What sort of shoes do you wear, where do you get them from and do you have any specific advice on footwear?

[CMTUnitedKindom]

I know this is a perennial problem with CMT, and when asked, it's the one question I can't fully answer. Can you answer with as much information as possible as to the type of shoes you wear, where you bought them from - website, specific brands - in particular, if anyone has had custom-made shoes made, where from, how much? This is a resource that is desperately needed, and your answers will be shared with the CMT United Kingdom website and through the magazine.

[curlyburli]

Trainers, cheap and cheerful from Shoe Zone. Usually under £15, because my splints wear and tear and they dont last very long. Ive tried slightly raised heals after suggestion from orthotist but cannot walk in them. Also trainers are light and flexable.

[Penarthgran]

I get my shoes from Hotter or Wider Fit shoes, both companies have websites and you can order on-line. I'm lucky in that I now have a Hotter shop and a specialist footwear store within easy reach so I can try different styles before ordering. I had a pair of shoes made by a local cobbler but they were no more comfortable than ready to wear and about five times the price.

[Susie19]

About footwear with CMT My doctor refered me to Hull Royal Infirmary where I was measured and fitted with two pairs of boots, although they are quite heavy you soon get used to them, but the only draw back would be in the styling !!!!! So I would get your doctor to refer you to the nearest hospital that has A SPECIAL UNIT for people with difficulty in walking. Hope this answers your question. I hope u have a good day Susie19 The boots are supplied by the NHS free of charge.

[seasider18 in reply to Susie19]

I only recently heard of the NHS shoe making service from a podiatrist at the local hospital. This was just prior to a rather tentative type 2 CMT diagnosis as tests had been non conclusive.

I had my feet measured and a mould made. Two weeks ago I had a fitting of the part finished shoes and now awaiting delivery. I used to take a size 10 shoe but now due to curled up hammer toes my right foot is a 9 1/2 and the left 8 1/2.

[Whiterose]

Hotter shoes or New balance. New balance give support to the ankles, are light too.

[John1945]

I can fully recommend "Cosyfeet" for their stylish footwear range, and the excellent choice's that they offer: Their shoes are extra wide, and allow me to wear my orthotic "support "splints" inside my shoes: Simply order 1 No. size larger that your actual shoe size: They also offer VAT free, if you complete the declaration:

In particular the velcro fastenings, are most suitable for my weak Cmt hands. You can also order extra length velcro straps, if you have high arches:

go online, and view their enire range:

[sarawat]

My son wears Peidro stabilty boots at the moment to help with his walking. Got this pair from the orthotics Dept at our local hospital but brought him a second pair and some sandals for summer from a site called Gilbert and Mellish - really helpful and promyt service.

[Whiterose]

Just to let you know I recently bought some new shoes called Dr Comfort. I got them from my chiropodist in Bournemouth. They are great, and so comfortable but expensive.

[Amanita]

Hotter shoes look nice, but even the "extra wide" ones are TOO NARROW!

I have genuine Ugly Sisters'- style feet; they are very wide, and square-ended (first 4 toes all about the same length), which makes shoe-buying a complete nightmare.

I finally was told about a marvellous little firm in Sheffield, called Guat. (they have a website) They do lovely wide shoes that aren't too pointy. You get someone to draw round your bare feet with your weight on them (tried to do it by myself , but couldn't do the bit at the back), send the drawing in with your order, and the shoes arrive in the post.. If there's a bit that pinches, you mark it with chalk,return the shoes, and they stretch the spot for you. They repair their own products.

But even with them I have to get shoes that are too long. I imeasured my feet recently with that chart you download from DB (also known as Wider Fit) shoes, and they came out as size 3, with 6 or 8 E fitting, but they do round-toed shoes, which I don't think would fit. My Guats are size 6, but they are very comfy, and my elastic'n'velcro orthoses fit well. Dunno what will happen if/when I graduate to something more rigid.

[Amanita]

An update, 10 months later. The toe-boxes of my lovely Guat shoes are now no longer deep enough for increasingly bumpy big toes, so I took the plunge and ordered a pair of shoes from Wider Fit's catalogue. Fortunately the P&P covers any number of returns, so I can experiment with fittings.

[Amanita]

The Wider Fit shoes didn't fit, neither did the second pair. The toe-end is simply the wrong shape for me - definitely proved now. And they have now styled the soles so that the edges are rounded off, leaving a smaller area in contact with the ground, which looks nice but doesn't help with inversion or balance issues.

Think I've reached the end of the shoe-hunting road and have to admit defeat.

