The California Parkinson’s Disease Registry and other things

First, I want to thank all of you who expressed concern after my blog post last week.  It was a very stressful week which definitely had an effect on how I felt.  I saw my Movement Disorders Specialist on Thursday and she assured me that downloadI am doing ok, I just need to get more sleep and reduce my stress levels.  She suggested meditation, which I have tried before, but never seemed to get into it.  I will try again and hopefully will be more successful.

The California Parkinson’s Disease Registry

Beginning July 1, 2018, a new California Parkinson’s Disease Registry (CPDR) will be implemented.   The California Health and Safety Code (HSC) 103860-103870 requires healthcare providers diagnosing or providing treatment to Parkinson’s disease patients to report each case of Parkinson’s disease to California Department of Public Health.   It will be a statewide population-based registry that will be used to measure the incidence and prevalence of Parkinson’s disease.

From the CPDR website:  “Surprisingly, little is known about how Parkinson’s disease is distributed among different population groups and whether the patterns of disease are changing over time.  California’s large and diverse population makes it ideal for providing important information about this disease.  CPDR will expand our understanding of Parkinson’s disease to ultimately improve the lives of those affected.”

Why do we need Parkinson’s Registries?

When a large population of people have a disease like Parkinson’s disease (PD), it’s essential to have accurate numbers of how many people have the disease, where they live and why they have it. According to the Parkinson’s Foundation, this information helps researchers, healthcare professionals and even legislators determine how many resources should be allocated to addressing and treating a disease  Currently, the National Institute of Health (NIH) has no firm numbers for the incidence of PD in the United States, which has been estimated to be about 500,000- 600,000.  The last major PD prevalence study was completed 40 years ago in 1978.  Because the risk for PD rises with age, the number of people with Parkinson’s is expected to increase dramatically as the Baby Boomer population ages,  The Parkinson’s Foundation Prevalence Project estimates that 930,000 people in the United States will be living with PD by the year 2020. This number is predicted to rise to 1.2 million by 2030.

What the Registry does NOT do:

  • Disclose individual patient information
  • Report you to the DMV
  • Jeopardize your current or future medical care

A quick search on the internet showed that only a few other states currently have Parkinson’s Disease Registries, including Nebraska, Utah and Washington.   More states need to create PD Registries soon, so that they can plan for the increase in services and resources needed for treating PD as the population ages.  If your state does not have a registry, contact the Michael J Fox Foundation or the Parkinson’s Foundation to find out about lobbying your state legislators to create one.

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There are a growing number of best Parkinson’s Diseases blog lists popping up on the internet.  The latest one is  from Everyday Health, an online Health magazine.  The list consists of 10 blogs that they call “truthful and inspiring.”  I am proud to be one of the ten and congratulate the other bloggers chosen.   There are many very good blogs out there, so if your favorite is not on this list, it may be on another.

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.

 

 

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”

Odds & Ends

Lots of things to share this week.

First, about sleep problems.  I found a Yoga Nidra meditation by Jennifer Piercy that I really like.  It is called Yoga Nidra for Sleep and can be found on a website called DoYogaWithMe.  I don’t think I have stayed awake until the end of the meditation yet.  Now I just need my dog to sleep later in the morning so I can sleep in.  Someone else mentioned that they like Jennifer Reis’s Yoga Nidra CD.  I have not checked that one out yet.

Second, Lisa Boyd, whose story I featured last summer, titled Did Trauma During Childbirth Set off her YOPD?, had an article published on the Michael J Fox Foundation website.  You can read it here.

Cheryl Kingston, another member of the women’s group that I run, has also had several articles published on the MJFF website in the last year. They are Moose vs. Mouse,  The Many Masks of Parkinson’s, and  To Tell or Not to Tell: Secrecy and Privacy

This past weekend, the Michael J Fox Foundation hosted the Parkinson’s Policy Forummjf-advocating in Washington, DC.  200 members of the Parkinson’s community from across the US had the opportunity to meet with their congressperson and/or Senators after an intense day of training.  Darcy Blake has written about her experience in her blog post Parkinsons Women Support.   Thank you Darcy for your summary of the  forum.  If you would like someone to speak to a group about advocacy and lobbying for PD, check with MJFF to see who attended from your area.

Finally, I will be working with the Parkinson’s Disease Foundation for the next two years on a program titled  “Women and PD Teams to Advance Learning and Knowledge,” or Women and PD TALK .  PDF received a $250,000 PCORI (Patient-Centered Outcomes Research Institute) award for this program in an effort to address long-standing gender disparities in Parkinson’s research and care.  The press release went out yesterday and you can read it here.

I am very excited to be a part of this project.   Multidisciplinary teams, which include experts in the patient, research, and health care communities, will be charged with identifiying women’s needs and prioritizing solutions. 10 regional forums, designed to educate and collect the insights of women with Parkinson’s, will drive the project. Experts will utilize these insights to develop an action plan to change the landscape of Parkinson’s care.

