A Final Update on Women and PD TALK

If you have been following Twitchy Woman for the last few years, you have seen numerous updates on “Women and PD TALK”, the project that I co-chaired for the Parkinson’s Foundation that looked at the unmet needs of women with PD. Last Friday, the Patient-Centered Outcomes Research Institute (PCORI), which gave a grant to the Parkinsons Foundation for the study, published a story about our work on its home page. I am sharing it with you here today.

A special thank you to Melissa Schenkman, who wrote the article.

Improving Life for Women with Parkinson’s Disease

PCORI Engagement Award supports the creation of a national, prioritized women and Parkinson’s research and care agenda.

By Melissa Schenkman, MPH, MSJ Writer and Editor PCORI

November 2019

As an audiologist, Sharon Krischer used her skills to help others improve their hearing. But for a long time, she couldn’t hear what her own body was telling her.

The mother of three daughters and grandmother of four remembers writing thank you notes one day when her right foot started shaking. It continued happening occasionally, but the inconsistency made Krischer think nothing of it until she broke her opposite leg and the twitch in her right foot returned. This time it wasn’t going away.

Krischer’s internist prescribed anti-anxiety medication, but the tremor spread to her right hand. She saw a neurologist who said she had a Parkinson’s-like tremor and prescribed an anti-Parkinson drug.

Graphic for November 2019 PCORI Story on women and Parkinson's disease.
An illustration of a human body with icons illustrating motor skill symptoms and nonmotor skill symptoms
Bradykinesia, Vocal symptoms, Rigidity and postural instability, tremor

After experiencing hallucinations from the medication, her internist referred her to a movement disorders specialist at University of California, Los Angeles. There, 18 months after first seeing symptoms, she received a diagnosis of Parkinson’s disease (PD). She was 57 years old.

“The first year is very, very hard if you are a young woman with PD because you don’t know how people will react,” Krischer said. “It’s also hard to go from being the caregiver to receiving care, especially if you have children.”

Her search for information on PD in women drove her to become the lead patient partner on a Eugene Washington PCORI Engagement Award, supporting a project to improve the lives of women with PD through research and care.

A Different Experience

Krischer is one of nearly one million Americans who by 2020 will be living with PD. It’s a number that is greater than the number of people diagnosed with multiple sclerosis, Lou Gehrig’s disease, and muscular dystrophy, combined.

PD is a neurodegenerative disorder that breaks down neurons, cells that are the building blocks of our central nervous system, the body’s own electrical grid. It mainly affects nerves producing the neurotransmitter dopamine, a substance allowing the electrical transfer of messages from one nerve cell to another or from a nerve cell to a muscle.

People can experience both motor and non-motor symptoms. Motor symptoms can include resting tremor. However, non-motor symptoms include less visible ones, such as depression.

While the cause of PD is unknown, researchers have found that men are 1.5 time’s more likely to have PD than women.  

Several women went to a support group only once and never went back because it was almost all men. The only women there were the wives. They’d look at them and say, ‘Where’s your husband? Isn’t he the one with Parkinson’s?

Sharon Krischer
Lead Patient Partner, Co-lead, Los Angeles, CA, forum

Women’s experiences with PD differ from men. They can face longer times between symptom onset and diagnosis, and between symptom appearance and visiting a movement disorders specialist, according to a small study conducted at Beth Israel Medical Center. Women may experience more non-motor symptoms and are more likely to be single or widowed, while men are more likely to rely on a spouse as their primary caregiver.

“A lot of people measure health through mortality. If that is the outcome you’re looking at, of course, men have poorer health outcomes if women live longer,” said Megan Feeney, MPH, senior manager, community engagement at the Parkinson’s Foundation, who helped spearhead their PCORI-funded project. “But when you look at other health issues women with Parkinson’s develop in conjunction with not having a support structure, the quality of life challenges they face are huge.”

