how do I get support for my ankles and foot drop ?

[helen_jones]

I was diagnosed two years ago with CMT type 1. I have been supplied with some orthotic insoles and some "dorsi wedges" to help stretch my calf muscles while resting, I am getting increasing pain and weakness in the lower calf area and tripping on thin air ! I find walking hard work and as I am on my feet all day as a hairdresser, my job is getting more and more difficult. Can anyone suggest a further support that may assist me ?

[cleo9]

HI , I have type 1a and for the last 5 years I have used SAFO ' s from Dorset orthopaedic , they are very comfortable to wear and give good support , have a look at them on the Internet !

[Amanita]

Hi, Helen,

I have type 1, as well, and have been supplied by the local NHS orthotist with Neurodyn Sporlastic ankle braces. They are less "aggressive" than rigid AFOs (ankle foot orthoses), being made from elastic and Velcro, and do a good job of preventing me from tripping over my toes, while still allowing a degree of plantarflexion , which is helpful for driving. They are quite easy to put on, but eventually the elastic becomes less sprightly (I needed a strap shortening to compensate) and the fuzzy part of the Velcro may need replacing after a few months' wear.They come in various sizes.

When this proved inadequate for my worse ankle (which tends to twist over) I was given a semi-rigid device - a Form Fit Ankle Brace by Ossur (should have an umlaut on the O) - there are 2 sorts: I have the one with the figure-of eight straps (to stop ankle twisting). It has no elastic components, but the long diagonal straps have Velcro fastenings - which tend to grab and tangle with the long laces while you are trying to put it on. It feels good and does help to prevent my ankle from capsizing .It also comes in assorted sizes Both sorts are worn inside your shoes and you can look at them on the Internet.

However they do not prevent me from putting my weight on the outer edges of my feet*, or help my balance, or make my very energy-inefficient gait any less tiring. SAFOs (silicone AFOs) are unknown in my NHS area!

* Do your orthotic insoles help with this? How do they work?

[helen_jones]

the insoles seem to have helped with the painfull heels and arch I had, and my balance seems ok. I havent gone over on my heels since haveing them but i now wear trainers most of the time so this has probably helped. My legs still get very tired and I seem to pull the muscles in my lower leg area doing nothing....They do help correct the rolling in of the foot though. They just slip inside your shoe although they are quite big and bulky and only really fit inside a boot or trainer. I have an Orthotic appointment coming up I think I will ask about the velcro supports you mentioned, thank you.

[spabbygirl]

Thanks for that Cleo & Helen, I'm a type 1A sufferer too and have exactly those symptoms. I asked my podiatry surgeon if he could help with my foot drop and he's said, 'yes, I haven't got time now - ask me next time,' for the last 18 months! To be fair I have been having foot surgery so would have had to wait anyway I suppose. I have seen safo's mentioned on here and did just google them to see what they were & now I've discovered them I'll ask again.

[Primary-Bursar]

I too have type 1A and suffer with foot drop and ankle twist in my right foot and have balance issues. I have a 'foot up' which is a simple device in two parts. The first part is attached to your shoe with your laces and the second part is a padded velco cuff which fits around your ankle. One is then attached to the other by a strap and catch. I find walking much easier when wearing this device and to assist with my balance I use a crutch. Both together make walking much easier and more importantly safer.

Follow this link and see for yourself what they look like.

ossur.co.uk/pages/10372/

I had mine provided by the orthotic department though the NHS. It also allows you to wear normal shoes provided they are lace ups which is why I didn't like the sporlastic foot braces as I couldn't wear normal shoes.

Hope this helps.

[helen_jones]

they look pretty good , looks like there are several options available , i hate not being able to wear pretty shoes now though ;-(

[ValFC]

I have had CMT Type 1 for more than 20 years, with increasing walking and balance problems. Spent a LOT of money on Dorset Orthopaedic SAFOs (our local NHS wouldn't fund them), but found them very clammy on the legs, and despite claims that they fit inside ordinary shoes – they don't. You have to buy shoes at least a size larger than normal, with Velcro fastenings which open really wide, to get them, and your feet, inside. If like me you also have problems with your hands, this is all really difficult. However the orthotist at my local hospital has just had a wonderful pair of full calf-length boots made for me, with a zip on the inside and lacings up the front to adjust the fit. They are really supportive, and there is none of the fuss and bother of trying to fit things inside other things. The design was based on some 'fashion' boots I had a good number of years ago, which were very supportive but wore out and couldn't be replaced. My new made-to-measure boots are black leather, but I'm hoping to be able to get a lighter coloured pair later in the year! As far as I know there is no reason why something very similar couldn't be made for male CMT-sufferers too; under trousers the length of the boots would be invisible.

[John1945]

Hello to helen_jones....

What great support, and advice you are receiving from your fellow Cmt sufferers, who wish to share the many, and vastly different approaches there are to this, regrettably PROGRESSIVELY WORSENING neuromuscular disease, and as you will be aware at present there is no known cure available :

You personally must adopt a most POSITIVE ! and mental approach to cope with Cmt, and be willing to accept and adjust, to each further STAGE : Cmt is like going down a set of steps ! Each sufferer will VERY SLOWLY, over their lifetime, will go down/descend one further step !

