First time contributor

@pando wow that’s some BP reading but pleased to see it’s back settled in a normal range now.

@SimonInEdinburgh great to hear your hand is improving. Slow & steady progress is better than no progress. I hope the pen & knife holding are soon possible. I was lucky to get my hand movement back in first few months I reslky didn’t like my hubby cutting my food up for me…but needs must at times. Jow, if only my leg would behave :thinking:

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Oh dear @Mrs5K
You’re “in the wars” as my mum used to say with your shoulder & leg! :frowning:

How’s the shoulder doing? and what stage is your leg at and what exercise regime are you using?

And @pando
How’s your shoulder ‘pain’/ awareness
:slight_smile:

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Who are you asking , Simon ?

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@SimonInEdinburgh definitely going through it a bit but then isnt everyone. My shoulder has been more painful than usual today. Am persevering with my exercises & patiently waiting my physio appointment to come through. My GP prescribed me some diclofenic gel so that’s helping with the pain. My shoulder does make a lot of noise these days :grin:

As for my leg i’m no further forward than I was 12 months ago but the issues aren’t all from my stroke. I have FND too. My foot does not lift off the floor nor will my leg lift if I’m lying down. My hubby helps me with lifting it as part of my exercise routine & I try & practice marching daily. Although marching is difficult when your foot won’t leave the floor. It’s hard fitting it in with work too.

Like you & everyone else we’re all just trying our hardest to get back what we’ve lost. It’s frustrating at times but we’ll all never give up.

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Thx for asking, Simon.

My shoulder is doing great since I was able to feel weight in it 10 days ago. It has enabled me to increase strength, and I can feel a small amount of improvement in proprioception.

My test for that is

  1. close my eyes
  2. get my wife to move my hand about an inch horizontally or vertically
  3. I guess which in axis she moved it
    The result is all correct now but it was random guesswork all the way 1 month ago.

My leg was super locked today, because I did some “upside down cycling” lying on my back on Friday with my physio for the first time. I overdid it… (I always do when physio comes) especially for a first time. My Chinese Dr. says I will be better next time I try…

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I used diclofenac gel and it did help
Although I was worried about the warnings for strokeWarriors even from nsia gel I was also amazed at how quickly the pains receded once I had a hands-on person to manipulate it with knowledge

He put one hand on the top of the shoulder and held my elbow and moved the joint in circular mtions in the shoulder - he only had to do it twice over 3 weeks and it was 90% fixed .

I do hope the same is true for you

It does still click and pop quite a lot when I attempt movements that aren’t in the range of the shortest closest to the body movements. I’m still working on being able to extend it fully with strength and speed still areas of needed improvement

I guess you work from home? Either way challenges with your leg around significant. Do you have any suspicion/confirmation that there is a link between head and foot/ leg? Because that lack of connection was what I felt for my hand for 2½yrs - now progress is deffo visible in the last 2 weeks. Suspicion that there was a conversation that was invisible started a few weeks maybe a couple of months ago so long periods of shouting into the darkness finally heard the faintest echo and then now I definitely a conversation going on

Yes we’re all battling - #strokeWarriors. The extra challenge is " how do we make this forum the most supportive it can be? there is still masses of unrealised potential to be both discussed and acted upon - we need an open ear :hear_with_hearing_aid: in the right quarter…"
Ciao
Simon

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that’s great news!!

The real message for everybody but you and I in this thread - and particularly for the people who earn a living fixing these challenges and make pronouncements about plateaus and first 6 months
Is
That It takes a lot of effort to get the first 1%. And while that 1% is being earned there is no feedback no confirmation that the path is correct no reward from dopamine or serotonin and no guarantee that the investment of effort time energy belief mental health will pay off.

And then when it does there is so much reward.

There must be tens of thousands if not millions of post stroke lives blighted by physiotherapists churning their lists by telling their customers “thanks for your money sorry I haven’t delivered anything It’s your fault cuz your body can’t be repaired” - I have a particular annoyance where they’re telling me their services are free when in fact I’ve paid for them my whole adult life whether I’ve used them or not but because of that indirect payment route our ability to hold them to account is so weak.

fantastic milestone

But poststroke life has many more for you to best until you are stroking that violin. Is the flight of the bumblebees on your goal list?
:slight_smile:
Ciao
Simon

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but there was some connection, and you could move your hand, correct?
(so it wasn’t all locked up, as in contracture & spasticity, correct?)

even so, the news of your recent progress with your arm is exciting and a testament to your “young” problem-solving brain.

