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.”

Care Partners and Role Reversals

Family is not an important thing. It’s everything.

Michael J Fox
Ali Elder, Sharon Krischer and
Adrienne Keener MD

In Jnuary, 2018, I had the privilege of working with two amazing young women, Adrienne Keener MD and Ali Elder PT DPT, to plan the Los Angeles Forum for the Parkinson’s Foundation’s Women and PD TALK study. The end result was the creation of the first patient-centered action agenda to maximize quality of life for women with Parkinson’s disease. We worked together again to present a follow up program, Closing the Gender Gap, on Sunday at a local hospital. The event, sponsored by the Parkinson’s Foundation and [re+active] physical therapy, presented the research agenda for Women with Parkinsons based on the findings of the study.

An interesting thing occurred. We had originally planned to present this only to women with Parkinson’s. However, a significant number of spouses and carepartners came. So we decided that while the women were doing a reflective writing exercise, we would meet with the care partners. They were so happy to have a chance to talk about their issues that it became clear that having a support system for the care partners is just as important as having a support system for the women with PD. Before we could even ask a question,they immediately started talking, looking for answers and help.

It was an interesting group. Two young men were there with their mother and did not know where to turn for information or help. They were doing the best that they could, but really did not understand what their mother needed. They came looking to learn more about Parkinson’s Disease and how they could take better care of their mother. In contrast, there was a retired doctor who was very knowledgeable about Parkinson’s, but was at a loss about the dementia that seemed to be coming more and more of a problem for his wife. Different issues, same solution. They all needed to find out where THEY could get help so that they could be better care partners.

Many of the care partners were taking copious notes and it was clear that no one had asked them what they needed before. Our planned 10 minutes turned into 20 and the discussion could have continued the rest of the afternoon. We were very happy to help them in whatever way we could.

We had been so intent on talking about what is different for Women with Parkinson’s at our program that we forgot that the issues for their care partners are different too. The only thing that we said during our presentation is that the carepartners need to make time to take care of themselves. We did not consider how watching their spouse or mother with PD slowly decline would have such a profound effect on them. Just as the women experienced the role reversal of going from being the nurturer of their parents, spouse or children, the people we spoke to were also going through a change of identity in their new role as carepartner. Many of them were not ready for this.

There is some help on the horizon. When I spoke about the Facebook group for Women with Parkinson’s called Strongher Women, as a good resource for women with PD, founder Jen Parkinson noted that she will be setting up a companion site for carepartners in the near future.

And when I got home, catching up on my neglected emails, I saw an invitation from the PMD Alliance for an event for Care Partners, Adult Children and family or friends of those with PD and PSP next month in the Los Angeles area. How serendipitous! This was exactly what is needed. Just this morning I received an email from the Parkinson’s Foundation that they will be having a webinar on Coping with Dementia for Care Partners on November 5. It just shows that once you identify a problem, the means for a solution will turn up soon.

The main message that we stated over and over throughout the program, is that no one needs to be alone when fighting Parkinson’s Disease. We are there to support each other. And that applies to the Care Partners, too.

Revisiting Breast Cancer vs. Parkinson’s Disease

Each October, we’re met with a wave of pink ribbon products raising awareness and support for organizations fighting breast cancer.

Charity Navigator

October is Breast Cancer Awareness Month. Every year, Bloomingdales partners with several Breast Cancer organizations to raise money for research and treatment with its Give Pink Get More promotion. For $15, you can register your Bloomies card and recieve a gift card at the end of the month for a percentage of your purchases. A win-win for all involved. Even the Bloomingdales logo has a pink ribbon in place of the “L” for the month.

Throughout October the store sponsors events related to Breast Cancer Awareness Month. On Saturday I attended a yoga workshop at my local Bloomingdales before the store opened. The event was extremely well attended by women of all ages. For $10 you could attend the session and take home a pink yoga mat and other goodies.

