Paralysis

Share your story Caring for someone
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Hi all - I have just joined the Forum as Mum had a major stroke in early June and am looking for advice / to find out more from others.  Mum is paralysed on her right hand side, incontenent and has normal memory issues.  As a family, we have no idea whether there is any chance that she could get some movement back over time and whether incontenence can improve over time (Tom Balchins book implies that incontenence can sort itself out...) - or - if nothing has happened after three months this is unlikely.  Would love to hear from people who have a similar experience just to start learning more and knowing what we can do to help / expect - where to go to learn more.  There are no videos about paralysis and physio on this website which seems odd.   We found Mum a physio who has just started working with her and I will obv ask her these questions. Would also be interested to find out how people have found the NHS / care system - as to date has been very confusing (whole new world of acronyms) and is clearly underfunded (something  was aware of but not aware of how bad it really is...).  Getting NHS physio has taken two months.....Massive thank you to anyone out there who can advise / share.  Take care all.

 

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Dear Sarahjen

sorry to hear of mums stroke.

yes there is every chance that mums paralysis will fade. But it is up to mum to make the effort.

your support is very important, but if mum just relies on you to arrange things then it's a long unsatisfactory road ahead.

Her brain is busy working around the damage and, to a small extent, repairing some of the damage. This repair work will typically carry on for perhaps two years.

I am  afraid to say that support for stroke survivors is very poor. Add in the pandemic and rehab etc is terrible.

but when a finger starts to move, it is a wonderful feeling.

I wiggled every digit every day, in fact every hour, and I got a huge amount of movement. But I had huge determination and I didn't know anything about a stroke.

I went to group rehab sessions, all paid for by me, and I got progress from these sessions. The best was 'seated" yoga. 
 

I get an impression that medical seniors are inclined to be negative. I guess if they are upbeat then they get sued when things don't go so well. When I was paralysed, the medics were very positive. This fundamental change is sad.

I never stayed in bed. I have always got up, even if I then sit on the settee and sleep. Staying in bed is giving in.

The best thing I learnt was that lots of smiles work wonders, so please mum smile like crazy.

and mum please be positive. Think what she can do, not what she can not do.

best wishes

colin

 

 

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Hi Sarah Jen. I don't know how old your mum is but there is always hope. I am eighty three years old and had a severe stroke two and a half years ago. I was completely paralysed on my right side and had to be fed by a nasal tube. I can now walk with a rollator,have a little movement on the right side. My family and my determination have seen me through. Covid stopped N.H. S support. Don't give up. Best wishes Lilian 

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Hi Lillian - that is SO good to hear - thank you.  If you don't mind it would be really useful to know more about your recovery and any top tips that you have.  It sounds as if you don't have much movement on your rhs but can still walk with a rollator which is great (I need to find out what this is!).  Did you have any particular physio?  electro therapy?  Did you have any memory issues?  Mum really now has no short term memory which is obviously really frustrating for her and also hinders her recovery.  Would be really good to know whether there is any chance that this could get better - I can't find much on the Stroke website - other than be patient and hope it isn't demetia......Thank you again for being on this forum and letting me know that there is hope and well done on persevering.  x

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thanks Colin - really useful.  Mum is smiling (the nurses all say she has a beautiful smile!) and is now talking really well -  but she is also very very frustrated, understandably - key problem is that she has absolutely no short term memory and is really not eating much at all so if you have any advice on memory and food let me know.....So great that you are getting better and gives me hope.   We have finally got some NHS physio (as well as private) and he is trying electro therapy - did you try this?  he has also prescribed neuro painkillers which nobody else seemed to have thought about over the last three months which seems odd.......and why the whole system is so frustrating.  Surely there should be better communication for stroke victims about the basics.....?  would make things more efficient!  anyway do share any top tips and keep getting better.  

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Dear Sarahjen

you have done very well to get such a good variety of help. 
 

one thing I would emphasise is that no two strokes are the same. Each one of us has unique areas in our brain, so if the stroke hits two people in the same spots then it will not have the same results.

my long term memory was partially blanked, but not my short term memory. I found everything hard to process, but this had eased a little at three months, eased quite also at six months and eased totally at about 36 months.

please note that us SS do not go back to the same as pre stroke. We go back to a different character.

I eat much better than pre stroke. I really enjoyed the hospital food, which is not like me pre stroke.

the care for us stroke survivors is bad. And the pandemic has made things even worse. I call stroke the Cinderella illness.

to make a point, I will mention that five years after stroke I had aortic stenosis and had weeks to live. I had successful open heart  surgery to replace the valve. The whole experience was efficient, certain, comfortable and uplifting. What a difference compared to stroke.

So yes, the help for SS is bad.

be positive

smile

you are not alone

colin

 

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Hi Sarahjen. I am pleased I was of some help. There are so many things to talk about. First my rollator which is a walking aid on four wheels which you push, like a supermarket trolley. There are three wheeled ones but I think they are less stable, although I use one in the garden.I had some physio at first but this stopped after six weeks. Since then Covid prevented any help but my husband and family have been marvellous as I am sure you will be. I would not worry about memory just be patient everything is very slow it seems. I will be more than happy to help you in any way. Text soon to let. me know how you are. Love Lilian

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Hi SarahJen!  So sorry to hear about your poor Mum.  Hope she is doing well. Indeed, there is always hope. Please don't think I am giving you FALSE hope, but I overcame total paralysis, following a year in hospital.  Am very grateful to the physios etc., as I learned to talk again too.  All I can say is that I worked really hard, but that's not to say other's don't.  I was lucky.  Was in a wheelchair for 14 years, now use a walker.  Don't give up, and take care x

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thank you for the reply and for giving me hope - so great that you have managed to slowly recover.  take care yourself. x

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Glad I gave you hope.  Thanks for saying that too about my recovery.  Look after yourself and stay safe x laugh