 

I am looking forward to sharing more with you as we proceed over the next two years with this exciting project.

For the newly diagnosed

 Meeting someone with the disease who had gone on to have a successful thriving life became her beacon.

One of the most satisfying things that I have done has been leading a support group for women with Parkinson’s.  We started meeting almost a year ago, beginning with a group of 13 that has grown steadily throughout the year.  Occasionally I have interviewed women at our meetings to get a more in-depth picture of their story instead of having a “gripe session”.  I have found that telling your personal narrative is very powerful, both for the person telling their story and for the audience.  By going more in depth, issues are often raised that would not normally come out.  It is interesting to see the “light bulb” go off when someone else identifies with something in the narrative.  This reinforces the fact that we are not alone in this journey with Parkinson’s.  Although each of us has a different trajectory there are many commonalities that bring us together.  Here is the story of a woman who was just diagnosed a few months ago.

Jane is an editor,  whose symptoms did not begin with a tremor, unlike most of the women present at the meeting.  She was diagnosed in September after going from doctor to doctor to find out what was wrong.  She had a bout of sciatica two years ago which was followed by dizziness.  She felt she was moving slowly and with increasing difficulty.  She went to many different doctors including a neurologist, cardiologist, audiologist and an ayervedic practitioner, and was put through many different tests, which all came back normal.  One doctor suggested that it might be PD, but there was nothing definitive enough so he dismissed the idea.   Finally a naturopath in San Diego recommended an EMG which is a neuromuscular test.  The results were abnormal, so Jane then sought a second opinion with a neuro-muscular specialist.

It took three months to get into a specialist.  In the meantime she had bunion surgery, which was necessary, but only made it harder to figure out what was wrong.  She felt confused and adrift.  She was distressed that she couldn’t move fluidly. She also noticed her handwriting was getting smaller, movement in bed was more difficult and movements involved with cooking  such as cutting and stirring were more challenging.

When she finally saw the new neurologist, he said he thought she had Parkinson’s.  By this time she had been doing some research on the internet and suspected that was the problem.  So when he dropped the P-bomb, she felt she was somewhat prepared for it.  She had a DaTScan which confirmed the diagnosis in September.  The movement disorders specialist that she was referred to was not the right doctor for her.  She felt the doctor was not interested in what she had to say.  She said “yes, you have PD” and then proceeded to give her instructions without listening to Jane.  She told her to exercise for an hour a day, 6 days a week.  As Jane said, she could barely move and felt that the doctor set the bar too high for her at that time.  She was very upset and felt overwhelmed.  The doctor gave her a Neupro patch and sent her on her way.

Jane went back to work.  The Neupro didn’t work at all.  She finally told the people at work, who were very supportive.  The interesting thing was that the younger people were much more empathetic than the older people who had a different view of PD.   Two days after her diagnosis, a friend referred her to an oncologist in the Bay Area who was diagnosed 20 years ago and is successful and thriving with Parkinson’s.  The conversation she had with him gave her hope and it was the most helpful thing for her.  Meeting someone with the disease who had gone on to have a successful thriving life became her beacon.  It changed her entire outlook.

She was referred to our support group by a friend of a friend.  At the last meeting she talked to several women who gave her the name of another doctor, whom she made an appointment with.  The doctor changed her meds, referred her to someone for LSVT which is a speech therapy method for training your voice to be louder, and she feels that she is finally getting the right care that she needs.  Working full time is much easier now that she is feeling better.

Her recommendations for the newly diagnosed:

  1. The doctors should have an informational pamphlet to hand out with frequently asked questions and a list of local services for people with Parkinson’s
  2. Get a second opinion if you are not happy with your doctor.
  3. Find someone else with PD you can talk to.  A buddy who has had Parkinson’s longer   than you, who can answer questions, be a shoulder to cry on and just be there for you.

There are some resources available now.  Two of them are  Parkinson’s Diagnosis Questions from the Michael J Fox Foundation and For the Newly Diagnosed from the Parkinson’s Disease Foundation.  Both of these had input from people living with Parkinson’s, which is very important.   We should encourage our doctors to hand them out to newly diagnosed patients as a resource.  Some of us in the room were given no information when we were first diagnosed.   There are so many questions and we did not know where to turn to for answers.  There are also many local resources that should be compiled in a list to give to the newly diagnosed.  And finally, we talked about setting up a network of Parkinson’s Buddies to help the newly diagnosed.  After all, no one should go through this journey alone.

Some recommended reading for the newly diagnosed:

These are some of my personal favorites.  There are a lot of books out there, with many touting magical cures.  Please be aware of this when looking for a book about Parkinson’s.  There is no magic cure, but there are definitely strategies for living better with PD.

Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease by Jon Palferman

Always Looking Up: The Adventures of an Incurable Optimist by Michael J Fox

Parkinson’s Treatment: 10 Secrets to a Happier Life: English Edition by Dr. Michael Okun

And for women:  Parkinson’s Diva by Dr. Maria de Leon