Charcot-Marie-Tooth UK
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fitting shoes

I have been reading about your posts on getting correctly shaped shoes but I think you may be missing an important fact and this is, If your feet are being effected then the insoles need to be molded as its not just the shape around the feet its also how your feet are shaped underneath and how they sit. As I have high arches, so the insole has to create a flat base for your feet so will need to fill in the space to create a flat and supportive base. Just my opinion through my experience thought i'd put it out there ok.

7 Replies

That's interesting, Gunner. Neither my original orthotist nor my new more promising one has ever said anything about insoles - and every visit I moan about my weight being mostly on the outer edges of my feet, with the shoe soles wearing accordingly - increasing the inversion. It seems obvious to me as a mere patient that something could be done about the inner contours of ones footwear. Will have to wait and see what happens with my boot - fitting appointment at the end of Jan.(2 months from measuring to trial fitting - I wonder how long the finished boots will take !)


Hi nice to know I wasn't talking complete tosh hehe just to let u know my boots took about a year after several fittings a retweeking my advice is make sure ur completely happy with em b4 leaving with them. I've had mine now for bout 3 mnths and unfortunately the sole seems to av colapsed as they were a cork material so now need to try see orthotist again c if something can be done, plus the left just don't look right. But gd luck


Hi, Gunner -

Thanks for your account of your experience of NHS footwear, and your advice. I hope you don't have to wait months to see your orthotist, and that he'll sort out the problems.

Well there has certainly been progress since my last post. The January fitting was a bit alarming, as the ankle boots were painful and far from complete. I received the finished footwear on 11th March, and was told to wear them in gradually and come back in a month. Of course no appointment was available so soon, and it will be 9 weeks when I get back there. In general I am surprised how comfy they are (soft leather apart from the stiff toe end). The best thing is the soles which are thicker on the outer sides, and really do seem to stop me walking on the edges of my feet; they also widen towards the bottom, giving an increased surface area in contact with the floor , and actually do make me feel more stable (though it is even more important to lift my feet properly, or I can go on ahead while my sole is still gripping the floor - and fall) .

A problem I repeatedly have is that my toes tend to curl under while I am putting my footwear on,- and then it hurts like mad to walk. The NHS boots open a very long way down, and the inside surface is fairly smooth, but it still happens occasionally.

The boots are to go with my elastic-and-Velcro L ankle support and my semi-rigid R support, but they are designed to accommodate rigid plastic AFOs in the future. At the moment pulling on the orthoses and doing up all their respective straps and laces, followed by the boots and their straps - can easily take me 10 minutes.

The appearance is quite clunky, but I have never been able to wear pretty or elegant shoes in my life, so that isn't an issue if they actually fit. I guess they will be pretty warm in the summer.

1 like

Hello to gunner .....

Sorry,I am not missing any point ! you are !

Many of your fellow Cmt sufferers, including myself have 'high-arches', medically called (pes-cavus) which is the most common symptom of Cmt, due to the wasting of your lower limbs muscles, and an unusually "tight" Achilles Tendon, which then, and does not, and will NOT lengthen as your foot/feet/bones keep growing (especially in teenagers), and causes feet/foot/bones to distrort:


This in turn causes Cmt sufferers to walk on the outside edges of both of their feet, and develop 'foot-drop', where their front of foot toes area, fails to strike the ground first, instead of the usual/normal 'heel-first-strike', and therfore this can lead to, "tripping", and them walking on their 'tiptoes' :

At present my Orthotist, takes 'plaster-casts' of both my feet up to 'knee-high', to provide me with rigid lightweight polyurethene, ankle foot othothotics ('splints'), which also includes, moulded "built-In" supports for both my different height arches, and extending the bottom sole plate, outwards to below my toes, to support all of them, and also to assist me with stopping, their current "clawing" :


Therfore each of my bespoke/'made-to-measure', AFO's (splints), have by their own individually created design, then match exactly the soles of a naturally moulded insole support created within each AFO, to replicate the EXACT contours of both of my feet's shape:

My orthotic "splints" then fit inside my extra wide "ONE-SIZE-LARGER" normal footwear, ie, trainers, and dress shoes: Look for shoes etc, that have "high-toe-boxes":


Yes ! this foot disorder can possibly be cured by corrective bone surgery, however, today most Orthopaedic Surgeons, prefer as their 1st option is to consider repositioning muscles, soft tissue, and tendons etc:


Why ? you might ask ?

The answer is ?

Simply because no matter how successful corrective Cmt foot surgery is, and carried out, i.e. remember (both feet = 1 year for a total recovery), your existing Cmt disease, and your remaining/existing/weak muscles/lower-limb(s) support muscles 'WILL STILL EVER SO SLOWLY, CONTINUE TO WASTE AWAY' !

You will still have your balance difficulties, and eventually the Cmt dreaded "clawing/fingers/ hands" :

Any surgical intervention is still today a temporary "trade-off", remember the Cmt definition, "it is a progressively "WORSENING" Neurological Disease", which will never get any better, and at present there no cure, only your own personal 'MIND' management, will get you through this DISEASE: ? ? ?

Always call Cmt a Disease, not a 'condition or, 'disorder' etc, etc:


Sorry if I appear to be lecturing you, like yourself I am totally frustrated with this Cmt Disease, as now my beloved Grandsons aged 19, and 16, have this year been diagnosed with Cmt following extensive neurological, and blood tests :

The 19 year old has the worse Cmt feet I have ever seen, however he has decided to complete his education before he considers orthopaedic surgery:

Good luck to you and best of health to all of your family ....

John.... (Glasgow)

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Hi John that is a lot of info and am aware of it all thanks! But the point I was trying to make is that what ever the shape ur feet r in u still need a flat yet supportive base so they build the insole up to support your feet and maybe force you into a normal stance, it maybe painfull for a while but in time it should help.


Hi glad to hear u have them they do use quality material I walked same as u on the sides or on tippy toes they tell u to wear them for bout 6wks and then if u need any alterations they can then be done and u should b aloud 2pairs once the first is ok. I've not had 2nd pair yet. They not the most elegant but hope they work out for u. If u need any advice or a moan I don't mind ok ;)


Hi Gunner,

They don't seem to have heard of insoles in this part of Scotland ! The only insoles in my squeaky new ankle boots are made of a very insubstantial thin cardboard-like substance, and are quite a lot narrower than my super-wide feet. It is the soles which are designed to correct my stance. I suppose they'll eventually wear down along the thicker outer edges, and then the NHS will re-sole them. The orthotist did say said something about a second pair.

If I had insoles that were very smooth indeed, whatever their corrective features (or lack of), they could help my toes not to catch and curl under when I put the boots on.

The boots have developed some rather deep furrows and smaller wrinkles in their first 2 months of trial wearing, and the tongues migrate to the inner sides of my feet. The orthotist should know what causes it, and, I hope, be able to deal with it. Did you have that problem?

It is actually quite difficult getting my right foot into its boot, despite the extra-low opening, so I am wondering how on earth I'll manage when I graduate to rigid plastic AFOs. Suppose I'll just have to cross that bridge when it comes.


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