I have idiopathic peripheral neuropathy. I probably inherited it from my mother. She suffered from this disease the latter part of her life. She died at the age of ninety-eight this year. She had a rich and full life, and is an inspiration to me of someone who did not let this disease slow her down. She traveled extensively to over one hundred countries. Even when she was on a walker in her early nineties, she made a trip to Colorado to visit us. We did a car trip through western Colorado, visiting the towns of Telluride and Ouray, and riding the historic steam locomotive from Durango to Silverton.
I have seen the progression of this disease first-hand in my mother over the years, and am now seeing its slow progression in my own life. It started in my mid-forties with a slight numbness in the bottom of my feet. I could only notice it if I walked bare foot on a hard surface, like tile or a hardwood floor. The sensation was like walking barefoot on a sandy beach. The disease had no impact on my life at this time. I can remember mentioning this slight numbness to my primary care physician during an annual wellness exam. He had me take off my shoes and socks, and he struck a tuning fork and applied the base of it to the side of my big toe. He asked me if I could feel the vibration of the tuning fork. To my surprise, I answered, “No.” He said, “You have peripheral neuropathy. If you start to have pain, we have medications that we can give you.” A nerve conduction test by a neurologist also confirmed the diagnosis.
When I turned fifty-four, I started to have some pain from the neuropathy. It felt like I had a rock in my shoe. I started taking amitriptyline to relieve the pain, and later switched to gabapentin. These drugs took the edge off the pain, but did not eliminate it. Later, I switched to pregabalin, as I found it more effective in reducing the pain.
I have been very active over the years in spite of the numbness and pain. I am an avid hiker. I have climbed forty-seven peaks over 14,000 feet (called “fourteeners” by Coloradans), many of them multiple times. I have climbed Half Dome in Yosemite National Park, Angel’s Landing in Zion National Park, and the Grand Canyon twice, once with my older son and once with my younger son. The last fourteener that I climbed again was Pikes Peak on my sixty-eighth birthday. Since then my hiking has slowed down to easier hikes under five miles in length due to increased weakness in my legs and balance problems. At the age of seventy-three, balance has become a significant issue, and I now hike with a trekking pole to reduce the risk of falling.
Since 2016, I have been working part time as a self-employed consultant to my former employer. This has allowed me to have time for some international travel with my wife. We have visited Mexico, Belgium, Holland, Switzerland, France, Germany, Greece, Israel, and Ireland. I look forward to more trips, but I will never catch up with my mother in the number of countries visited!
As the neuropathy has progressed, I have learned to adapt to the disease. The neuropathy has gone into my hands, and I have trouble with buttons. Sometimes I have to ask my wife to button those small collar buttons. Some things I have had to give up entirely, like skiing because of balance issues. Also, I was an amateur string bass player. The highlight was playing in our church orchestra for performances of Handel’s Messiah. Due to the neuropathy in my hands, I have had to give up the bass. Rather than look at these things as a loss, I just rejoice that I was able to have those experiences.
As I slow down with age and the progression of the disease, I have turned to some more sedentary activities, like writing. I have written a long essay on the Big Bang. This last year I published my first book, The Road to Emmaus, about a spiritual journey down an ancient road. Through my own journey with peripheral neuropathy, I am learning to be content with what I can still do.