Almost exactly 10 years ago, I was diagnosed with breast cancer (12/08) and Parkinson’s (saw doctor for symptoms beginning 10/08, diagnosed a year later). As I have written previously, it was much easier for me to come to terms with a breast cancer diagnosis than a PD diagnosis.

Why? There is so much support for women with Breast Cancer that it is almost a badge of honor. Many stores are pushing their “Pink” promotions. I even got an email from Charity Navigator with the following statement: “Each October, we’re met with a wave of pink ribbon products raising awareness and support for organizations fighting breast cancer. With so many organizations vying for your attention, it can be hard to know which ones are worthy of your support.”

Charity Navigator also comments on the fact that many companies are using charities as a marketing tool because it works.

Here are some findings from a 2013 Cone Study on cause-related marketing:

  • 89% of consumers would be likely to switch brands (if quality and price held constant) for one that’s affiliated with a charity, compared with 80% in 2010 and 66% in 1993.
  • 54% of consumers bought a product with a social and/or environmental benefit, compared with 41% in 2010 and 20% in 1993.

For diseases like Parkinson’s and many other “rare” diseases, there is little or no product marketing to raise awareness of the disease. April is Parkinson’s Disease month. Were you aware of that? Not many people are. We have our Parkinson’s walks throughout the year, not just in April. The one in Los Angeles this year is in November, not April. Why are we doing it now? The end result is that our message gets muddied and lost among the many other worthy causes.

Perhaps it is time for all of the PD organizations to work together to create a consitent and timely marketing plan. There is the Unity Walk in NY each April, but as far as I know, that is the only one of its kind in the US that encourages all of the organizations to participate together in April. Yes, it is difficult to coordinate multiple events in the same month, especially in large urban areas that may have walks in 3-4 different locations. So maybe we take the advice from the Cone study and find reputable partners to work with the PD organizations in April to get the word out about Parkinson’s Disease. A green yoga mat with tulips would be a great start! Are you listening, Bloomingdales?

Yoga mat by Bghnifs available at Amazon

WEGO Health Awards

Back in June, several of my blogger friends had submitted applications to become a nominee for the WEGO Health Awards for Best in Show Blog. I had joined WEGO a few months earlier, but really did not know much about their Annual Awards. I submitted an application. Then we had 6 weeks to get votes and endorsements. So a group of us worked on endorsing each other and getting our friends to vote for us. The voting period ended in July and then the judging of all of the nominees began.

WEGO received over 6000 nominees in 15 categories, which ranged from Rookie of the Year, to Patient Leader Hero. The 5 finalists in each category included the top 3 vote getters and 2 others chosen by the judges. I had applied for just the blogger category, but some one nominated me for 2 others as well. I don’t know if that helped, and I know I was not a top vote getter, but last week, on the designated date, I received an email from WEGO that I was one of 5 finalists in the Best in Show Blog category. What an honor! As far as I can tell, I am the only Parkinson’s person in any of the 15 categories.

A short video of the Best in Show Blog Nominees
The winner was Kelly Cervantes who writes about her daughter with Epilepsy Inchstones by Kelly Cervantes

So what is WEGO Health? It is an internet company that believes in the value of Patient Leaders as an integral part of our health care system. Patients with many different illness are trained and given the opportunity to connect to health care companies, providers and others as patient experts.

From the mission statement:

“WEGO Health is a mission-driven company connecting healthcare with the experience, skills and insights of Patient Leaders. We are the world’s largest network of Patient Leaders, working across virtually all health conditions and topics.”

WEGO collaborates with startups, life sciences companies, non-profits, agencies, government and all types of organizations across health care. They offer enterprise and on-demand solutions that allow organizations to leverage patient experience and expertise in the design, development and promotion of their products and services.”

