I swear I am in 2024 not 2402, but the way technology is moving does make me question sometimes. Although apparently, Functional Electrical Stimulation (FES) has been around for years, I just didn’t get referred until I made it to the complex adult clinic. Before the complex adult clinic, I was under the young adults clinic, and before them, I guess I was under the children’s clinic.
You’re digressing, Shannon, get to the point. What was it? Oh right, I’m now a cyborg. You know, part human, part machine. Kinda. I’m not permanently machine. But I do now have a machine attached to me that sends electricity to my leg. This is to encourage it to do the correct up and down movement with my foot which I cannot do unaided.
It’s the reason why the joining of my leg and my foot always hurt as my foot’s natural reaction is to not lift when it needs to, leaving me flatfooted. But on the 28th October, I went to an FES assessment to see if they can help me after the complex adult clinic referred me from one visit.
Throughout that assessment, my clinician kept muttering under her breath, cursing the other departments for not referring me sooner. It made me laugh, I think she was angrier about it than me.
So what happened at the FES appointment?
My clinician tried me with different electrodes on my leg. Most of the ones she tried were painful. Actually, all of them were, but the gel ones stopped hurting after awhile. She put these electrodes on my leg and got the machine to electrocute me, looking for the correct up and down movement. My foot doesn’t like to play ball. It kept trying to move inwards and up, or inwards and down. Rather than up and down.
However, after much trial and error, we figured the position of a little in and up/down was better than nothing. She gave me the device and told me to try it at home, so I did.
Here’s my foot moving up and down while the sticky electrodes electrocute me until my foot lifts. Here, I can see its not moving the way she wanted to but I had recorded this the first week. It’s still not perfect now, 2 months later, but it is better than what it was at the beginning.
What I have noticed from this is that I am no longer in pain. The bit where the foot and leg join (where it moves up and down) no longer hurts.
Knowing this now, I am with the clinician, why wasn’t I referred earlier?
Ah well, I am here now. I suppose that is the main thing that matters. And the fact that I already am noticing the benefits too. This isn’t where my cyborg journey stops though.
Walking with FES
On Friday, I had another FES appointment. My leg has gotten used to the gels so it doesn’t hurt anymore when I exercise with the device. So, my clinician decided to try me walking. It was weird for maybe a minute. All I could feel were the electrodes pulsing through my leg. But it didn’t hurt and after a few minutes, I didn’t feel it.
We quickly learned that my foot prefers the trigger beside my big toe, not on my heal. With that sorted out, I walked down their long corridor as a test. To begin with, we had the electrodes turned on. Then we turned them off. Walking the same length with the electrodes off, I almost stumbled, my brain already noticing a difference with the electrodes on.
I did too. I felt less steady, even though the electrodes were on for less than five minutes and I had been walking without them for 28 years. So now, the new step is to get used to walking with the device and the electrodes, starting 30 minutes each day in the home, and increasing to the outside. I can’t wait!
Still more FES!
I’ll be going back to the FES centre in February to see how I got on with my leg in walking and exercise mode. However, she wants to get my arm used to FES too which is likely to help with the shoulder pain I get. She did try getting my arm and wrist to play ball while I was there Friday but the appointment was 2 hours long and there were only twenty minutes left when we moved to my arm.
My wrist wanted to do any and every movement it could except the one that she was looking for without being restrained. When she found the movement by restraining certain muscles, she asked if I could try restrain them with my other hand. However my right hand has this nifty trick. Whatever movement my left hand does, it attempts to mirror it. So as I balled my left hand into a fist to restrain the muscles under my finger, my right hand mirrored and balled up too. No amount of electrodes could tell it what to do.
So, my next appointment will be looking more into my hand and arm, I think.
How it has made me feel since trying it
Pretty good, to be honest. I went in with an open mind, knowing it might not be something that would work for me. I think if it didn’t work, I would have been disappointed but would have moved on, knowing no different. However, before I went for the FES, I was constantly aware of the existence of my foot.
Kinda like the moment you notice the corner of your nose and once you notice it, it takes forever before it becomes ‘invisible’ to you once more. But with pain added on top. Baclofen helped manage the pain and take away the edge, but the pain never fully went away.
But since using the FES, there have been days where I have forgotten to take my Baclofen and it didn’t matter because I was no longer in pain. The FES device had exercised it away, targeting at the tight muscles that I couldn’t help even with normal exercise.
I’m looking forward to trying it on my hand and arm, but that may be one where it doesn’t work. We shall see. I’ll keep you updated either way.