Today is two years since my partner had his stroke! Brings back some horrible memories of that day but he’s still with us despite everything he’s been through. It hasn’t been easy and progress has slowed but on the plus side he hasn’t had to stay in hospital for over a year! His dysphagia has improved since the stroke but has been stable for some time now. Following a recent video fluroscopy its likely he will remain at the stage he is now so he is on level 5 minced and as he’s not eating much will continue alongside the peg feed. Ive been chasing up community physiotherapy. He has been referred for muscle strengthing exercises to see if he can at least stand and will then be able to transfer to the wheelchair. He’s avoiding going in his chair more and more as he is so scared of the hoist. I think because his mobility was so poor just before the stroke because of his cerebral palsy we were told he wouldn’t walk again. They gave us some exercises that me and the carers do with him but I think they’ve sort of given up on him. Hopefully we get some good news from his assessment. I just wanted to thank everyone in this group for the support. Even if I don’t post anything for a while I know I can always get advice from the people who know what we are going through. It means a lot xx
Dear Pauula123, Hi and just to say your husband’ s dysphagia has improved maybe the rest will follow! I am almost 22 months post “mild”stroke and Feel as if I,ve gone back a bit recently. Still ,mustn,t complain and keep going with the exercises!!
Thank you. I have noticed recently his speech is sometimes not as clear and I worried that there was a problem. Sometimes when he’s talking to the carers they look at me to see what he said! Because I’m with him all the time I understand him more but recently I’m struggling sometimes too which gets him frustrated. Hopefully it gets better again and I wish you well in your recovery xx
Tut tut , when will ‘they’ ever learn ; never say never ?!
Trouble is, if you’re given a label you tend to conform to expectations.
A prognosis, even when well-intentioned, can easily transform from a medical opinion into a psychological cage. When someone is told “he wouldn’t walk again,” it’s not just information; it can be experienced as a command, a boundary, a ceiling on hope. It sets a low bar for everyone involved—the patient, the family, and even the medical team.
@paula123 I try and use my stroke anniversary to reflect on how far I have come rather than what deficits it has left me with. That is easier said than done though especially for those who have had more severe strokes. That also gets easier as time moves forward.
If your partner isn’t keen on the hoist I wonder whether it would be possible for him to be shown how to transfer from bed to chair? That might not be possible depending on how he’s affected but maybe an ambition to work towards.
Use the “he was told he’d never walk again” to spur you on to prove the, wrong. Whilst you’re waiting for the muscle strengthening therapy try looking things up on YouTube that you might be able to do with him. Every little bit helps.
Above all don’t give up and keep trying. Things can and do improve years on.
I know what you mean about focusing on the positives. When I point out how much more he can do now he just sees what he could do before the stroke. I am hoping when physio come round they will tell him it will be possible to stand and it will give him the motivation to work hard to make it happen. We still have his frame he used before the stroke. I would love to help him stand using that one day. He’s having some stomach problems at the moment which is under urgent investigation but it’s his 60th birthday in a weeks time so that’s something to look forward to xx
@paula123 , my mum had to have level 5 minced food as well. Somedays she’d struggle to eat. This forum has good advice on how you can help your partner. Until recently, I was a carer myself. I’m happy to offer advice where needed. Best of luck .
xx
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