Gil’s Story – Learning to Live a Full Life with Peripheral Neuropathy

by J. Gilbert Miller, Ph.D.

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I have idiopathic peripheral neuropathy, believed to be inherited from my mother. She also suffered from this disease in the latter part of her life and passed away at the age of 98. She had a rich and full life, and is an inspiration to me of someone who did not let this disease steal her joy.

I have seen the progression of this disease first-hand in my mother, and am now I am 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 barefoot 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 remember mentioning the slight numbness to my primary care physician during an annual wellness exam. He had me take off my shoes and socks, 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 we can give you.” A nerve conduction test by a neurologist also confirmed the diagnosis.

When I turned 54, I started to have some pain. It felt like I had a rock in my shoe. I took amitriptyline to relieve the pain, and then 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. (Note that everyone’s body reacts differently).

As the neuropathy has progressed, I have learned to adapt to the disease. In this article I’m sharing 5 things I’ve learned that helped me (and my mother) live a full life with a chronic illness:

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1. Pursue Your Passions

My mother was passionate about traveling and teaching the Bible. These passions helped keep her active as long as possible, in spite of the peripheral neuropathy.  She traveled extensively to over a 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. My mother was able to continue teaching Bible classes long after she could not travel anymore. 

My passion has been hiking and my work as a scientist and aerospace engineer.  I did not retire until last year at age 75, and I have continued to be active 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 I climbed again was Pikes Peak on my 68th birthday.  Since then my hiking has slowed down to easier hikes fewer than 5 miles in length due to increased weakness in my legs and balance problems. At the age of 73, balance became a significant issue. I now hike with a trekking pole to reduce the risk of falling.

Since 2016, I’ve been working part time as a self-employed consultant to my former employer. Staying active and busy helps keep my mind off the pain. A part-time schedule has also allowed me to pursue my passion while having time to 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!

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2. Make Modifications as Needed

My mother was good at making adjustments to accommodate her declining physical capabilities so she could continue to do what she loved to do, even though it looked different than before. When it became too hard for her to fix her meals due to balance, she moved from her own home to a senior independent living facility that provided meals. She used a cane with a fold-down seat to travel when balance became an issue. She voluntarily gave up driving (without me having to take away the keys) when numbness in the feet made it unsafe for her to drive. She also made the decision to move from independent living to assisted living when she needed more care. 

Balance is my biggest issue these days, and I have to hike with trekking poles.  I take easier hikes and go slower. A couple of years ago I got hand controls on my car because the numbness in my feet made it unsafe to drive. We are now looking at downsizing from our large home to a patio home because the outside maintenance is becoming more difficult. For my mother and me, our strong desire to keep doing things we enjoy has helped us cope with neuropathy. We made adjustments to accommodate declining physical capabilities in order to continue doing the things we loved for as long as possible.

You too can make adjustments so you can continue to do what you love to do! For example, get an e-bike if you don’t have the strength for a regular bike. Swim if running and other high-impact activities increase your pain. I just got back from a trip to Germany, Austria, Hungary, and Czech Republic. I have a harder time keeping up with group tours because I have to walk with a cane or trekking poles, so I hired private tour guides in Munich, Budapest, and Prague who walked at my pace.

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3. Find Pain Management that Works for You

My mother had very little pain with her peripheral neuropathy because she took Desipramine for the pain. She could not tolerate gabapentin or pregabalin. Due to everyone’s unique biochemistry, different medications, dosages, and combinations of treatments work best for different people.

Initially, my mother had intense burning in the feet, but for some unknown reason, that went away after several years. The lack of balance due to numbness was her biggest issue. 

My symptoms were a little different from my mothers. I never had any burning, but had more intense pain. Compression socks, topical ointments, and exercise did not seem to help me. I started taking amitriptyline, switched to gabapentin, and finally to pregabalin. I find the medication reduces the pain to a tolerable level so that I can still hike.

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4. Don’t Shy Away from Asking for Help

The neuropathy has gone into my hands, and I now have trouble with buttons. Sometimes I have to ask my wife to button those small collar buttons. Asking loved ones for help is not being a burden—it gives them the opportunity to minister to you and gives us an opportunity to express our appreciation.

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5. Shift Your Perspective

There are 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 more sedentary activities, like writing. I have written a long essay on the Big Bang. Last year I published my first book, The Road to Emmaus, about a spiritual journey down an ancient road, and I built my own website. Through my own journey with peripheral neuropathy, I am learning to be content with what I can still do rather than obsess over what I’ve had to let go.

None of us can escape from the death and decay due to the Fall, but we can look forward to a resurrected immortal body that will suffer no pain. As I observe many friends with diseases far worse than mine, I am grateful that I can still cope with my peripheral neuropathy.

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Final Words from Gil

I believe it is possible for anyone with peripheral neuropathy to live a rich, fulfilling life. We need to make adjustments, lower expectations, and extend grace to ourselves. As we continue to pursue our passions and focus our mind on positive things, we will be able to rejoice, be content in the present, and look forward to a future where pain no longer exists.

“And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.” (Revelation 21:4 NKJV)

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Gil Miller received his Ph.D. in astrophysics from Princeton University and spent a decade in academia, followed by a thirty-year career as an aerospace engineer. He is an amateur string bass player and has been a lay Bible teacher for over forty years. He is author of the book, The Road to Emmaus: Christ in the Old Testament, and the essay, What is the Big Bang? Should a Christian Believe It?  He has an interest in the relationship between faith and science.  He is married to his wife, Mary, and resides in Colorado Springs, where he has been an avid hiker of the Colorado fourteeners.  They have two grown sons.