At the Foundation for Peripheral Neuropathy, we like to share with our constituents stories of hope from their peers who are living their best lives, despite the odds being stacked against them. Meet Gil – scientist, writer, avid outdoorsman and FPN supporter -who is another example. This is Gil’s neuropathy journey.
We sat down with Gil to learn about his journey in more detail.
FPN: Tell me a bit about yourself.
Gil: I am a scientist. I taught math and physics for years. Eventually I got into consulting and worked as a defense contractor for the United States Air Force. I just retired last year. I have also always been an avid outdoorsman. I love hiking and camping and still try to stay active. In retirement, I have started writing. I have developed a website for my work and have been blogging, about my travels and my PN story. My wife and I are at the point in our lives where we are ready to downsize, so we are in the midst of cleaning out our house and getting rid of things we can do without.
FPN: How did your peripheral neuropathy diagnosis come about?
Gil: My PN started in my 40s and for years was barely noticeable. It progressed very slowly. Initially, it was just an odd sensation on the bottom of my feet. When I would walk barefoot on hard floors, it felt to me as if I was walking on a cushy rather than hard surface. Luckily, I had no pain until I was in my mid-50s. And even then, it was more of a discomfort, like a pebble in my shoe. When I consulted my doctor at my annual check-up, he gave me pain meds and referred me to a neurologist. The neurologist did x-rays and a nerve conduction test and confirmed the diagnosis of peripheral neuropathy. He changed my pain meds to gabapentin. The quality of my pain changed over time – it was as if my skin felt stretched tight. I started having tingling and cramping in my feet and calves.
FPN: How do you currently manage your condition?
Gil: I am now on Lyrica, which reduces my pain level enough that I am not distracted by it. The numbness has gotten more severe in the last two years, which affects my balance. Standing in one place is hard. I use a cane if I am walking outside of my home to provide a little extra stability and safety. The numbness eventually made driving difficult because I couldn’t feel the pedals. So, I got hand controls for my car three years ago. I had to get certified to drive with these special controls, but now I am not worried about safety while driving; I feel in control of my vehicle.
Mornings are the hardest for me, facing the day, getting out of bed, and getting going. But staying active helps both physically and mentally. I was a serious hiker and outdoorsman. I cannot do difficult, long hikes anymore, but I do still hike with my son. Even though they are not as rigorous or “challenging,” being outdoors and active and finding a way to enjoy some of what I used to love to do is very important.
My mother had neuropathy too, and she remained active and positive, continuing to travel and live her life. Watching how she handled the disease helped my outlook. I aspire to follow her example. I also make sure I am not isolated. I have a solid support network, my wife, my son, good friends. I have a social life. I also joined the Facebook PN support group, so I feel like I am part of a community. All this helps me stay positive.
FPN: What advice would you give other PN patients?
Gil: I would counsel them to stay active, even though it is difficult physically. I had a hard time letting go of things I couldn’t do anymore due to PN, but I replaced them with the same or similar activities with lesser difficulty. You have to keep doing whatever you can and learn to be at peace with things you have to let go. It can be emotional, but it can be done. I used to be a serious amateur musician, I played the string base. I can no longer play because of the numbness in my fingers. But I still enjoy music. I go to bluegrass concerts. I shifted my focus of how I engaged with music so I can still enjoy it. And lastly, I would tell other patients to stay connected. Develop new networks and use the resources offered by the Foundation for Peripheral Neuropathy. And lastly, let people help you
Gil, thank you for taking the time to share your story. We value your participation in our community!