When you reach this lower step you must accept - adopt - manage your new change to your disease : Do not let the changed circumstances get you down : You can BEAT this disease ! ! !

I personally have two 'RIGID' "toe-to knee" ankle-foot-orthosis (A.F.O.'s), made from lightweight polyurethane plastic, and secured with velcro straps : Before putting them on my legs, I slip stockinette socks next to my skin, to stop any possible chafing :

This then allows me to wear ordinary shoes by purchasing them, in ONE size larger :

Most interestingly my daughter (44) has had Cmt Type 1 (inherited from me), she is a successful businesswoman, running a busy 6 chair hairdressing saloon : She also wears the same type of A.F.O.'s as me, and has has fitted a firm cushion to the side of her chair to allow her to lean on, and rest when possible :

Throughout all these discussions there is never any mention of the dreaded "Cmt Hands" ? You may anticipate problems in the future, weakness - clawing fingers - loss of fine finger dexterity' - picking up coins - tremor, etc etc, as you get older :

Try this test, open your right hand wide - fingers spread wide apart - make your thumb rigid :

Now use your other thumb to attempt to push your rigid thumb towards your forefinger/palm, it should not move inwards itself : Examine between your thumbs and forefingers' is there a fleshy muscle there ?

It's not unusual to have a totally wasted muscle at the bottom of your thumb :

Best of luck to you....

John.... (Glasgow)

[Amanita]

I suppose it depends on what Primary-Bursar regards as "normal" shoes! I certainly wear my Sporlastic and Ossur devices inside my "normal" shoes. But then I can only get one type that remotely fits my idiosyncratically-shaped feet. They are lace-ups, (made by a small firm in Sheffield) and are now stretched even wider by having the orthoses inside. Ohterwise there are large wellies for the garden, and, for indoors, those men's leather sandals with Velcro straps that are occasionally long enough to accommodate my high insteps, but not the ankle supports. I have never been able to wear pretty or elegant shoes

From what I have seen, I think "Foot Ups" only help with the foot drop, and don't give lateral support.

John1945 and ValFC's point about weak CMT hands is certainly relevant to fastening and unfastening all sorts of things including orthoses. My Sporlastic ones do take some effort to pull the Velcro undone, while I have a night splint ( alternate legs on alternate nights ! ), which I can no longer fasten on my L leg as it involves pushing a "buckle" together in an awkward position. Perhaps that's just as well, because I really strugggle to release it even on my right leg (by squeezing the sides of the "buckle") in the middle of the nght when it becomes too unbearably uncomfy.

[helen_jones]

I do know this is an incurable and progressive disease, but on a positive note it also varies by degree greatly from person to person. I think I have inherited this from my Dad although he declined to be tested, as he is 77 and didn't see the point. Of recent years he has suffered from claw hands and almost lost his little finger as it was that bad, thankfully the surgeon saved it. But he has never had any leg supports. I notice his feet are similar to mine and his legs and arms very skinny and wasted, an odd high knee walk. I know it varies greatly in families also and no one person is the same, so I am dealing with each thing one at a time and trying not to think the worst. I will speak to the orthotist, it looks like there are several options available and I am sure there will be one that will help me. ..... Keep smiling chaps and thank you for your advice i didnt even know these things existed.

[Amanita]

Good luck. Helen. I hope you find your orthotist helpful.

[helen_jones]

I will let you know how I get on x

[nicinew]

Hello

I wear SAFO's from DOrtho and have for nearly 10 years. I actually don't live in the UK anymore and live in a very hot humid climate for 6 months of the year. With lots of talc and regular washing I have no problems though they can get sweaty. I would not be able to hold down my job or have/ do "run" around after my children without them. I tried AFO's before but didn't find them comfortable. I guess it's personal preference and trial and error. I wear fashion boots with dresses but mainly wear trousers with converse trainers or crocs in the hot summer or Ugg boots in beijings cold winters. I now have to pay for them privately but they will be worth every penny to be mobile and active.

[williamalfred]

Hi Helen Jones my name is Sue Marshall i`ve got CMT Type II, had various insoles in my shoes over the years, boots from the hospital which were terrible, hard plastic splints that

looked like a pair of boots used to get quite a few comments about them....now wearing splints that remind me of blade runners and these are a lot better than the things i used to wear they help to keep my feet from dropping so i don`t fall over, which i do quite regularly.

[Tandarts]

I have CMT type 1a,diagnosed 1991. My knees started to give way with swelling and a lot of pain. Is there anything that I can do to help myself ? I am going to see a orthopedic surgeon

but would not like to be operated on.I am not overweight and this has started within the last 3 weeks.

Marius

[PhilC]

Nothing to add except you shouldn't be standing all day, what you need is a stand stool wehich allows you to sit but at a standing height. As the stool is on castors you can reposition yourself around your client without standing. I got mine from Europamedical.co.uk

[Blueberry5]

I am using Flopstops, dropfootorthotics.com/. I find my balance and ability to walk much better.