Women and Parkinson’s: Closing the Gender Gap in Research and Care

When I first experienced PD symptoms, they were explained away as the stress of a working mom. I was prescribed medication for anxiety and the eventual diagnosis of Parkinson’s was not made for another two years. – Carol Clupny, MS, Women and Parkinson’s Advocate

Five years ago, a question was posed to the Parkinson’s Disease Foundation (now the Parkinson’s Foundation) by a woman with Parkinson’s Disease:  “Why are women with PD treated as little men?”  Most research did not include women, medications tested only on men were given to women in the same doses, symptoms varied, and more often than not, it took women much longer to be diagnosed and then treated for PD.  This one question led to the Women & PD Initiative hosted the Parkinson’s Disease Foundation in September 2013.  I was one of 25 women who attended and it changed my outlook on life with PD.

A year later, I was asked by Ronnie Todaro, MPH, Executive VP, Parkinson’s Foundation, to be part of the leadership team, along with Allison W. Willis, MD, MS, Assistant Professor of Neurology and of Epidemiology University of Pennsylvania School of Medicine, and Megan Feeney, MPH, from the Parkinson’s Foundation, to explore these issues more deeply in order to identify what was needed for better care and treatment of women with Parkinson’s.   This nationwide study titled The Women and PD Teams to Advance Learning and Knowledge (Women and PD TALK)  was made possible through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (3998-PDF).

A research and care agenda was derived from 10 regional forums, as well as a national forum, hosted across the United States, to understand the experiences of women with PD. This agenda reflects the priorities identified by women with PD, medical professionals and care teams at these forums. The purpose of this agenda is to promote research and care practices that enable women with Parkinson’s disease to maximize their quality of life.   I have included the 9 priority areas that have been identified below.  You can read the entire publication here.

Women and PD Research Needs

Research

  1. Inclusiveness: Parkinson’s cannot be fully understood without increased representation of women in PD research, the mechanisms, progression of and treatment response.
  2. Relevance: Parkinson’s research must examine the effects of biological sex — including sex hormones as they relate to PD risk, progression and response to treatments.
  3. Quality: Existing data should be pooled and analyzed for information about women with PD.

Care

  1. Accessibility: Parkinson’s care must be more accessible to women. Programs should target health, wellness and management of PD and should help women feel comfortable and included.
  2. Personalization: Parkinson’s care should be personalized to women. Biological and gender/cultural differences influence PD health outcomes and programs should be designed to address these differences.
  3. Communication: Medical professionals and women with PD should utilize shared decision-making tools to better communicate and work together to identify goals for treatment.

Education and Empowerment

  1. Self-management: Provide women with Parkinson’s with the knowledge and tools early in their diagnosis to maintain a desired quality of life.
  2. Shared Responsibility: Care teams should better understand the needs and priorities of women with PD, being more involved and not relying on the woman to understand all aspects of her disease.
  3. Advocacy: Additional education efforts are needed to increase public awareness about PD.

I personally want to thank everyone who attended our 10 Forums and the National Forum, along with Ronnie Todaro,  Dr. Allison Willis and Megan Feeney, who worked so hard with me to ensure the success of this project.   My hope is that with this agenda, we now have the tools to reach out to physicians, other health care professionals, family members and anyone else who helps to provide care and treatment of women with PD, so that we, as women with PD, will no longer be treated just as “Little Men”.

Is There a Coming Pandemic of Parkinson’s?

pan·dem·ic\/panˈdemik/ adjective: occurring over a wide geographic area and affecting an exceptionally high proportion of the population  “The 1918 flu was pandemic and claimed millions of lives.”   noun: an outbreak of a disease that occurs over a wide geographic area and affects an exceptionally high proportion of the population: “a pandemic outbreak of a disease”

The alarm that there could be a “pandemic” of PD was sounded last week in a report in the Journal of Parkinson’s Disease, “The Emerging Evidence of the Parkinson Pandemic”  by E. Ray Dorsey, Todd Sherer, Michael S. Okun and Bastiaan R. Bloem. (Mr. Twitchy, always on the lookout for Parkinson’s news, ran across the study today and sent me several articles today based on this report.)