[Amanita]

A few days ago I saw my new orthotist. Result - they'll make me a pair of NHS ankle boots !

Measuring seemed a bit sketchy. Preliminary fitting end of January...................

[John1945]

Hello to all my fellow Cmt suffers,

Just a recent update on my mobility aids, and needs:

I am currently under the care of NHS Lanarkshire Health Board's excellent Surgical Appliance Unit, based in Wishaw General Hospital: A few months back, I telephoned them to enquire about arranging for my existing A.F.O's ('toe-to-knee' polyurethane lightweight rigid splints) to be refurbished: They arranged this without any problem, as previously they had taken casts, and provided me with a "spare" pair of "Ankle-Foot-Orthoic" (A.F.O.'s):

However, when I arrived to collect them, they then suggested that I have new casts taken, as all new AFO's supplied, should now have their bottom sole plate(s), extended outwards to below to the 'tips of your toes', to provide them with support, and help to prevent my toes from "clawing": Most incredibly my orthtist then gave me a pallette, with a full range of colours to select from ! Wow ! (I selected Black), and was delighted to learn that they would be manufactured by the marvellous, and most highly recommended >>>>

Buchanan Orthotics Limited

603 Helen Street,

Ibrox

Glasgow G51 3AR

Tel: [phone]

E-Mail: [e-mail]

This PRIVATE company, provides a 1st class orthotic + appliance service, to most of Scotland's NHS Health Boards:

This organisation, also offers a PRIVATE outpatients clinic, and a mail order sevice, including a full online service to their customers: I would recommend that you order their catalogue first, it's full of very useful information: Their range of footwear in vast, and it even allows you to even select the depth of the "toe-box", so that you can accomodate your Orthotic/Splint within your footwear:

Ask your locally based NHS Orthotist, if, or can they be allowed they use this supplier :

Good luck to all, and don't let this 'dammed' CMT beat you ! ! !

John ...... (Glasgow)

[Barry52]

The NHS supplied two pair-MY GOD IT LOOKS AS IF I STOPPED OFF AT HERMAN MUNSTERS SHOE STORE

[gunner in reply to Barry52]

Hi me too i would say my right boot looks and fits better than left one which seems too big and has faults maybe it can be sorted when i ask for a 2nd pair. I also had to fit a piece of velcro to the boot to stop the tong dropping out the bottom and had the other stitched to also stop it dropping. but it takes soo long to get repairs done back and forward bcos they need to send them to holland i think? whats all that about can't we make a pair of shoes or boots in England?? my foot doctor says my feet look a little better since i bin wearing them but only bin wearing them a little while but i have problems with my whole body and they cause pain wearing them bcos they false ur feet and ankles into different position that's not natural, time will tell i suppose. but they certainly are not flattering but i tell people about my illness so hopefully they accept me for who i am, being open helps u and them and people really do not look at ur feet much! and these days people really don't care what is on ur feet as they have there own problems to deal with. anyway my advice is keep goin back till they get them right if u don't push these days it won't happen good luck.

[Amanita in reply to gunner]

John 1945 - I am interested in what you said about your SAFOs. My neurologist has strongly advised me to explore the NHS for orthoses before I try the private sector, as it would be a very expensive mistake (£2K) if it didn't work out. So I'm sticking in there for the time being, and fortunately have a new orthotist (the previous one said the private sector had absolutely nothing to offer beyond what the NHS provides !) The new one thinks SAFOs could well suit me , but although he could prescibe them in England they are totally and absolutely not available on the NHS in Scotland.

Except in Wishaw, it seems. I'll tell him at my next appointment.

Can you please tell me how easy/difficult are they to put on with the famous feeble CMT fingers? And what happens if your feet and ankles swell slightly during the day ?

[John1945 in reply to Amanita]

Hello to Amanita ....

I have over the last 10/15 years been under the care of

1) NHS Greater Glasgow and Clyde Health Board:

2) NHS Lanarkshire Health Board:

Not, or never has the cost(s) of providing the correct orthotic (A.F.O.) for both of my legs/feet been a consideration for both of these NHS Health Boards!

