Someone to talk to

I was diagnosed with Parkinsons in September of 2020. It was a Thursday, and I was completely shocked and devastated. On the three hour drive home, I found Twitchy Woman on the internet. I read Sharon’s blog and immediately messaged her. We talked on Sunday, and it was after that phone call, that I decided Parkinsons wasn’t the end of the world. Sharon gave me such great encouragement.  I decided that very day that if I had Parkinsons, I wasn’t going to feel sorry for myself, but use it to help others!

Lisa R

Are you newly diagnosed and don’t know where to go for information and support?  Have your symptoms gotten worse since the Pandemic began and you just need someone to talk to?

If you have been following Twitchy Woman for a while, you may be familiar with our  Peer Support Program for Women. This program was developed by wonderful team of about 10 women with PD who worked together to put together a Peer support program that is helping women who are newly diagnosed, or in crisis as their Parkinson’s disease progresses.Since we began this process, other organizations have come out with their own versions of peer support programs for people with Parkinson’s. 

The Michael J Fox Foundation has a “Buddy Program.” Davis Phinney Foundation’s Ambassadors are trained to provide peer to peer counseling.  Many local organizations are also offering mentor or buddy programs.

What makes our program different from the others?  We have a team of women who evaluate every application that comes in from potential Mentors and Mentees.  Each applicant is interviewed before the team makes the match.  We have had very few women ask for a different mentor and very few who dropped out.  The results have been overwhelmingly positive.

Here are some excerpts from a past blog post You’ve Got a Friend, about the Twitchy Woman Peer Support Program.

Graphic from AEHIS

What is Peer to Peer Mentoring?

This is a concept that has swept through the chronic illness communities, many now offering formal programs, with training sessions for the patient volunteer mentors. Someone who is newly diagnosed (up to about 2 years) is paired with someone who is living well with Parkinson’s. A Patient Mentor who can help them navigate the maze of PD treatments, meds, support, exercise and more. The Mentor is someone who can speak from experience and be a sounding board for the Mentee. 

Last fall, a group of women who were regular attendees to my Sunday Mornings with Twitchy Woman webinars, asked “what can we as a community do to help newly diagnosed women?”. So we got together, via Zoom of course, to design a Peer to Peer Mentoring program.

Within a few months time, we put together the Twitchy Woman Peer Support Program which was rolled out in November 2020. We are currently reviewing evaluations from the women and their mentors. So far, everyone seems to be very happy with the program. We hope to be able to expand the program, recruiting more mentors to talk to the constantly growing group of newly diagnosed women with PD.

What have we accomplished?

In the last year, we have matched over 80 women with Peer Mentors.  We have found mentors for women in the US, Canada, the UK, Europe and beyond.  We have helped others put together similar programs.  Several of our women have participated in panel discussions on Zoom about these types of programs. The best news is that several of our mentees have gone on to mentor other newly diagnosed women. Having a mentor literally changed their lives for the better and they want to help others do the same.

If you are newly diagnosed and looking for a mentor, please fill out an application.  We are also looking for women who are willing to share their knowledge and expertise as mentors.  Both applications are available on the website.

At this time, our program is available only for women with PD. If anyone is interested in starting a similar program for Men or for Care Partners, please contact me directly.

It’s T’shirt Time Again!

Check out our fundraiser at Custom Ink

We have t-shirts, tank tops and fabulous fleece hoodies just in time for the holidays. Orders must be placed by November 15, to be shipped by the first week of December. All proceeds will be used to keep all Twitchy Woman programs available at no cost to you.

Please note that we have partnered with The Meyrow Foundation/ Parkinson’s Wellness Fund, a CA non-profit organization. EIN #27-1196792

All proceeds will benefit Twitchy Woman.


Leave a Reply

Please log in using one of these methods to post your comment: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

A Note To My Readers

I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.