 

Screen Shot 2019-02-07 at 2.39.35 PMThe authors* are all highly respected researchers in the Parkinson’s world.  They have been following the growth of Parkinson’s Disease since 1990.  From 1990 – 2014, the number of people with Parkinson’s Disease worldwide doubled to over 6 million.  The authors predict that those numbers will double again to 12 million by 2040,  They say that “The Parkinson pandemic is fueled by aging populations, increasing longevity, declining smoking rates, and the by-products of industrialization.”
Yes, the population is aging.  Life expectancy has increased by 6 years in the last 2 decades and will most likely continue to increase, putting more people at risk for PD after age 65.  The impact on our health system and support systems will be enormous as the number of people with advanced PD increases.
Declining smoking rates???  Many studies over the years have shown that smoking decreases the risk of PD by about 40%.  As smoking rates decline, there could be an increase in PD.  However, if you are not a smoker, please don’t consider starting just to reduce your PD risk.
The “by-products of industrialization” include pesticides, solvents and heavy metals. However, they emphasize that exposure to these agents is preventable in the workplace. The big question is, how many employers will take the necessary steps to protect their workers from being exposed.  This is definitely a cause of PD that can be reduced.
But the news is by no means all doom and gloom.  Quite to the contrary.  According to two articles, one from Science Alert and another from Eureka Alert, researchers are getting closer to finding what actually causes Parkinson’s, and many new treatments for PD are being approved every year.  We may not have a cure for a while, but we are getting closer to slowing down the progression of PD to make our lives much better.
Against that background, the Dr. Dorsey proposed that the Parkinson’s community form a “PACT” to Prevent, Advocate for, Care, and Treat the disease through understanding the root causes (environmental, genetic, and biological), expanding new care models that seek to bring expert care to all, and developing new highly effective therapies.  They point out that, the most effective therapy we have today (levodopa) is now fifty years old. It is time for something new.  Now.
Pandemics in the past, such as — polio, breast cancer and HIV are a fewe recent examples — have been reduced successfully and substantially because of activism coming from the community.  We can both prevent potential the PD pandemic and help those who already have it by supporting research, participating in clinical trials for new treatments, and raising awareness about Parkinson’s.  The key, the authors say, is that we all work together to accomplish this goal.

*E. Ray Dorsey, Department of Neurology and Center for Health+Technology, University of Rochester Medical Center, Rochester, NY, USA.      Todd Sherer, Michael J. Fox Foundation for Parkinson’s Research, New York, NY, USA.       Michael S. Okun, Fixel Center for Neurological Diseases, Program for Movement Disorders and Neurorestoration, Department of Neurology, University of Florida, Gainesville, FL, USA.   Bastiaan R. Bloem, Radboud University Medical Center, Donders Institute for Brain, Cognition and Behavior, Department of Neurology, Nijmegen, The Netherlands.

How Are Women with Parkinson’s Different than Men?

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The new image of Parkinson’s DIsease

What image comes to mind when you hear someone has Parkinson’s Disease?  I am sure it is not what you would have seen in Houston at the Women and PD TALK National Forum last week.

In a little over 2 years from concept to fruition, the Parkinson’s Foundation’s Women and PD TALK initiative held 10 regional Forums in the past year, and a final National Forum in Houston last week. Three years ago, at the Parkinsons Disease Foundation’s (now Parkinsons Foundation) Women & PD Initiative conference that I was privileged to attend, one of the key take-aways was that there are disparities in research and care between women and men with PD.  To date, there had not been any studies to look seriously at these disparities and we wanted to know what could be done to improve the care and treatment of women with PD.   A year later, Ronnie Todaro, VP at the Foundation who had led the Women & PD Initiative, applied for a PCORI (Patient Centered Outcome Research Institute) grant to help fund Women & PD TALK.