I have always received the "best" available orthotic for my Cmt legs/ankles/feet: Indeed, both of these Health Authorities, followed up my successful fitting of my AFO's by arranging for me to select from a vast range of 'bespoke' footwear to accomodate my 'splints':

They then measure each individual foot, for length/width/ankle-girth+toe-box height:

The acual "splints" are 'lightweight' and very easy to put on, as they come with 2No. x Velcro staps, which are near your knee's, and around your ankle's: I always pull on a stockinette, or a heavy deneir sock firstly, to prevent 'chaffing' of my skin:

I also have diabetes Type 2, so occassionally my ankles do swell, ever so slightly, and the splints actually help me to limit any swelling:

Like yourself my weak/clawing Cmt hands manage to secure the 'splints' fixing straps, to my lower legs with, no bother at all

Most incredibly they then offer you, a shoe style catalogue to choose from, including your own personal colour choice:

Good Luck .....

John ..... (Glasgow)

[Amanita in reply to John1945]

Hi, John 1945,

Many thanks for the information. It's reassuring that SAFOs are not the big challenge I imagined to put on, and that some swelling in lower legs & feet isn't a prob.

Looks as though my real challenge will be to convince the orthotist that SAFOs ARE available on the NHS in Scotland ( I am in a health area rather north of where you are).

Do SAFOs help to prevent you from putting your weight on the outer edges of your feet ?

[John1945 in reply to Amanita]

Hello to Amanita .....

(A.F.O.'s) Ankle Foot Orthoitic's, are made of RIGID, lightweight polyurethene plastic materials, which are then individually moulded to suit your each individual foot's profile:

Your orthotist will take plastercasts covering from your toes, up over your ankles, and up to just below your knees: The orthtist will then "set" the correct angle of your foot/leg, and just as the plaster is beginging to get firm, the casts are then opened and removed:

They are then sent away to a specialist manufacurer, who will use both plastercasts to create a mould, which is an exact ridgid shape of your both your arches / feet / ankle's:

The A.F.O. (splints) have a sole plate from below your toes, along the your ankle, and up behind your calf's to just below your knees, all moulded to suit your own lower limbs shape/contours:

These devices (splints) are then secured by 2No.Velcro ankle, and below knee straps, which despite my 'clawing' Cmt hands, and I just manage to secure them:

I personally find that I can wear normal extra wide fitting shoes, if I order them one size larger :

Once you get used to wearing these rigid splints, they will give your lower limbs firm support: You can also use a heavy deneir knee high stocking before putting on your splints to prevent any chafing, or sweating:

Best of luck .....

John ..... (Glasgow)

[Amanita in reply to John1945]

Thank you very much, John 1945,

I'm wondering if we are talking at cross purposes. I had understood that SAFOs were made from squidgy, non-rigid silicone - the " S" in SAFO- and that the rigid sort were just AFOs.

My orthotist would consider getting me fitted up with rigid ankle-foot orthoses, but NOT the silicone ones. From pics I've seen on the internet, silicone orthoses appear to fit closely like toeless socks-with-straps, hence my concern about getting them on, and probs if ones ankles swell a bit during the day. I am suspecting that they don't stretch.

It is this expensive, flexible silicone type which I'm told is absolutely never provided on the NHS in Scotland.

Or have I got it all muddled ?

[John1945 in reply to Amanita]

Hello to Amanita.....

Yes Amanita you are perfectly correct, as I got my A.F.O.'s and S.A.F.O.'s mixed up:

The difference between the two orthotic devices are:

1) Ankle Foot Orthotic (A.F.O.) is made from LIGHTWEIGHT 'RIGID' POLYURETHNE PLASTIC material, which is cast,and moulded to knee-high, and to suit each individual foot / ankle / and calf areas of your lower limbs:

Weststmarc, Southern General Hospital, also tried to create orthotic's supports made from CARBON FIBRE which is a super lightweight material, however the programme was abandoned due to the high rate of failures with the C.F.A.F.O.'s fracturing being reported:

The extremely high cost to produce, and manufacture C.F. othotic "splint's" was another downside to them:

2) Dorset Orthopaedic Plc describe the benefits of their Silicone Ankle Foot Orthotic's (SAFO's) ™, as follows

a)Allows ‘normal’ foot/ankle

action

b)Improved sensory feedback

Improved balance

c)Can be worn comfortably

against the skin

d)Can be worn with or without

a shoe

e)Easy to fit, clean and

maintain

f)Can be worn for

showering/swimming

g)Reduced risk of pressure

sores

Their SAFO ™ is available in a number of product variants:

However, I suspect that you would require to pay an very expensive cost to purchase them privately:

Also, I also notice that they do not mention the most common consequence of Cmt disease/muscle wasting etc, is namely, "foot-drop" ?

[John1945]

Hello Karen Cmt UK....

