two people sitting talking on an oversized phone giving peer support for parkinson's disease

Do You Need Someone to Talk To?

Were you recently diagnosed with Parkinson’s disease (PD)? Are you feeling alone and confused? Do you just need someone to talk to who understands how you are feeling with Parkinson’s?

One of the biggest problems for people with Parkinson’s is the feeling of isolation after getting diagnosed with the disease.

Their doctor may give them a prescription and instructions to come back in 3-6 months. They may have numerous questions that won’t get answered until the return visit to the neurologist. Often, they don’t know anyone else with PD to talk to. They may be afraid to "come out" with their diagnosis and have no one to turn to. This often leads to depression, self-imposed isolation, and loneliness.

What can we do?

Is there anything you can do about this if it happens to you? Absolutely. Those of us who have been living with Parkinson’s for a while often receive phone calls from someone whose friend or family member was recently diagnosed. Would we mind talking to them?

Over the years, I have spent many hours meeting people for coffee or just talking on the phone with them. Answering questions and assuring them that, yes, there is life after a Parkinson’s diagnosis, and by the way, that life can be pretty good for a long time.

The value of peer to peer mentoring

The big buzz among bloggers at the World Parkinson’s Congress in Kyoto in 2019, was about the value of peer to peer mentoring. We were all having these informal meetings to bridge the gap between diagnosis and the next doctor’s visit, but there was no formal program offered anywhere that we were aware of.

Fast forward 7 months. The Pandemic arrived in March, 2020 and life changed for everyone. All of the PD exercise classes, which really functioned as support groups, shut down. The formal support groups shut down. We didn’t know what hit us or what to do. The phone calls from the newly diagnosed increased because there really was no place for them to go.

Some of the organizations started to respond with mentoring type programs such as the Fox Foundation Buddy Program. Others began to devise their own. My own group, Twitchy Women, which began meeting on Zoom at the beginning of the pandemic, also saw a need to start a peer mentoring program for women. A team of about 10 women worked together to create a more formal mentoring program. Within a few months we were ready to launch.

In the past 2 years, our team, which is all volunteers, has matched closed to 200 women with peer mentors. The mentors are trained and given a handbook with guidelines for mentoring.

Avoiding isolation and loneliness

Does peer to peer mentoring really work to help avoid isolation and loneliness? Giving someone newly diagnosed someone to talk to about PD can be a lifeline. Having a mentor means having a friend who has gone through this before, who can answer your questions and just be there for you. Sometimes the relationships are short term. Others become deep friendships. Either way, the success we have found with this program has been amazing for both the mentee and the mentor.

If there is no mentoring program available in your community, we invite you to check out our peer support program. Please note that our program is for women only at this point.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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