Tandarts who needs advice

[Tandarts]

I have CMT 1(a). Was diagnosed in 1991, had two new knees , toes straightened etc . I would like to know if someone has leg and ankle braces and if so does it work. I don’t want anymore operations ie ankles to keep me on my feet and postpone a wheelchair. I’m 69 in June. Hate taking Lyrica for the peripheral neuropathy

[PRseam]

I got the ankle foot orthotics last June. I am also 1-A. Two of my brothers and my sister have them and they have really made a huge difference in my mobility. I walk several miles a day with them. They are not good on stairs though. I wish I had gotten them sooner. I am 70 years old and am really out of shape from lack of activity for the past seven years since I had major foot surgery. I do water aerobics five days a week now and am determined to get better. Get the AFO’s. They are life changing. A support group is helpful, too.

[Tandarts in reply to PRseam]

Thanks very much

[Amanita]

Hi, Tandarts,

I was diagnosed (1A) in 2012, and was sent to a rather unhelpful orthotist who fixed me up with flexible ankle supports which did help a bit, but were difficult to fasten. The first ones were elastic-and -velcro, and a subsequent one was semi-rigid with very long laces - better support but even harder work for CMT hands.

He was succeeded by a much more approachable and helpful man, who cast my feet and legs for AFOs. These are a pretty standard design, made of plastic and almost rigid. At my request they extend right under my toes to the ends, otherwise my toes would bend under (ouch!) when pushed into shoes. By this time, as my feet are super-wide and pretty square at the toe end and my insteps high, not ever Widerfit shoes fitted and I finally gave up trying to buy anything that fitted, so now I wear custom made NHS ankle boots which with the AFOs are surprisingly comfy most of the time. The soles of the shoes are thicker on the outer side to counteract the fact that I put most of my weight on the outer sides of my feet.

But they don't help at all with forward momentum, so although the support is great, walking is very hard work indeed. A hundred yards with crutches (for balance) is about my maximum distance, and I estimate my speed at significantly under 1mph. For long walks (more than 100 yards) I now have a splendid electric wheelchair which enables me to whizz along at up to 4mph - while able to look at my surroundings (ie not having to look where i am placing my feet - and crutches- all the time). For me, wheelchair freedom certainly outweighs wheelchair embarrassment - well, nearly always! I am a little bit older than you but not much.

I also drive (an automatic now), and find that the AFOs have just enough flexibility for me to vary the pressure on the accelerator very slightly, though nearly all of the movement comes from my thigh. I brake with my left foot (as advised to do when I had my medical driving assessment), again using my thigh muscles.

One thing I have learnt about this CMT malarkey, though, is that we are all different. For example unlike you I am not plagued with neuropathic pain, for which I am mightily grateful; and you have had operations on your feet and knees, which i have not - but my new hip is marvellous. So the type of AFOs which work for me might not work for you - and vice versa.

I wish you all the very best and of course hope that you will be be put in touch with a good orthotist who will help you to keep walking for many years.

[GrannyMaz]

Yes Tandarts, i wear boots with AFOs in them, made by a Podiatrist/Pedorthist, they are extremely helpful as they help with balance, I hate Lyrica too, i refused to take it, some recommend Baclofen , google AFOs and take a look at all the types and the help they give and go for it...

[Tandarts in reply to GrannyMaz]

Thanks very much for the information

[beachwine]

Hi tandarts, one of the 1st things my neurologist did upon my diagnosis of CMT was a prescription for AFOs. They definitely improve your walking. Drop foot is a causality of CMT. The AFOs take away that that shuffling walk. Steps are an enemy, but most every place in US is required to have handicap access. My insurance paid for these. The orthortist said to buy shoes in wide width instead of medium. The best shoes I have found are from Orthofeet.com. The people you speak with are more than order takers. I've ordered from them twice with positive results. They understood AFOs, the need for a full toe-box to accommodate hammertoes & got velcro closures because both CMT & rheumatoid arthritis have affected my hands. They tell you to wear around the house & if they don't work for you, you can return. I still carry a cane to help with balance. I haven't driven in over 3 years because I have no feeling from knees to feet. Wouldn't that be fun for other people on the road. I've heard AFOs can be bought off the shelf from sights like Amazon. Don't do it! You need custom AFOs & if you have high arches like me custom orthotics. Keep moving.

Pam

[Tandarts in reply to beachwine]

Thanks for your advice !!

[beachwine]

Oh tandarts, forgot to tell you. I tried Gabapentin & Lyrica. Neither one did anything to help. I was better off with chocolate. That made me feel better!

[Tandarts]

I’m overweight so no chocolates for me

[beachwine]

Tandarts, no talking abought weight. That's worse than swearing. I need to lose weight too, but I've made it to 70 so no one is beating down my door to be a swimsuit model. My hubby says if you're overweight it fills out your wrinkles & you don't look your age! Keep a smile on your face. It makes people wonder what you're up to.

[Tandarts]

Thanks that’s a positive outlook on life ✅