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.

 

 

Striking a Balance

‘So, what fun things have you been up to lately’ is the finest question a health care professional can ask. It also happens to be the finest question I can ask myself.     Mariette Robijn

 

Two blog posts with opposing views on living with Parkinson’s  were published this last weekend, with much commentary from you, the readers, on various FB pages.  The PD Gardener wrote about the downside in  Why I think Parkinson’s is a Soul Sucking Disease.  On the other hand, Mariette Robijn asked  So, what fun things have you been up to lately?

I will let you figure out which one was better received in the Parkie community.  I would like to offer my own take on how we should be looking at both the positive and the negative views on life with Parkinson’s.  There needs to be a balance between both in order to live well with PD.  Concentrate only on the negatives, and you will never find any joy in life.  If you concentrate only on the positives, you may not be taking care of yourself properly.

On the negative side, yes, there are a lot of things that we don’t like.  We can all identify with many of the things that Stan, the PD Gardener, has listed.  For each of us, it is something different that has been taken away by this “soul sucking” disease.  There is a loss of self, of who you once were.  For some, it is a gradual decline, others see major changes overnight.  It may be the tremor that comes and goes, interfering with your ability to eat, write legibly or engage in some of your favorite activities.  For others, the pain can be excruciating one minute, and gone the next.  No reason for the sudden onset or disappearance.  You can’t walk, but you can dance to music.  Having Parkinson’s can be like having a split personality.  You never know how you are going to feel, from day to day, hour to hour.  And for your caregivers or carepartners, well, they are just as confused as you are by this rollercoaster that you are on together.  As a result, we forget how to have fun in our lives.

On the positive side,  you may find your opportunities for fun to be diminished, but they are still there.  You may just have to look a little harder.  But trust me, find some things that make you happy, and you will feel better.   So you can’t go ballroom dancing anymore.  Put on some music and start moving, even if you are in a wheelchair.  Laugh at yourself because of the ridiculous movements you are making.  You can almost feel your dopamine levels increase as a result.

Play games with your friends.  One friend of mine says that her mother, who has dementia, only wants to play Rummy Cube with her.  They are having more fun than they have had in years, just playing a game.  Best of all, she can see the fog of dementia lifting, albeit temporarily,  while they are playing the games.

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Play video games.  Yes, video games. When was the last time you played Super Mario Brothers?  Researchers at Purdue University are now looking at the benefits of use the Wii games to improve Parkinson’s patients’ movement, speech, and quality of life.  So dig out the old Nintendo Wii system gathering dust somewhere in your house and have a good time.

Watch a funny movie or tv show.  Something ridiculous, that will make you laugh uncontrollably is guaranteed to make you feel better.

imagesSmile.  Yes, smile, even a fake smile.  According to a newsreport on NBC just a few days ago,  Smiling can trick your brain into happiness – and boost your health. Why?  Science has shown that the mere act of smiling can lift your mood, lower stress, boost your immune system and possibly even prolong your life.  Another side benefit for us Parkies – a dopamine rush!

You don’t have to go to Disneyland to have fun.  You don’t even have to leave home.  The opportunities are there for the taking.  So when your doctor asks you if you have had some fun since your last visit,  you can say without hesitation, “YES” with a big smile on your face.

It’s #GIVING TUESDAY – no I don’t want your $$

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We have all been bombarded by this image over the last several days, by every non-profit out there, and for-profit organizations as well.  My inbox, junk and spam folders are full of them.  Yes, many of these organizations need money.  Yes, many of them are worthwhile.  And yes, many of them are not.

My husband and I give generously to many organizations that we have supported over the years.  But when I get a phone call or email from some obscure group I have never heard of, thanking me for my donation last year and would I give again, I have to laugh.   I do a lot of fundraising, but I have never seen that tactic proposed in any fundraising workshop that I have attended.

And then there are all of those “gifts” that come in the mail, asking for a donation.  Always accompanied by a heart wrenching photo of …..well, you get the picture.  And when you don’t respond, they spend more money on printing and postage to remind you that you haven’t paid for that “gift”.

So I started thinking about other ways that we can give on #GT_logo2013-final copy small_0

Here are just a few things we can do:

  1.  Collect all of those “gifts”  that came in the mail that you didn’t ask for, such as shopping bags, note pads and pens, calendars, etc. and regift them to a school, retirement home or other appropriate place.
  2. Take those nickels and dimes so carefully glued to a donation form asking for more and give them to someone who really needs them.
  3. If you have a fruit tree that is the gift that keeps on giving over a very short period of time, like my mandarin orange tree,  ask some local teens to come pick the excess fruit and donate it to a food pantry or homeless shelter.   Definitely better than letting the excess fruit rot on the tree.
  4. Clean out a closet and donate used clothes to a homeless shelter.  Take your children or grandchildren with you when you do.  It will leave a lasting impression when they see that someone else has been made happy by their no-longer needed things.
  5. Donate unwanted items to a thrift shop whose profits go to a cause that you support.  You know what I mean, those hostess gifts that you will never use, things you bought on vacation that seemed right at the time, but now look ridiculous at home, etc.
  6. Reach out to someone you haven’t spoken to in a while.  Don’t just text or email.  Call them.   The sound of a human voice is so much better than a ding on your phone.
  7. Give hugs.  Your spouse, children, grandchildren, friends, pets.  Hugs make everyone feel better.
  8. Give thanks those who make your life better.   Your spouse, family, friends, caregivers.  We don’t thank people enough.

