FES and me
Open Door - February 2007 pages 12-13
I had my first MS episode on 5 May 1980. After two years of medication I continued to lead a normal life for the next seventeen years. Then in 1997, things started to go wrong with my body.
It started with my left leg snapping back as I walked. It only happened when I had worked too hard, been walking a lot or just got tired. I started falling over quite often and it got to a stage where I was injuring myself quite badly. Eventually I started to use a wheelchair for my own safety.
Strange as is seems; it was my diabetes doctor (I also have rheumatoid arthritis) who referred me to the Walton Centre, a specialist neurological hospital in Liverpool, where tests were done to check my nerves were OK. These tests showed I might be a suitable candidate for a treatment called FES (functional electrical stimulation), which at the time was only available in Salisbury and Birmingham.
From the time I had the tests until the time I went to Birmingham, two years had gone, and so consequently had most of the muscles in my left leg. By now it was just skin and bone as I didn't really have a chance of building it up. I had two walking sticks, the kind that go round your arms. I'd had a great start with them when I put them on back to front. If my daughter hadn't been there I would have launched myself. We had a laugh then tried again.
At Birmingham I saw an MS physiotherapist called Christine Singleton and was tested to see if the FES would work on me. She wasn't sure owing to all the other things wrong with me but it was decided I could have the FES on a trial basis for three months.
The 'earth shattering' experience I was expecting didn't immediately happen but there was definitely something there. Then about two weeks later - after a labour of love from my wife and two daughters, who sat in front of me taking the pads on and off my leg in different positions - something finally happened. My foot came straight up. Before that my foot had been going to the side and I was virtually walking on my ankle. I put permanent marker around the outside of the pads so as not to forget where they went. It was quite nerve-racking really when I lifted my left heel off the floor. For the first time in two years my left foot lifted up. We all had tears in our eyes. I had waited two years for this moment and now it was here.
As the weeks passed I got better at walking and the pads went on the same place every time. I went back to see Christine three months later. I sat down and took my pads off so she could see me put them on again. The marks round the pads were gone - I had been very brave one day and wiped them off (after taking a digital photo of them). I stood up and walked dead straight for ten metres; I didn't see a tear from Christine but she was so pleased.
Christine contacted me several months later to ask if I would do a demonstration for some physiotherapists at Birmingham. It was my way of giving something back for what I had gained. I went on to do quite a few demonstrations in the North West, where I live. I remember one for the MS physiotherapist at The Walton Centre. It was in a proper auditorium where the seats cascaded down from the back of the hall and there was a stage and about 250 people watching me. At the end of the demonstration everybody applauded. On the way to my car in the pouring rain, consultants and physios were stopping me and saying it was excellent to actually see a patient using the equipment they usually only saw in a book.
I have used my FES now for about seven years, from 8 in the morning to around 11 at night. At a recent meeting, Christine looked at the position of my pads and commented on the condition of the skin with absolutely no irritation and couldn't believe the muscles on my left leg.
I have made a film about the FES and also discuss it in my autogiography. I am trying to let as many people as possible know about the treatment so other people might have the chance I had - and to hopefully bring the waiting time down from two years. I got out of a wheelchair and walked again. It is an unfortunate fact that not everyone will be as lucky as me but have at least got to be given the chance to try it.
What is functional electrical stimulation (FES)?
FES uses small electrical impulses to trigger nerves, producing basic but useful movement. Self-adhesive electrodes are placed on the skin and connected to a small stimulator. The impulse, activated by a pressure sensitive switch in the shoe, causes the foot to tilt to the correct angle when lifted. When the foot is placed on the ground again, pressure is reapplied to the switch and the stimulation ceases.
Who may benefit from FES?
The most commonly treated problem is dropped foot - the inability to properly raise the foot when walking. As FES applies stimulation along the existing nerves, the nerve fibres between the spinal cord and the muscles they supply must be undamaged. In practice this means that the individual needs to be able to walk, even if only a few metres with a stick or crutch.
The MS Trust has funded two research trials at Salisbury District Hospital. The first investigated the effect of FES on walking and quality of life. It found that FES is effective in improving walking, particularly in enabling greater distance to be achieved. The results have been submitted for publication in a peer reviewed journal.
A second study is looking at quality of movement as well as speed and effort of walking. This study is also comparing the combination of physiotherapy and FES with the effects of either treatment in isolation.
How do people get FES treatment?
An increasing number of centres are offering FES. Odstock Medical Limited, the company that was formed by the department at Salisbury that developed the treatment, has a map of UK centres on their website . Alternatively, phone 01722 429065 or email firstname.lastname@example.org.