Re - New walking aid?: Just a bit of... - Charcot-Marie-Too...

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Re - New walking aid?

lilybet profile image
17 Replies

Just a bit of information I learned. Whilst watching a former paralympian being interviewed by Clare&Adi a few nights ago, he showed them his new strap to help with his foot drop. He had a strap click into the top of his training shoe (like a backpack clasp) and then clicked the other end into a velcro strap he had fixed around his ankle. That way when he walked he never tripped up! I've never seen that before but thought it was a fab idea. I wonder whether it's just an athletic aid at the moment or available generally. Anyone else heard of it?

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lilybet profile image
lilybet
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17 Replies
CMTUnitedKindom profile image
CMTUnitedKindomPartner

Sounds like a "foot up" - here's the link to the manufacturers! They are great for foot drop, but not so good if the ankles are wobbly as well.

ossurwebshop.co.uk/ankle-fo...

Karen

lilybet profile image
lilybet in reply to CMTUnitedKindom

yes interesting site thanx Karen

curlyburli profile image
curlyburli

I have such splints like those. One strap with velcro around the ankle and the other around my foot. Connected by as you say clips. I dont wear these that often as they are not as good as lifting my feet to 100% lift when I walk. . My rigid ones are better for that.

curlyburli profile image
curlyburli

I have taken a photo of these splints. How do I put it on here?

gingergeoff profile image
gingergeoff

I have used the Ossur ones, but found that the elastic starts to fray and split after about 4 months of use. In total, I had been using the Ossur ones for about 2 years, but went through 4 or 5 sets.

My orthotist has now given me a similar device from Boxia - langergrp.com/boxia-p-1398.... . They work on the same principle, but the elastic is thick and the whole thing seems a lot more robust. I've been using these since May and they are still in really good condition.

Penarthgran profile image
Penarthgran

I, also, have a device from Boxia chaneco.co.uk/orthotic-prod... Ankle Brace which I find useful. It's less bulky than a Foot Up and doesn't require anything inside your shoe.

angelskylight profile image
angelskylight

i tried them they are

not very good for foot drop an weak ankles

lilybet profile image
lilybet

Thanks very much everyone. Yes - I agree, may not go the 'foot up' route then because my ankles always been very weak. And at the moment I'm wondering how many more appliances I can strap to my body anyway (lol!).

Primary-Bursar profile image
Primary-Bursar

Hi lilybet

I wear a foot-up when I wear trousers and lace up shoes. I find that it has helped me enormously and really do feel a difference when I don't have it on. I have a really weak ankle and was continually going over and twisting the ankle. However, I haven't done this whilst wearing the foot-up, so it may be worth a visit to your orthotist and give one a try. Hope this helps.

lilybet profile image
lilybet in reply to Primary-Bursar

Thanks for the info. Primary-Bursar. Think I'll look into it further then.

HorshamMalc profile image
HorshamMalc

I have reasonably secure ankles but do suffer from tripping and the embarrassment of slappy, noisy feet when I walk anywhere. People always stare. I have found a solution that works for me in the form of MBT rocker soled shoes. These are really intended for normal (i.e. not CMT) people who want to walk with a better posture and achieve more of a workout on their leg and core muscles. It seems perverse that a shoe designed specifically to create instability actually helps someone with a stability problem, but I've found a great deal of benefit from them. The rounded soles keep my toes from hitting the ground first, so I don't trip. Best of all I'm virtually silent again when walking, so no more sideways glances in the high street! The stability issue is no worse for me than it was anyway. The recommendation from the manufacturer is to only wear them for short periods, until fully used to them, but I've lived in them from day one and love them. They have quite a bit of spring in the soles and another benefit for me has been that, after a few weeks of wearing them, my painful right knee joint is no more a problem. I can't say they would work for everybody with CMT, and they are expensive at about £180 a pair in the high street (they can be found for about £75 on the web) but certainly worth every penny in my case.

lilybet profile image
lilybet in reply to HorshamMalc

Thanks HorshamMalc, that's very interesting. I did wonder whether they might be worth a try a while ago but without knowing anyone who wore them I didn't do anything about it. Yes- it's ironic that as a CMTer you can wear them successfully and for longer periods than intended. I'll have a look for them. Thank you.

Paulina profile image
Paulina in reply to HorshamMalc

HorshamMalc, Thank you soooooo much for recommending MBTs. My pair (bought online for £80), arrived last week and I have lived in them ever since. Usually when I walk short distances, I have bad pain my hips and knees but when wearing my MBTs, I am pain free as its like walking on air. My ankles are not to wobbly (expect when I have had a drink, they then turn to jelly!), so these are ideal for me. I will be ordering a second pair that will be suitable for work. I would like to highly recommend these to my fellow CMT suffers, however, please take note of Karens comments below.

Funnyfeetbecca profile image
Funnyfeetbecca in reply to HorshamMalc

Hi, I totally agree rocker trainers are brilliant. They have kept me walking relatively ok, I can walk a lot further and they kinda propelle you forwards and give you a spring to your step. I’ve never tripped up wearing them as the design makes it very difficult to do so. I need orthotic insoles in all my footwear or I’m in extreme pain and trip up....however I do not need insoles with rockers as they support my feet....brilliant! 😊 My only other option was splints, which was the advice given 10 years ago by various ‘professionals’. I explained how great rocker trainers are and could they spread the word.....unfortunately unless something is scientifically proven, professionals dismiss your advice and push you to wear splints or have surgery etc. My cmt is pretty bad ie foot drop, wonky ankles, loss of muscle mass in upper and lower legs, but rockers keep me mobile and more balanced and I still don’t need splints! You just need to practice wearing them as u do feel extremely wobbly at first but then after a few days they just feel like normal trainers. Mine only cost £12 from Sports Direct and I love them. Best wishes and stay positive 🙏

HorshamMalc profile image
HorshamMalc

Hi Lilybet, if you are interested this was the cheapest on-line MBT seller I found. mbtuksale.net. It's foreign, I think in China, so they may possibly be fakes. Very good ones though if that's the case. I had no problems with delivery and I've worn them pretty much every day since the beginning of June and they are showing no sign of wear at all yet. All MBTs tend to look a bit 'trainerish', but the men's Tembea black shoes I bought are certainly smart enough for work and general day to day wear. I'm going to buy a couple more pairs from this supplier whilst the prices are comparatively low.

CMTUnitedKindom profile image
CMTUnitedKindomPartner

Just a quick warning about MBT type shoes - which includes Skechers rocker bottom trainers. These are ONLY suitable if you have stable ankles and don't go over on the sides of your feet. If there is ANY lateral (sideways) instability in your ankles, you will fall off them and do damage!

I wear Skechers trainers sometimes because I had a total ankle fusion on my right ankle last year, and have no (even less) heel/toe motion in that leg, therefore these give me a bit more of a normal, easier gait.

Just be very, very careful!

Karen

PhilC profile image
PhilC

I agree Karen, I tried these and kept falling off the side of the shoe, it was like trying to walk on cobbles.

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