Hi my brother is in his month 3.5 after his grade 4 cerebellum rupture and brain infection, finally he’s off respirator but still with the tracheotomy so he can’t speak but he can read! I am seeking recommendations on techniques for effective written communication. Someone with a similar case, please share your experience. Thanks!
Hello, I have a brother who just experienced an AVM burst a year ago. It’s has been the most difficult experience for my family. The most difficult part was not being able to fully communicate with him because he could not speak, though he could hear and understands everything. The insident left him paralyzed on his left side and extremely week on his right side. In the beginning when he was in a lot of pain and a lot of meds the only thing we had to go off on what a very week thumbs up and slow blinking. A thumbs up or wide open eyes was “yes” a thumbs down and long slow blink was “no” That’s how we covered his basic needs in the beginning. He was able to give us a yes or no answer to questions like, “Are you in pain?” “Are you cold?” “Is it too loud?” “Does your head hurt?” “Does that feel better?” etc. He came home five months later and we started to use a different method. Still with a yes or know thumbs up we split the alphabet up into five rows. Row 1 A - E, Row 2 F - J etc. and we would ask him to give us a thunbs up depending on what row he wanted to start with. Then m, we would read off one letter at a time and wait for his thumbs up. We were able to put together words at first, “cold, water, sleep, etc” Then as we all memorized the “Rows” He started to put sentences together. It’s very time consuming and takes A LOT of patience because we are putting sentences together literally one letter at a time. But they are HIS own words. Fast forward a year later and he is able to speak a few words and point out with his hand what row he want to start with. He is even able to speak most letters, but we still go one letter or word at a time. His biggest fristration is being restricted in expressing himself. So we are all patient and give him all the support we can to let him know we are here to listen to what he has to say not matter how long it takes him to say it… I hope that helps
@Coquito I am so sorry to hear about your brother - Can he use both of his hands? you can try a laptop or an ipad
or a piece of paper and pen
there are quite a few sign language apps or ASL apps to download
when I had a stroke after my first angio/embolism and was in loads of pain I was signing I am in pain go get my stroke dr but none of the smart drs at Stanford know Sign languange… I was a geek and taught myself - a few simple signs like pain , hungry, thirsty, nausea, etc are easy and helpful You use different part of your brain to speak than writing-
Even if typing is too much for him I thought to myself that blocks would of been useful that children use.
Keep us updated
As well as Nancy’s grid of letters, some phrases in the grid like “too cold”, “thirsty” might make communication quicker. As Angela says, if your brother can use at least one hand, he could sign or point to such a grid himself.
Hi to all and thank you so much for your replies. This is so hard for all of us that it feels good to know we are not alone on this path. Your ideas are incredible useful. My brother is still at hospital (month 5) because he also got a brain infection in the ICU, he can blink bit but not always, but he can move his hands when he is strong enough. I think my family can try a mix of both techniques the alphabet and the sign language when he gets stronger. Right now he seems to be using all the energy for recovering movement and he gets tired if we try to communicate. Thanks again.
Hi, my 10 years old son was speechless for a 4-5 days after his hemorrhage. Thanks to a nurse at IU that was really good at drawing, my son had a chart with 6 pictograms to be able to communicate quickly his basic needs (fork & knife to eat, glass with a straw to drink, pot to pee, toilet to poo, blanket with a snow flake for cold, pot of medicine for pain).
When we met the orthophonist, he was speaking again otherwise, she would have give us access to more pictograms. Can you have access to an orthoponist at your hospital ? If not, you could try to find images for internet for everything that is repetitive, it’s will go so much faster and cut the frustration for your brother. I remember how mad our son was getting before he had the pictos.
He will have an craniotomy in June and this post make me realize that I should get ready in case he loose speech again. Maybe we will show him some signs language this time. Best of luck.
Just done a bit of research and find a list of app for people with aphasia. Maybe you will find something that could help you in it. I will definitely have a look.
@Coquito before my AVM I had a massive Stroke unrelated and was in a coma for 5 days, when I awoke I could not talk - the way my brain felt was heavy tired and thirsty. After a few days I could say a few words but it was like each word was lifting the heaviest weight I could lift. I did weight training and it’s the only thing I can relate it to.
My brain was swollen and it’s extremely painful. I later read my file and they were giving me strong pain meds fenteyl but I thought they were not because I was in so much pain.
My dad some how figured out I wanted fruit bars and later my husband started giving me coconut oil in my tea or coffee and I started to get better one side may be easier for him to see and hear you on -
I have dysphasiac and aphasia episodes and for the cherry on top, dyscalculia all the time. Since my stroke 6 years ago, reading is a problem. I comprehend words, can’t remember what I just read though.
I spoke with my neurologist and my neurosurgeon about relearning my rudimentary high school French but language is language.
Some of it, you may never regain, some of it will take some time and some of it very quickly. It’s important to remember, none of it will return if you don’t try. If you hit a block or feel frustrated, set it aside for a little bit.