Returning to AFO Life as an Adult Prompts New Observations

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by Young Lee |

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When it comes to doing cardio at the gym, I’ve always preferred the stationary bike to the treadmill. I have yet to fall off a stationary bike, but I’ve fallen off a treadmill several times in my life.

Heel-toe, heel-toe, heel-toe-toe. Wait, that’s not right!”

“Heel-toe, heel-ankle. Ouch!”

Many of us in the Charcot-Marie-Tooth (CMT) community struggle with our gait, walking, and general clumsiness. Some days I feel like I have to concentrate on the simple mechanics of walking just to keep my face a comfortable distance from the floor.

But if I add a treadmill to the equation? At times, the treadmill can feel a bit too precarious, and therefore, an exercise in futility.

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Through Exercise, I’m Confronting My Specific CMT Weaknesses

A fresh perspective

Last week, I stepped on a treadmill with a level of confidence I hadn’t felt in a while. I had obtained a bit more stability in my life by equipping myself with something I haven’t had since I was a child: ankle-foot orthoses (AFOs).

Walking on a treadmill doesn’t seem as scary with AFOs.

Returning to orthoses as an adult is an interesting experience. It’s not unlike getting back on a bicycle after years of not cycling. I feel taller and able to propel myself faster. It’s fun to experience that while doing something as simple as walking.

I had missed that feeling, and experiencing it again was welcome. However, what fascinated me were the new observations and challenges I hadn’t experienced as a child.

For example, I’m realizing that AFOs take some getting used to, regardless of whether you’ve used them before. There’s still a learning curve. Although I feel stronger, more stable, and can walk longer, for now, I also feel less agile.

I still think the trade-off is worth it. I can always take off the AFOs when I need more agility. And I’m sure that some of my agility will return once I become accustomed to navigating the world in them.

Another thing I’m encountering as an adult is considering how to best manage my new AFOs while traveling. For example, I will have to strategize more when going through airport security.

Also, although I know some AFO users regularly use them while driving, I’ve never heard an orthotist actively recommend this. I need to decide how I will manage that aspect of my life as well.

Friendly conversations are a bonus

On a more encouraging and less stressful note, I’ve been pleasantly surprised by how often my new AFOs serve as a positive conversation starter. I’m generally not seeking out others with orthotics, but because I often wear my AFOs with short pants, many people approach me to chat about them.

Over the past two weeks, I’ve been stopped by fellow orthotics users at least three times. They seem eager to chat and trade tips and suggestions about how to best manage life with AFOs.

I had no idea orthotics are as common as they are in my area. These interactions have been a nice reminder that people can be awfully kind and supportive, even to strangers.

AFOs are very personal, and how to best navigate life with them can vary tremendously. What works for others may not work for me, and vice versa.

However, I think a commonality for many of us CMTers is the need to constantly recalibrate our lifestyle and habits to accommodate our constantly changing abilities and adjust to treatments.

Managing CMT can sometimes feel like an endless series of changes. It’s important to remember to reflect on all we’ve accomplished and take time to thank and appreciate our bodies for helping us get as far as we have.

I will continue to take CMT and my AFOs day by day. I’m eager to see what new things I’ll be able to explore and experience because of them.


Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.


Robert Thomas avatar

Robert Thomas

I am currently a participant Pharnext's CMT1A medicine clinical trial at Cedar's Sinai in Los Angeles. I've been involved with the trial for years now and it's currently going through the last phase for FDA approval. I have noticed a greater sense of control with the medication but still wear AFOs on both feet. Last year I noticed a new brand of soft braces from a doctor located in upper midwest and I bought them, $90 a piece. I later noticed the doctor's braces were just slightly-modified braces available from Thermoskin through Amazon. I compared them and saw they are essentially the same, except cheaper, less than $40 a side. I prefer the soft braces because they fit in all my shoes and you really don't notice them if you wear long pants. You actually could wear shorts and hide the braces inside a high workboot, I may try that. The soft braces are comfortable enough that I have slept in them all night without realizing it. They only come in black but they have eliminated my concerns of tripping with dropfoot.

Lynn Wolff avatar

Lynn Wolff

Robert Thomas Thank you for your comment and your experience with the soft brace. Currently I have one pair of old soft braces and two other pair of braces fitted by a physician in Kansas. Then I found a GP that insisted on using only one brace that works for me; however, I am limited driving walking on some surfaces etc. I would really like to know more about the soft braces that you use by Thermoskin. I have checked Amazon also, but not sure which one you are using. Any help would be very much appreciated.

Robert G Thomas avatar

Robert G Thomas

Hi, Lynn. The brace I buy from Amazon is this:
I buy a medium which is a little tight at first but it stretches and it's barely noticeable when wearing long pants. It's not intended for CMT patients but it can be used as such. Prices have come down to less than US$40 a side which is very manageable. I don't like AFOs where there is a plate under my foot, it feels too unnatural to me. These really help and I walk and drive in them. Some nights I have even forgotten to remove them and slept in them, which should indicate they are pretty comfortable.


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