The project created a three-pronged agenda specifically for women with PD. The agenda focuses on:

  • Increasing and improving research (basic, translational, and clinical) to better understand PD in women
  • Improving healthcare access and delivery for women with PD
  • Empowering women with PD and their care teams to advocate for optimal Parkinson’s care focused on women’s unique experiences

Maximizing Quality of Life

The decision to shine a light on women living with PD came from informal conversations in 2014 with women noting the lack of information, resources, and connections available to them.

Photo for November 2019 PCORI Story on women and Parkinson's disease.
A photo showing four women living with Parkinson’s disease as they lead a panel session at the National Forum in Houston, Texas, in October 2018.
From left: Yvonne Hylton, Kelly
From left: Yvonne Hylton, Kelly Weinschreider, Lisa Cone, and Ann Boylan.
(Photo courtesy of Parkinson’s Foundation)

Women living with Parkinson’s disease lead a panel session at the National Forum in Houston, Texas, in October 2018.

Answering the call to action, Veronica Todaro, MPH, Feeney, and others launched a Women and PD Initiative, focusing on education and information. They organized a conference in 2015, selecting 25 women to attend.

Krischer was one. There, she learned about the limited information on women and PD, including knowledge on mental health and intimacy.

Attendees applied the knowledge, engaging their communities. For example, Krischer started a support group for women with PD, hosting activities including boxing classes and even a sex therapist’s talk.  

“We now had the educational and community pieces, but still needed to understand where the gaps in patient-reported outcomes were,” said Todaro, executive vice president and chief operating officer, Parkinson’s Foundation.

It sparked her idea for leading a PCORI-funded project to create a national, prioritized Women and Parkinson’s research and care agenda. She collaborated with a national team, including women with PD, and representatives from medical universities and Parkinson’s organizations who assisted in creating materials and ensuring activities aligned with community needs.

The project, Women and PD Teams to Advance Learning and Knowledge (TALK), “allowed for a structured way to bring the voices of women with Parkinson’s into discussions around better outcomes related to decision making with providers and researchers to maximize women’s quality of life,” Todaro said.  

Graphic for November 2019 PCORI Story on women and Parkinson's disease.
Topic Talk: Topic discussion differences between women with Parkinson's disease and other stakeholders at the 10 Women and PD Talk regional forums
A graphic illustration o

In all, 242 women with PD and 178 stakeholders—caregivers, family members, health professionals, government representatives, and others working directly with PD patients—attended 10 forums around the country.

Empowering the Patient Voice

Women with PD discussed their experiences in relation to risk, symptoms, treatment, and care.

Krischer co-led the Los Angeles forum, where discussions included the difficulty of diagnosis, insomnia, and dismissiveness of some doctors because of PD’s association with men.

Another interesting issue was women’s experiences with seeking support.

“Several women went to a support group only once and never went back because it was almost all men. The only women there were the wives,” Krischer said. “They’d look at them and say, ‘Where’s your husband? Isn’t he the one with Parkinson’s?’”

Experiences like this were the norm in Sioux Falls, South Dakota, where Mary Tidwell lives. She started a support group for women after her 10-month journey to receiving her PD diagnosis. She believes it’s the only group specifically for women in the state.

Not surprising given that until August 2018, there was only one movement disorders specialist in South Dakota—located 350 miles from Tidwell.

There’s a real hunger for opportunities to connect with other people that have the disease, to learn from each other, and to support each other.

Mary Tidwell
Patient Partner, Women and PD TALK, Co-lead,
Sioux Falls, SD, forum

Women in rural areas face even greater challenges. For some, access to care means community health centers without neurologists and having the closest neurologist hundreds of miles away. Distance combined with the farming work cycle and the state’s harsh weather can limit opportunities to see a neurologist.

“It can be a very lonely disease,” Tidwell said.  “There’s a real hunger for opportunities to connect with other people that have the disease, to learn from each other, and to support each other.”

The importance of establishing connections and having patients lead the way resonated with project stakeholder Ruth Schneider, MD, a movement disorders specialist at the University of Rochester’s Parkinson’s Foundation Center of Excellence.

