Patient Stories

Terry’s Story: Local Support Group Offers Help

On Friday the 13th of March 2020, when the world stopped for COVID-19, I finally got an answer from my neurologist about the burning pain in my feet and, sometimes, hands. I had a “nickel’s worth of neuropathy” he stated. I remember thinking, “Oh my goodness, if this is only a nickel’s worth what might a quarter’s worth be like?” The only advice he had for me was to start walking or running.

Finding a Support Group

At the next visit, after my blood tests came back, he declared my condition to be idiopathic or perhaps genetic. Well, after that visit, the nightly Googling started, I went looking all over the internet for advice or perhaps a cure. Somehow, I stumbled on the Foundation for Peripheral Neuropathy website. There I found a page about local support groups. I carefully scrolled through the list to find a group that was literally in my backyard – perhaps less than a mile away.

This local support group, the Peripheral Neuropathy Support Group of Metro DC, met at the Government Center in Annandale, Virginia. I sent an email to the president, who at that time was Steve Klitzman. Steve followed up with me immediately. I asked him two questions: who was his neurologist and how did the group members manage the burning pain in their feet?  He sent me a list of recommended medications and “work arounds” for my feet and shared the name of his neurologist with me.

Local Groups Give Local Information

Later, I found out that Steve had been leading the local group has been meeting since 1997, and that they met in person at the local government center, prior to COVID, the first Saturday of each month.  Over the years the group had grown to about 348 members. The group focused on information sharing, education, awareness raising and support for both patients and caregivers. They regularly hosted local guest speakers who provided information on how to best live with this condition. Unfortunately, due to COVID, they were shifting to Zoom meetings. I started attending the Zoom meetings and getting to know some of the members of the group. Bruce, Jud, Pat, Rorey, Bill, Brenda, Steve, and Mike were great, offering me advice on how to manage my condition. Everyone encouraged me to keep exercising and walking. I got recommendations about doctors and shoe stores.

Finding Purpose and Friendships

One member really understood my plight, as we both worked for the local school system. She knew how difficult it can be to work as an elementary school teacher with this condition. She helped me decide to teach virtually for this past school year. In addition, the DCPN group hosted local experts about topics such as acupuncture, care- giving, and mindfulness at our monthly Saturday Zooms. These sessions were extremely helpful, and I did go on to try acupuncture which helped to relax me.

Over time, I became a bit more active in our group, helping by monitoring the chat feature during our meetings and volunteering to edit the Resource Directory on our local web page. Eventually, I became an administrator on our local Facebook page “On Your Feet,” and social director for the group. As social director, I began to co-host a monthly Zoom “Happy Hour” or social hour where members talk about everything but our neuropathy. I was laughing again during these meetings. Laughter is the best medicine.

I felt good about myself again, I was contributing, and I was not alone anymore. Every time we meet there are always new faces. There you get a chance to tell about your PN journey and ask and answer questions from the other group members. We are all in this together, and I am truly grateful to have these people in my life.

Where Can YOU Find a Group?

We thank Terry for sharing her story with us. Are you interested in finding or starting a support group? Take a look at our update on support groups here or contact us at [email protected].

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