Any advice on Aphasia

[Janner123]

Hello again,I'm wondering if anyone can give me any advice. My husband had a severe tbi in August after falling off his bike and now in rehab .They have told me he has Aphasia, I'd never heard of it until now . The left side of his brain was badly damaged. He seems able to understand mostly what I say to him and sometimes replies sensibly but much of the time I can't understand what he's trying to say because he uses all the wrong words but it's as if he knows what he trying to say. It is very frustrating for him and I'm finding it really hard to cope with. I travel an hour each way most days to see him and have a few hours of conversation that doesn't really make sense. I so miss being able to talk to him properly, he is having speech and language therapy and they say it may or may not get better. Is this really going to be what it's like, is there anything I can do or any tools I can get him to help him let me know what he's trying to say, sometimes I feel like I might go crazy and we are relatively early on in the journey, nearly 6 months but it feels like 6 years.

[pinkvision]

Hi, I had pretty bad aphasia and I note you have described that he knows what you are saying. From my experience because he knows what he wants to say it's the neurological machinery for language that is broken preventing him from relaying what he wants to say.

A few things for you to note, as you said he understand incoming verbal communication and the outgoing verbal expression is malfunctioning.

What is the incoming written understanding like, can he understand what he reads? Can he make written outgoing communication.

Hopefully you can understand what I'm saying. With aphasia there's incoming understanding of language and outgoing communication using different types of processes. This is broken down again into letters, words, phrases and numbers.

Ask him if he can say the alphabet without stopping. Then see how many letters he can string together. I remember saying three then everything disappeared but by repeating this test multiple times daily for months I ended up saying the whole alphabet again, do the same for words and numbers. If it's the same for writing skills repeat the process with that. Eventually it all comes back because the brain adapts to whatever process is being used.

It takes years to retrain, my written skills were not that bad to start with, but I struggled to read and understand what I had written. This means the outgoing was good, but the incoming was bad for written forms. My verbal expression was really bad and the incoming was really bad also.

I kind of understood what people were saying but did not understand the meaning of the words.

It's something to think about and get used to but the good news is that it can all be retrained and the limiting factors are motivation meaning you have to do the exercises everyday, multiple times a day for months and years to build it all back.

Something to note, six months is really early in brain injury recovery so you may need a bit more time to get used to the situation.

[Janner123 in reply to pinkvision]

Thanks that is encouraging, I know it's going to be hard but you have given me hope. At the moment because he is in level 1 rehab I'm sort of leaving the therapy to them as when i visit he is often very fatigued having been doing therapy already. It is quite difficult to know how much he understands. He can read most words but gets some wrong, as to writing he has also got severe contractures of both hands so he finds it a bit hard to hold a pen properly which doesn't help but he writes away quite fast and it seems like he knows what he's trying to write but it comes out as a scribble I can't read. If I ask him to do simple things like move your arm or turn your head he does it. I'm keen to try the counting and alphabet that you spoke of, thanks for your help, I guess I will have to be more patient, not a thing that comes naturally to me

[sca2013]

So first - as a caregiver and spouse it has got to seem overwhelming to deal with all of this. I am very sorry you are both going through this. So know this is a slow process as I myself have experienced and I am not a patient person to begin with.

I know you want him to be more capable as soon as possible and believe so does he. We know what we want to say, but have a huge challenge finding our words and either saying them or writing them. You may want to see if you can use some music he enjoys, including those with songs. Music can help to relax and also help connect brain functions.

Another thing you may want to look at doing and that is possibly get involved with a caregiver group so you can talk to others going through what your are. They may have some ideas to make life go better.

Over time things will improve. What I'm referring to here is both your abilities to figure out compensating strategies to improve abilities and improve the quality of your lives. Life will be new in many ways. One of the biggest things I had to overcome was not trying to return to my former self and just start creating my new life. That freed up quite a bit of energy. Once I did that things started working better.

Here is something I've found that has given me tremendous stress relief and has created new solutions to this new life we live post TBI. There is no limit as to how many times you can do this for whatever is a concern, worry or overwhelm for you and did I mention it is free.

