I am new here, having trouble navigating the sight🥴
My husband suffered a massive stroke 3 months ago. He has aphasia with ataxia of speech. Communication is frustrating for both of us. He does have an AAC however, does not use it ?… It’s by Lingraphica , it is a bit busy and difficult to navigate.
So I thought this may be a good site for caregiver/spouse to visit for information and support from other caregivers in my situation?
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Hi @Forever & welcome to the community. Sorry to hear of your husbands stroke.
I’ve never heard of an AAC but if he’s finding that a bit difficult to use would it be worth going back to basics and perhaps having speech cards that he could use instead. Would an ipad help? Of course it depends on his level of ability at the moment with writing / typing etc. I’ve copied in a couple of links to previous posts about aphasia in case there is anything you find useful in them.
There are many posts discussing aphasia. If you type aphasia into the 
search function you will find many more posts.
Others will be along soon to offer their experiences too.
Best wishes
Ann x
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@Forever
This site and the Stroke Association itself are here for all affected by stroke and that includes carers. There are also carer groups for those looking after the brain injured and disabled. Membership of these groups can give practical advice, support and companionship. I would recommend them.
Recovery from stroke is not over in the first few months though the system is not set up to offer free help on the NHS for an extended length of time.
When he is ready he will begin to make efforts for himself and will then need support and encouragement.
Long term he will make good improvements largely down to his own efforts.
This is more of a marathon than a short sprint and you will begin to discover you are not alone and that there are others going through the same.
There will be ups and downs but you can help one another through what is a dreadful experience.
I believe those who have been through this can help, inspire and encourage one another.
There is a life worth living and it is worth working towards that.
keep on keepin’ on
I had a stroke three years ago. My wife still cares for me. I have much to be thankful for. I do not have aphasia I have right side weakness.
I have found a device such as a laptop or tablet to be a valuable aid in many ways.
I did a search for that software on YouTube and see how it could be useful.
I also see it could be a challenge for one new into ‘stroke world’.
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Hi @Forever so sorry to hear of your husband’s stroke just wanted to say a big welcome to our community.
We are a merry band of stroke survivors and their carers and families. Between us we have a wealth of experience and are always available to offer information and advice if you need it. Recovery following a stroke is a long and difficult journey and I hope you will find this community a useful source of information and support.
I am 8 years post stroke and this community is still my go to place if I need some advice or I just need to have a rant or need a shoulder to cry on. Please know you are not alone. Speaking to people who know exactly what you are going through is worth it’s weight in gold.
If your husband is able to use a tablet or laptop I would encourage him to do that. It opens up a whole new world and I would be lost without mine.
Please remember to take care of yourself while you are looking after your husband. Hopefully you have friends or family who can help out, even if it just means you can pop out for an hour or 2.
Best wishes and regards.
Sue
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Sue has a good point there
Carers need to be cared for too.
When they are worn to a frazzle
someone needs to give a hug
and tell them how much they matter.
thank you carers !!
there should be a national or, maybe, worldwide, Carers Day.
beware, though, today is all fool’s day
also incidentally, a belated thank you to the Stroke Association for occasionally acting as a platform for my writings, attempts at humour, and the outpourings of a stroked parsnip.
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Hello @Forever
Welcome to this community. Hopefully you have got some ideas on what might help you and your husband from the responses you have had already.
It’s all wonderful advice and comes from personal experiences of being cared for and being carers. Surviving stroke and stroke care is not a one cap fits all or a solution from a bottle, so with time and experience you and your husband will find what works for you.
You will always have someone on here who can chip in with ideas and share their experiences - you should not hesitate to contact the forum any time, night or day, rain or shine, there is always someone around. Sooner or later you will always hear back from someone.
I haven’t got anything to add to what has already been said other than I myself am a carer and my Mum does have challenges when it comes to communication. This has not stopped her from asking for and getting the care and help she needs. Following her stroke, the diagnosis and prognosis was not good, but she proved them all wrong and is doing very nicely, thank you 
It’s not all plain sailing, there are good days and then there are not so good days, but in the end you get there.
Wishing you and your husband all the best.
Namaste|
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My husband is very frustrated and upset that his speech which was coming along quite nicely has now started going downhill. He says he feels like his tongue is in the way and he gets a pool of saliva in his mouth on the affected side. We are now having to ask him to repeat most of what he says now.
He says he knows what he wants to say and thinks he is saying it just fine but we can’t understand him. We have spoken to speech therapy assistants who visit us and they say they will discuss with ST who is coming out later in week.
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Hi @Forever and welcome to the forum.
Unfortunately, your husdand may just be able for technology just yet.
It to me a year to get back onto my computer and phone, tech that I’d used for many years. And even after I’d managed to get on this forum, it still took several months to recognise I’d used this platform for many years on another forum. And it was only for 15-30 minute spells at a time until the fatigue reduced and I could go for longer.
Things like poor cognition, poor short term memory, easily fatigued, and whatever other part of the brain has been affected, will be what’s preventing him from mastering anything new like AAC. It could very well be 6mths to a year before he can. It all depends when that part of the brain recovers.
So if the AAC is 'a bit busy and difficult to navigate, then he definitely won’t entertain it, I know for a fact I wouldn’t!
This early on in his recovery, it really has to be ‘simple stupid’, navigation in one straight line, no veering off, meandering or mutiple choice. Even looking at a group of picture options to choose one from, might be too much if all he sees is a very busy picture that scrambles his brain.
Reading ability may very well be the another reason for not entertaining the AAC. I couldn’t even manage reading a line of text let alone write my name in the first six months. And I suspect, based only on my own experience, neither can he. He probably can’t explain half the issues he has.
Lorraine
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You’d probably find it useful to join in on the Different Strokes Zoom meetings for carers. Here’s a link to more information about them. https://differentstrokes.co.uk/virtual-meetings-for-carers/
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