The Accidental Advocate

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 giving them some resources and tricks I had learned living with the disease for 5 years. 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.

Paying it forward

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 allowed. We wanted to have fun and learn things.

The group quickly grew from 15 to more than 50, with 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 and then the COVID pandemic hit.

The Pandemic changed everything

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

During this awful time when we were literally stuck at home with little contact with the outside world, Sunday Mornings with Twitchy Woman became their safe haven. They could reach out and talk to other women with PD, no matter where they lived. They did not have to be isolated and lonely. As we got deeper into the pandemic, the numbers joining us soared. Close to 1,000 women have participated since we began.

Speaking out for women with PD

All of this activity really created the accidental advocate. When there was a need, we found ways to fill the need. Because of the pandemic and the absence of in-person support groups and exercise classes, newly diagnosed people with PD were desperate to find someone to talk to, someone who could help them through those first months. A small group of women who also happen to be accidental advocates, volunteered to create our amazing Peer to Peer Mentoring Program. To date, we have matched over 150 women with Peer Mentors.

We have continued to speak out for women with Parkinson’s, encouraging more women to become advocates in our community. We are now offering scholarships for registration for the World Parkinson Congress (WPC), thanks to a very generous lead gift from one our women. The scholarship recipients will be asked to pay it forward, like I was at the Women and PD Initiative, with the hope that they, too, will become accidental advocates for Women 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 to do was combat the loneliness created by the Pandemic. In fact, many of the women refer to us as a tribe. I love it!

Looking ahead

Ultimately, Twitchy Woman took on a life of its own, becoming known worldwide for 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 have been asked to be part of a panel discussion at the WPC in Barcelona next July. And what is the topic? Advocacy for People with Parkinson’s. We also hope to have 2 posters on display at the WPC about Women and PD.

It has been an amazing journey and I hope to be able to keep on advocating for our women for a lot longer!