Have you seen the trailer for our new documentary? It’s called “When the Words Away Went”.
If not, you can watch it below:
The goal of the documentary is to make people more aware of aphasia and how to support people who have it. It will air on 26 May here.
The documentary will feature three people on their journey to an event that’s important to them.
Alongside this documentary, I thought it might be nice to start a conversation here on the forum about communication difficulties in general. Just for anyone who finds the forum after seeing the documentary.
To kick off, I wanted to ask:
If you had trouble communicating after your stroke, what advice would you give to someone who may be struggling?
I can relate to the comment about ‘having a dictionary to flick through to find a word’. For me, I just couldn’t find the word, it was a blank space in my brain as if I was opening and closing a filing cabinet rummaging around to find the word, I’d just stop mid sentence, a gaping void, in the end I resorted to describing things till someone filled in the blanks/missing word for me.
At other times, the wrong word would come out, as an example I’d call the kettle a pan, the TV a radio, I was in the right ballpark, just didn’t get it correct.
I tried to look on the funny side of it and laughed off my mistakes, though sometimes I’d be very upset, lost and emotional about it
My advice practice, practice, practice, read out loud, if you are able to read, or sing a song, again out loud to get the voice and brain back in sync.
Don’t give up, definitely keep trying.
I’ll be watching the documentary, thanks for highlighting it to us Ashley @AshleyTH
Looks good, I shall have to watch it. Although my speech is okay, cognitively, I struggle with patterns of information and am often left lost when people are explaining a process to me. I sometimes have no idea what they’ve said.
I recognise the guy in the image from TikTok, I’ve followed his progress and I got quite emotional at times, both with his successes and setbacks Such a lovely, supportive family too
My tips are: Keep sentences short and simple.
Take a deep breath between sentences so you don’t get breathless as you speak.
Read everything and anything out loud to exercise your vocal chords and tongue
When speaking to any strangers you are going to have any lengthy conversation with, tell them straight off you have aphasia which affects your speech. You’ll be surprised how much time and patients they have for you. Even if they don’t know what aphasia is they’ll have an inkling from what you tell them.
And don’t bother trying to rush through speech as that only gets you tongue tied and end up tripping over your tongue
Thanks for starting this, I’ll watch the video later. I certainly can relate to @Mahoney where I sometimes just stop to try and rack my damaged brain for the word. My mother was German and I picked up a reasonable understanding of the language mostly from listening to her (school German didn’t really progress me at all)…so what is he rambling on about I hear you ask? Well, on my visits to Germany without my mother I became quite adept at skirting around a word if I didn’t know or couldn’t remember. This technique can come in handy with general conversations in English when the same thing happens.
So, slow down and if you are struggling to find the word, try using a different way of saying the same thing. I also agree that practising saying things aloud helps avoid nasty surprises. I remember in the weeks after stroke,while still in hospital, being given some pages of text to try reading. Whilst I could read and understand them perfectly in my head, it was quite a shock when reading them aloud as my tongue got all muddled up.
Not being able to find my words has been huge part of my stroke experience,I was a barrow boy when I was younger then a publican so being able to banter was always part of my cockney persona.Now if I text I can still find my words but when I try and speak I find myself needing to grab my breath and slow myself down or I’m a babbling wreck it’s frustrating but I’m learning slowly.
Do you find you use your hands a lot more…I certainly do My son just asked me what the wrapping was for that I’d just left out. I have a potted Acer to give his grandma for her birthday today. I want to wrap the pot and put a bow on it but I just couldn’t find the words to explain that to him, could even find the word “pot” in moment. So I found myself trying to draw what I wanted to describe in the air with my hands
Thank you Ashley, I follow Jan a lot on Tiktok. I think I’m further along than her but it’s still a work in progress. She has been such a good inspiration for me, she boosted my confidence and was encouraging for me to get over my “embarrasement” of talking with strangers. If I could thank her person I would…and have Tiktok
Hi everyone, my husband had his stroke in January. He suffers from aphasia and apraxia, unfortunately he is unable to communicate either orally or writing. He uses facial expressions and his hands.
What I would suggest it that give them plenty of time to respond, try not to answer or anticipate what they are trying to tell you unless you are invited to help. Patience is the key, lots of frustration and anger on both sides at times, but try to remember it’s not their fault.
Really hard not being able to have conversations.
Working hard with our wonderful speech therapist.
I do but I also have developed a habit of putting my hand in front of mouth when I speak because I tend to have some dribble/spitting as I talk which then makes it harder for people to understand and I get alot of funny looks.
Just tell them you don’t want to dazzle them with your pearly whites
I used to dribble/spitting a lot in the beginning too, still get it occasionally when I’m concentrating and forget to close my mouth. It’s all such a constant thought process…close your mouth…pick up your foot…think before you speak…breath…your drooling again, close your mouth…pick up your foot…there you go on another trip, I said pick up your foot, next time send me a postcard …close your mouth…
It’s a stroke effect on the muscles in your mouth, just ask people politely to stand back, stroke effect causes spit. In this day and age they should appreciate your consideration, then carry on talking regardless
@Food that must be very difficult for you both. You say he uses his hands to communicate. Would he be able to type? It’s not ideal but might be a way he can answer you? The advantage of typing is you only need one finger to work.
Hopefully the hard work with the speech therapist will pay off soon. Xx