It might also help spur your husband on if you could share a few of the stories and inspirations you find on here, to give him hope. He’s locked away inside his head, communication is nigh on impossible for him and he must have so many unanswered questions, I know I did. He might get a few answers to those through you 
Lorraine
SIG
Great idea Lorraine, thank you x
Thank you @SimonInEdinburgh 
Dear all, still working out how this forum works so hope I’m posting this in the right thread…
Just wanted to update you on Gary’s progress. He is still being fed via a PEG but has started to eat solid food.
He is also talking!! We are is such a better place than we were even a month ago. He’s even asked my daughter to buy me a Xmas present 
Still no movement on LHS and eyesight issues but wanted to share some positive news just over 3 months post major stroke.
I also gather that Simon from Edinburgh is no longer on here. He was so kind and helpful and I do hope he returns!!!
Claire (not Lara )
Hi Claire,
That’s great news. Thanks for sharing Gary’s progress. 3 months is very early in recovery terms & hopefully you’ll see much more progress over the next 3 too.
Hope you like your Christmas present. I bet this one will be extra special.
Best wishes
Ann
Hi Claire
Thank you for your kind words.
Simon won’t be back as the SA deleted his account🤷♀️
He has set up an independent group which can be found here https://bit.ly/StrokeCommunity
Hope you have a good Christmas 
Kind regards
Lea
Hi Claire @Lara1
I am just catching up on your story and have read all the responses you’ve had. It seems the members have helped you and Gary as you come to terms with the situation you find yourselves in.
I specifically wanted to comment on your above note to say that in our experience, when it comes to Stroke survivors, Doctors tend not to be too “optimistic”. We too keep getting asked if we’ve signed a DNR (Do not resuscitate) form for my Mother and we keep saying “No”. They then say the line about further brain damage and condition even worse etc. So from our point of view, we have always said that they should attempt to resuscitate.
This happens each time we visit the hospital!
So we now just take it with a pinch of salt.
Having said that, each patient is different and we all have our own wishes on the quality of life we would like to live etc. I have spoken with people who have said their relative expressed a wish not to be helped after a stroke as they did not wish to live the sort of life they thought they would live.
As time as gone on (it is nor nearly six years since the stroke), we now think, perhaps it may not be a good idea to resuscitate Mum if she were to have another stroke as she is older and possibly more fragile. It was explained to us that the process of resuscitation can be harsh and rib cage may break (not sure of this is true) due to Mum’s age (mid- 90s) I have also been told that Doctors can ultimately override the patient’s wish IF they believe it’s in the patient’s best interest. I hope we never have to see this scenario.
For Gary, I am surprised they are saying this to you as he is a lot younger than my Mum, but the doctors will be basing their comment on the severity of the stroke and the overall health condtion your husband is in - again, I stress we are all different and it is not a one cap fits all situation.
Finally, I would like to add, one doctor has REFUSED to operate on Mum to replace her PEG tube citing it is too risky and he would not have a “death on his hands”. Btw, its should be stated here that in our opinion, they (he/his team) have been negligent in allowing this situaiton to arise). But this is a whole other scenario which I have already written about on this forum.
We therefore are doing all we can to look after Mum as best as we can so that
a) She does not have another stroke
b) Has no cause to end up in hospital
It is quite a challenge, I can tell you.
Wishing you, Gary and your children all the best.
Namaste:
hi. laura. that is so sweet. my husband had the same so I feel dr can be so heartless and just feel they cannot help at all. you keep encouraging him and dont believe everything they say fight the system fight harder for more stroke support , i did i went to lewisham council and i gave a good fight .saddly my husband and he passed but he also managed to speak his words was that he loved me. i was so happy and he was happy at home i fought to get him home and i got him the best care in our home surrounded by love. you must take care of you and do self care and that will help you and keep being strong and we all here for you .dont always listen to the dr do some research go to stroke groups they are good for support and you will meet people who are recovering and get advice from them.
Hello all, I wanted to give you an update on Gary’s progress.
Well, let me start by saying he celebrated his 50th birthday with a pint in a pub last week surrounded by family and friends 
He is still in a rehabilitation unit but has moved from a Level 1 to a lower intensity place.
He has, very slowly, managed to cross his ‘immobile’ left leg over his right leg!!
I’m now starting to think about home adaptations and am nervous about our new lives… whilst still being so grateful about how far he’s come!
‘Big’ Car test drives booked for next week and I’ve started to overcome my motorway phobia by visiting Gaz regularly!
I’ll be eternally grateful for all your kind words and support in the early days and will be keeping in touch as we move into the next phase of this journey!!
Claire xxx
Hi Claire @Lara1 great to hear of the progress Gary is making. And a belated happy 50th to him too. I bet he enjoyed his pint 
You will be nervous about him coming home but when the time comes you’ll work out a routine that works for you.
Well donecon cracking the motorway phobia too.
Look forward to hearing about more progress soon.
Best wishes
Ann
Thanks Ann, I am taking things one week at a time. I’ve kept a diary since the stroke happened and it’s really helped me to see progress. No point in thinking 6 months ahead - no one knows what that’s going to look like so I’ll preserve my mental energy for the here and now 
That’s the best way. Deal with the here & now. The future will take care of itself. I kept a diary too & it really does help you see progress as often you can’t see it yourself especially when they’re having a bad day.