I am sure you can think of other ways to give.  The important thing is to know that you are doing something positive for yourself and for others.

 

Soaring with Hope for PD

Screen Shot 2017-11-14 at 10.03.52 AMSeveral months ago, some Parkie friends of mine,  Amy, Clara and Naomi, started a project called “Soaring with Hope for PD”.  Inspired by the art installations that they saw at the World Parkinson’s Congress in Portland last year, they decided to create an art installation for the next WPC in Kyoto, June 2019.  Naomi is Japanese, and to celebrate her heritage, she settled on Origami Paper Cranes.  She says “traditionally, it was believed that if one folded 1000 origami cranes, one’s wish would come true.  It has also become a symbol of hope and healing during challenging times.  As a result, it has become popular to fold 1000 cranes (in Japanese, called ‘senbazuru’).”

 

They have taken this idea one step further.  Each crane represents a person with22852927_364077437370768_1492230337745861884_nParkinson’s or a person impacted by Parkinson’s. They are asking each person to give their message of hope, which will be written on a crane.  So instead of 1000 cranes, they have a goal of 10,000 cranes to bring to the WPC, each of them with a message of hope written on it.  Can you imagine an installation of 10,000 colorful origami cranes hanging from the ceiling?  How beautiful will that be?  And the impact that the installation will have will be substantial – there will be more cranes than there are people attending the WPC, representing the thousands who could not be there.

No automatic alt text available.To participate in the project, please
provide your NAME, LOCATION and WORDS OF HOPE by clicking HERE,   emailing to SoaringWithHope@gmail.com  or message it to them. They will dedicate a special crane with YOUR MESSAGE on it.  You can also help by getting the word out, sharing this post with others in your community.  They are also going to take pictures of the origami cranes and and post them on the Soaring With Hope for PD   Facebook page for all to see.
Soaring with Hope for PD – Parkinson’s
Raising awareness in PD Parkinson’s globally!

Parkinson’s is Personal – How one Foundation Works to Help Families Living With Parkinson’s

 

We’re inspired and fueled by the needs that families have when living with Parkinson’s. It’s a team effort and everyone involved needs the right resources and access in order to continue living an impactful life.

Courtesy of the Parkinson’s Wellness Fund

Today I met an amazing young man. Russell Meyerowitz, along with his family and colleagues, created the Parkinson’s Wellness Fund to bridge the divide between families living with Parkinson’s and the care and services they fundamentally need to continue living wonderful and meaningful lives.

Meyerowitz’s father, Aubrey, was diagnosed with Parkinson’s more than 15 years ago.  At one point he was going for acupuncture, but then suddenly stopped receiving the treatment. Russell asked why. The answer was simple and what most families commonly hear, “Well, insurance could only cover 3 sessions. Medicine is expensive, insurance is expensive, so I had no choice, but to stop going.”

After seeing family after family struggle with medication costs and monthly insurance expenses it became clear that many people were in the same position – they simply could not find a way to afford alternate methods for helping them deal with the change of lifestyle when receiving a diagnosis of Parkinson’s. The Parkinson’s Wellness Fund was created to provide access to these complimentary services via financial wellness grants. They want people to realize that they can live a great life with Parkinson’s.

Russell talked about funding for people living with PD, today vs. funding for research, “Our natural desire and hope is of course a cure. I want a cure, we all want a cure. But there are dozens and dozens of organizations focused on this mission. What we’re collectively missing is a collaborative focus and attention on the people living with Parkinson’s, today.”

He went on to explain that funding research provides an immediate feeling of action, fulfillment and impact. Yet, it actually is only distancing our families from receiving the much needed support they need to live life – today. He continued to explain that for loved ones, it’s extremely difficult and exhausting to keep seeing a family member experience daily hardship, pain and discomfort over and over. Every doctor visit, physical therapy session and pharmacy visit is a reminder that your loved one is going through the struggle of living with a chronic disease that is simply not going anywhere.

He says:  “This is my absolute burning passion…. to help families with the support they need.”   The Parkinson’s Wellness Fund is the vehicle for organizations to have an outlet to assist families with the support they need. However you have set-up your team and care, they too are part of your team. They continue to focus on how each individual and family can begin building the support they need, both mentally and physically in order to sustain the changes that Parkinson’s forces one to go through. Their goal continues to be the bridge to the gap in our current ecosystem.

The family started the Foundation 9 years ago from scratch, with a 50+ year vision in mind knowing what they were up against. They were afforded the opportunity due to an incredible group of supporters. Their goal is simple, but so powerful –  help one more family living with Parkinson’s, today. They are not willing to compromise on their mission and they’re ready for scale.

People are looking at the PWF and asking “You aren’t charging me anything?  I can really get a second grant? You’re not charging service providers?  What’s the catch?  I just have to be living with Parkinson’s?”  And the answer is always “Yes”.

The art of collaboration and purpose shines bright through and through the Parkinson’s Wellness Fund.

 

Please contact Russell Meyerowitz directly at the Meyrow Foundation if you need help.

 

The Parkinson’s Wellness Fund will be hosting their 9th Annual Play for Parkinson’s Golf Tournament on June 11, 2018 at Braemar Country Club and their 3rd Annual Spin for Parkinson’s on March 4, 2018.  

For more information about both events, which will be in the Los Angeles area, check the website at www.themeyrowfoundation.org

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Do you know of any other foundations providing resources for people with Parkinson’s?  If so, please let me know.  I will compile a list under Resources.