"Building Community for the Journey" ---------November 2023

“Peering from some high window, at the gold of November sunset and feeling

that if day has to become night, this is a beautiful way.” — E. E. Cummings

The Accidental Advocate

by Sharon Kircher

You never know where your PD journey is going to take you. It was never my intention to be an advocate for women with Parkinson's disease (PD). I just started writing a blog, Twitchy Woman, to help people who were newly diagnosed by providing resources and tricks I had learned living with the disease. The accidental advocate gradually emerged!

I stumbled through the first year of the blog, trying to figure out what direction I was going to go with it. Fortunately, 6 months after I started writing, I attended a conference called The Women and PD Initiative, that was offered by the Parkinson’s Disease Foundation (now the Parkinson's Foundation). I was excited to be part of this exclusive group of 25 women with PD, many of whom have since become movers and shakers in the Parkinson’s world.

After two and a half days of learning from many experts about women and PD, we were charged with doing something for women with PD when we returned home. I did just that!

Paying it Forward

After the conference, I reached out to local women who followed my blog, inviting them to a meeting at my home. That was the beginning of what we called the Twitchy Women non-support support group. No gripe sessions were allowed. We wanted to have fun and learn things.

The group quickly grew from 15 to more than 50, and included boxing sessions, yoga classes, speakers on various topics, and even an arts and crafts day. We met about once every 4-6 weeks for several years. Then the COVID pandemic hit.

The Pandemic Changed Everything

On March 22, 2020, exactly 6 years after the blog debuted, we went live on Zoom with Sunday Mornings with Twitchy Woman. By then, I had a lot of contacts in the PD world, and it was no problem finding guest speakers for our twice monthly meetings on Sundays. Women were finding us from Europe, the UK, Australia and beyond. The one thing in common was that we all have Parkinson’s.

During this awful time when we were stuck at home with little contact with the outside world, Sunday Mornings with Twitchy Woman became a safe haven for many. We could reach out and talk to other women with PD, no matter where they lived so no one had to be isolated and lonely. Over 1,100 women have now participated since that first Zoom.

Accidental Advocates Grew

All of this activity created other accidental advocates too. An example of this is a small group of women who volunteered to create our amazing Peer to Peer Mentoring Program that has helped many. To date, we have matched over 150 women with peer mentors.

Looking Ahead

Twitchy Woman, which started because of a blog and conference attendance, took on a life of its own and has become known worldwide for leading advocating for women with PD. We have joined with other groups to make our collective voices louder, especially in the area of research for women with PD. I got to participate in a panel discussion at the World Parkinson's Congress in Barcelona, Spain last summer. And what was the topic? Advocacy for people with Parkinson’s!

I have met many amazing people because of Twitchy Woman. Many of us have become friends during a time when all we wanted was to combat the loneliness created by the Pandemic and this disease. Today, many of the women in our group refer to us as a tribe. I love it! It has been an amazing journey and I hope to be able to keep on advocating for our women for a lot longer!

Editor's Note: We are thrilled that Sharon Kircher "Twitchy Woman" will be the keynote speaker at PANC's 2024 Annual Education Conference.

Swing for Parkinson's and Silent Auction Success!

Thank you to all those who supported PANC at the Swing for Parkinson's event and online silent auction late last month. A great time was had by all at Topgolf, and we hope our auction participants enjoy their prizes.

Just about $10,000 was raised from this fun, light event and auction. Many came not to play golf but enjoy friends and PD supporters. PANC services can continue and will grow thanks to the help of attendees, volunteers, and donors who participate in events like these. Watch for upcoming events in the future and please let us know if you are interested in hosting a fundraiser on behalf of PANC. It does take a village!

"The Long Road to Hope" Documentary

Available For Free Viewing Now

The Long Road to Hope is a recently released one-hour documentary that features twelve remarkable individuals with Parkinson's disease. The film is based on the book Ending Parkinson’s Disease written by renowned PD researcher and clinician, Dr. Ray Dorsey from the University of Rochester (keynote speaker at the 2022 PANC Annual Education Conference).

Parkinson's disease is the fastest growing neurological disorder in the world, outpacing Alzheimer’s, and can be triggered by exposure to pesticides and industrial chemicals. The film discusses the pandemic scope of the preventable source of this disease and how addressing it will require a global effort with the same level of focus and resources employed with success to address other public health challenges, such as polio, HIV, and breast cancer.

To learn more about PD and the information contained in the documentary, you can purchase Dr. Dorsey's book here. All authors’ proceeds fund efforts to end Parkinson’s disease. Email the University of Rochester here if you cannot afford the book and would like to receive a complimentary copy.

PANC's Dr. Matt Brown's Study Featured on KCRA

Can exercise help slow the progression of Parkinson's disease in patients? That's the question a team of faculty and student researchers at Sacramento State are trying to answer with a new study recently featured on KCRA news.

Dr. Matt Brown, professor at California State Sacramento, director of the school's neurophysiology lab, and dedicated PANC Board member, is leading this study on how exercise affects the evolution of the disease. Watch the featured story about the research and findings below.

