After a big relapse which left me unable to walk, I started treatment on Tysabri in January of this year. I have seen a lot of improvement in my health. I can walk again but my walking is slightly strange (i must say so myself lol). The main issues are that I have foot drop on my left leg which can be dangerous as I trip over my own feet. Also my left leg swings rather than me being able to lift my knee & then land my leg on the ground heal first before pushing off my toes & bending my knee. (I believe that is the correct theory behind walking. That is what my right leg does but my left leg has a funny looking motion).
I need anyone help/support. I appreciate i have come a long way & that not everyone makes a full recovery from a ms relapse but I am sick to death of people staring when I walk. Plus when it is busy I dont feel my walking is safe as I am wobbly and afraid of falling or colliding in to someone.
Any tips on exercises to do with dropped foot or to get my hips moving in a normal motion? Has anyone struggled to walk- how long did it to take you to recover & what did you do?
i need any tips. I feel like the improvement is slowing even though Im trying everything. I feel so low
There is no easy answer.
There are several devices or orthotics that can raise the dropped foot a little. They all work for some people, to some extent.
The best solution for dropped foot is probably the FES. The basic model is available on the NHS. Look at:
To get this, you need to be referred to your nearest centre by a neuro or a physiotherapist. It is also a good idea to get a physio to measure the length of your legs, in case the good one is shorter than the bad one (in my case it is, by 1cm). This can be corrected by an orthotist giving you an insole with a built-up heel.
The action of the FES is that as your heel comes off the ground, your toes are flicked left and up - minimising the drag from the dropped foot. Not everyone can benefit as it does depend on certain nerve pathways still working. There is also the problem of funding - depending on where you live. You can find your nearest FES clinic at: http://www.odstockmedical.com/fes-clinics
Getting an FES sooner rather than later is always best.
I also enjoy hip hitching my left leg and dragging my left foot. I used various means to stop the foot drop to reduce the trip / fall hazard. I did manage to get a referral to Odstock and get an FES system. The FES halves my walking effort so doubles my range from b@gger all to not very far. It has radically reduced my ability to fall over which saves NHS resources in A&E and ambulance use. It also saves NHS money by reducing skeletal consequential damage caused by walking like a penguin.I would recommend trying to get a referral to see if it can help you. The physios and engineers at Odstock are brilliant. We did try a 2 channel system to try to help with the hip hitch but sadly this was not successful. I now have upgraded to a wireless heel-switch which helps but I did have to pay for that bit privately. You may need to fight for funding or referral but you. can make a sound business case by explaining the other cost savings to the NHS
Hi Omar, I am not one for gadgets etc, it works for some just not me. I had my hips replaced a few years ago and started doing cycling exercises in the swimming pool, grab hold of the side of the pool and cycle in the water as if you are on a bike. The strength it gave me in my hips, legs and feet was fantastic. I carried on since my MS diagnosis and even though my walking is not great it has given me the strength and confidence that I won’t fall. It may help you too. I’m glad you have felt a difference on Tysabri, I start it in a couple of weeks time. All the very best Paul
Your post could almost have been written by me 3 years ago. Except that my walking ability didn’t come back as far as yours has on its own. I have foot drop on my right leg and trouble making the hip and knee do what they should on that side. Also left proprioception problems which means I don’t tend to know without looking what the left leg is doing (it’s sneaky and tries to trip me up by getting in the way of the right foot!).
Here’s a summary of what I’ve tried for the foot drop:
Neurodyn - this is a kind of foot brace made of stiffish nylony stuff that does up with Velcro. It’s hard to put on properly, kind of keeps the foot stable, does zero for hip and knee and ultimately is useless.
Foot-up - this is a device that has a velcroed strip that goes around your ankle and snaps into a matching plastic strip thing that goes into your shoe (held in place by shoe laces). This kind of works as it picks up your toes as you move your foot. It doesn’t help with hip hitching but it does a basic job. The elastic bit that goes between shoe and ankle strap doesn’t last though. They can be obtained via the NHS if you have a physiotherapist.
traditional orthotic (or AFO: Ankle, Foot, Orthotic) - this will stabilise your foot but they never worked for me, they are made of steel and / or plastic and aim to stabilise your foot. Again they don’t help the hip at all. I also found they always rubbed my foot in the wrong place. You can get referred to the orthotics department by your physiotherapist.
