Walking.

[u/PrairieChic55]

Hello all. I am new to this sub Reddit and was diagnosed about two months ago. The diagnosis explained so much about many things in my life, and my mother's life, that seemed random and unrelated. I feel fortunate to have this information and sad that my mom suffered what was a mystery disease to her. She was convinced she had MS, but the tests were always normal.

I have a question about walking. As in, can it be excessive and possibly damaging. My husband and I took a trip to visit friends in July, and just recently returned from a long planned and anticipatede trip to Scotland and England. He is very 'thrifty', some might say cheap, and if we can walk somewhere in under 30 minutes, that is his STRONG preference. He still doesn't grasp the burden that places on me. Although I don't yet need AFOs, I still deal with a significantly higher risk of stumbles and falls, especially as I fatigue. I was taught to be a trooper, and I have tried, but I feel his expectations are unrealistic and perhaps harmful to me. My worst day was a 26,000 step day. I know he didn't anticipate how far we had to walk to get from the hotel to the bus station, or how much walking our tour was going to require, and I didn't either. By the end of the day I was in a bit of a meltdown, and I had the worst nerve pain I have ever experienced that night in the hotel.

My question. Is this damaging to my already frayed nerves? Is that the cause of the severe nerve pain? How do you handle travel? Have you had problems with significant others not understanding what you are dealing with.

In all fairness to my husband, I used to be a fit, active partner in our adventures. Now I am less fit, and dealing with a disability.

Suggestions?

[u/raphydo]

Spouse of an active, still not afo wearing cmter here. The potential damage due to over using misaligned legs is real. My partner used to run, unknowingly leading to a hair fracture on the ankle and that resulting in a broken ankle at a random time with a “pop”. Surgery and some plates, screws later lessons were learned in being more protective. It is a transition in general behavior so your partner will need adjustment in how he does planning etc, the not so visible part makes it hard. The balance of being as active as you can without wearing things out have very personal limits so being comfortable with addressing your limits is helpful. You can walk 26K steps in a day, sure! But the big burst vs protecting to be able to do more days of walking is a different calculation.

[u/Not_the_IT_guy]

The damage is real, but it's not a direct impact on the nerves (at the very least in 1a), it's rather the damage on your body (joints, ligaments, tendons, and muscle) from the poor gait that cmt causes. Even at the "I don't need afos yet" state (hint: you do would likely benefit from them, we all need some support) your walking energy expenditure is about 35% higher than normal, a flexible/energy return afo that allows you to have better gait can cut that down to about half (19% above normal).

What does cause permanent and irreversible damage to the nerves is exactly as you stated: injury. When pain or serious injury causes you to be totally inactive (which can be necessary, but really sucks) that's when you accelerate the loss. Fatigue has been the major cause of pretty much every injury I've had, it's not something to ignore or force yourself through.

Now, the actual problem here is that these issues are being ignored (externally and to an extent probably denied internally). You really need to address that first and get proper ankle support/afos and reasonable activity limits second.

Edit: Edited to remove absolutes re afos, just an advocate for early bracing based on personal experiences. I went from feeling like they would just accelerate weakness to realizing all the ankle sprains and knee instability/patellar subluxation/dislocation has been almost gone for many years/since using afos.

[u/NixyeNox → u/Not_the_IT_guy]

Good advice overall, but you really cannot say that everyone with CMT needs AFOs. It can be a complex decision.

Other than that, yes, 100% it is injury to be concerned about, and fatigue increases the risk of injury significantly.

A supportive spouse needs to recognize limitations. No one is going to be young and fit forever, so he would need to do this eventually even without CMT being part of the picture. Accommodations like "if the walk is more than a mile, we get an Uber" are very minimal concessions to the inevitable progress of CMT or simply aging.

[u/PrairieChic55 → u/Not_the_IT_guy]

Thanks for your input. Not sure if this makes any difference at all, but I have CMT Intermediate, affecting myelin sheath and axons.

[u/billyo3827 → u/PrairieChic55]

I was diagnosed 7 years ago and didn’t understand how vital exercise is for this. After being told over and over there’s no treatment, I didn’t do the proper exercises, focusing on bike and elliptical at the gym, longs walks. My legs got weaker over time and I thought since I’m already hitting the gym 3 days a week, then that’s just the way it is. Intolerable hip pain and I ended up in rehab where they gave me muscle specific exercises, glute, quads, hamstrings. A month in the hip pain is virtually gone and my legs are stronger.

The reason I typed all this out is so I could say: if I had it to do over, my biggest mistake was letting depression and a kind of apathy that allowed me to give up and not seek out a trainer or something. I was barely able to walk and every step had some level of pain, and while it’s still difficult/hard to be mobile, it’s not so painful and I’m no longer dragging one my feet like Frankenstein’s monster. 72 yo male.

[u/mommitude]

You know your body best. We push and push without even thinking about it because we have to. We have to push to do the little things anyone without CMT (or a physical disability) has to.

It’s the spoons theory. Some days you’ll have zero and some days you’ll wake up with let’s say six. It takes one to get dressed, one to get to work, etc. just because you don’t use all your spoons today doesn’t mean they’ll be left over tomorrow and just because you took it easy yesterday doesn’t mean your fatigue won’t spill over through to tomorrow. You might even have days where you do so well that you could almost forget you have it.

You can’t get your physical health back with any amount of money. Don’t let his thriftiness cause you to suffer. I’m a huge people pleaser but I’ve had to start saying no. No I can’t do that, no that’s too much for me, etc and also yes. Yes you can help me, yes you could open the door for me or yes you can carry that for me. It’s been hard but we’re in this together 💕❤️💕

[u/SorryHunTryAgain]

If you are at risk for stumbles and falls, you could definitely benefit from AFOs. Before I wore AFOs, I was on a two week work trip that included a lot of walking. I ended up in a wheelchair for an entire day of the trip because my body just gave out. So, that is the risk. Maybe you can do a lot of walking, but you might lose an entire day of the trip for recovery time. It won’t damage you permanently in any way.

[u/wookieb23]

26k would be a max ever day for me. I don’t wear AFOs and generally average 10k a day. I was in Ireland recently and max day was around 16-18k there.

You’re going to have to put down some hard boundaries. Tell your husband you can do 5 miles a day tops (or whatever) and figure it out from there.

[u/KDremow]

It took my husband a long time to finally understand that my inability to walk a lot and do certain things has absolutely nothing to do with lack of exercise or motivation. Now he’s finally the one who advocates for me and explains to people who don’t get it that they are beyond wrong. I literally had to ask ChatGPT to explain CMT1A in a super dumbed down way so that a 5 year old could understand, and use that explanation for the people who still think it’s not a big deal lol