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Newby - Carers UK Forum


Tell us a bit about yourself here.
Hi everyone. I have just joined the site but have been looking after my lovely husband for just over a year now. He suffered a stroke whilst working abroad. Not the best way to return to Uk - no home, no job for either of us, out of regular contact with old friends, not able to claim bebefits as he had not paid enough UK NI contributions in relevant year. Never mind the fact that he had paid in for 35 years previously, somehow that does not count!!

I was feeling down because he has been one of the unlucky ones who develop post stroke epilepsy. It just didn't seem fair as he has struggled so hard to overcome/come to terms with right side paraysis and mobility problems, a more or less useless right arm, complete loss of speech for months - now some limited talking.

However i have read some of the other newby postings and realise that compared to some, we are very lucky.

Looking forward to meeting you all, and having a chance to chat with others who understand the frustrations of caring for someone you love 24/7.
Welcome aboard, Barbara.

My dad had a massive stroke taking his right side a few days before Christmas 1980. He was 52. They went from a dounle income onto benefits overnight - a big drop. About 9 months later he developed epilepsy. Scary. I've lost count of the number of episodes he had until they got the medication right.

Since then he's been relatively fine, although like your husband he lost the use of his right arm. He taught himself to get dressed, do everything left-handed in fact - even make bread!

His heart's not so good these days and the effort of bread-making is too much for him, but he's just recently turned 80. He's not quite so independent as he was but he still does what he can.

One of the hardest things to do is find out what you might be entitled to. You might want to try the CarersLine - details are on the "sticky" under "General Discussions". Although it's only open on Wednesday and Thursdays, give them a call and leave a message - they will get back to you.

Thanks Charles.
I have been told that post stroke epilepsy has a high %age rate of being successfully controlled by drugs but it does take time.
Hopefully the doctors will find something that works for Ian, But you are right, the seizures are scary until you get used to them.
Hi Barbara,

Welcome to the forum and look forward to getting to know you.