One of the symptoms I’m suffering with my Foot drop is that I’m falling and that’s putting me at risk. Anyone else recommend ways for me to help myself with this. I’ve fell today, thankfully I’m on a day off work but I’ve really upset myself over it as I know it’s not going to be the last. Any help or reassurance appreciated. Thanks.
I assume you have been diagnosed with MS? And that someone (neurologist or physiotherapist) has looked at your foot-drop?
If so, you could be referred to your NHS Orthotics Department. They could provide you with an AFO (ankle foot orthosis). This would keep your foot in the correct position for safe walking.
Alternatively, you could ask your physiotherapist (if you have one) or neurologist if you could get a Functional Electrical Stimulation (FES) device. It will depend on whether your Clinical Commissioning Group (the CCGs replaces the old PCTs for administering NHS services on a local level) have a policy of funding FES. The guidance from NICE is that basically, they don’t have to, they should not exclude entire groups of people, but in practice, some CCGs virtually do exclude people with MS caused foot-drop from FES funding.
But, you need to discuss options with someone who can refer you on to an appropriate source of assistance. So, maybe your GP, neurologist, physiotherapist, community neurological team, rehab specialist doctor or OT.
Sue
Yes, in diagnosed with MS hence the posting on MS society. I’m due for review with my Neuro next week. I had raised it with my MS nurse about seeing a physio but there seems to be a long waiting list in this area. But she, like you, recommended asking my Neuro too. She also suggested discussing a prescription for the spasms I’m struggling with too. To sit alongside the DMD I’m on. I’m not classified with either RRMS or PMS as it presents as PMS but my Neuro is using an episode of vertigo that I told him about that I suffered with 15 years ago to treat that as a relapse to enable me to recieve DMDs.
I wasn’t being disingenuous when I asked if you were diagnosed. Many people do post on here when they’ve not been diagnosed with MS, nor had their foot-drop accepted as such by anyone professional. Sorry if you thought I was being a bit quizzical in asking.
If you are having spasms then many people do take drugs such as Baclofen or Dantrium alongside their DMDs.
The whole ‘labelling’ us as RR/SP/PP/RP is very questionable. It’s pretty good that at least your neurologist is hedging his/her bets re the relapsing thing and getting you a DMD to beat off any relapses.
With regard to the foot-drop, you could just ask your GP or neurologist to refer you. The best thing would be to an FES clinic but that’s a bit difficult as it depends where you are based as to where the doctor could refer you, but it is the best option. You could have a look at http://www.odstockmedical.com/ and give them a call. If you’re not within reach of Salisbury (where they are based) they could tell you where they have clinics. Odstock is typically what the NHS will pay for (when they do agree to pay at all).
The alternative to an FES clinic is referral by your GP or neurologist to the hospital orthotics department. You could do that regardless of investigating FES.
It’s a strange thing, but knowing that people with MS often get foot-drop, once it’s noted that you have it, no one seems very keen on helping you to find a solution to it! Or that’s been my experience. It’s all been up to me.
Best of luck.
Sue
Hello
I am so sorry to hear you have fallen
One thing you must not do is fall again.
I have foot drop which causes my left toes to catch the floor and I stumble.
Tried and bought most of the appliances and attended all the physio but all ineffective for me.
Do not know anything about yourself.
I suggest you buy a 3 wheel walker until you get yourself sorted they are fairly cheap on the internet
This may seem desperate but you cannot afford to keep falling, as it takes days to recover and causes severe harm to your body.
Bertie
I have foot drop too. I went to orthotics and got a support you put in your shoe and around your ankle. Also I now use 2 sticks instead of one if I’m not using my wheelchair. It keeps me much more stable. My balance is awful
I found crutches were better than sticks for stability when I was walking properly (ish, with foot drop and terrible balance etc!). They provide better support and if you’re out and about, you’re less likely to drop one then fall over trying to pick it up.
I used a foot-up: Foot-Up | Foot Drop Brace | Össur UK (which I think is what you’re talking about Snowman) for quite a while before getting the FES, and my recent miracle ‘almost cure’ for foot drop (suddenly I can almost pick up my toes on the foot-drop foot - after over 7 years! Hallelujah! Nearly!).
I’ve also got a Boxia: BOXIA A.F.O. DROP FOOT | Orliman which my physio got for me recently, because I’d got a problem with my FES and had to get it fixed, so wanted a back up. It actually works better than a foot-up.
Sue
The boxia works well for me. This time last year my confidence was so low walking outside because of footdrop and the thought I could trip at anytime. I am convinced the boxia and a crutch has kept me out of full time wheelchair use.
The only downside is you have to wear shoes with laces but that’s a small price to pay.
