Parkinson’s Disease is the fastest growing neurological disease in the world. Shocking. Most people’s image of PD is of much older men.  And yet, women make up 40% of PwP (People with Parkinson’s Disease). Another shocking fact the public is most likely unaware of. Though the average age of diagnosis is around 60, many women are diagnosed in their 40’s and 50’s.  As we know all too well, the medical profession is often late in diagnosing the Parkinson’s disease in women excusing symptoms as menopause or emotional stress.  The most common response from a MD when a woman is diagnosed is, “You have Parkinson’s. Here is a prescription. I’ll see you in six months. However, “Twitchy Women”, an incredible organization less than 10 years old, has stepped in to fill that void and to help ease this new transition in a woman’s life. Bravo & Kudos to “Twitchy Woman” and the courageous women behind it. These volunteers, who are coping with their own Parkinson’s diagnoses, selflessly go beyond that to guide and give support to other women at different stages of PD. They are heroes.

In 2015 Sharon Krischer started the award-winning blog Twitchy Women to cope with her own diagnosis six years earlier and since, she became a leading patient advocate in the community.

Very early in the Covid shut down, with all her PD connections, she started twice a month webinars for female PwPs.  She hosted subjects from top researchers from all over the country, new studies, to introducing ping-pong for PD.

A few months later, she recruited Susan Lehman, who had already worked in creating a program at the University of Pennsylvania, to create and head a program for one-on-one peer support with a small team.  By the fall of 2020, the program had researched and produced a handbook and guidelines for mentors, and immediately had many matches.  Mentors are interviewed and instructed.  Mentees’ application information help guide a match.  Periodic checks are made to make sure the matches remain productive.  Experienced peers are always on call for support and information.  The entire program is completely volunteer.

Though the original idea was to reach out only to newly diagnosed women, it quickly expanded to include “not so newly diagnosed” women at different transitions in the disease.  The goal is to help the women build a team of medical and emotional support in their own areas.

The program has generously shared their research, procedures, and materials with medical centers and other volunteer organizations hoping to start their own peer programs.

The summer of 2023 Susan’s proposal of the program was invited to present at the World Parkinson’s Congress in Spain.  By the end of 2023 TW had placed well over 200 women with mentors and is still going strong. Women apply to the program not only from the TW website, but recommendations from many health professional institutions and practitioners including UCLA, the University of Pennsylvania, Mission PD, and others. Though mainly in North America, TW has peer matches in Europe and Australia.

“My peer mentor didn’t replace my family, my friends, or my healthcare team.

 She added another level of support that can come from connecting with someone whose own concerns were my concerns.” …Michelle G.

“You might not know what questions to ask, but your mentor will help break the ice and help guide the conversation.” …Ellen M

“There are a few tears, but also a lot of laughter.” …Liz W

“My mentor helped me communicate with my friends and family and build a local team of support.  I am so grateful!” …Steph in the UK

“We may each have our own individual Parkinson’s,
but we all share one thing in common. Hope.” Michael J. Fox

Learn more about Twitchy Women.