In other words, WEGO seeks to empower Patient Leaders and Influencers (sounds so much nicer than “Bloggers”) to work with the health care industry in a meaningful way. There has been a noticeable trend in the last few years to include Patient Leaders in the decision making process for drug trials, treatment protocols and more. Our experiences and our opinions do matter. If the trend continues, I think that we will start seeing a bigger change in how chronically ill patients, such as People with Parkinson’s, are cared for in the not too distant future.

In the end, I did not win for Best Blogger, but I can try again next year. Apparently it usually takes 2 or 3 tries to be named the winner in a category, according to several people I heard from. In the meantime, I get another cool badge to put on my website! That is if I can figure out how to do it. Woo hoo!

Living Well with Parkinson’s Disease: the Patient’s Point of View

One of the great things about the World Parkinson’s Congress (WPC) is that People with Parkinson’s (Parkies) are encouraged to submit an abstract for the poster displays. If you are familiar with medical conferences, many do not include the patient’s point of view, just the scientists or researchers. So I decided to take advantage of the opportunity and submitted an abstract to the WPC on Living Well with Parkinson’s. The abstract was accepted and the next step was to actually do the research and produce a poster!

The following is a summary of my research methods and the results. There were not really any big surprises, but the important thing is that it opened up a conversation for People with Parkinson’s to give their point of view about what works for them day to day in their journey with PD, not what their doctors or their care partners say.

Objective:  As a blogger who writes about living well with Parkinson’s, I was curious about what other Parkies think contributes to their continuing to live well with Parkinson’s. 

Method:  I asked two groups to participate in the survey. The first was a Facebook group for Women with Parkinson’s Disease in November, 2018.  The second group were readers of my blog, Twitchy Woman, which is a mixed group. I posed the following question to both groups:

Please list the top 3 things that help YOU to live well with Parkinson’s. Then the flip side – the top 3 things that are obstacles for you:
For example: 
Positive: Exercise, Advocating for myself with my doctors, Friendships with other women with PD. 
Negative: Poor sleep, Tremor gets in the way of doing things, Daytime fatigue

Results:  There were 140 responses, 70 from each group.

ON THE POSITIVE SIDE:

EXERCISE IS THE SINGLE MOST IMPORTANT CONTRIBUTER TO LIVING WELL WITH PARKINSON’S – DWARFING ALL OTHERS. Medications, Emotional Support from family, friends, and especially friends with Parkinson’s, followed by a Positive Attitude were also important.

ON THE OBSTACLE SIDE:

DAYTIME FATIGUE AND INSOMNIA WERE THE BIGGEST OBSTACLES Many Parkies cited sleep challenges as their biggest problem, with 63% responding that lack of sleep and fatigue were a major obstacle for them.  Only 4 Parkies reported positively that they get enough sleep.

The effects of lack of sleep often cause other symptoms to flare up or become more severe. Balance and Gait problems, including falls, were the second most named obstacles, with Anxiety close behind.   Many other symptoms were mentioned such as constipation, dyskinesia, off times, as well as lack of PD resources in their area.

Conclusions: 

According to People with Parkinson’s: Getting enough sleep and exercise are the most important factors for living well with Parkinson’s Disease.  Lack of either will have a cascading effect on the severity of their symptoms day to day.

At the WPC, I was given a 2 hour time slot during lunch on Wednesday to stand in front of my poster and talk to people about it. I enjoyed seeing what other Parkie’s presented on their posters. And it was also a great way for me to meet other people, many of whom are followers of this blog. For those of you who came to my poster just to meet me, thank you. It was great to talk to you and I really appreciate your support.

The next World Parkinson’s Congress is in Barcelona in 2022. I don’t know if I will be submitting a poster again, but at least I can say that I did it!

I can check that off on the list of things I never thought I would do. That list keeps on growing, thanks to PD.

Warning: The results of this survey are from a compilation of comments from People living with Parkinson’s disease. The responders were self-selected, so they may not be representative of many others with PD. Please do not make changes in your medications or other therapies without speaking to your doctor first.