Just an update, (13th Feb) on my recent 1st class, services that I received from Lanarkshire Health Board's, Surgical Appliance Unit, based in Wishaw General Hospital:

Both my son (44), and my daughter (43) now require (like myself) Ankle Foot Orthotic's, (AFO's) "splints", to provide them with "toes-ankles-below knees" support, and are individually designed : These are "Ridgid-Lightweight" "toe-ankle-below knee" othotics, manufacured from polyuathane plastic, which are then secured by two 'velcro' fixing straps, to eliminate the following Cmt problems >>>

a) Eliminate "foot-drop" :

b) Ensure that their heel, strikes the ground first when walking :

c) Soleplate is extended forward to support, and prevent Cmt's curling/clawing toes :

d) Each AFO is moulded to suit each individuals different foots / arch / ankle

dimensions :

e) Each AFO is secured by 'Velcro' straps to assist users with easy fitting :

f) Offered a selection of colours for the AFO :

g) Can fit inside an extra wide shoe, just order one size larger, to accomodate

the "splint" :

After a period of time allowing you to become comfortable with your individual 'Orthotic Splints', you are called back to the clinic, so that they can measure both of your feet, and give you a catalogue from which you can select a style of your choice, including diiferent colours, and materials :

My health own board use the service's of >>>>

Buchanan Orthotics,

603 Helen Street, Glasgow G51 3AA

Tel No. 0141 440 1999,

to supply their own "steprite-footwear" range :

However, I would firstly suggest all Cmt sufferer's firstly ask their own Orthotist, if their own individual Health Board, would agree to order them from Buchanan Orthotics ?

The full range of "steprite" footwear is extensive, as well as having "non-slip" soles, and being reasonably stylish :

Cmt'rs should also order their own catalogue, or to explore their excellent 'online website' :

John......

(Glasgow)

[Amanita]

Some of us who live in a different NHS area of Scotland haven't had any luck with trying to be referred to Buchanan, unfortunately, John. If we went there it would have to be privately, and involve a lot of travel, too.

I had a trial fitting of my NHS ankle boots recently at our local orthotics dept. They were by no means completed, and will not be ready for a few more weeks (ie 4 months after being measured - is that a normal waiting time?). They were very hard to put on and extremely uncomfortable (usual problem of the toe-end being a completely different shape from my toes) - I was told that leather stretches so I would have to wear them in . Altogether, the impression was not very encouraging, so I'll just have to wait and hope they will be less painful when finished.

[PhilC]

Having typical CMT feet I find Echo shoes are consistantly good having a wide range of styles and widths. M<y current shoes are a semi boot style which support my ankle.

[Whiterose]

Having used shoes I bought from my local chiropodist I was told about Mephisto. They are expensive but so comfortable and accommodate my sporlastic AFO's. Both have made a great difference to comfort and support. A softer shoe than Dr Comfort. and you can buy online or from a shop in Lymington Hampshire.

[Amanita]

Well, I have had my NHS ankle boots for about 6 months now .

I told my orthotist in December that I had finally given up trying to buy shoes that fit- my feet are too wide, especially at the toe end, (yes, I did try WiderFit) and my big toes too hammer-y for bought footwear - the whole problem being made worse by walking on the outer edges of my feet, having a slight leg length discrepancy, and needing space for my ankle supports..

The shoes are made for the NHS by a firm called Chaneco. The general design was selected from a catalogue, and the shoes were made to fit a few measurements taken by the orthotist. They open a long way down so it's easier to get ones feet in, and are made of very soft leather, and leather-lined. To deal with the walking-on-outer-edges. problem, the soles are thicker on the outside, and to help with balance, they get wider towards the floor.

On the whole they are pretty comfortable, though strangely the second pair are causing a certain amount of discomfort - Yes, I will certainly take them back for adjustment when I have worked out the cause of the problem . It seems very odd to me that the orthotist can't tell if a shoe fits, or where it is tight - when we CMT people can't locate the problem precisely, because of our poor sense of touch.

In spite of their rather clunky appearance, they are not tremendously heavy, and my friends reckon they are actually quite trendy-looking.

[beachwine]

My orthotist recommended New Balance one size larger and wide width. They are reasonably priced.

[strawberryshortcake]

I wear wider fit shoes. They do very wide ones. Bigger than hotter or cosy feet. 8E is the widest and the do flats, heals, boots, sanded, slippers. There’s are the only one that I can get to fit. I only take a size 3 but 8E wide. I tried Nhs shoes but they were never right. They used to build the sole up for me , but on the wrong shoe or the wrong side of the shoe, and ugly as well.