How the mighty have fallen

Well not fallen as that would have been even worse.
Out trying to walk, not making a good job of it as in a fair bit of pain. Can’t work out if fes machine is helping or hindering.
Got to a certain point, not far and thought that I would stretch my ankle. Holding on to a metal railings, really bending backwards and forwards to try to ease the stiffness. Don’t think it helped really but the thought was there.

A kindly, frail lady of eighty something I would guess,may be older,wrapped up big time with coat,scarf and hat along with 2 small dogs appeared.
“Hi, are you ok, do you need any help?”

How kind of her. I wondered after if she thought I had somehow glued my hand to the railings.

How did the stroke survivor cross the road ?
Very slowly it turned out. It’s like playing chicken with a car a half mile away


@Nigelglos i get that completely. I daren’t cross a road without assistance. I often recall an occasion when I came out the dentist & a lady with a zimmer frame who was easily mid to late 80s got across the road & up the other side of the high street before I got off the pavement. It’s frustrating but i often laugh about it.

Well done on your walk though. FES didn’t work for me but I assume you have a follow up appointment where you can discuss your thoughts with them.


Crossing the road !. Have no physical problem just bit of vision. After three years felt confident enough to go on a bus journey. Out in sticks but walking distance from busy main road with bus stops and good shelters. So off I go my first trip necessitated crossing road, cock my head like thrush listening for worms, look left, look right and left again. All clear, pride myself with good hearing , so cat like I decide to make a dash for it. Screech of brakes from the right, annoyed driver gives me an earful. Did not anticipate a silent electric car :face_with_open_eyes_and_hand_over_mouth:. In early days was attached by toddlers harness to yank me out of path of on coming bikes, scooters and prams. Ten months on , it’s now the odd lapse of memory when in busy market towns when I forget Highway Code.


Hi, Nigel,
What’s up ? Stiff glutes? ankles swollen ? foot drop ?
I’ve played chicken, crossing the road. They stopped and waited for me to cross, but unfortunately that made me tense up as I hurried.
Today, my leg is full of spasms, and foot no better. Tough times, so… on my own initiative, I started some exercises for Gluteus Maximus, since my physio always works on my glute med, which is doing well. Boy, was my glute-max weak !!

ciao, Roland


It just wasn’t very good really,bit clumpy and some clonus in there. Foot had that burning sensation and my body I’m sure is thinking, whatever you do, don’t put weight on it.
Sometimes for whatever reason, like today, I think the two muscles for lifting my foot are not in tune with each and the effort needed is truly substantial, far and above what is normal. It just doesn’t make for smooth walking.

At home at other times, I can swing my arms like I am marching, head up, all looks ok.

Those muscles eh, is it just something to accept or something it’s possible to do something about ? It’s not like it’s broken all the time.


Strangely, on the back of the mirror therapy, I’m seeing people from the physio team twice this week and at least once a week after that for a bit. Feel a bit spoilt.
I find with the FES, you have to learn to walk with it. I have to learn to walk without it depending how my leg feels. All down to where the brain gives the impression of pain that day. Never the same place two days running.

Just not sure at the moment. Does it really help …


I never even got out the starting blocks with FES. All it did for me was turn my foot inwards but didn’t lift it.

Persevere for a while & see how it goes. If it’s not helping it’s worth trying without. Either way things take longer than we’d like on this recovery journey & I guess we just have to be patient. Something i’m not very good at.

Good luck with your appointments.


Hi Nigel,

yes, I’m getting clonus too in my lower leg. I almost welcome it, because then I can concentrate on total relaxation, and today I managed to “jinx” the clonus and make it stop. But it takes max effort.

yes, I also get components which seem to work against each other, and for the day, whatever it is, leg or arm, feels about twice as heavy. If I’m having acupuncture that can also “jinx” it, and I feel lighter again. Much lighter.

weight bearing ; recently my awareness of the skeleton has awakened. While putting weight on my leg is a challenge, at least I can now feel weight, and I’m sure my sensitivity is strengthening all the time.

I’m pretty sure you’ll make progress. I feel we have a lot in common, so if you’d ever like to compare notes, and have a zoom chat, please let me know !!

ciao, Roland


Would you be free wed afternoon?

I have been reading the thread on how your movement was restored. Interesting read.

The action I have been advised to use for clonus is to bend the knee and push down. It seems to work but is time limited. Obviously depends if you can do this.

I can’t help thinking recovery is almost limited by my own imagination. It must have taken months before I thought to see if I could put my weak arm behind my back. I couldn’t initially, wouldn’t go past my side.

May be only a few months ago to see if I could jump. Can I get down from the 2nd step on the stairs in one go. That’s a “step too far” at the moment. :grin:
Why would I want to, would like to go on the train and get off without the use of any ramp. Not every platform is a nice height.


