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.

Looking back at 2017 and forward to 2018

Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties. Helen Keller

It’s that time of year again, when we look back to see what we have accomplished, and look forward to the challenges and opportunities of the year ahead.

First, I want to thank all of you, the readers of this blog, for following me this past year.  It has been an adventure for me.   I hope that we will continue this dialogue for many years to come.

It has been 9 years since my double diagnosis of Parkinson’s and Breast Cancer.  Hard to believe that it has been that long.  I am doing quite well, with my symptoms mostly relieved by medication and exercise.  Of course there are ups and downs, especially while living with Parkinson’s.  But for the most part, nothing holds me back.  Mr. Twitchy and I have been traveling extensively, and plan to continue going places near and far, as long as we can.

Some of the highlights of our past year:

  1. The best part:  The continued growth of this blog has been a blessing beyound description.  The ability to connect with so many, to share information — and inspiration — with each other, to confirm that we are not alone and that we are, in fact a community, has brought joy and meaning that is difficult to put into words.  Let’s continue to read and comment  and inform each other; and it would be a thrill to meet any (and maybe many) of you at the Kyoto World Parkinson’s Congress in 2019.
  2. The most curious part:  The post with the most views in 2017 was actually from 2016; “Breast Cancer vs Parkinsons” discussed how the diagnoses are seen so differently, with the former being “acceptable” and the latter something to keep hidden.  The dichotomy seemed to resonate with a lot of people.  Sex and the PD Woman came in a pretty distant sixth place.  Not sure what that means.  (Maybe an update with pictures in 2018?)
  3. The most humbling part:  Being named one of Stanford Medicine’s Favorite Parkinson’s Blogs, one of Feedspot’s 50 top Parkinson’s bloggers (there are a lot of great bloggers on both lists, including many of the bloggers that I have been following since long before I began writing this blog) and being chosen as an official blogger for the 2019 World Parkinson Congress.
  4. The most exciting part:  Working with the Parkinson’s Foundation to create the study Women & PD TALK,  which grew out of the Women & Parkinson’s Initiative two years ago.   Led by the Parkinson’s Foundation and funded through the Patient-Centered Outcomes Research Institute (PCORI),  Women and PD TALK is the country’s first national effort to address long-standing gender disparities in Parkinson’s research and care based on the recognition that the disease affects the sexes in different ways.  Its goal is to develop new patient-centered recommendations to improve the health of women living with Parkinson’s.  It has  been a pleasure to work with Allison Willis, M.D., University of Pennsylvania and Megan Feeney, MPH, Parkinson’s Foundation, two true luminaries in the Parkinsons world. We have been privileged to work with teams of Patient Leaders and Health Care professionals who are planning forums in 10 different locations.  The first forum was in San Francisco in December and offered an exciting start that exceeded our expectations.

Some exciting prospects for 2018:

  1. The Women & PD Talk Forum in Los Angeles, on January 27, which I am honored to co-chair with Adrienne Keener, M.D. and Ali Elder, PT.   This will be the 3rd of the 10 forums being held around the US.
  2. The anticipated report and recommendations from Women & PD TALK  for improving care and outcome for Women with PD.
  3. Working with the World Parkinson Coalition to get ready for Kyoto in 2019
  4. Watching for, and sharing with you, the latest news on PD .  We seem to be inching closer to finding the root causes of Parkinson’s and possible treatments to reverse the damage.  Will this be the year for the big breakthrough?
  5. Oh, and we are expecting our 4th grandchild in May.  So there’s that, too.happy-new-year-2018-animation-fireworks-6062126467.gif

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.