ParkinsonWISE® Training for

Exercise Professionals in Santa Rosa

Cost: $40 -- Register & Info Here

Share with your favorite exercise instructors, coaches, and teachers

Developed by Kaiser Permanente and PANC

for exercise professionals, coaches, teachers, and mobility instructors

on how to work with clarity and confidence with the PD community. Flyer here

Legislative Update

HUGE POLICY WIN: EPA Proposes Full Ban of TCE

The Environmental Protection Agency (EPA) recently proposed a full ban of the toxic chemical trichloroethylene (TCE). After nearly a decade of lobbying and advocacy, the Michael J Fox Foundation policy team had an in-person meeting with EPA staff in September about the devastating report about Parkinson’s-related exposure risk at Camp Lejeune and other significant evidence that TCE is one environmental cause of Parkinson's disease.

Then late last month, the EPA proposed a full ban on TCE! There is a short comment period during which time the American public can weigh in with their thoughts. This is a monumental decision on the part of EPA. The action marks the first time in more than 20 years that EPA has tried to use its authority under the Toxic Substances Control Act (TSCA) to restrict the use of a hazardous chemical. In May 2020, Minnesota became the first state in the country to ban trichloroethylene.

TCE is a colorless volatile organic compound. It is used to degrease metal parts and found in cleaning agents, degreasers, paints, sealants, coatings, and some auto products like brake cleaners. It is also found in certain consumer products including adhesives, wood finishes, paint remover and stain removers. TCE can be absorbed through the skin and inhaled without smelling it and can be detected in America's soil and water ways.

The National Plan to End Parkinson’s Act Moves Through Congress

This ground-breaking bill continues to gain support in both the U.S. House and Senate, with 144 cosponsors in the House and 21 in the Senate. The legislation is currently moving its way through the House Energy and Commerce Committee.

If you haven't had an opportunity to add your name to the petition to legislators to pass this bill that will change the course of Parkinson's care and research, please click here now. Thank you!

Helpful Apps for Parkinson's

Here are a few favorite apps specifically for folks with Parkinson's disease:

StriveMD

StriveMD is an app that can be used on an Apple watch that is approved by the FDA. This app uses Apple’s Movement Disorder API to measure and record tremors and involuntary motions common in people with Parkinson’s disease. It also allows users to track their symptoms and improvements, accelerating the time to an optimal medication schedule. To learn more, click Here.

CogniFit

This brain training app allows users to evaluate and improve cognitive functions through games, puzzles, tests and brain teasers. The app exercises target areas such as memory, attention span, coordination and planning – and offers a specific program for people with Parkinson’s. To learn more, click Here.

Steady Type Keyboard

This new on-screen keyboard is especially designed for people experiencing hand tremors. The keyboard helps users who have difficulty typing and even suggests words that require less keystrokes. The app works with all IOS applications – including messages, emails and web browsing. To learn more, click Here.

November Free PD Webinars

Wednesday, November 15 at 10am

Parkinson's Anonymous: Keeping Their Secret by the Parkinson's Foundation

Highlight the challenges many people face when negotiating how and when their loved one will share their diagnosis publicly. Recognizing that the family member’s needs may differ from the person with PD, attendees will hear from peers who have navigated this process and the lessons they’ve learned. Ways to find support without crossing your loved one with PD’s boundaries will be highlighted. Info here

Wednesday, November 15 at 11am

Drumming for Wellness by the World Parkinson Coalition

World Drum Circle and panel discussion on drumming for wellness on World Drumming Day. No drum required - just find something that can be a drum (a bowl, a box, a table, a bucket). Info here

Thursday, November 16 at 9am

A Year Like No Other in Parkinson’s Research: 2023 in Review by the Michael J Fox Foundation

From the new biomarker for PD discovered last spring, to discussions of biological staging for disease and new therapeutics accelerating through the clinical pipeline, it’s a year like no other for Parkinson’s research. MJFF scientists and staff will discuss why this year is transformative — and why we’re entering a new era. Info here

Thursday, November 16 at 11am

Characterizing Adult Neurocognitive Diseases and Adapting Care to Enhance Quality of Life by the National Council of Dementia Minds

Seven retired physicians living with various types of dementia will draw from their own experiences and delve into the underlying biological basis of major adult neurocognitive diseases. By sharing their personal stories and strategies, they aim to inspire support professionals, individuals with dementia, and care partners to optimize independence, happiness, and overall well-being. Not specific to PD. Info here

Wednesday, November 29 at Noon

The YOPD Care Partner Mindset by PMD Alliance

Being a care partner to someone with young onset Parkinson disease (YOPD) can be a different experience for those who are young, at the height of career, raising children, or even caring for aging parents. You may not relate to the label of "care partner" yet, but having a loved one with PD can impact you in many ways. The speaker is Rebecca Gifford, a writer and co-host of the podcast "When Life Gives You Parkinson’s" with her husband Larry Gifford who has YOPD. Info here

Thursday, November 30 at noon

Boxing for PD by PMD Alliance

Boxing works by moving your body in all planes of motion, while continuously changing the routine as you progress through the workout. Benefits include increased range of motion, reduced stiffness, increased balance, improved gait, posture, and core strength, connected left and right brain, and strengthened connections or camaraderie. Info here

Thank you for this information collected and distributed by the Stanford Parkinson's Community Outreach team.

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