My husband had a stroke whilst on a ventilator for double pneumonia in June 22 at the age of 48. His automatic speech has improved significantly but he has real trouble in word finding. He knows exactly what he wants to say but life has become like a constant game of charades until we guess what he is trying to say. He wouldn’t be able to relay a conversation he has had so someone needs to take phone calls and go with him for appointments. My main issue is he cannot read or write and can’t articulate what he is experiencing. If we write a word and ask him to point to the object he can do that but can’t read a sentence. This makes his world so much smaller as he now cannot work, read or send texts to his mates. Any advice on how others have had experience of this would be greatly appreciated. He has had SALT but they just agree at how frustrating it must be
@Ruby1 Hi & welcome to the forum. Sorry you’ve had cause to join us but hopefully you’ll find some helpful advice now you are here.
I don’t have any experience to offer for your specific issue but have put a link below to the Stroke Association guide which may be useful.
I would hope your SALT would be able to help with this specific issue. Try calling the Stroke Association helpline too they might be able to provide some tools & techniques for you.
An occupational therapist might also be a good person to advise.
Wishing you all the best.
@Mrs5K Thank you for your advice. We have a meeting with the SALT team in the new year so I will mention the challenges again.
Traditionally we offer a welcome to the forum and a regret that you have had to join - which I repeat here there are other things that we normally say a few of us gathered into Welcome - what we wish we'd heard at the start
The gathering of useful sources of support and help in relation to aphasia has also been done here
Which would be my first destination!
if you started to search the internet for aphasia you will find a lot of resources. I’m not sure if UCL Have yet made the resources of Avapark (evapark?) Public but if you search UCL and “better conversation” you’ll turn up lots including home therapy as well as stuff done through Queen’s Square which seems to be a national centre of excellence
Searching on here (magnifying glass top right of the page) will mostly throw up requests for resources rather than any specific help but would still be worth exploring .
There are plenty of phone apps such as “Google look to speak” aimed at at supporting communication needs of aphasia sufferers and there are lots of resources -YouTube channels example for example - that give exercise on SALT
I would look at those apps that are aphasia.org recommend more specifically Helpful Materials - The National Aphasia Association
Best apps for aphasia | AbilityNet
Hi @Ruby1 and welcome to the forum. I remember that game of charades well and I was never very good at it before the stroke either There’s nothing more frustrating than knowing exactly what you want to say but it loses formation and structure somewhere between the brain and exiting the mouth. And I still struggle relaying messages and conversations 3yrs on…but it is better than what it used to be like.
I had a similar experience to your husband after my stroke; I’m now 3yrs post stroke. For the first year my hubby and children did the “important” talking and reading for me. Hubby ferried me to all my appointments and spoke for me. I just sounded like a heavily drugged up intoxicated drunken junkie…I even walked with a weave dragging my stroke leg behind me. That paints quite the picture but was my reality, at least I could walk.
I was a bit of book worm before my stroke, I also used the computer a lot and I wasn’t going to give these up just because of my stroke. So once I got out of hospital, I read every day. Didn’t matter that I couldn’t read the words or get to the end of a sentence, never mind a paragraph. But I kept coming back to it throughout the day, day after day.
As useless as I was on the computer and only having the one hand to work with, my none dominant hand at that, it didn’t stop me from trying every day. I used to tie a pen to my stroke hand with an elastic band just to hold it in place to try and write. It didn’t matter how it looked, it didn’t matter that I couldn’t draw a circle, it didn’t matter that I couldn’t control my eyes…slow reactions. Didn’t stop from trying to make shopping lists…with emphasis on the trying I could be very trying at times, but in my mind I couldn’t afford to be letting others do things for me.
It took me year to get on this forum and then some to even post on here. But I did it…having a stubborn streak a mile wide helped ! And your hubby can do it too. Being active and participating on here is part of my therapy, it’s brought me on in leaps and bounds over the past year. Even this post has taken a while a write, is no doubt long, has taken much editing and two of my fingers have now gone rigid. But it’s all good practice for me and hopefully a help to others.
It’s frustrating, it’s exhausting, he’ll think it futile and want to just give up over and over and over again. But he’ll keep coming back, keep on improving, it’s just going to take another year. I’ve been driving now for a year, take myself to my own appointments, even back to ferrying the kids places. It just took me 2yrs of nagging myself to get there
Hi Ruby1 I can only give my experience , none our stories here will be same. I was very frustrated for a few months, I had no desire to read or write. Realised from start fiction was a no no. To much for brain. I found reading books of nonfiction I was familiar with in short burst. A few sentences at a time. After a few months a paragraph or two . Then bizarrely no desire to read again for a while. But got to scribbling notes, my chair surrounded by stationary. After about year was guided to this Forum, bit by bit started to respond to folks posts. Three years on now , scan newspaper can write legible notes, this Christmas was confidently adding notes to cards. Have you a Stroke support group near you. .? From my experience it seems to be hit or miss if you can get back to reading. For me country diaries and short items on wildlife ok in short bursts. Then leave it for a while and slowly ease myself back into it. The comradeship of a stroke group where we finish off each other’s sentences , banter and share notes has been very helpful to me.
I find that in my Aphasia group It also gives you confidence without the embarrassment for the way you talk…or don’t talk.
I’m happy now that I can get through a novel in 3 nights again
Though there is still a bit of battle going on in my head to read that last line or two in each paragraph, it’s a weird little quirk still
Others run by Different Strokes can be found through their locator page Help for Stroke Survivors UK | Stroke Support Groups | Different Strokes
I run a zoom cafe on Thursday afternoons - one or 2 folk Who attend occasionally have aphasia and do it happily tolerant both of them participating without speaking and speaking when they want to.
We could set up a group if there are other aphasia sufferers here who would like to co-ordinate something I am happy to provide the zoom link
@EmeraldEyes Thank you for your reply and a Happy New Year to you and your family. Your experience has given us hope for the future with hard work and determination. You sound like an extremely determined lady which has paid off for you. We are going to take your examples and give them a try. We were told it would be a slow and long process but it’s great to hear from people further down the road. Take care, you should be very proud of the progress you’ve made. Maybe one day my husband will be able to reply in person
@Pds thank you for your reply. It’s great to hear people’s experiences and it helps us know what we need to do. Happy New Year
@Mrs5K Thank you for your support.