A new documentary about aphasia

The documentary premiered at the BFI last night, as you may have seen if you follow the Stroke Association on any of our social media channels.

You can now watch it on our website: When the Words Away Went | Stroke Association

It’s also available on Channel 4 OnDemand.

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Thank you for the reminder @AshleyTH I had forgotten :rofl::rofl: I will watch later today.

Have a great weekend.

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I suffered from aphasia and was helped by a NHS speech therapist when out of hospital. They help you understand what has happened and then give you good options / ideas to help you move forward. It can take a long time in some cases but it really is worth persevering as any improvement feels like a big positive step.

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I watched this last night. I was a blubbering mess at the end. So powerful & moving. The wedding vows got me but also the children & particularly the one who said he didn’t love his mum any more. All because she was like a different petson to him. Heart breaking :heart::heart::heart::heart:

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Hi everyone it’s been a while since I was last here.

I’ve seen the new documentary about aphasia and wish I had come across it right after my stroke.

It has taken me over 2 years since my stroke in September 2020 to finally admit that I have aphasia. The reason for the delay is because I was embarrassed to admit, following the lack of understanding and support from my family. My father thought I was mentally disabled and tried to keep me hidden away from the public. Whenever I was out in public with my sister and I tried communicate she would let people to ignore me.

When I had aphasia post stroke I also lost my British accent which I acquired when I came to study in the UK back in 1989. The accent was a protective shield for me to allow me to blend in.

I’m been working on my aphasia all this time by remembering the alphabet, grammar, spelling and number by using kids school books, reading out loud, and agreeing to be interviewed at various social media platforms.

I believe the fact that I can read or speak other languages has helped me a lot with my aphasia. Early on in my recovery I had to switch between English and Kiswahili with my partner and my cousin. It was exhausting at times but I kept going until it became easier.

Whenever my partner and I come across a foreign film or series on TV we watch it with subtitles and this helps me with reading and also triggers my love of languages.

As one person said in the thread you have to keep practicing every day, which I try to talk to strangers as much as I can here in Edinburgh.

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Thank you for sharing @joy.alliy and welcome back.

My eyebrows are so high you’d think I caterpillars on the ceiling and my eyes are watering! :face_holding_back_tears: So glad you are away from those who were stunting your recovery through their own ignorance (as in lack of knowledge). Sound like you are doing well in your recovery, it is indeed a matter of practice, practice, practice. My family have certainly been educated is strokes as I used to read these posts out loud a lot in the beginning :laughing: Everything was read out loud, even recipes :smile:
Thank you for sharing :hugs:

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Thank you for sharing your story @joy.alliy it makes me a little sad that you felt you had to hide your aphasia away. Lack of understanding by those around us makes things more difficult.

Good to hear you’ve found azway through though.

Best wishes.

Ann

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It’s very sad how people who are highly educated can be so ignorant about medical matters. Even though my partner who is Scottish tried to make them understand what it required from them in order for my recovery to go well.

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My husband had 2 major strokes now 4 years ago but despite speech therapy, he still finds it difficult to explain what he wants me to understand. He cannot read or write now either so using a tablet to write anything is impossible. We are trying pictures in a file to point at but he doesn’t remember to use them! My patience is wearing thin after 4 years… so I escape to do my work but from home most of the morning and after lunch too! So he can call me. I give him a break and then give him a coffee at morning break as he can’t get up to make one. We have tried to get him into the kitchen but it is such a performance getting him into the wheelchair! But communicating is still rather frustrating! I sympathisers with the other people replying but don’t know what else to do. It is a time issue - waiting for him to try to get an explanation out and then trying to clarify what he wants again!

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Yes others around do not understand my husband’s needs and in the end avoid trying to say anything more than hello if I take him to church for instance. He has other difficulties in going out too - car journeys are less frightening now at least on known roads but he refuses to go more than a couple of miles really for hospital appointments etc. Strokes affect speech, thinking, sight, as well as mobility. There is no real improvement in my husband either, nor worsening I guess. Trying to think of something more positive!!

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Hi Anne

I’m sorry to hear about your frustrations. I know you’ve tried using pictures to support your husband’s communication and it hasn’t worked very well. If this is because he can’t remember where they are located or something like that, I wonder if our new Communication Picture Book might help.

You can order one for free from here or view it online here.

Not sure if it will help, but wanted to mention it just in case. :heart:

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Thank you. I was not aware of the pack and have now ordered it. Let’s hope it helps. I really need to motivate my husband into using it and any other helps. He gets bored after a tiny while. He watches TV all day or listens to audio books but watching TV means he switches channel 10 times in 10 minutes it seems to me. If he gets into a story it might last till the adverts! Is attention span another issue from stroke or personality? I have been married to him for 46 years nearly!

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I really hope that the communication pack is useful. Hopefully it makes things a little easier for you and less frustrating for him.

Concentration problems and behaviour changes are certainly possible after stroke. Those two links will take you to some information on our website, if you are interested.

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I wouldn’t say that is personality. Speaking from my own experience, concentration and attention span was very much an issue in the beginning but did improve over the first year post stroke. It all depends on what damage/disruption has been caused to that part of the brain as to whether it’s going to be permanent or not.

In the beginning I couldn’t stick to anything at all, not even my therapies, for more than 10mins then had to go sit down for an hour and just close my eyes…or do something else, I was all over the place. And tv was out altogether; my brain couldn’t cope with the stimulation overload. This went on for many months gradually sticking to the task at hand for longer and longer periods. 2½ years on I’d say that side of things is back to normal for me, or enough so that I don’t find it an issue.

