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Brain injury blog by survivor

Brain injury blog by survivor



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Brain injury blog by survivor

Brain injury blog by survivor



I don’t remember much of my time in hospital following my accident that caused my brain injury. But I do remember my mouth and throat were so dry as I was “nil by mouth”, for a while. I kept making lots of complaint like noises, but that wasn’t getting what I wanted so I had to try to tell them. But I couldn’t think of the words!!! So I tried to make a sound that would better convey what I needed.

“Glug, glug, glug!!!”

My partner James, understood immediately, and he asked a nurse to come round with the soaking sponge they would put on my lips so I could just get enough liquid to answer the dryness.

I hadn’t lost the ability to speak all together but I was struggling to find the words, or when I found one I didn’t know how to put it into a sentence. This was when it became clear I was suffering from Aphasia.

Aphasia comes in different forms depending on the brain injury, some people are not able to speak at all. (When I was shouting the house down at night about whatever nonsense that came into my head, I’m sure some people wished I couldn’t speak.)

Message init can make it difficult to understand what is being communicated to you. I still find that I might not be able to follow a conversation properly if I’ve done too much that day, or they speak too quickly. Also reading can be affected which it was for me also, but luckily I’m 90% there now.

Message out – even thinking can be a strain, let alone finding the right word or constructing a sentence. I still struggle to find words, and I get so frustrated because I know it’s in there. But sometimes I confuse the meaning of words and pick the wrong one, but someone has to tell me and then it feels obvious. I suddenly remember they are right and wonder why I made the mistake. It’s similar with spelling. I always used to be the person you would use as your verbal dictionary, but even now post brain injury, there are times I can’t even think of the letter a word begins with.

Aphasia causes communication and language problems. But the person know's what they want to say, but the process is difficult. Here's how you can help them.

My speech was very slow and at times slurred. This made me even more self-conscious . I’d taken ages to find the word, then it came out like I was in slow motion, and to top if off it was slurred. I felt the need to keep telling people I wasn’t drunk.

As you can tell from the fact that I write a blog, my reading and reading has improved a lot. I can’t tell you how grateful I am for that. My mum taught me to read and write long before I went to school. I barely remember not being able to as a child. But suddenly to be in my early 30’s and barely able to make sense of the written word was terrifying and depressing. I’d always imagined that it must be so hard for those who were never taught properly to read and write. And yes, I can confirm it’s a nightmare!

So if you know someone who has a brain injury, remember to take your time and don’t rush. Try to be more succinct as long rambling stories can be hard to follow. And if they are searching for a word don’t just jump in, as that can be really annoying. By all means ask them to describe it’s meaning. You can try to find it together, but don’t just assume you know without asking. They might agree without realising that your suggestion doesn’t really convey what they were trying to say. You could accidentally change the meaning of their point all together.

If you struggle with Aphasia, what would you like others to do differently to help you?


13 replies on “Aphasia from brain injury”

Luckily, I’ve not had the same challenges you have had. For which I’m immensely grateful. Where you in a coma? Sometimes that can make things much worse. I do have the slurry speech at times from my facial droop. Sexy! You are doing very well and it will get easier every day! Keep up the good work.

Thanks Helen. I’m pleased to say I wasn’t in a coma. I am able to recognise how far I’ve come, for which I’m thankful. I hope in time your facial droop improves.

I really like the saying Don’t Assume Ask, and describing the meaning allowing you time to find the word I will have to remember that
I play Lumosity daily and that seems to help
I also have a desert spoon of Lecithin on my breakfast every morning and that has improved my ability to think quicker
My accident was 19 years ago

Jane I’m glad you got use from my blog. Thanks for tip of the Lecithin, I will have to try that. ?

