Thursday, 10 May 2018

Guest post: FES and the #ThinkHand campaign

Back in the day I had RRMS, now I have advanced MS. A common problem of this disease is dropped foot, the inability to lift the foot when walking, it get progressively worse and worse. It is usually the front of the foot or the toe of the shoe that catches on the ground. I stopped walking the dog in 2004 when walking several miles in woodland was too tiring but in about 2005 dropped foot became a serious issue. Just walking on the pavements I would fall over and suddenly I’m flat on my face and it hurt me. Not something I would recommend.



Walking, what is the problem?

Before my body was affected with MS tripping over uneven paving stones or struggle to walk up steps never happened. Then dropped foot began, my brain was still sending the signal to my muscles to lift the foot. Unfortunately the impulse was not reaching the nerve between the spinal cord and the muscle plus fatigue and time only made the problem worse. Now I couldn’t lift my foot up properly so I tripped up, fell over and felt really stupid.

The beginning

I remember getting my shoes resoled and the toe of the sole on my left shoe was worn away I think this was three years after my diagnosis in 1995. I didn't think this at all strange at the time. A few years later I was starting to trip and fall over and the frequency increased . I tried using a Foot-Up but it didn't really help me and a walking stick was no use. Now I was an occasional faller

One evening in 2006

The Wife was surfing the Internet and found something called a MuSmate. It looked ideal so we bought it. It was great and helped me to stay on my feet and not fall over for about eight years. It’s incredibly simple just an elastic cord between the waist and the shoe. When you swing the foot forward it lifts the toe clear of the ground.

2014 I was still walking

The MS was getting worse, I had taken medical retirement. Now I was an accident waiting to happen, I was vertically challenged or a frequent faller. An incredibly kind consultant referred me to Queen Square walking clinic where I was loaned a single channel Functional Electrical Stimulation (FES) to try out. Wow, my muscles were lifting my foot and I was not relying on a mechanical device. It was quickly changed to a dual channel because two muscles needed stimulating. This was even better, I liked it.

When I first started to use the FES I suffered terrible back ache in the lower spine for a few days. I am quite sure this was because I was now using muscles that I did not use with the MuSmate. Muscles were now being stimulated by the FES that had not been used with the MuSmate.



Pros and cons of an FES

The FES makes walking possible for me. It does not resolve my Hyper Extending knee or significantly help my balance. Okay, I walk slowly but at least I can still walk. You can see me most days pushing a trolley around a supermarket. Using the FES means I can even walk 1K. It's slow, tortuous and takes me 45 minutes.

It is a bit of faff to take the electrodes for the FES off each night and put them on in the morning but hey where would I be without it? It is old technology, a bit clunky but it’s unobtrusive, keeps me walking and active. What is there not to like about it?

These solutions will not work for everyone. They do improve my quality of life. That is what living with MS is all about.

#ThinkHand campaign

The FES illustrates the importance of the #ThinkHand campaign; if I cannot use my hands then I am unable to fit the FES so that I can walk. Also if I cannot grip with my hands then I cannot use a rollator or 2 wheeled walker which is essential to stop me falling over when I walk.

By Patrick Burke

3 comments:

  1. Great Great post

    Thank so much to share

    All the best to you

    Obrigado

    ReplyDelete
  2. Absolutely spot-on description of the usefulness of FES for the mobility challenged EDSS 4-6 folks. I had my first wheelchair lined up in 2012 when a change in legislation allowed me to request insurance coverage for FES. I successfully applied and have been a happy user ever since. Wheelchair is meanwhile collecting dust in the basement...

    My only other assistive device is a walking stick for longer distances. So everyday walking around gives me a good workout and practice in keeping balance. Couldn’t have asked for a better physical therapy. Actually feel as my condition is improving over the years.

    Now I understand that FES doesn’t work for everyone and that it would - at best - only represent one building block in any treatment regime. However, looking back over the years, FES appears to me to be receiving far too little coverage for the potential positive impact that it can have for some of us.

    Please give such FES success stories more space as they are inspirational and actually attainable for many.

    ReplyDelete
  3. Thanks for a great post Patrick - completely agree about the importance of the #ThinkHand campaign for things like this.

    You can also use some FES machines in "training mode" to work and strength muscles in other parts of your body, as you can with NMES machines. For some this might be a good way of working out muscles in other parts of your body to keep them in action. I've not used this on my arms but I routinely use one on my lumbar region to maintain core strength and because this is where I get a back ache when I overexert myself - pity there were no instructions on how to do this so it was trial and error for me.

    I too use FES, on both feet, but find through the day it becomes less progressively less effective and I have to crank up the power until it gets unbearable or muscles become non-responsive. That's when I swap into a pair of orthotics supports (blue rocker) that are probably something like your old Foot-Up but made with a modern carbon-fibre technology. To understand blue rocker technology, think of Oscar Pistorius's blades but without having to lose your feet (you also don't need a history of gun crime!). When the muscles that you use for FES don't respond, these do the job. They take a bit of getting used to and result in a somewhat modified gait, but they are relatively easy to put on with velcro straps. They fit into your existing shoes, as long as there is a little room left. They are certainly much easier to put on that placing FES electrodes in the right spot, running wires, and fiddling with small controls, and having wires pop out during the day leaving you stranded mid-stride.

    Blue rockers are probably quite expensive but (fortunately) I got mine in the UK from the NHS with my MS nurse or physio making an orthotics referral. Probably worth a try for those who have foot drop, don't have FES or don't find FES to be effective for them. Hopefully someone finds this information useful.

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