“In my practice, I’ve found that women are more likely to internalize the disease, so PD becomes a part of their identity rather than a medical illness,” said the Rochester forum’s co-leader. “We are increasingly recognizing gender disparities in PD and our approach to addressing them has to be driven by our patients if we will make meaningful change.”

Making a Lasting Impression

Patients, researchers, and others disseminated the agenda through multiple efforts.

Yvonne Hylton, a woman with PD, Allison Willis, MD, a project co-lead, Feeney, and clinician stakeholders presented the agenda at the 2019 Parkinson’s Foundation Center Leadership Conference—an audience of leading researchers and clinicians from the foundation’s Centers for Excellence around the world.

The project is also affecting medical studies. Researchers reanalyzed data in the Parkinson’s Outcomes Project database, examining sex in relation to neuropsychological referral and adherence, comparing models of care within the foundation’s Centers of Excellence. They presented the results at the Movement Disorders Society annual meeting.

Image for November 2019 PCORI Story on women and Parkinson's disease.
Sharon Krischer writes a blog to encourage the exchange of ideas and solutions with others affected by Parkinson’s disease.
Sharon Krischer writes a blog to encourage the exchange of ideas and solutions with others affected by Parkinson’s disease.

Finally, several breakout sessions helped inform the Newly Diagnosed campaign, which aims to close the information gap so people can better manage their PD from the start.

While efforts to integrate and disseminate the agenda into future research continue, the patient presence remains constant, including their role in a second PCORI Engagement Award. The award will support the foundation in creating a nationwide standardized model of patient advisory boards for implementing patient engagement at medical institutions and furthering Parkinson’s patient-centered comparative effectiveness research.

“I think that scientists have an idea of what they are looking for, but I think you get a better perspective of what’s really happening by including the patient voice in the process,” Krischer said. “We are the ones going through this and what you think we need may not be what we think we need.”

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”.

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

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

 

 

Women & Parkinson’s Initiative (Part 1)

Magic lies in telling stories

Robin Morgan, PDF Research Advocate and conference organizer

Roberta and Sharon fighting for their dinner


Greetings from New Jersey where I have been privileged to be part of the first Women and PD conference sponsored by the Parkinson’s Disease Foundation.  This first ever conference was organized by 4 amazing women from across the US who have all received previous training by the PDF to be Research Advocates.  All of them have PD and all are passionate about helping others fight the disease.

There are 25 participants who are all very accomplished in different ways.  One woman is a neurologist who had early onset PD.  Others include lawyers, physical therapists, teachers, researchers and even a pioneering feminist who has a weekly radio show.  Several have written books on PD, including “The Peripatetic Pursuit of Parkinson’s” which I highly recommend, Parkinson’s Creative Collective and “Parkinson’s Diva”  Parkinsons Diva  (I have not yet read this one).

The goal of the conference is to bring women together to learn in a small group setting about living with Parkinson’s Disease and issues that are unique to women with PD.   Each of us will then plan an event, retreat or other program to share what we have learned with other women with PD.  The better informed we are, the better equiped we are to deal with whatever PD brings us in the future.

Today I also met Roberta Marongiu, founder of Rock Steady Boxing NY/LA, the boxing program that I attend in LA.  Since she is located in NY, this was the first time we met.   Roberta is a researcher who focuses on the genetic causes of PD and the developement of new gene therapies for PD.

Sessions today included a very informative talk on Gender Differences in PD by Allison Willis, MD, a discussion on Sexuality and Women with Parkinson’s Disease with Sheila Silver PhD. and finally a lecture by Becky Farley, PT, PhD, who developed PWR! Parkinsons Wellness Recovery.  PWR! emphasizes doing exercies with amplitude, or large movements.  These movements can help with posture, balance and may even help repair the brain.   Today she led us in some basic movements.  Tomorrow we will spend an hour actually working out with her program.

I have also met several other bloggers here.  When talking about the proliferation of books and blogs about PD, one woman said that if you have PD,  you have to write a book.  Another one said she heard about a man who was working on finding at least 10,000 blogs on PD.  I guess the one thing we all have in common is that we want to tell our stories.
Don’t forget to follow my Facebook Page for the latest news on PD research.