Hello, I am suffering from aphasia, it is improving since the seizure and brain surgery. I totally lost my speech as a result from a large brain tumour putting pressure on my brain, causing a seizure. The words where in my head, but just wouldn’t come out of my mouth. I too had a facial droop, so panic stations at work they thought I had had a stroke. The thing was I am a sign language interpreter for the deaf in a primary school, I could still sign, I could physically put the words in my head into sign language but not into speech. Some how I could hook a word in my head and physically use my hands. In the panic and upset during my seizure I was forced to sit down, it was trying to explain in sign that it was just my speech, I wasn’t in pain, I was confused to what had happened, my speech has gone, the words won’t come out. They just wanted me to sit so held me in place. This made me very distressed and I started crying, just give me my hands back I will explain. it wasn’t until I was in the ambulance, my arms and hands where freed that I could explain with sign and slurred mixed up words I could communicate. Gosh what an insight I got into how the deaf children I teach must feel when they can’t express themselves and nobody understands what they are trying to say. The distress makes it worse too. I had an emergency craniotomy to remove the tumour, I continued to use sign language to hook the words from my head into speech, nobody in the hospital could sign, surprising even the basic questions ‘I need to go to the toilet’, ‘ headache’ ‘what time is it’ couldn’t be exchanged. How a deaf person or mute person copes in those situations must be very distressing. Slowly my speech has returned, its laboured and mixed up sometimes, I forget words and make up my own, if I am stressed or don’t sleep the words go and that is frightening. I know now to avoid the triggers that will cause my speech to fail, not put myself in situations where I will stumble over words and take it slowly, breathe in conversation, practice in my head my response before I say it. I still use my hands sometimes if it’s a difficult day, it helps. Most of all I can see what a lonely world it can be for those who can’t communicate easily, don’t be hard on yourself, slowly the words will come, poorly brains need time to find a new route to communicate. ?

You’re so right, and it’s weird that the hospital didn’t have anyone who understood sign language. It’s so frustrating to feel you’re not understood. Thanks for sharing your experience it helps put things into perspective.

It is definitely something I struggle with regularly. Particularly, as you say, when its been a full day, or they or I am trying to speak to quickly. Yesterday, I was trying to spell UGLY (for the song u-g-l-y you ain’t got no alibi…from the 80’s) And kept recersing the L with the G, my husband snickered, and I had no idea it’d happened. He had to literally spell it out for me before I understood my mistake.
Words escape me or the wrong one comes out, and I find myself embarassed, and the affirming it is my brain injury & “not me”.
I’m only 7 months since the car accident, so I am still working on it.

It’s so strange when you know that you know but something isn’t adding up. Wishing you all the best for your continued recovery.

My daughter struggles with this too. Like you she was a brain when it came to spelling, and now she struggles. She recently called a swamp a lake- so it is things like that. Though she laughs at herself and we all make light of it, it must be difficult.

My issue is that I can remember the word, but it gets stuck in my mind’s eye. Spelled out perfectly, but whatever the mechanism that moves it from my mind to my mouth doesn’t work right all the time.

That’s really frustrating I imagine. Thanks for sharing as I think that’s one that people hear of less.

I don’t have a diagnosis, but I strongly suspect I have a brain injury, probably from either during my toddler years or earlier. I never remembered not being like this. So many things seem to fit. I think I’ll look for an official diagnosis soon and may look for suppoted work. I can’t work most jobs but the usa wants to control disabled people so much. So many things on here fit.

I have to speak short, fast sentences, or my brain forgets both where the thought started from and where the thought was going. I can’t repeat what I just read from a menu second earlier while looking at the wait person. My brain forgets it almost immediately. It usually comes back, but not usually when I need the information. I focus so much on retaining the info I heard or keeping what I said if planned to say in mind, talking is insanely hard. I feel like I just make up everything i say on the spot. Socializing is so exhausting. I’ve been told most people like me but few want to talk with me. I know it can be hard to be around someone who either can barely communicate or just is silent for long periods. It’s frustrating for me because I do have a lot to say. It just never seems like it. I’m so tired of it. Thanks

I’m sorry you have such struggles and I hope you can find the right therapies to help you with them.

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