Reaching a Milestone and an Inspiring New Book to Read

Look at you.  You’re in Spain.  You’re walking out here on the Meseta.  How many people are doing this?  How many people with a chronic disease do you see out here today?……Do something good, Carol.  Find something good to do with it.”    From The Ribbon of Road Ahead

 

Twitchy Woman has reached a milestone.  This is post #201 ! ! !   When I started this blog, I never expected it to  continue for as long as it has.  And what a ride it has been. Somehow, I have posted almost weekly in the last 4 years, and am honored to have made Best Parkinson’s Blogs lists at least 6 times (see the sidebar).  Other opportunities for me have come up as a result.   I want to thank everyone of you who has been following me, whether it has been for 200 posts or just 1.  My initial blogpost was seen by just 15 people.  There are now over 1500 followers.  Your support and encouragement have kept me going.

On my way to Kyoto!

Speaking of opportunities, as you may know, I submitted an abstract to the World Parkinson’s Congress.  At medical meetings, researchers are asked to submit abstracts (a brief description of their research study).  If their abstract is accepted, they will then create a posWPC2019_LOGO_246x153.gifter based on their research for display.  For the WPC, People with Parkinson’s (PwP’s) were also encouraged to submit their ideas (abstracts) for living well with PD.  There will be hundreds of posters on display throughout the conference.  If you are attending the WPC, look for me on Wednesday, June 5,  between 11:30-1:30.  I will be at my poster in space 649 to talk about it and I would love to meet you.

Thank you to all who responded to my survey for this project.   I cannot give you the final results until after the WPC, but the most important things for someone to live well with PD are Exercise and Getting Enough Sleep.  Neither of these should be a surprise for anyone with PD.  If we don’t have a good night’s sleep, the daytime fatigue can be debilitating.  And that fatigue manifests itself in many ways.

As far as Exercise is concerned, the more you do, and the more intense it is, the better.  I had hand surgery last Thursday and have not been able to exercise since.  I am already noticing, 5 days later, that my tremor is acting up more.  We need to think of Exercise as medicine, and I have not been taking my medicine.

The Ribbon of Road Ahead

And speaking of exercise, I just finished reading an inspiring new book by fellow PwP, Carol Clupny titled The Ribbon of Road Ahead.  After her diagnosis of Parkinson’s, Carol was determined to walk The Camino de Santiago. If you have traveled in northwestern Spain, from Pamplona to Santiago de Compestola, you may have seen hikers walking along the route marked with seashells pointing the way.  Pilgrims from all over the world come to walk on this grueling 500+ mile network of pilgrim routes, from Southern France to Spain, for many different reasons, often hiking through rocky mountain passes.  The Way, as it is called in the movie with Emilio Estevez and Martin Sheen, is difficult for anyone without disabilities, but Carol was not going to let that stop her.  With her husband, son and other family members and friends at her side, she recounts the obstacles she faced as well as the accomplishments.

Carol went back 2 more times to walk parts of the trail with other women whom she had met along the way.  She has also biked across Iowa 3 times with her husband on the annual 450 mile RAGBRAI (The Register’s Annual Great Bicycle Ride Across Iowa) with the Pedaling for Parkinson’s team.  Much of the ride was done on a tandem bike named Grepedo.  She did all of this before her DBS surgery a couple of years ago. The final chapters recount her surgery and the small successes that were the beginning of regaining her life before PD.  Her story is inspiring, and shows that determination and grit can help those of us with a chronic illness get through some of the more difficult times.  Carol has indeed done something good by sharing her story with us.  Look for Carol at the WPC in Kyoto if you are there.

 

Because it is World Parkinson’s Day….

There are many things I want to share with you.

Image may contain: 15 people, people smiling

Yesterday, the first #ParkinsonsEve took place in Great Britain.  I wish I could have attended, but going to Kyoto is a priority this year.  However, those of us who stayed home will have an opportunity to watch at least some of  the conference in the next few days.  Stay tuned for the info on where you can watch it online.  For more info go to parkinsonseve on Facebook.

Update 4/15  Click on the video to see all of the conference speakers:

 

This month, the Parkinson’s Foundation wants to know your 🔑  to living well with PD.

Whether you are living with PD, are a caregiver or a healthcare professional, tell us your tip. From managing freezing to sleeping and bathroom tips — no topic is off limits. Our hope is that others can replicate your tips and make their life just a little easier.

Click here:  #KeyToPD  to share yours.

My  #KeyToPD Finding new friends with PD who understand how you feel.