Is 3 pm a good time tomorrow?
Yes, our minds & mood are paramount ; we’d get nowhere if we sulked all day
My physio has concentrated so much on glute-med, and I’ve not even looked into glute-max ; well I looked up a variety of exercises, and discovered 1) mine is super weak, so 2) why hadn’t I looked into this before? We must trust our instincts.

Interesting challenge ; I cannot do a jump, but my physio tried months back… I should try again now my proprioception is making a major comeback

Speak soon, ciao, Roland


I needed something to hold onto first time I tried it. Did I fully leave the ground. Mmm not sure. Gradually though it’s better but it’s not developed much. It’s one of those things…how did I ever do it in the past, it’s like your body forgets.
Bit like standing on tiptoes, how did I ever walk. Even harder with one weak leg.
I have got down from the 2nd step today. If I land on my good leg it seems ok.
As I understand it, you are supposed to leave your good leg on the step for the power to push off. However I think with my left leg/ankle being weak, I think I will do it the other way round as left ankle (presumably not used to the force) is aching after one attempt.


If the muscles in your foot are burning, it’s muscle fatigue and I’d say that’s a good thing. Your foot is now unaccustomed to walking normally. You’re working those muscle now aren’t you.

And you can’t possibly compare it to walking around the house, that’s a totally different terrain and too short for the muscle to even build up a burn.
It’s the same when you buy shoes, in the shop they’ll feel fine and comfy…until you get outside and start walking in them. Then you find they’re too stiff, blister your heals, too tight in the toes, etc, and need breaking in…your legs can even feel fatigued in them because they’re stiff.

If that is what it is, then it will get easier the more you walk with the fes on. Don’t forget you will have muscle wastage even in your foot, since your stroke from lack of walking normally. If it is muscle exertion then there’s no reason to believe it won’t wear off time with persistence and perseverance :wink:

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Unfortunately EE, it’s the electrical burning of the central post stroke pain rather than the nice warm glow that you get from exercise.

More like a sunburnt face with more sun on it rather than that cosy tired feeling.
And just for a laugh, having presumably noticed the foot has been triggered, the wrist, biceps and face think it’s rude not to join in with the sunburn feeling.
Once triggered, it might be there for an hour or more.

I am not quite sure how I have stayed positive. At its worst it’s utterly miserable.


Ooh now that doesn’t sound nice at. I know this may sound stupid and I know you’re not actually burnt :laughing: But maybe just try an icepack on it to see how it might react or maybe improve it. Just try resting your foot on a bag of frozen peas or something, on and off for half an hour maybe. You never know, it might sooth it for a time.

I have found EE that another sensation does help, just a touch can help. Perhaps it’s the old brush away pain. Unfortunately two things make it worse, stress and cold. My skin has gone hyper sensitive and just the wind across it is irritating.
Walking up my drive the other day and it started to rain. It was as painful as having a pin stuck in me as each drop hit. Not had that before.

Being told “you will just need to learn to live with it”. That is a difficult message to receive. I just sat there a bit in disbelief but I know it’s true.

This is going to be some challenge. I guess you can get used to anything if it plateaus out. If …

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That’s so evocative :slight_smile:

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Sounds like the electrodes were not placed in the right locations then and were activating muscles…

If you still have a need you could try again and get someone to show you the right place for the electrodes to activate the correct muscles and not the incorrect ones



You seem to be going from strength the strength of the moment with small changes that are all adding up :slight_smile:
I know you’ve still got challenges but the things you talk about as having woken up are the beginnings by the spring bulbs pushing through the soil to reveal the promise of later flowering :slight_smile:

I’m getting colonus in my wrist when I try and move my fingers particularly extending them and my wrist the same time - that’s the most difficult barrier to break I’ve been working on it for a while seemingly without visible progress…YET…


Wow that sucks :disappointed:
I guess to learn to live with it messages hard I was going to say truthful but it’s actually rather dismissive and something more useful might be to suggest the strategies to be tried or has to be endured such as distractions etc

Who knew! No more than three posts allowed in a row from the same person!!

I’ve had various opinions on my clonus in the past. There is a stop/start motion I do with my arm which looks a bit like clonus, but one senior physio said it was a movement my brain was doing on purpose to assess the position of my arm in space. Since the big comeback of my proprioception, my arm movement has indeed become smoother without the need for the stop / start pattern. Clonus in my leg has definitely been with me for some time, though what triggers it is a little different now, plus with muscle relaxation, I can control it, and stop the vibration in about 20 seconds.

Thanks for the encouragement, Simon, speak later


Not sure I know the meaning of FES ?.??? … I find abbreviations sooo difficult x