Thanks to Hotter I have a few pairs of lace up shoes and I love my pair of lace up winter boots.
Mags xx
Reaĺly appreciate these links guys. Im seeing my consultant with my wife this week and feel having this info so I can ask will help. The tripping because I can’t lift the one foot has caused me alot of anxiety and I’m very laid back man. I’m really grateful for your insights because the idea of keep face planting concrete is horrid. My sore knees have recovered from the other day. I’m still walking unaided but that’s becoming increasingly harder.
I feel your pain. I also was a laid back person and the anxiety of going out was awful. The boxia has really helped but beware it’s not a cure all. I can’t walk any further but I can walk safely.
Have you had physio? The exercises I got really do help also in my area there is a gym and once a week they have a session especially for people with ms. I can’t go to this because I am working that day, which is a shame as the equipment is all rehab especially the bike. My legs felt so good for a while after I used it.
The thing is you are not automatically referred to any of these things. If you have a ms nurse they can point you in the right direction.
Mags xx
Falling is horrid and best avoided. Foot drop is bloody irritating and vastly increases the likelihood of falling. If as stated above you can get help with appropriate FES or physio or devices this will help. One thing you can do for yourself requires quite a bit of energy is rather than walk as you did prior to MS i.e automatically and with no conscious thought or effort, you can reduce trips and consequent falls by employing your conscious brain to help you walk with a bit more safety. i dont mean to sound silly, but it took me a while to work this out and then i had to understand just how tiring it is to stay upright, so my energy management needed adapting too.
good luck
mick
That doesn’t sound silly at all. If anything it’s how I’ve been describing how I go about walking now. It’s as if I need to think, right lift your leg up, yes keep going, etc. Its a conscious thought process and exhausting. Although I’m still on my feet I’ve had to slow down my pace consciously too even when I feel steady because the act of doing the actual walking wears me and then that’s when I feel more prone to going over. I want to stay on my own feet for as long as possible as it will impact work otherwise. Thanks for reassuring me, it’s good to know although everyone’s different that someone somewhere gets it and how daunting it all is.
Sue I’m guessing for the FES there has to be lots of wires! Do you manage to hide them all? I’ve been sent some info on it. It does seem very good.
sorry to butt in, there are wires between the heel switch and the FES unit but these can be managed OK OR there is a more expensive wireless version. You still need wires from the FES unit to the stimulating electrodes but these can be short. I think there are some systems whereby a cuff is worn to reduce wiring and ultimately I think there may be surgical implants available.
Mick
Hi
For the Odstock ‘Pace’ FES, there is a box that gets hooked onto your waistband. From the box there are usually two wires. One wire connects to a pair of electrode pads just below your knee. The second wire goes down to a foot switch attached to a removable insole in your shoe.
There is a wireless version, that means you still have the electrodes and wire attached to the box, but there’s no need for the second wire as the signal is transmitted wirelessly to the Pace box. As Mick says, this costs extra, if you are funded by the NHS, you’d have to pay for the upgrade. And if you are a private patient, then it costs extra.
There is also a version that attaches to just below the knee, so there’s no waist box or wires, everything is contained in a below the knee leg cuff. Again, I imagine this costs extra. The leg cuff looks quite bulky too, so I’m not sure how user friendly it is. Plus, to switch the unit on and off, you’d have to be able to reach your knee, under your clothes (all without falling over!)
I just use the basic system. I did have a wireless footswitch, but the thing broke and I didn’t see the value in replacing it.
When you are used to the placement of the electrodes and using the equipment, it’s not a problem. And it does help with picking up your foot, so enabling walking much better than a Foot-up, Boxia or orthotic.
The only real problem I’ve ever had was that once the Pace box came unclipped from my waist when I went to pull my trews down to use the loo. The Pace box nosedived straight into the loo! I had to phone the company and confess, then send the box back to them for ‘decontamination’ and fixing! Embarrassing. I thought I couldn’t be the only person this had ever happened to, but they sounded really surprised. So maybe I’m the only clumsy idiot!!
It’s definitely worth looking into.
Sue
Thanks Sue, your insight and information has helped a great deal.
Thank you Sue. That’s really helpful. You’ve left a real picture in my head now! Made me laugh! Might include the idea in a future poem!
Hello again all. I’ve seen my consultant again. Along with my DMD that I’m on, they’re starting me on Baclofen. He’s resent for an appointment with physio and asked that I chase from the other side. He suggested a foot cuff that attaches to laces. I’ve looked online but I don’t want to pay the earth, can anyone recommend somewhere that’s a reasonable price whilst I wait? Many Thanks folks.
I have a foot cuff I don’t use, because I use a leg brace. You can have mine. It’s new, never used it.