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Thank you Simon,

fantastic news about my shoulder, but I am wishing for more, so much more particularly with my leg. Yesterday, my Chinese Dr. said to my wife that I will walk normally / let’s say without a stick. He didn’t specify when exactly, but I like the way he commits to this statement. I’d like to know how it’s going to happen, but, the fact that he boldly makes such a statement really helps me have faith in my recovery. Nobody else dares to make such a claim in case they’re wrong, and here I have someone going out on a limb, confidently making a bold prediction.

ciao, Roland

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Neil, hello

I was thinking about you last night as I went upstairs to bed. My leg (and arm) were as tired and heavy as can be. Of course it’s happened 100 times before, so nothing new. When lifting my arm, for example, (but same for leg) it feels like someone is hanging on to my sleeve, weighing my arm down. In the morning it resets to normal. So first question ; does your heaviness happen towards the end of the day, generally ?

Next, there’s a little test / game I like to play with regards heaviness in the leg. I hang on to the base of my banister to make my balance firm. Then just standing still I empty my mind. Empty it of all clutter and doubts. Then while thinking of something quite random and unrelated (let’s call it porridge) I lift up my leg quite freely and suddenly. If the preparation went well, and the brain well distracted by porridge, chances are that the leg pops up quickly with a feeling of complete lightness. This will surprise you. Try it a few times. The more you can empty your mind and forget the struggle to lift it, the lighter it will feel.

At least, this works for me, until I actually have to climb the stairs; then the heaviness comes back. But if I stop to think of porridge halfway up the stairs it lightens the load. Let me know if the porridge trick works for you (even if it is just for a moment)

Good luck, ciao, Roland

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I believe you’ll walk normally without a stick at some point. I don’t know when that will be, but you will indeed. Every day is a drop in the bucket - just remember that. And, I also believe that many of your muscle issues, etc. will improve a lot over time.

You always say that you admire my caregiving qualities. Well, I’m here to say that I admire your determination to get better. It’s mind-blowing. “Mind over matter” is your motto.

All is well, getting better. HAOLA!

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I certainly do ; I just phoned my Sister and mentioned you (she lives in Sardinia) saying that you had made such an impression on me. That goes for a lot of people on this Forum

Ciao, Roland

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I asked the GP about the gel & blood thinners & he said it was ok as it didn’t work in same way as tablets. Am going with it as need the pain relief particularly at night time. I’m hoping thwy can sort my shoulder as swiftly as yours. That’d be great.

Yes, i mainly work from home with occasional office day. My leg issues affect pretty much everything I do as have to drag it everywhere. I keep the shoe shops in business though as put many holes in the soles :rofl:

They tell me the signals from my brain are coming through scrambled. If you think there is a lack if stroke care it has nothing on FND. I was told I have FND & given a website to look at. And that is where the care / treatment started & finished.

In the meantime I just keep plugging away in the hope that my brain finally unscrambles its messages.

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Were you speaking in Italian?

Why aren’t you living in Sardinia? :wink:

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I was speaking Britalian (English + Italian)
but I am fluent in Italiano, having lived there 20 years, where I met my Italian wife Simonetta
We moved to England 25 years ago to continue our career as music teachers. Previously we were concert players in orchestras, quartets (we met playing in a quartet) , and solo work.

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That is awesome that you speak Italian.

Now, I understand why you have Italian in-laws. People live really old there - I mean really, really old. I’m sure you know this!!

My father’s aunt shoveled snow and mowed grass at 96 (she wasn’t Italian). She was only in the hospital one time - to have her son. She fell and hit her had at 99 (brain bleed). Her mind went after that. She died at almost 101.

I love studying foreign languages. I speak French fluently. That’s what I studied at university. I also study Spanish, Russian, Mandarin, Turkish, and German.

I love classical music!

Have you ever heard Hania Rani play the piano? Her piece called “Baku”?

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