Best wishes
Ann
Hi his journey is exactly the same as mine I was thrombectomy to craniotomy to give you hope this is me now
I can walk 10k steps a day I work
The journey is tough.
Best of luck kevin
Thanks Kevin, just spent ages scrolling through your videos. Gives me huge hope. Thank you and massive well done!! I’ll drop you an email. Can’t see past next month so hearing/seeing your progress is wonderful. Gary has been told he’s unlikely to return to work but I realise no one really knows.
Claire
So I’ve heard that the expression 2 steps forward, 1 step back often applies to the stroke recovery journey…. Well we’ve just had our one step back.
Gary has had 2 seizures in past 2 weeks (just as we were getting used to a slow but steady rehab journey). It’s shaken me up, especially with his imminent return home… I understand it’s linked to scar tissue in the brain and, I’m guessing, is a sign of good brain activity as new pathways are trying to form? Any reassurance welcome?
Sorry to hear that Gary has had some seizures. Must be worrying for you. It can happen after a stroke. Hopefully they will be able to control them with meds & get the meds stable before he is discharged.
Sending my best wishes to you both.
Ann
Hello Lara.
I can, and am happy to offer reassurance but with the caveat that we are all different and so things sometimes work differently. Also there are many variants such as age, severity of stroke etc.
Wrt reassurance, seizures can and do happen to stroke survivors and they can be managed and may stop after a while.
There is lots of information available including on the Stroke Association (SA) website.
Below is a quote from the SA website.
A seizure is most likely to happen within the first few days after a stroke but can also happen months or years later. Around 5 in 100 people (about 5%) may have a seizure soon after a stroke.
Here is the link to the page.
Seizures and epilepsy after stroke | Stroke Association
Below is our personal experience …
I am a carer for my Mum and the first seizures she had were after she had been discharged to home care and it was about a year or so after the initial stroke. When it first happened, it was scary but we were reassured and supported by the emergency services. After a visit to the A&E Mum was given some anti-seizure medication to manage the seizures and given the all clear to return home.
This is personal - we looked at the side effects of the anti-seizure medication and the volume of medication they had prescribed - it was a lot. Mum is petite and based on her size, her feed volume was around 1800 ml of fluids daily - this includes feed (liquid, water and any medication). In short, we chose not to give the anti-seizure meds due to the constraints and the potential side-effects.
After this she had a further 3 - 4 seizures over the next few weeks/months, but we just managed the situation which was to keep her calm and on her side to keep her airways clear.
After a whole, they stopped i.e. in total she may have had about 5 seizures which were all managed out.
That is how we did it, but as mentioned earlier, they do happen and they can be managed. It is part of being a stroke survivor 
I hope this suitably reassures you. It’s good that your husband is in hospital right now so that gives further reassurance if needed.
Best wishes to you and your husband.
Hi all
I’m new to this online community and hoping that I can find some comfort and support. My dad suffered a very big stroke back in November of last year. It was incredibly tough and very distressing. He was 59 at the time, very independent and living with us at home. Following the initial treatment to remove the clot, he then had to have an urgent craniectomy to relieve the pressure, following a month in the ICU were he was ventilated and sedated due to chest infection. Before being taken to a rehab ward in January, he was bounced around 2 hospitals. I felt that he wasn’t supported and encouraged in the rehab ward (not like the other patients). I suspect some of it might have been due to language issues (dad now suffers from apasia and lost the ability to speak in English following the stroke), and partly because compared to others, he tried easily and they didn’t want to push him too far. He therefore had v limited gait training, which was the most important thing for him.
Fast forward and it’s time for him to come home. I fought in the hospital for him to be discharged home with a package of care. I was really worried that if he went to a care home, he would regress even further.
He’s now been home for about 5 weeks with a package of care. It’s been incredibly difficult to care for him. I’m now considering whether a temporary move to a care home or nursing home is better. His needs are difficult to manage in between care calls, mainly the personal care and issues with toileting and incontienance.
I’m incredibly upset and feel like I’ve let him down, but with working full time I’m not able to provide him with the full care he requires. My mum is also 61 and has her own health needs. I’m riddled with guilt at the thought of dad going away, and worried I’m making a mistake and that instead of getting better he’ll get worse.
I’d be so grateful if anyone could let me know if they’ve had a similar experience. Any guidance would be much appreciated. Ideally I’d like a move away to be temporary and hope that dad gets the physio and support he needs at the placement in order to get better and come back home.
Thanks all so much
@Paradiseb Hi & welcome. Firstly i would like to say well done for caring for your dad at home. It is anything but easy & I am sure you have done an amazing job.
2nd well done for recognising that you need help. You are not letting anyone down & the way I see it you are doing the best for your dad. It would probably do him more harm ploughing on regardless. Caring for someone is a full time job on its own.
Any rehab facility / care home can be temporary & you can bring him home again when he has progressed sufficiently.
Speak with the Stroke Association helpline 0303 3033 100 who will be able to advise on options available to you.
Best wishes
Ann
Hi @Paradiseb
Welcome to the community, I’m sorry to hear about your dads stroke and the difficulties you’re facing with his care.
Please know that you’re not failing him in any way. As @Mrs5K has said, caring can be a full time job and I agree that a care home can be a temporary measure until he has progressed a little.
Please do call our helpline that Ann has given, they will be more than happy to talk through the different options.
I’m sure there will be some more of our members along shortly to offer more words of advice on this from their own experiences.
If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Anna