That could be either short term memory issue or short attention span, and to honest I could never decide which it was with me. I did that too all the time, which was fine if it was only me. But when you’ve the whole family watching a programme, you can’t get away with it so easily. But that probably did help me in the long run, as I would see a programme through to the end. That would have helped with the brain retraining. Maybe you could try taking the controls away so he can’t switch during the adverts; just a thought.

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rather that taking the control away make sure that it is placed in a position so that he has to stretch to reach with his affected side (i.e. more exercise), not my idea as my wife did this to me :smiley:

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Thanks - It is now 4 and a half years since the last [3rd] stroke. I can’t take the controls away and yes {llareggub] I have put it on his affected side on the coffee table. I put his biscuits there too! He has to look round for that! brain training through snacks! At least {Emerald Eyes] you can read and write; Colin can’t. He can pick out an odd word if there is no clutter of words, nothing to scan on the next line. He just isn’t really willing to learn anything new. He would get really mad at me if I removed the TV remote totally! Thanks for responding. I have now sent off for the Aphasia pack and so I will see if he is willing to try to use that at all!

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I do have aphasia too but only mild now by comparison to both your husband and the first year of my stroke. In the beginning I couldn’t read, write, speak or even figure out a way to communicate. That was the most frightening part of having a stroke for me. Particularly when I was in hospital as we were still in covid lockdown so my hubby couldn’t even come and help to ask questions.

All much improved now over the past 2½yrs later. But I do know the complete lack of communication was my motivation to get moving again, it was a frightening place to be. Because if I couldn’t ask anyone for what I needed or want, even to go to the bathroom, then I needed to get my arm and leg moving again to be able to get or do for myself somehow, some way.

At home I did have OT and physio coming round once a week for a couple of weeks. For the aphasia side of things it was to be over the phone :woozy_face: so no real help there. All I could really do was follow the OT/physio’s instructions like a monkey in a circus act.

I wanted to get on here but I couldn’t even key-in my own password to get the darn computer up and running. How could I explain to my hubby that I wanted to go online and search the internet for any forums where people who have had stroke might gather? I prefer forums to formal websites because they have real people with real experiences and written in a spoken English we can all understand. And then there was the constant battles between fatigue and very short attention span…that alone was enough to make anyone scream :scream: and I couldn’t even do that :confounded: I’ve only actually been on here since March this year. I managed to get as far as registering a year before but…attention span short lived…I then forgot the password and gave up…again…in exasperation. So it has taken the best part of 2yrs to get to this point when I think about it.

I still manage to frequently skip letters and words in my typing. My mind also likes to play tricks on me replacing words like skip for sky as I type or just types any old word I then have to correct, hence lots and lots of editing. That reply I wrote above probably took about an hour.

With reading I still can’t read a full paragraph, my mind likes to skip the last few sentences and sometimes in the middle too, it’s a strong battle of wills with my brain to read those last few lines before going to the next paragraph…like a strong arm wrestle :roll_eyes: But my attention spans is back to normal so I’m always ready and willing to perceiver in that battle of wills :wink:

My speech is still a bit slurred and getting words and sentences out is fine if I can keep them short and simple. And I always have to give a little cough to waken up the larynx before I talk or speech will come out in a whisper no one can hear. The longer and more complex a sentence then the brain starts slamming down shutters in front of those words I need and I have to scramble to find a suitable alternative, it can get exhausting at times :exploding_head:

On this forum, we are all stroke survivors or carers and we are all here
to help or advice where we can, but also to give hope to others through our own experiences. For those of us with aphasia, this place also helps us work on and improve our typing and communication skills and it’s somewhere you don’t have the spelling and grammar police you get a lot on social media sites correcting or criticising you :grin:

I attend a social aphasia group run by the Stroke Association, we meet once a month. We have various forms of speech impediment and one gentleman who can’t speak at all who carries a tablet around to communicate after a fashion but tends to leave it to his good wife. Another gentleman who has foreign accent syndrome, speaks with Slavic accent but is local born and bred. We all struggle to get our words out to varying degrees but we all get on so well together it’s surprisingly hardly noticeable. It’s guest speakers such as the fire brigade I feel sorry for :laughing: It’s the only other place, away from home, I can truly relax and just be myself without apology and explanations. If you haven’t already found such places you should try them. They are good for the carers too you know and you can pick up tips you might not already have in place.

Edit:
Ok, so this post did take a lot longer then :woozy_face: :blush:

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If he can pick out an odd word, then he can pick out two, then three and so on. That’s how it starts, that’s how it works to retrain your brain. And you have to keep on going, you have to keep on trying, day after day after day. Short attention is no excuse I found for me! I found a work-around doing tasks in short sets of 3’s for that e.g. stroke leg exercises 5mins, read 5mins, stroke arm tasks for 5mins then back to leg; computer 10mins, wash some cups 10mins, push hoover 10mins; cycle tasks 3 at a time and each day or week aim to add a few more mins. That’s how I always worked around that glitch.

Hello- as the husband of wife Sue (both oldies- very) who had a stroke some 6 years ago, I can completely understand your problems,Sue has no speech, often confused, we had NHS speech therapists then I employed private for 3 years but to no avail.Have tried most of the support Apps- some quite expensive, but of no use- No speech other than the occasional “Hello” and often confuser her Yes and No-we have picture books , pen paper etc.
I have found over the years that a “Personal” small portable, photo books helps best i.e. photos’ of friends, relatives, car,bus, walking, local shops (including our local pub) ,household items,etc etc-whatever may help, she uses this almost daily- life is hard, tiring, repetitive drives you to frequent/ daily despair., but the original person is still there, underneath ,locked in, suffering more than you- never forget that
Bye

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