Learning to use your limbs again

[JayKay]

My sister-in-law switched me on to this blog after my SAH - the author is a University Professor who had a stroke earlier this year. She writes so well, and this recent post is particularly interesting because it describes what it is like to learn to use your arm and leg again. Fascinating!!

[zoe1zoe1zoe1]

Thank you for sharing this article. Rich has left sided paralysis so it is nice to read about how he could be feeling and what he is going through.

[Tina]

Thanks Jen...very interesting article xx

[blueday]

JayKay….many thanks for your discovery and your observation.

Many thanks as I read it as I am moderately paralysed too. I think physically as far as arms and legs are concerned you are fine, so thanks for sharing and thinking about us.

I used to call you the 'Journalist on the Spot' now I see I should change it.

With Aphasia I cannot remember names easily so I do it by association to help me.

Journalist on the Spot....BTG.....Jaykay........Jen, but maybe it's not accurate.

The Photographer...BTG....JayKay... Jen.

More accurate because as your father said "You have a good eye"....means you spot things which others may miss, observant, paint a picture for us to see. So thanks for spotting that article, taking a picture of it in words for us to see it, to share.

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[momo]

Thanks for this Jen, quite fascinating reading....keep up the good work.

[JayKay]

Aw Blueday - thank you I know, I've been lucky and don't have probs with my limbs but I know some of you do, and of course my mum went through it after her stroke, although she is using her right arm and leg ok now.

Yes, it's very interesting to have someone's perspective, who is very articulate and who can make us realise what it is like. Glad to have helped

[blueday]

Yes this can be quite common at certain times.

I am semi-paraplegic mainly with my right leg and arm.

The frustration for the patient as you start to recover, the question is why is this. I am my own patient now, I know for sure my leg and arm is fine. I was a runner and a footballer (no surprise then). So why is walking difficult? The word paralysis indicates a problem with my leg and gait (walking style). There is nothing wrong with it...the tool I have misplaced is in my brain. So I don't work on my leg, I work on my brain.

I had good success recovering my arm very well... when you 'think' about your fingers and hand and arm you become more complete. The downside is fatigue.

Working on my leg is another challenge.... my mini mountain.

As we always say we are all individual people. All our strokes and SAH are exactly that totally individual. I'm sure a lot of our team have no problems with mobility or arms and legs...some mild....some worse. I can guarantee that if you have the desire, we will all be dancing again, its just an awakening.

Dr. Stephen Silberstein M.D

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[blueday]

To assist walking and increase mobility some require Braces or Calipers.

I still have to wait for my Caliper as to prepare it takes a long time.

I don't want to criticise the Medical people...but, as we know people make mistakes. To see someone, make an appointment, wait weeks for it and it takes weeks again before anything happens.Tieing the Doctors with the Orthotics together....takes weeks. You see how time marches on before you have any results.

Since my SAH and Stroke I am paraplegic on one side with drop foot and hyperextension knee regarding mobility and other problems, when I was sent home, I was home and that was it. Nothing was addressed. OK, so for two years just manage yourself. Probably my own fault being in denial and not understanding. Trying to walk and learn myself I aggravated my knee...and in time it affects your back if your gait is bad. So after two years the Orthotics fitted me with a brace. That was just a dream, but do understand at the time I did not want a full Caliper for obvious reasons. I tried so hard for another two years just with the Brace. Now I can't wait for the Caliper...hoping reduced pain in the knee, walking more again, no back ache....taking the dogs for walks again. Now I don't care...

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[JayKay]

Oh Blueday - such a long time to wait Good luck with the callipers!!

I went looking online and came across this website that looks interesting, it's called Stroke Rehab online.

Interestingly, Tai Chi is supposed to be good:

Any type of activitity that stimulates or activites the brain can play a role in stroke recovery. Physical activities such as Tai Chi can help speed recovery time for some stroke victims. The slow controlled use of sequential movements can help with reactivating areas of the nervous system associated with motor (movement) skills. The added benefit of improving memory is achieved through the learning of the Tai Chi routines. A lot of the actions of Tai Chi are also great for improving balance, which is a vital skill to help with gait and mobility for stroke recovery. Research has also shown some added bonuses for the mind with improvements in concentration and calmness with regular practice.