MSMate - this is a peculiar thing that goes round your shoe and is attached to your upper body with straps and elastic cord. It sort of works and isn’t too expensive. I used it for a while but found it made me walk stooped over so was not good for posture. Some people like them, google it for more info.
SAFO - this is a purpose made silicone AFO. A plaster cast is made of your foot and ankle and they make you SAFO to order. They’re not available on the NHS and cost about £900! They work in the sense of stabilising your foot and helping you to pick up your toes but again do nothing for your hip. They other thing is they are fairly bulky so will only fit in a couple of pairs of my shoes. I’ve used mine in a swimming / hydrotherapy pool. You can self refer to Dorset Orthopedics :http://www.dorset-ortho.com/orthotics/orthotic-products/safo/
FES - this is currently the best option. If you’re lucky, you can get the Odstock Pace on the NHS as Dr Geoff says. However, some local CCGs (replaced the PCT so are the purse holders for the NHS in your area) do not fund them. Mine does not fund them unless you are an exceptional case, and pretty much no one with MS is exceptional (because we are all different!). They work by stimulating the common perineal nerve that is the nerve that makes your toes pick up. They actually help with the hip and knee as well just a little bit, and in fact you can get a dual channel unit to stimulate either the hip or the knee although it’s a bigger getting electrodes in the correct place. I use mine all the time in the house for exercise (I can still only do about 10 metres a few times a day but still think it’s worth it). If you have to self fund, the Odstock variety costs £300 per appointment and you have to have 2 appointments initially, one 6 weeks later, one 6 months later and annually thereafter. This makes it expensive at first but now it costs me the equivalent of £25 per month. The wireless foot switch costs more (about another £300). There are other versions available. If you’re lucky enough to be seeing a neurologist at the National Hospital in Queens Square London, I think you can try out loads of variants of FES and they are all funded by the NHS. Otherwise, you have to be referred by a physio or doctor to an FES service that is funded by your CCG. Even if you self fund you still need a referral.
Best of luck finding a solution that works for you. If you can, get something to help the foot drop as soon as you can. It will help with your posture and balance and ultimately make the difference between being able to walk and not walk. I wasn’t given any of this information, had to find it all out myself and so I’ve only had the FES for a year. I’ve also had to self fund everything apart from one Foot-up device. There are of course other devices, you may need to search about. I’ve seen a couple of other things that work in a similar way to a foot-up.
I really think a good physiotherapist should be giving all of this info to someone with MS and foot drop.
I would suggest getting assessed by a decent physio and working on an exercise programme to help correct your gait. Do the exercises daily and you should see some improvement.
Having tried various aids to help drop foot, I agree with the other comments and find fes to be the most useful, not least because it can help to built muscle strength over time.
And, updating what I wrote (after a browse through the Odstock website looking for something else):
1 - They want you to be referred to to them first, and they will pass you on to a regional centre.
2 - You can be referred by a GP, now.
I totally agree. I forgot to put in my post that being assessed by a decent physiotherapist is essential. And regularly doing the exercises set by the physio. They can also refer you on to other services, like orthotics and of course FES clinics.
I have used a SAFO for 8 years now and it’s marvellous. I have been assessed for a FES more than once but unfortunately it didn’t help me at all.
the SAFO is easy to put on. Just put some talc on your foot, slip on the SAFO, link the 3 Velcro straps together and that’s it done for the whole day. Mine cost £750 so it’s not cheap. But in my opinion it’s well worth the Money as my walking is a 100 times better with the SAFO.
I used to see a NHS physio who helped a great deal. I got discharged so now I do the exercises which I’ve been given everyday.
The physio did refer me to a different team for a FES but that was ages ago. Can’t understand why it is taking so long. I can only assume that funding is problematic as I was told by the physio that funding can be an issue. I will chase up the matter on monday.
Thank you all for your insightful responses.
I suffer from random fatigue. I could be fine 1 hour and then totally fatigued the next, even if I haven’t done very much. I find that the fatigue also affects my mobility and balance. does anyone know of anything which will help my balance? exercise-wise