Patient Stories

Faces of PN: Peripheral Neuropathy Success Stories! FB Group Founder

Michael Wright, founder of the Facebook group, Peripheral Neuropathy Success Stories! shares his PN journey with us:

PERIPHERAL NEUROPATHY SUCCESS STORIES! is the Facebook support group that I started on a whim. See, I had been in several other support groups for PN, and they all made me feel worse. I would read about what people couldn’t do and how desperate they were for answers. I became more anxious. When I told my neurologist that I was looking at support groups, she suggested that I didn’t’! So, that’s when I started one that is based on positivity and hope. Our focus is on what people CAN DO; not what people CANNOT DO!

Managing a support group didn’t come with a rule book, and I have had to learn lessons as I go. When I saw that our little group was going to blossom (now racing toward 4,000 members in 83 countries!), I became even more resolved that we would be the best support group out there for people with PN. Finding the right moderators for our group has been the single best thing that I have done to ensure that we stay on track. We insist on approving members who promise to be positive and adhere to group rules. This keeps us differentiated from other groups. And, we approve every single post before it gets published on our group site. This means that when our members log into our group, they should absolutely feel uplifted and inspired!

My journey with peripheral neuropathy has taught me that distractions help keep pain in check. Connecting to our members has kept me distracted and feeling better! Having hobbies that distract me also help. I find that when I meet friends for lunch, I don’t think about my pain. Distractions are therapeutic, and we have built our support group around this very concept. Check out the things that we offer within our group that help our members find good distractions.

BUDDY UP: this initiative offers members a chance to be paired up with “buddies” in our group. Buddies are people who have been identified as having great listening skills, empathy, and compassion. Members who want to participate simply notify me, and I do the pairing. It has worked splendidly, and the feedback from both the buddies and the people who are getting “buddied up” has been impressive. The buddy relationships can last as long as deemed appropriate by both parties. All of the communication is done through Facebook Messenger.

STEP STEP STEP: is an offshoot group for our members who are into walking and fitness. When they join this group, they can post screen shots of their daily steps or other fitness activities. In fact, members of STEP STEP STEP can earn medal designations based on their stepping achievements! We offer Bronze, Silver, Gold, and Platinum levels, and we post members’ names under each designation.

SNAP: a lot of our members enjoy snapping photos and sharing them. We created the SNAP group in order to give people a chance to post as many photos as they want. This group is open to anyone, not just our group members. There have been some magnificent photos posted so far and our membership is increasing day by day. Taking photos and posting them is a great distraction and a happy hobby for so many people. Looking at photos is also a great distraction!

INSTAGRAM: we have our own Instagram page. Anyone can find it by searching on “peripheralneuropathysuccesses.” There is at least one motivational post every day, and we encourage everyone on Instagram to log onto our page. The goal with this is the same: distraction and inspiration.

BOOK CLUB: we have our very own book club! This is coordinated by one of our moderators, Mandy Beth. Once every few months, a new book is chosen. There are reading deadlines for each section of the chosen books. And at the end of each section, we have an on-line discussion of the material. It is FUN and reading is yet another great distraction!

Our group is dynamic and positive. If you are not a member, please join us. Just log onto Facebook and search for PERIPHERAL NEUROPATHY SUCCESS STORIES! (or follow the embedded link). We promise to give you a good dose of positivity, inspiration, and distraction!

Michael Wright has had peripheral neuropathy for five years. In addition to distractions, he has found that a spinal cord stimulator and the right combination of medications have significantly reduced his pain. He is always happy to share his experiences. He lives in Charlotte, NC.

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