Charcot-Marie-Tooth: My Journey to Using Arizona Braces, Part Two

“Braces Being Constructed”
Photo by” ThisIsEngineering

Disclaimer: I have no affiliation with brands mentioned in the post. Nor, have I been paid,  received compensation, or any free products. I am sharing for educational purposes only. Nor is this an endorsement of stated products.

About two years ago now, I started to write a series of blog posts about my journey to wearing Arizona Braces, my current pair. My apologies, however, life circumstances got in the way of continuing the posts, causing me to forget to continue the series. The circumstances were all good, just was busier than I’d planned. In case you missed it, here is a link to the previous post, My Journey to Using Arizona Braces.

My first pair of braces, made back in 2000, were made of heavy plastic with a hinge at the ankles to allow some movement and velcro straps to keep them tight on my legs. The braces fit into a good brand of walking shoes, such as Rockport, but a size to size and a half larger than I would normally wear.  I wore the typical tube or athletic socks that went to my knees. Yup, oh my word, I looked like a geek… more than I ever wanted! 

I wore these style braces for several years. I learned that pulling leg warmers over them in the winter helped warm my feet and legs. Yes, my word, another period of geekiness that I’d never share unless it was to benefit someone. Also, I had to have them rebuilt more than a few times because my Deep Water Aerobic classes caused the leg muscles to get bigger. The doctor who created my braces didn’t seem to be on board with the fact that my legs were getting stronger with muscles growing, too. Though the concept and purpose of these braces work for a time. 

However, I got to a point when I was tired of the plastic braces bracing my legs so annoyingly every day. To remedy or relieve this, I wouldn’t wear them in the evenings, some Saturdays- depending on activity level, and all day on Sundays. This provided relief from the discomfort of the braces. The discomfort is something that some might call a “necessary evil.” I needed the braces to walk throughout my day, but the evil is when the discomfort sets in. If you think about it, you can work around the discomfort.

To my surprise, the muscles in my legs continued to get bigger as I continued to do my Deep Water Aerobics. Eventually, this led to a third new pair of braces. However, this would be the last, as the doctor wasn’t on board with the replacement of the braces. 

After a while, the braces weren’t fitting again, but I had become unhappy with wearing them. After all, they were a pain to put on and, after several hours, a discomfort to wear. It was time for a break. So I did.

What can help a Charcot-Marie-Tooth guy who doesn’t want to stop enjoying life, but definitely needs some assistance? A good, but a bit expensive, pair of sturdy hiking boots. After doing some research and chatting with a few people, like my chiropractor, I found hiking boots offer quite a bit of stability. This became a dream come true! No braces! 

My first pair of hiking boots were made by Asolo. Since they did not have the men’s size I needed, I bought the equivalent size of a woman’s. Since you couldn’t really tell the difference in styles between a man’s pair and a woman’s pair, it made no difference. The stability of this brand kept me going for several years, replacing them as they wore out.

Stay tuned for Part 3: Journey to Wearing Arizona Braces: My Current Pair.

Charcot-Marie-Tooth: My Journey to using Arizona Braces

“Working With the Doctor”
Photo by Ryan Snaadt on Unsplash

This post is intended to be the first of many about my use of braces and hiking boots to enable me to continue walking. It’s been a great journey, but, with some challenges. I hope that you will learn something helpful by my sharing these experiences. As always, speak with your doctor for specific medical advice.

The year was late 1999. The pain and issues with Charcot-Marie-Tooth (CMT) were really starting to be, well, very painful and challenging. Thankfully, I have a fairly positive attitude which was really helping me at this point. However, with the new challenges to walking, I needed some kind of assistance.

My wife and I had decided on a family doctor which I later learned was good about thinking “outside the box” for my care. She knew a doctor who made braces for people in many situations so I was referred to see her.

My appointment went well. It was the usual battery of tests to see how I walk, what seems to be wrong with my feet, and how she can help. Obviously, it’s CMT. However, as you may know, it affects everyone differently, even within the same family. For me, I had the blessing of having the most severe case. So, I didn’t have any family members to ask questions and went on my own way to learn how to help myself.

The Orthopedic doctor took a cast of my feet and calves from just below the knees down. I sat a few minutes, or less, while the casting material set. Once dry, she marked out the pressure points of my feet onto the cast. WOW! Well, with deformed feet, there are plenty of places to mark. Once she finished, a small saw machine was used to cut the mold. That was a weird experience as it grabbed more than a few leg hairs, that I have just spent all of my life growing, as it went up and down my leg. It wasn’t painful, just tingly weird. It did set my nerves off because of the constant vibration but once it settled, I was good.

I waited about two weeks for the braces to arrive and they finally did. I went to the orthopedics office to get them and I’ll admit that I was a bit discouraged about having to get these braces. Yes, I knew they would help me to walk and hopefully reduce the energy it takes for me to do it. However, it’s not how anyone would want to spend life.

The braces fit great. All I had to do was put them on and put the leather straps across my leg through a metal loop on the other side and tighten. Easy enough, yes. But, hardly the last step in this journey. Learning to walk again. Learning to drive again. Learning to just plain ol’ live again would be the new life for me… after I bought more than a few walking shoes a size larger than I normally would wear.