12 Things You Don’t Understand About Parkinson’s Unless You Have It

Are you familiar with the website The Mighty?  I was not until contacted earlier this week by them to contribute a few quotes for  12 Things You Don’t Understand About Parkinson’s Unless You Have It,  which was published today. The Mighty, according to their website, is a digital health community created to empower and connect people facing health challenges and disabilities.  There is a Parkinson’s community on the website that you can subscribe to, and you can also share your stories, ask questions and connect with other Parkies.

Francesca ParkinsonsChampions Villa's photo.

 

And finally, there were problems with the survey that I sent out a few weeks ago asking how YOU are living well with Parkinson’s Disease.  I want to thank the 139 people who completed the survey, but unfortunately,  I will not be able to use the data.

I am going back to the questions as originally posted on Facebook.

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 

Click here to take the survey.  Any answers sent by email will not be included in the final report.  Please respond by April 22.  Thank you in advance for helping out.

 

 

 

 

 

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”.

Is There a Coming Pandemic of Parkinson’s?

pan·dem·ic\/panˈdemik/ adjective: occurring over a wide geographic area and affecting an exceptionally high proportion of the population  “The 1918 flu was pandemic and claimed millions of lives.”   noun: an outbreak of a disease that occurs over a wide geographic area and affects an exceptionally high proportion of the population: “a pandemic outbreak of a disease”

The alarm that there could be a “pandemic” of PD was sounded last week in a report in the Journal of Parkinson’s Disease, “The Emerging Evidence of the Parkinson Pandemic”  by E. Ray Dorsey, Todd Sherer, Michael S. Okun and Bastiaan R. Bloem. (Mr. Twitchy, always on the lookout for Parkinson’s news, ran across the study today and sent me several articles today based on this report.)

 

Screen Shot 2019-02-07 at 2.39.35 PMThe authors* are all highly respected researchers in the Parkinson’s world.  They have been following the growth of Parkinson’s Disease since 1990.  From 1990 – 2014, the number of people with Parkinson’s Disease worldwide doubled to over 6 million.  The authors predict that those numbers will double again to 12 million by 2040,  They say that “The Parkinson pandemic is fueled by aging populations, increasing longevity, declining smoking rates, and the by-products of industrialization.”
Yes, the population is aging.  Life expectancy has increased by 6 years in the last 2 decades and will most likely continue to increase, putting more people at risk for PD after age 65.  The impact on our health system and support systems will be enormous as the number of people with advanced PD increases.
Declining smoking rates???  Many studies over the years have shown that smoking decreases the risk of PD by about 40%.  As smoking rates decline, there could be an increase in PD.  However, if you are not a smoker, please don’t consider starting just to reduce your PD risk.
The “by-products of industrialization” include pesticides, solvents and heavy metals. However, they emphasize that exposure to these agents is preventable in the workplace. The big question is, how many employers will take the necessary steps to protect their workers from being exposed.  This is definitely a cause of PD that can be reduced.
But the news is by no means all doom and gloom.  Quite to the contrary.  According to two articles, one from Science Alert and another from Eureka Alert, researchers are getting closer to finding what actually causes Parkinson’s, and many new treatments for PD are being approved every year.  We may not have a cure for a while, but we are getting closer to slowing down the progression of PD to make our lives much better.
Against that background, the Dr. Dorsey proposed that the Parkinson’s community form a “PACT” to Prevent, Advocate for, Care, and Treat the disease through understanding the root causes (environmental, genetic, and biological), expanding new care models that seek to bring expert care to all, and developing new highly effective therapies.  They point out that, the most effective therapy we have today (levodopa) is now fifty years old. It is time for something new.  Now.
Pandemics in the past, such as — polio, breast cancer and HIV are a fewe recent examples — have been reduced successfully and substantially because of activism coming from the community.  We can both prevent potential the PD pandemic and help those who already have it by supporting research, participating in clinical trials for new treatments, and raising awareness about Parkinson’s.  The key, the authors say, is that we all work together to accomplish this goal.

*E. Ray Dorsey, Department of Neurology and Center for Health+Technology, University of Rochester Medical Center, Rochester, NY, USA.      Todd Sherer, Michael J. Fox Foundation for Parkinson’s Research, New York, NY, USA.       Michael S. Okun, Fixel Center for Neurological Diseases, Program for Movement Disorders and Neurorestoration, Department of Neurology, University of Florida, Gainesville, FL, USA.   Bastiaan R. Bloem, Radboud University Medical Center, Donders Institute for Brain, Cognition and Behavior, Department of Neurology, Nijmegen, The Netherlands.

How Are Women with Parkinson’s Different than Men?

IMG_2447
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.