Basically there are four steps :

1. Write down what your biggest concern, worry or overwhelm is in detail.

2. Next assume or pretend you have access to an unlimited supply of all possible resources (money, experts, supplies, equipment, friends, people, solutions, etc.) needed to resolve what you wrote in 1.

3. Now write the perfect solutions to what you wrote in 1. above and include all the resources you need to make this happen.

4. Now relax about it and pay attention to what starts happening. One of the beauties of this is you don't need to actually take any of the actions you may have written about in 3. above. You may find you meet new people who just happen to have answers for you or know someone else that does. You may get new resources coming you way that make it so you can lessen your load and actually start improving your lives in surprising ways.

Wishing you many better days ahead.

[Leaf100]

Hi Janner, sorry you are both going through this.

It takes a while to learn to ride the highs and lows, and it is early days yet.

Others have given you great advice.

Right now, trust the therapists.

Contact Headway and talk to them - don't forget to ask what supports may be in place for you.

After my injury I had trouble finding words, being able to get them from brain to mouth, and also with the mechanics of speaking. I couldn't really catch much of what people said either.

I didn't have the benefit of access to therapists, and had to figure it out on my own.

You practise, you find things you find easier - like I started listening to the 11 pm talk show sports recap because the men had low voices and they repeated themselves a lot.

The point being, trust the therapists and also think what you might do later. Please be aware that he will have to pick from ideas, because only he knows what his brain can grab on to.

Most people find they do more therapy on their own terms at some point.

The other thing is you can get a fairly rudimentary communication ap where he can point at pictures- he may process that better at the moment. This might help frustration now as he can say yes, no , feelings, happily, sad, food , etc etc. I think some of them let you set them up fairly easily

Of course if he can write, that would work.

Both your worlds have really had a knock, this is going to take time and isnt a straight line heal like a broken leg - it goes up and down, and some days will seem totally backwards .

And, they can't tell you how it will turn out, you just have to wait and see. That is hard. Everyone is sort of the same but also unique enough that ot's hard to know for sure how it will go .

Just go one moment at a time, pace yourself- it's a marathon - get your rest, eat well, get some fresh air, have some you time here and there .

Keep us posted.

Leaf

[Janner123 in reply to Leaf100]

Thanks so much all of you for your help, tips and words of encouragement. It really helps to be able to hear from people who have actually had Aphasia themselves and know what my husband is going through as I am seeing it from the carers side. Our lives, carers and sufferers of tbi's are completely changed in an instant and I knew nothing about this different world I find myself in but I'm thankful to be able to talk to those who've been there already as even my closest friends who are very kind and helpful don't really understand what it's like and I don't expect them to

[Skulls]

I suffered this myself after a hypoxic ABI and, yes, it was and still is frustrating though, over 4 years after the injury I am much improved. This was an enormous relief because I am a linguist and languages are an important part of me and my life. Strangely, I was only aphasic in English. The other languages of which I had knowledge were unaffected so I could think of the French or German word and say it whereas the English would get stuck somewhere between brain and mouth. The medics and I would often have to play a game of charades to convey information. For example, I had a problem with the word “anaesthetist” so had to say “the doctor who puts you to sleep before the operation”. Though sheer conscious effort, I burned that word into my memory!

Nowadays, I play the Wordle puzzle in the New York Times daily and am studying Spanish - a language I began to speak when they woke me from the induced coma (I barely knew a few words before that and had never studied the tongue or visited Spain, Mexico or any other Spanish-speaking territory!).

I used to play Scrabble with a retired journalist but had to stop as the game became demoralising. He didn’t like the new me and we haven’t spoken for several years now.

I guess what this taught me is that the brain is an amazing organ and will repair over time but you have to be patient. I have heard the tip about music before. Can he sing to you?

Good luck / buena suerte to you both!

[Janner123 in reply to Skulls]

Thanks, that's interesting, I feel like I'm playing charades with him, he asked for his talky thing when he wanted his phone and he drew a pair of trousers when he wanted some. I'm encouraged to know that these things can improve even after years. Unfortunately he's never really been into singing at all or knows any foreign languages but as you say the brain is amazing. I was very encouraged when I asked him to say the alphabet he did it straight off and he counted to 32 without hesitation