Because the grant required patient involvement, I was honored to be named a co-lead on the project, along with Dr. Allison Willis, Assistant Professor of Neurology, Perelman School of Medicine, University of Pennsylvania.  We worked with Megan Feeney, M.P.H.
Manager, Community Engagement at the Parkinson’s Foundation to put everything in place for this initiative.

There were 10 regional forums, with sites chosen to represent large urban areas as well as more rural areas.  Each  forum leadership team included a Woman with Parkinson’s, a Movement Disorders Specialist or Neurologist and an Allied Health Professional.   About 40 participants, both women with PD and Health Professionals attended each of the full day events.  Breakout groups at the forums gave valuable information on Risk, Symptoms, Treatment and Care.

50 people, about a third of them women with Parkinson’s Disease, gathered in Houston at the National Forum to go over the findings from the 10 forums and begin to set some goals and create recommendations and action plans.  There is too much to report here now, but there will be some specific recommendations to improve the care and treatment of women with Parkinson’s in the final report.

Meeting with such strong women, both people with Parkinson’s and health professionals, makes me proud to be a part of the PD community and inspires and empowers me to do more.      Kelly W

What was most interesting to me is that while there are definitely differences in symptoms and reactions to medications, many of the disparities were more cultural and social.  Just a few examples:

  • There are a significant number of women with PD who are caregivers, taking care of children, elderly parents or sick spouses and there is no one to take care of them.
  • Women tend to go to their doctor’s appointments alone, while men do not.  In fact, women go alone to most things related to PD.
  • Women do not go to support groups as often as men.  Some reported that when they went, they were asked who they were taking care of.  No one believed that they were the one with PD.
  • Being treated dismissively by doctors. Told it was all in their heads, and in many cases, especially for younger women, it was because of hormones.
  • Women need to connect to other women with Parkinson’s. There was a lot of talk about the need for mentors to be paired with the newly diagnosed, to make the disease less frightening and be there for them when needed.
  • Exercise, Exercise, Exercise!!!! We can’t say it enough.
  • And finally, can we get rid of that awful caricature of a man hunched over with PD and replace it with the photo above of 11 amazing women with Parkinson’s?

Thank you  Ronnie, Megan and Dr. Allison for giving me the opportunity to be an integral part of this team.

A full report will be issued, with specific recommendations and strategies to improve the lives of women with Parkinson’s Disease, sometime in the spring of 2019.     I am looking forward to sharing it with you.  In the meantime, click here for the link for the press release about Women and PD TALK.

Desperately Seeking the Right Information

This was published several months ago but disappeared into cyberspace. Apparently Parkie hit a wrong key and it went somewhere else.

If you are the average person with Parkinson’s, it probably took you anywhere from 1-3 years to get the right diagnosis.  And once you got the diagnosis, your doctor gave you a prescription to fill and a return appointment 3 months later.  While you were in a state of shock from receiving the diagnosis, you were in no condition to question this.  You went home and crawled into bed, trying to figure out what lies ahead for you.

As a patient advocate, I have met many other People with Parkinson’s (PwP’s) who have had this terrible experience at the time of their diagnosis, myself included.  Yes, there is currently no cure for PD, but there are a lot of things that the person with PD can do to live well.  The delayed diagnosis and lack of education are probably the biggest obstacles for us at the beginning.  We may not be told to exercise.  We may think that PD only happens to older men who are shuffling and stooped over.  We do not know that there are many things that we can do to improve our situation, with medication, exercise, therapy and more.  And we most likely do not know that there are a huge number of people who have been living with PD  for years and are living active productive lives

One of my primary goals, and that of other patient advocates who I have spoken to, is to reach out to Primary Care Physicians and Neurologists to encourage them to do the following to ease the shock of the diagnosis:

1:  Refer patients to a Movement Disorders Specialist (MDS) if there is one nearby.  A movement disorder specialist is a neurologist who has received additional training in Parkinson’s disease (PD) and other movement disorders including dystonia, chorea, tics and tremors.  They are more knowledgeable about the latest treatment options, the need for exercise and all things Parkinson’s.

