Making it Personal: How we can help each other

Clinicians and therapists have depths of expertise, but what about the million-and-one little questions that come up after a Parkinson’s diagnosis? Friends and family make the world go round, but they don’t know what Parkinson’s feels like from the inside out.

PMD ALLIANCE

11 months ago, when it looked like we were going to be quarantined for just a few weeks, maybe a month, it was clear that many of the programs that are lifelines for People with Parkinson’s were going to be shut down temporarily. The devastating effects of isolation in our community, as well as for other illness communities, could be catastrophic if this went on for more than a few weeks. The fact that we could not go to our gym classes, support groups and other activities meant that we had little or no access to others with PD, the very people who we could talk to about how we felt, our symptoms, and more.

Zoom and other online platforms immediately became essential to our lives to reach out to family, friends and yes, others in the Parkinson’s world. Seeing an opportunity to bring together my Los Angeles Parkinson’s women’s group together, Sunday Mornings with Twitchy Women began, meeting every other week. We could see our PD friends and maybe learn something, have fun and at least for 1 hour feel less lonely. This was supposed to last just a couple of months. But of course, that didn’t happen, and in a few weeks we will celebrate one year of meeting every two weeks with great speakers and programs.

Who can you turn to?

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What did happen was that newly diagnosed women found us, desperate to get information about living with Parkinson’s Disease. And they asked for help. It became clear that many of us, as women who have been living with PD for several years, were the right people to provide some type of mentoring program for them. After all, who knows better what it feels like to have Parkinson’s than someone living with it. Last summer, a team of about 10 women put together our Twitchy Woman Peer Support Program. We rolled it out in November and it has been steadily growing as more women find out about it.

Then I got a call from my Movement Disorders Specialist, Indu Subramanian, MD, who has been hosting wHolistic!, a very popular series of webinars for PMD Alliance. Would we be interested in talking about how we are reaching out to other women with PD, including the mentoring program? So last Friday, February 19, four of us had the honor to be part of a panel discussion to talk about it. We have had wonderful feedback from the people who joined us that day. And numerous inquiries from women and men with PD asking to be part of this program. Fortunately, PMD Alliance has sent me the recording of the program which you can watch here.

If you are interested in participating, go to Twitchy Women – Peer Support Program for Women. You will find more information there as well as links to applications for Mentors and Mentees.

Where do we go from here?

While we focus on women only, we recognize that there is a need for men with PD to also find someone to talk to who knows what they are going through. At this time, we cannot initiate another program. However, if anyone is interested in starting a peer to peer program for men, please contact me and I will be happy to share what we have learned. We have also had requests for a similar program for Care Partners. Once again, please contact me for more information.

We know that we cannot go alone on this journey with Parkinson’s. We need others who have experienced it to help us find our way. Our hope is that we can work together with the common goal of making our lives better while living with a chronic disease.

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