The physiotherapist I saw in December at my three monthly fampridine review referred me to try FES. FES (functional electrical stimulation) is used a lot with MS patients or those who’ve suffered strokes, and applies electrical signals to stimulate the nerves in the leg, so that the foot muscles contract and lift. The logic is that although nerve signals don’t fire from my spine due to central nerve damage, the peroneal nerve along my leg works and can be triggered further down. I definitely suffer from foot drop, that is my toes sticking to the floor and blocking my foot from swinging forwards, and I compensated with weird swinging hip movements to kick my leg out sidewards, so FES prevents that.
The fact I was even referred to try it is really exciting, but I’m definitely at the less mobile end of those at the clinic. On the afternoon of my second visit to the hospital I was too fatigued to even stand up at the frame, and I think the therapist was wondering how I got there…
It is a massive hassle to set up, sticking the electrodes to your legs (I’m still drawing their positions onto my skin as half a centimetre move kicks my foot in a different direction). I’ve bought a bumbag to hold the power box in (luckily they’re in fashion and asos have loads), and the foot sensors are stuck in one pair of my traniers, which don’t go with every outfit. All the wiring fits fine under loose bottoms but I don’t think skinny jeans would be an option (I’m sure it could all be bluetooth…). Each electrical signal for each foot lift is a tangible buzz to my legs which is a weird feeling. But of course, if I was walking again, even with crutches or a frame, it’d be worth it, and make moving around friends’ homes or going to any bar/hotel with steps or non disabled loos so much less complicated.
It’s been three weeks, and it’s really hard. I arranged to cut my hours at work to 2.5 days a week during two months to allow myself time to trial it. After work I’m often too fatigued to eat, let alone try walking. I thought two months would be plenty of time; maybe I’m impatient or maybe it’s not going to happen, but I’m only managing a few short walks around the house about three times a week. It’s exhausting. I’ve been so tired which then knocks on to the next day at work where, come 3pm, I can barely type and have had a fall in the office whilst transferring chairs (everyone else was more alarmed than me). It’s still early days and hopefully I’ll get past this but it’s pretty counter intuitive. Walking is easier for sure, but it’s not easy, there are other issues like stiffness in my hips and weakness in my core that hinder me beyond the foot drop.
The FES will not fix the damage in my spine or allow me to walk freely again, but being upright even a little strengthens and stretches you. After I walk my feet feel so much looser, they’re less puffy, and the most dramatic change is the reduction in clonus (legs shaking).
I’m going back for my review in two weeks – each power box has a memory, like a fitbit or phone, so my physio will be able to see my use and whether it merits continuing the treatment. Even if it is, I then need to make a call on whether the positives outweight the negatives here. The only constant of MS is difficulty. The FES is no smooth fix but for now I’m giving it a go.