with, anyone who did?  And don’t get me started on the new disease acronyms they invent.  Hey Big Pharma, here’s an acronym for you.  STFU and lower the price of the drugs for us consumers.

So where was I?  Oh, yeah, the study.

It was a suprisingly good experience and I will be curious to see what the ad finally looks like.  The study was for a print ad for a Parkinson’s drug.  I participated from the comfort of my home, using my computer with a video hook-up to the interviewer.  The different concepts presented were interesting.  I thought that only one of the six ads presented actually addressed what the drug was for.  The others were trying to create an “image” for the drug.  One showed a very healthy person with (of course) a Golden Retriever, another looked like a Beer ad, and yet another belonged in a Women’s magazine 50 years ago.  They asked for my opinion and I was very candid about what I thought worked and didn’t work and why.  I hope that they are actually listening to us when they create the final ad.

If you are asked to participate in a focus group study for a drug company, please say yes and make sure that they know how you feel about these ads.  They really serve no purpose for us as patients.  We get the information we need  about new drugs and treatments from reliable sources on the internet and our doctors.  We don’t need the drug companies to tell us what we should be taking.  If their drugs really work to combat PD, we will know about them and ask for them without being subjected to these ads.

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Fake ad designed by Justine Cooper

 

 

Are there differences between Men and Women with Parkinson’s?

Research is beginning to prove what the medical community has long suspected: that women experience Parkinson’s differently as it relates to diagnosis, symptoms, progression, treatment complications and care

Allison Willis, M.D., M.S., co-lead of Women and PD TALK

At 10:00 pm, the husband looks at his wife and says “it’s time to go upstairs to bed.”  And he goes upstairs and gets in bed.  45 minutes later, his wife finally comes upstairs.  He asked her what took her so long.  Her response:  I had to clean the kitchen,  put the dirty clothes in the laundry, walk the dog, make sure all the doors and windows were closed, check on the kids and on and on……..

Yes, there are definitely differences in Men and Women.  Women have historically been nurturers and caregivers.   They take care of their children, their spouses, their homes.   And many of them are still working.   When diagnosed with a disease like PD, their entire support system is turned upside down.  It can be difficult to let someone else be THEIR care-giver.

In the last few months, as co-lead for the Parkinson’s Foundation’s Women and PD TALK , I have been talking to Women with Parkinson’s about issues facing them as women with a chronic illness.  As mothers, and as lifelong caregivers, many  women have never even thought to ask for help when they need it.  It often takes longer for women to receive the diagnosis of Parkinson’s Disease than it does for men.  Many are told that it is in their head.  They are often told that they are depressed, especially if they are younger.  Most women go to their doctors alone.  Many have shared that they go to therapy, alone.   They often go to support groups alone.  One woman said that she stopped going to mixed support groups because most of the women who came were care-partners and assumed that she was, too.  She felt that she could not get the support she needed from a mixed group.

 Many women with Parkinson’s seek out support systems that include other women with PD.  After all, who else would understand what they are feeling?  They need the camaraderie and friendship that Women-only groups can provide.

One thing I noticed last year when I attended the World Parkinson Congress in Portland, was that the overwhelming majority of the men with Parkinson’s were accompanied by their wives.   The number of spouses who accompanied their wives who have Parkinson’s was far fewer.  

The interesting thing is that most men fare much better than women as the disease progresses.  Is this because they have someone that will take care of them and advocate for them, even if they don’t ask for help?  Many of the women with PD that I spoke to are now care-partners for their husbands, which means that they are not getting the support they need at home.  This is unfortunate, because being a care-partner can take much more energy than these women with PD have to give.  And they suffer because of it.  Unless they can get help in their home, they often do not have the time to exercise daily and take care of their other needs.  I am sure that the stress of being a care-partner must take its toll as well.  Women who live alone have their own difficulties in accessing adequate care.

What is the solution for these women with Parkinson’s?  Are there differences in treatment?  Care?  Are their symptoms different than men’s?  Why does is take longer for women to get diagnosed?   We will be exploring these issues and more at the Parkinson’s Foundation’s Women and PD TALK   forums that will be taking place in 10 communities around the country in the next 6 months.  Stay posted for more information.

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Thank you James Parkinson

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On April 11, we will celebrate the birthday of James Parkinson, M.D., who published his groundbreaking essay 200 years ago in 1817 on what was then known as “the Shaking Palsy.”    His narrative reporting of six case histories is as readable as a 19th-century British novel, and has been called a “gem of the neurologic literature.” You can read the entire text here.

