Hello, I would like to say Hi to other Carers, my husband has recently had a stroke, relatively young! And I would like to use this as a place to turn for support sometimes.
Take care Xxx
Someone will always be here for you. If you have time, and can navigate the site ... I would recommend that you trawl through some of the threads and follow the journeys of those who've been through the experience and have come through onto the other side. You will find honest, heartfelt comments, common sense advice and be given the opportunity to learn from those who've learned the hard way. I found enomous support and couldn't have managed without the information and support offered by these amazing people.
Settle down with a cup of coffee and be prepared to go on an emotional roller coaster - keep posting and let us know how you get on.
Take good care, Nic x
Lots of us are here for you. And even more here for your husband.
The problem you will encounter is trying to navigate this forum. SA are trying to upgrade it, but in the meantime I for one can not find my way around. Us SS are not in the best frame of mind and find the navigation frustrating and annoying.
The rest of the SA site is stuffed full of info. Well worth a perusal.
Do remember, recovery is slow slow slow. And thats a lot better than the alternative.
No two strokes are the same.
When taken to the stroke resus unit my next door patient was six years old. And there are plenty even younger. Age is not the factor commonly perceived. Recovery is faster/better if fit, strong and healthy so younger can often be a boon on that side.
You can ask me anything and I will share my experiences. Perhaps you can consider what info you are willing to share and put the basics on your profile.
Please say hello to your husband
Colin
We reiterate all the comments made by Colin, Nic and others. We are all here for each other. Such a pity that this site is dreadful to navigate though! Take care, V&J ?
Hi. I had my stroke in September. I was fit there was no warning. blood pressure was a bit high but my gp did not prescribe.It has put enormous pressure on us as a family. It has been a very difficult time.
For the patient it can affect who you are. Basic abilities, frustration, short fuse and really dark days when you are tearful and worried it could happen again.
It takes time and everyone needs patience. Read everything on this website and chat, there are some fantastic people who gave me hope on those dark days.
follow your medical team’s advice and chase them when you feel you are being ignored.
It does get better but you have to work hard at it.
Get well and love your carers
sandy
you are an inspiration to us all. Well done Sandy, you are going so very well. Just two months and you can see how things do improve. It is a disaster for many if not most families. And well done for recognizing the way it has changed who you are. Look forward to meeting the new Sandy.
Best wishes
Colin
Thank goodness they are having a look at the site forums. I thought it was just me being a bit ‘strokey’ not managing the navigation. I’m a relative newby to the site and stroke and find the info shared here really reassuring and valuable when I can figure out how to follow it all!
Lorna?
Hi Lawla
I can assure you we are looking at the forums, as you say - this just takes time to review, and change so can't happen overnight, unfortunately.
It is encouraging to see that there is plenty of conversations and support happening on here though.
Many thanks
Vicki :)
Hi Sandy, I totally identify with everything you say, I also had my stroke in September, like you completely out the blue and such a shock to me and my family and friends, you are right , it does change who you are, and everyone of us on this site have experienced the dark , weepy days,I had one yesterday , but today is a new day and I am going to have good day and do alittle bit more, as you say work at it, and forget the bad day , And keep smiling especially at my husband who is truly my rock, he looks after me and encourages me every day, hope today is good for you too Sandy. Lyn x
Dear Lorna
I have used this site since it was set up. I still cant find my way around it. My damaged brain will not allow a great deal of joined up thinking, but thats the case with most of us SS.
The old site was so much better. I joined in the early months and was very "strokey" at that time. I could use that site and after I recovered a little I could then use the fancy features.
I have learnt so much from other SS. And I have more to learn.
I guess we must flounder around. We will get there in the end.
Colin
Hi Colin,
I agree with your post. I would like to be able to see more than the last 10 ish posts of the day.
I just wondered do we really need the rewards??? I don't see the point of the stars sorry!
Kay
spot on re 10 posts, also, i'd like an option to see an entire thread without having to click "replied to" again and again plus an option to see a list of posts made by a certain poster, atm it seems impossible to find any old thread/post once it disappeared from the last 10.
and these things have nothing to do with being strokey, it's just bad design, imho.
it's still a valuable and helpful forum, though, even with its flaws.
Well said DJ and Kay.
I started on the "old" forum and it did something akin to DJs suggestion. It also emaild me when someone posted on strings that I had joined. Maybe the SA need to keep info "safe" and I know there were a few gatecrashers who mis-used the old site, but I dare say gatecrashers can get on to the new site.
My big issue is that I could use the old site when my capacity was minimal. You need to be fit for the current site.
The old site was like a cosy club. New site a bit like joining the dreaded and awful faceache.
At least the SA are trying and maybe will read this string and it could possibly help them. And the rest of the SA site is pretty fabulous.
I dont mind the stars. I can ignore them if I want to.
Dark already and its not yet 4pm. Spring must be getting near
Colin
Raining as well as dark in sunny Eastbourne ??.
Just wondered if we lost the stars it might release some space memory or what ever. Like you I just ignore them.
I always thought the site should be user friendly for the least computer literate like me. Before joining this site I'd never posted anything on line I don't have any social media accounts. But this site is vital towards my stroke recovery. I believe many others feel the same.
Hi Lyn
yesterday I was with the consultant and for the first time I saw the mri images on the day of the stroke and a couple of weeks ago. He explained what had happened and what had got better since September. Today I decided to go swimming so like you it made me feels lot better.
I hope your day was good
Look after yourself.
sandy
Hi again
Thank you as always for your feedback.
The stars are useful for some stroke survivors, and this feature was provided on the back of stroke survivors feedback, and because when new features are released on the site they will be of added value. Don't worry though, they don't take up much storage and we have plenty to ensure the site still works as it should! :)
We have over 8000 users on the site so far, so it is trying to find a 'happy medium' to suit everyone. The site is just under a year old now so improvements are being made, but it does take time and it is about testing things out and seeing what works, and what doesn't.
The old site didn't work well for lots of reasons, which is why it was moved over and users are now able to self-register so all people affected by stroke are given the chance to get the support they sometimes so desperately need.
I hope we have reasured you that you are being listened to, and we are making changes - they just take time.
Take care, and have a good night everyone,
Vicki :)
The MRI scan is rather a "sharp intake of breath" moment - however, we found it helpful to identify the extent of the problem, (and, of course, my husband was delighted to know that he has a brain!) We've shown some friends & family the scan, and it definitely makes the situation very real for them - there's no arguing with a bloomin' great void in the middle of your brain.
The consultant was lovely, and used appropriate phrases to explain what had happened, and which areas had suffered damaged. Although it was quite a lot of reality for one meeting, we felt that we gained better understanding of the impact this would have, and fortunately it showed that the rest of his brain was in good shape ?.
Glad you had a good day, and that there have been some improvements since the stroke.
Take care
Thankyou yes I’m struggling with reading the messages
Hi. My name is Lettie and my chap is Dave and he had a minor stroke 3 weeks ago which has devestated us both. We are currently doing our own physio to a certain degree at home as B'ham are useless as we are getting nowhere trying to get physio arranged.
Although he is doing great after just 3 weeks as he can walk somewhat independently and has some use to his right hand/arm, he is getting frustrated as he feels that he should be further along than he is although i try to assure him he is doing amazing.
I work full time so each evening includes walks and exercises. I do go home each lunchtime.
Cananyone provide any advice or tips on exercises ETC as to keeping our positive resolve going. We will not be beaten Thankyou