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.

PD Women and Other News

Just a short post this week sharing three articles that I read this week.

The first is statistics about Women with Parkinson’s from the conference I just attended.

From Parkinson’s News Today:  Parkinson’s Disease Foundation Launches Women and PD Initiative to Urge Local Communities Involvement

According to a patient survey conducted by the PDF some of the under-recognized clinical needs of women with PD are:

  • 72 percent of women living with PD say that there are issues specific to women with Parkinson’s that they feel are not anywhere addressed;
  • 88 percent think there is a need for resources and information focusing on the specific needs of women;
  • 91 percent never received these types of information and/or resources;
  • 91 percent said that there are no specific meetings, conferences and/or support groups for women with PD in their communities; and
  • 89 percent stated that they would participate in women and PD meetings if any were available in their area.

Feel free to share this information with others.

The second, from the Boston Globe, is about the new research coming out about alpha-synuclein and the promise it holds for those of us with Parkinson’s Disease.  The beginning of the End talks about the race to find a cure:

The potential breakthrough comes from a recent focus on alpha synuclein, a protein found mainly in nerve cells. It is so biologically obscure that scientists aren’t even sure of its purpose. What they do know is that the protein can deform, or what scientists call misfold, and gum up into clumps called Lewy bodies, which litter the transportation system that nerves rely on. The nerves die. If enough die, your body stops producing the dopamine necessary for normal functioning. You have Parkinson’s disease…. the discovery has given scientists a target for therapy. Their new weapon? Vaccines, or more generally, immunotherapy — an approach that has kickstarted the kind of outbreak you can cheer for: loads of biotech investment and clinical studies.

The third article, The New Prescription for Parkinson’s:  Puttering, comes from The Michael J Fox Foundation.  A recent paper from The University of Michigan  shows that more everyday physical activity, perhaps more so than vigorous exercise, is associated with less severe motor symptoms. So my best advice is to just keep on moving!

Have a wonderful Saturday.

New Beginnings

A Rosh Hashanah joke from the 70’s, when digital clocks were all the rage:

play.google.com
play.google.com

“You gotta get one of these new clocks.”
“Nah, I don’t need it.”
“But you can see it at night!”
“Who needs a clock at night?”
“What if you wake up, and you need to know what time it is?”
“I use my shofar.”
“A shofar doesn’t tell time!”
“Of course it does. I step outside, blow it strong, and someone shouts:
“What are you nuts?! It’s 2:45 in the morning!”

          Joan Wolstein,  www.neurocommunity.org

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http://www.rosh-hashana.com

Of course we all know that the digital clock reminds us of our ongoing sleep problems related to Parkinson’s.  For those of you who are not Jewish, a Shofar is a ram’s horn that is blown on the holidays Rosh Hashonah and Yom Kippur in synagogues. Can you imaging blowing the shofar everytime you wake up during the night?  My neighbors would have the police out in no time.

At this time of year, we pray for a sweet and healthy New Year.  It is a new beginning, much like the secular New Year on January 1.  According to Jewish tradition, we are being judged by G-d for the coming year during the 10 day period encompassing the two holidays known as the High Holidays or the Days of Awe.   We pray that we will be written in the book of life.  For those of us with PD, let’s also pray for the breakthrough in treatment that seems so close.  And of course, wishing all of you much good health in the coming year.

Tomorrow I will be flying to New Jersey to attend the Women and PD Conference sponsored by the Parkinson’s Disease Foundation.  One of the requirements of the conference is that the participants plan an event(s) for women in my community with PD.  If you have any thoughts about an event you would like to see happen in the Los Angeles area for women with PD, please e-mail your ideas to me by Friday.  I have a few ideas, but your input will be valuable as I try to determine what type of event or program I will be planning.  In addition, please let me know if you want to work with me on the event.

More to come next week.

Shana tova u’metukah (have a good and sweet new year)

Sharon