Chuck is a husband, father, grandfather, outdoorsman – and a PN patient who strongly supports the Foundation for Peripheral Neuropathy and advocates for his own health and that of others. We chatted with Chuck about his recent adventures in the US National Parks and his tips for others who want to follow his example.
What is your connection to peripheral neuropathy?
I was always an outdoors guy: fly fishing, hiking, bicycling. About 10 years ago, I found that I started getting numbness and pain in my toes and feet. The pain started shooting up my leg. I went to many doctors who couldn’t find an answer. It was my podiatrist who suggested it might be peripheral neuropathy. I am a patient of Dr. Ahmet Hoke who diagnosed the peripheral neuropathy, but not a known cause. I am one of the many people with idiopathic peripheral neuropathy, although I suspect that my neuropathy might be linked to diet (sugar) and/or insulin resistance, with which a doctor diagnosed me years ago, although I have never had diabetes.
Now, I manage my symptoms with diet, exercise and supplements – and try to enjoy life the best I can.
You have managed to see some amazing parts of the U.S. Can you tell us where you have been?
My wife and I have visited several national parks over the past few years: Yellowstone, Grand Tetons, Trappers Lake, Yosemite, Sequoia National Park, Zion, Bryce Canon, Capital Reef in Southern Utah, Alaska, Badlands National Park and Wind Cave National Park.
We recently returned from a three week trip to Yellowstone and other national parts in the Western US where I was able to hike 2.5 miles in one day. I estimate that we walked 35 miles in total just in the geyser fields in three weeks!
What did you do to prepare for your trip?
My wife did the planning. She found trails that are not too steep or rocky and fairly level trails that would be easier for me to navigate given some of my issues with balance. I kept up my walking and bicycling to prepare for the journey. It is important for me to prepare mentally and physically for these trips.
What were some of the highlights of your trips?
Our most recent trip entailed going to Wind Cave National Park, Badlands National Park, Devils Tower, Yellowstone, Tetons, Teton village, Dinosaur Monument, Colorado Grand Mesa and Colorado National Monument then to Trappers Lake Wilderness Area. We saw much wildlife including bison, bull and cow elk and calves, and two moose on the Teton float trip. We were up at 6 am every morning and at our destination by 8 am or so. The Western US is extremely wide open. Nothing to see for miles except plains and sage brush in Wyoming. You had to make sure you had plenty of gasoline as you might be 100 miles from the nearest station. Towns many miles apart with nothing in between!!
The best part of the Yellowstone trip was the view of one the geysers there. We had hiked 2.5 miles in 45 minutes to see it, but weren’t sure we would. We saw it when it was petering out then it suddenly erupted like this for another 30 minutes! The geyser was off the beaten path, and you either had to know about it or stumble upon it. The geyser was spectacular!
All the credit for the trip goes to my wife who put it together. I was just along for the ride. And a great ride it was!!
What advice would you give to other patients with PN who are interested in hiking or walking vacations?
- Prepare before you go. Pick your paths that are level and not too rocky to make it easier to walk.
- I use hiking boots that are a size and half bigger than my usual shoes so that I have plenty of room for socks and so my feet don’t rub. I will wear my shoe liners from my podiatrist as well.
- Know your limitations. Sometimes, you just have to know when to sit it out for a rest and not go on.
- Make sure you have any medications and supplements with you, and be in touch with your doctors before and if necessary during the trip.
- Sometimes I would just have to tough it out to keep going, but I am lucky that I am able to do this kind of trip!
What do you wish people knew about peripheral neuropathy?
There are more people are affected by peripheral neuropathy than you realize. For people with peripheral neuropathy, find a support group with people who can understand what you are going through. There are online Zoom support groups that are easy to tap into. I am happy to speak to anyone who needs support! And, of course, the Foundation for Peripheral Neuropathy has good information.
Chuck, you are an inspiration. What keeps you going?
My wife who believes in me – and inspires me to “Not Be A Quitter.”