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.

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.

Parkinson Foundation Logo

 

 

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.