2.  If they cannot refer the patients to a MDS, have materials from the Parkinson’s Foundation, Michael J Fox Foundation, Davis Phinney Foundation, local support groups or organizations, and other resources available for the patients.  PwP’s need to learn what they can do to help improve their quality of life early in order to cope with their diagnosis.  This new, unwanted friend will be with them for the rest of their lives, so the sooner a person can take action, the better off they will be.

3.  Schedule a follow-up appointment within a month and encourage the patient to bring someone with them to listen and to ask questions.

4.  Connect the newly diagnosed person with Patient Mentor who can talk to him/her on a personal level about living with PD.   Several organizations have Patient Ambassadors or Mentors who are comfortable in this role and are happy to help.  I have met a number of newly diagnosed Parkies for coffee, and they are always surprised when they see me since I don’t fit the image that they had of someone with PD.

5.  Most importantly, the doctor should tell them to start moving.  Exercise has been shown to be the best medicine for PD.  They should advise the PwP to start slowly if he/she has not been exercising, and increase the duration and intensity over time.  A referral to a physical therapist trained to work with PwP’s is always a good first step to living well with PD.

NO ONE should be sent home with only a prescription and a return appointment 3 months later.  Given the right information and instructions, the newly diagnosed Parkie will be much more prepared for a future with Parkinson’s.

The World Parkinson Congress and why you should be there with me!

WPC2019_SaveTheDate_1125x360px_Mars2017_2

 

The 5th World Parkinson Congress will take place in Kyoto, Japan on June 4-7, 2019. These meetings are unique and deserve both our attention and support.

It is not just that the meeting brings together doctors, patients, researchers, caregivers, and other allied professionals together for 4 days to talk about all  things Parkinson’s. It is also not just that there are a variety of session formats and sizes that will highlight new research, models of care, and collaborations that are changing the lives of those living with Parkinson’s today.

What really sets this meeting apart — and the main reason I am going for the second time — is that People with Parkinson’s (PwP’s) are centerpieces and not just observers.  We are welcome to participate in any sessions that interest us.  We are encouraged to lead a session, to submit papers,  posters, videos and other media and messages.  In other words, we are true equal partners and contributors in every sense imaginable.  (Full disclosure:  I am an official blogger for the conference and in that capacity, will be sharing my experiences there.  But having attended the 4th Congress two years ago in Portland and enjoyed and learned from it immensely, I would be going to Kyoto in any event.  And it’s a trip to Japan.)

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Parkie the Raccoon Official Mascot of the WPC

If it is even remotely possible that you can attend you owe it to yourself to seriously consider it.  What can you expect?

  • The opportunity to meet people from around the world who are making a difference for those of us living with Parkinson’s.
  • The opportunity to get to know other PwPs from around the world and to make new connections and, quite possibly, meaningful and close friends.
  • The opportunity to learn the most up-to-date news about all things Parkinson’s.

There is, literally, something for everyone including PwPs and their caregivers/family.   (I told  Mr. Twitchy not to attend Portland because I worried there would not be anything for him.  Big mistake.  So I asked him to come this time and he is very much looking forward to going.  Did I mention it’s a trip to Japan?)

Registration begins next week on September 10.   The website is https://wpc2019.org/ (or you can just click here).  If you are interested in volunteering, click here for more information.  If finances are an issue, travel grant applications will also be available in December.

One last personal pitch.  Before you go, or even if you cannot go, make sure to participate in our “messages of hope.”  Three women who became good friends of mine at the 2016 WPC– Naomi, Clara and Amy — were so inspired that they created a global project, Soaring with Hope 4 PD,  to promote hope for People with Parkinson’s Disease.  Their goal is to collect at least 12,000 messages of hope to be written on origami Cranes that will be part of an art installation at the Congress.  Let’s all take the time to contribute to that.

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* As an blogger, my “official” duties will be sharing my experiences.  But I hope to do more than that.  It would be wonderful to meet any of you who will be attending and also to create a photo gallery on the blog of as many of the PwPs I meet there as possible.  So please let me know if you plan to go.