[michelle C]

Hi Blueday,

I also have foot drop left foot, and wear a splint also my knees give way if i walk far which is not a problem as i cant:redface::redface:. Anyhow mine is a AFO maxi toe off splint i need help walking though but al leats it keeps my toes from going underneath my foot when i trip....you have to laugh dont you...dont fancy crying much......hope they get you sorted soon...did they have to do a emg nerve conduction test on your foot/muscle??

All the best take care

Michelle C xxxxxxxxxxxxxxxxxxxxxxxxxxx

[blueday]

Hiya Michelle,

I was beginning to think I was the only one with leg problems.

No, I had no tests over nerve control. They have said everything except, "Live with it".

Thanks for answering this...

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[blueday]

Michelle…

Your left foot has been partially effected as mine is on my right side. That means your right hemisphere has been partially affected whereas mine has been affected by my left hemisphere.

See, so if we put our own half of brains together we’d be perfect again. (Lol, excuse my own bizarre humour) Needless to say we are all perfect anyway.

You must have had Physio to improve things? Any luck? Having said that I think I know the answers.

I’m sure you’re like me and want to walk well again without thinking of every step.

But here are some thoughts… which I’m sure you know about but just my experiences.

I have had little walking success with my leg, my arm yes.

For me simple answers, certain brain damage. The wrong messages going to the wrong places or blocked.

My walking is bad. I know that. Tripping, wearing out shoes on the right side, hyperextension of the knee slapping every step. Mmm…accept it or work on it. I had good phsyio’s who tried everything but with little to no success.

On holiday once in Spain I was walking with a walking stick to help. Acceptance.

Over the years I was a good swimmer…like a duck with webbed toes!

On holiday I got in the sea again….not really thinking or medically thinking, just a hot day to cool down.

For me it was amazing, a dream. NO PARALYSIS! I could swim like I swam before (other than being out of condition). My God I was loving it….swam here…..swam there…further and further to strengthen everything again (and increase my condition too). I swam out all the people in our group who had no problems, you couldn’t get me out. So my bit of brain starts thinking. I had no hyperextension because in the water or sea you have resistance. There was nothing to trip over with the drop foot. I was so happy after the whole day I got out. Paralysis was back straight away…tripping and slapping. Good therapy though.

Got me thinking more…same brain, same leg just different messages to my legs. The next day, early in the morning on my own at our apartment I found some clear garden area. Something not to bump into.

Do things differently…send different messages to my legs. Think differently….Bingo….think backwards. So in the garden I walked backwards. No slapping of the knee, no tripping. Use my dodgy muscles to strengthen them again. Like a weirdo I was walking around the garden backwards with great success, then jogging backwards and running backwards. It works! I haven’t quite found the secret yet as I am using the reverse muscles. (The return muscles as opposed to the forward muscles)

This exercise may well not help you as my injury is on the other side. But who knows. I would try anything. Just don’t bump into things! Or if not try swimming again?

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[michelle C]

Hi Blueday,

Sorry its took so long to reply. Just caught up with your posts you make me smile which is a good thing:-D.

A bit of background about me....had an SAH in november 07, had a stoke during coiling op left side arm and leg weakness...after three weeks transfered to hospital closer although not fit to be transfered as couldnt walk and the pain was horrendous (they said it was a large bleed). Agony being tansfered to rotherham hospital plonked at the end of corridor in a room on my own...also often forgotten about as the staff used to forget my meds...must say the isolation was because i was and still am sensitive to bright light..the noise sensitivity is sort of easier due to hearing aids.

Rotherham staff said they didnt have the facilities to deal with me and my condition so stayed there for nearly two weeks...every night visited by a resident of the ward known as a "sundowner" who used to scar me to death when he wondered off and stand at my door looking as i found out later for a lead for a dog he used to be a dog trainer for Krufts and so reverts back to bygone days before ill health...which dosnt help me as i couldnt get out or move..they used to medicate him but he used to wonder off. Anyhow i was transfered across the road the Rehab oakwood hospital which felt like going backwards not forwards, started physio and memory test improved walking ability 3 weeks latere HOME.....in sept 08 had to have more coils inserted due to headpain etc november 08 difficulty walking left side carried on as you do, saw GP said it was foot drop referred to physio again sorted a AFO splint then couldnt do anymore....now i need help to walk anywhere have a wheelchair from wheelchair services and still have trouble with my arms and hands i now have absences that happen at any time day or night...i have a powerchair which is brill....but still cannot get any answers from neurologist etc as i am a mistery to everyone...nice to be different i suppose:lol:.

