Winter, Spring, Summer or Fall
All you have to do is call
And I’ll be there
You’ve got a friendCarole King – You’ve Got a Friend (Tapestry 1971)
For those of us who went away to school in the early 70’s, Carole King’s Tapestry album from 1971 was the soundtrack of our lives. “You’ve Got a Friend” became our anthem. Her friend, James Taylor also released the song the same year. According to Taylor, King told him that the song was a response to a line in Taylor’s earlier song “Fire and Rain” that “I’ve seen lonely times when I could not find a friend.” The two friends often performed the song together over the next 50 years. You can watch them singing together here.
I get by with a little help from my friends
Many of us were off to college, leaving our homes for the first time. At the time, way before cell phones, our only contact with our families was our weekly Sunday morning phone call. Our new friends at school helped us learn how to live on our own. They helped us get through the lonely times, when we needed help on a project, when we just needed to have a good time. We got through it together and some of those friends are still an essential part of our lives.
We all need a friend, especially now when so many of us are isolated at home, much more than usual. For people with Parkinson’s, it is essential. When I went to the WPC in Kyoto, there was a lot of talk among the PwP’s who were there, about the value of Peer to Peer Mentoring. This was something that many of us were doing already, informally. As far as I could tell, there were no organized Peer to Peer programs.
You’ve got a friend in me
Randy Newman, “Toy Story“
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.
I have met for coffee with a number of newly diagnosed people with Parkinson’s over the years, who had been referred to me by a friend, co-worker, family member. Somehow they found me, even before I went public with my diagnosis. These meetings were the reason I started blogging about Parkinson’s. So many people had similar experiences after their first visit with a neurologist. They were given a prescription and a return appointment, but relatively little information about PD. They were hungry for information about local resources, exercise, sleep and everything Parkinson’s. I often met with them just the one time for about an hour. Some of them have become very dear friends. Yet there are others who I never heard from again.
That’s what Friends are For
Last fall, a team of women who were regular attendees to my Sunday Mornings with Twitchy Woman webinars, got together, via Zoom of course, to design a Peer to Peer Mentoring program. We were all hearing from newly diagnosed people with Parkinson’s, that they are still not getting the information they need from their neurologist at the first meeting. They are devastated by the diagnosis and do not know where to turn for information and support. With the Pandemic stay at home orders in force, these women (and a lot of newly diagnosed men, too) don’t have many options to find support from others with PD. In fact, several people have contacted me within hours of being diagnosed, having found my blog on the internet, asking for help. Our Sunday Morning group asked “what can we as a community do to help newly diagnosed women?”
Within a few months time, we put together the Twitchy Woman Peer Support Program which was rolled out in November 2020. To date, we have matched 30 women with Peer Mentors. Most are from the US and Canada, but we have also had requests from the UK and Sweden. Because there are women who join us from Europe for our Sunday Mornings programs, we were able to find matches for those women, too. This is becoming a global project, which is very exciting! 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. If you are interested in participating, go to Twitchy Woman Peer Support Program for more information.
Pay it Forward
Not a song, but you know how it works. If you have been fortunate enough to have someone with Parkinson’s help you adjust to your new life with Parkinson’s, consider paying it forward and becoming a mentor. That is exactly what one of our newly diagnosed women has done. After one conversation with a Peer Mentor, she is more confident about her life with PD, has found the resources that she needs and is now ready to help someone else!
You can learn more about our Peer Support program on Friday, February 19 at 1:00 pm, Pacific time at the PMD Alliance webinar “Women Helping Women: PD Mentorship & Support.” hosted by Indu Subramanian, MD, as part of her wHolistic! series. Naomi Estolas, Susan Lehman, Sharon Burniston and I will be talking about how we are combating isolation and loneliness on Sunday mornings and with our mentoring program. You can register for this free program here. We hope to see you there.
Lean on me, when you’re not strong
And I’ll be your friend
I’ll help you carry on
For it won’t be long
‘Til I’m gonna need
Somebody to lean on