"Tricks of the trade" of AVM survivors?

Well i guess “tricks of the trade” is not quite appropriate - but im going to compile a page one day, where i will post how i manage to get pass the day at work, despite my aphasic problem. I wonder, how do u get pass your problems? Have u managed to compose a way that u can now get pass a problem, etc? If i get a few here i will build a little booklet or something…

My GP suggested keeping a note in my pocket briefly explaining my condition in case I suddenly find I can’t speak while I’m out.

Last time it happened I was just about to catch a train home from work, but didn’t want to get on while I was feeling so confused. I called my boyfriend and tried to tell him what was happening, but I couldn’t get the words out. Luckily he’s seen me like that before, so I passed the phone to the train guard, my boyfriend explained and the guard sat me down in his office until my speech returned.

What a great idea for a discussion. I did a search on the word aphasia…http://www.avmsurvivors.org/main/search/search?q=Aphasia
So many people on here have a problem with it!

Interesting. I am 8 weeks post gamma and have had several focal seizures in my mouth post op. They leave me tongue tied for about 5 minutes, but most recently I have lost the ability to actually say what I’m thinking. Now when I feel it coming I’ve started taking Ativan and it seems to ward it off. Again interesting, maybe it isn’t focal seizures at all.

GREAT… FABULOUS idea, Richard! Please do compile a list (of ANY tips on ALL things, if possible) so people can feel a little more in control of his/her situation by being able to have some ‘tricks’ to help them. Thank you. Hope you are doing well!

I have found the use of a meternome (clicking device piano players play tempo with)I have the meternome downloads to my MP3, because my motor cortex got zapped in the crash. I am hemiparaysis…My left arm is like a club, and my left leg won’t walk! the meternome has signifigantly aided my mobility And my mood for some reason? i know the Japanese are very committed to its use as an aid in music lessons-- apparently what it does to make a pianists fingers limber, it does as well to make my feeble brain limber
nicole

Richard,

I like the title of your leaflet/book-to-be. Maybe you could get it published or distributed somehow?The title is really short, snappy and humorous. You’ve gotta keep a sense of humour about these things.

good luck with your project

flower

Hi Richard,

Just read this aphasia tip in Neurology Now and thought I’d pass it on. I know you’re looking for ways to live WITH aphasia, but I thought you might be interested in this too:

Due to epilepsy, I underwent surgical removal of portions of my left temporal lobe/amygdala/hippocampus in 2001 and lost access to most of my vocabulary. This was, of course, very disturbing; I was a former journalism major reduced to pointing and miming to communicate.
Fortunately, my intake was not damaged—only my output. I had no difficulty understanding language—spoken or written. I underwent speech therapy for a few months with moderate improvement.
Eventually I stumbled upon a “therapy”: reading (to myself) out loud. I quickly regained much of my speech. I still have difficulty accessing names, and if I’m tired I’ll have trouble with nouns, but I can usually make myself understood even under those circumstances.
Perhaps other readers can also use this as a complement to their current treatment(s) for aphasia. Even now I occasionally read my newspaper out loud as practice.
Angela Woodward
Sacramento, CA

http://journals.lww.com/neurologynow/Fulltext/2011/07040/The_ABCs_of_Aphasia.2.aspx

Ninibeth has a great trick… Both Ninibeth and I have aphasia, due to our brain bleeds. I also write down what I want to buy before I go shoping (use Spell Check alot), or else I won’t be able to tell the clerk what I want. When typing a letter, use spell check, which helps our notes spell the work correctly. Honestly, Spell Check is my saviory alot!

Richard, PLEASE do it when you can!! I have some aphasic and full-on verbal dyspraxia. My Neurologist has given me a little card tht says: “I have a neurological condition. This affects my ability to speak; it doesn’t affect my intellect(just no short term memory), I appreciate your patience”. I always have it with me because many times when I buy a few thing, the assistant will tell me the price and I have no idea what they are saying. Most people are ok and very nice but others have been so rude to me when I show this to them, they look at me as if I am stupid and/or crazy. Then of course, I get frustrated, which means I start to cry, and they I get angry!! After all that, I leave the store and have to go for a walk to get rid of my anger, which of course is frustration. I am now 2yrs & 2mths post-op but I couldn’t talk for quite a long time after that.
Sorry this is so long, but it has certainly helped me tell you, my friend. Thank you and all the very best Richard.

thx all i will try to do something. I did have a go at documenting what i do to kinda “cheat” through my day as it were, but never really got round to it. Happens everyday…even just 30 min at work. i had to talk to our european agent, and asked me to change one of the offers we were running - straight away the sentence got me. So i said “thanks hans - yes thats good, thats alright. Im just opening the file, wait a minute. Just to make sure, what date was that?” - i knew what was going on - i knew it was an offer that was running; i knew the name of it; but the month he gave me just disappeared…in and out. But by just hanging a bit, i then asked a alightly different approach to get the date again…to “comfirm”. Although perhaps for most that would be OTT, he didnt really notice that i just didnt know the most basic bit of info that he just gave me…stuff like that just gives me a little extra time…

theres not a mssive amount i could do, wouldnt be worth a book, but maybe a few pages that may help.