Blueday thanks for that..its the most i have written about myself because i havnt written my story yet....it felt good!!.

Sorry its so long tho.

Is your splint going to be a full leg...my knee gives way also.

Take care

Love luck and laughter

Michelle C xxxxxxxxxxxxxxx

[blueday]

Hiya Michelle and thanks for your note...

Hopefully I will catch you here. Thanks for giving us more background. Like you said it felt good writing that....so crack on and write your 'My Story' when you get the chance and the inclination.

You asked about my Caliper, so I know you will follow when I say: it is a full K.A.F.O.

Look forward to reading more from you in your own recovery.

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[michelle C]

Hi Blueday,

Yep i know what you mean, mines a Maxi AFO splint i have two i tripped and bent one WHOOPS:-D.

I am being sent for another EMG test by a different neuro which i dont like (no bed side manner so to speak) which i personally dont need as its been done anyhow

why have a test when they cannot do anything with my leg/foot and theres no need to.

Hurrying the K A F O splint up for you.

Hey i tried walking backwards made me laugh my other half has got used to me doing strange things now.....it was weird but different,

Take care

Michelle xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[blueday]

Michelle...I must have turned Pink in my head when I read this. You trying walking backwards. Yes it does work for me but stating the obvious you have to be careful. Me turning Pink isn't a colour that suits me much anyway.

Now I wish I could send you a video or show you what I mean.

We all know we are all individual and are very rare to be exactly the same in differences.

My best example is to show me walking forward with drop foot and hyperextension knee.

Then show you me running backward....I'm sure you'd chuckle. But for me it works. I actually like it as I train my brain to work. Like you said Michelle in reverse it is different as you send different messages from the brain. I have that sussed and worked out. My hard bit is to get it forward to work. All clever stuff, all I need is the answer.

I know what your going to say, "Well, if it works just walk backwards."

Mmmm.....I do sometimes.

If I'm late for a bus....I do turn round to get their quicker!

I send this link to show a certain gait being different....backwards. Same legs, covering distance...just backwards.....?

Running Man(backwards)

The second link shows how the mind works backwards..... but just for FUN!

This is my life now....just doing things ...differently.

So I'm not the only one.

(sadly the English was recorded backwards too) Edited August 28, 2010 by bogbrush
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[JayKay]

Oh blueday, you do make me laugh!! Thank you for the link: that last guy in the relay race was good wasn't he?!

[michelle C]

Hi Blueday,

I promise you i was careful it didnt work backwards anyhow:razz:.

Watched the clips the first one made me laugh or dear!!

I liked the music to the second and the third mmmmmm:-D

Thanks ...

Love luck and laughter

Michelle c

[blueday]

Admin note: This post has been deleted by the poster!

Edited August 28, 2010 by bogbrush
Admin note added

[michelle C]

Hi Blueday

Do you have your splint yet???. Hopefully yes.

Well take care we are off on our jollies tomorrow....to Ulverston near Cumbria i especially want to go to Manjushri Buddhist Centre so peacefully.

Take care

Love luck and laughter

Michelle xxxxxxxxxxxxxxxxxxxxxxx

[blueday]

Michelle.........thankyou for asking.

No....they stayed with a AFO...slightly amended with a jointed ankle.

My problem continues with the knee so I am a bit confused as I was told to be fitted with a KAFO. Nevertheless they will review it again in December 2010, so four months to review...2 months before any KAFO so that equals another 6 months of deterioration of my knee. Thanks though Michelle....hoping you enjoyed your break and holiday and received good Karma up there.

My colour is definitely Blue.....but hoping the colour of 'Orange' was good Karma with the Buddhists for you.

Bbbblueday....:frown:

[bogbrush]

Admin note: Due to the actions of one member destroying this thread, it is unfortunately now locked to further replies. Apologies to the original poster (JayKay) and to all reading this thread. Most of the thread has now been restored.