Last October, during Breast Cancer Awareness Month, I posted “Breast Cancer vs. Parkinson’s” to highlight the differences in approach to publicising these two diseases.  I am repeating it here because Parkinson’s Disease affects so many of us, yet does not get the PR that a “sexier” disease like Breast Cancer does.  We can and must do more to educate people about Parkinson’s, especially since the numbers of people affected are expected to climb rapidly in the coming years.

As a footnote to the blogpost, last month my daughter and I walked in a 5K for the Michael J Fox Foundation.  We had a great time, but the number of people who came and walked was probably less than a 10th of the number who walk for Breast Cancer.  And the same for corporate sponsors.  We need to do much better.

Breast Cancer vs. Parkinson’s

Almost eight years ago, I was diagnosed with Parkinson’s and Breast Cancer in the same week.  Obviously, it was a week when I wished I had just stayed in bed and hid under the covers.  How do you react to the news that you have not one, but two major health issues that will be with you the rest of your life?

Much of the next six months remains a blur to me.  I underwent a lumpectomy and radiation for the breast cancer.  A neurologist put me on ever increasing doses of Requip, and my estrogen patch was taken away from me.  All of this meant that I slept all day, was plagued by hot flashes all night and pretty much walked around in a fog all of the time.

Somehow I was able to come to terms with having breast cancer immediately.  My mother had it, my sister had it.  It is the disease that most women fear most.  And it is the disease that is talked about everywhere.  October is Breast Cancer month and there are a lot of stores that celebrate by producing Pink Products, or should I say Pink Profits?  It doesn’t matter how useless the Pink Products are, we buy them anyway because it makes us feel like we are doing something positive.   Celebrities talk with pride about recovering from breast cancer.  There are rallies and walks to raise money.  I even corralled my friends to walk with me as a team for the Revlon Breast Cancer Walk that first year.  We wore our Pink boas with pride as we finished our 5K walk and entered the field at the Los Angeles Coliseum where the Olympics were held.  We were Champions in Pink!  Breast Cancer is fashionable.

But Parkinson’s is another story.   It was hard to come to terms with 4884e7c347f2b13936d46ca87475e3b6that diagnosis.  I wasn’t that old (57), I wasn’t a man, I didn’t shuffle, and I didn’t know anyone else with PD in my family or circle of friends.  It was something my friend’s parents had, but they were much older and didn’t move very well.  There were no Parkinson’s products for sale in the department stores during Parkinson’s Awareness Month.  I didn’t even know there was a Parkinson’s Awareness month until this year.  Parkinson’s events were not well publicized.  After all, who wants to go to an event where everyone is shaking, drooling and shuffling?  Parkinson’s is definitely not fashionable.

I was active, playing tennis, going to yoga, traveling and enjoying life as much as possible.  I didn’t have time for a chronic degenerative disease.  I just had a tremor, so I tried to hide it.  And I kept trying, but after a while, people started to notice.  I thought that if I didn’t say anything, it didn’t exist.  So I did what my friends and I call the “Parkie hand-hiding strategy”.  You know the one where you hold your shaking hand, sit on it, stick it into a pocket or purse, or do some other strange maneuvers just to prove that it isn’t shaking.

But of course, that didn’t work and I was only fooling myself.  So why couldn’t I admit it to myself?  Why couldn’t I tell others?  It took a lot of therapy and writing my personal narrative for me to confront what I called the “Elephant in the room”.  Once I started to write my narrative*, which only my therapist was privileged to read, things started to change.  I started to write about life with PD.  But only for other Parkies.  The rest of the world still didn’t need to know.  And then one day, I made a mistake.  I posted something meant for my Twitchy Woman Facebook page on my public Facebook page.  And the world didn’t come to an end.  Wow!  I was outed.  And it was okay.

So now I have embraced my PD.  There is a wonderful world of people in the Parkinson’s community that I have met.  The time I spent last month in Portland at the World Parkinson Congress was an eye opener.  I was able to meet some people who I have corresponded with through this blog.  I talked to doctors, therapists and researchers who valued my opinion.  I  spent time with new friends and old friends, looking for answers and camaraderie.   We have a common bond and we understand each other.  And we don’t all shake, drool or shuffle.  In fact, we spent a lot of time working to dispel that image. We all have the Elephant in the room, reminding us that life is not the “normal” that it used to be.  But that elephant is getting smaller and smaller, and one of these days, hopefully very soon, it will be banished from our lives.

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With my friend Clara, looking good with PD in front of Anders M Leines mural “This is Parkinsons”