Aphasia - Trade secrets

Hi all, his my first go at this - none of this will instantly solve your aphasic im afraid, but sometimes u can get pass it. We all have different degrees of aphasia - but if you can get to be around 75% back, its possible to work in an office…and not even have to tell them your aphasic! Well, i have anyway lol :)Hope this could be useful…

Aphasia - an aggressive, bad tempted beast that never gives up - it can attack without warning! As communication is the key of all things that brings society together, when you are hit by the " mozzie bite " itself, everything you know can suddenly become difficult. So why do i say its a “mozzie bite”? Because it can creep on to you, uninvited…suddenly can hit u - make u scratch and worn under the rawness; and then it just won’t go away. Then it can clear, BUT…suddenly can strike again! And there’s not much u can do. Reading, writing, typing, understand, speaking…things that used to be easy, so simple, suddenly become remarkable difficult. Then again though, you can get pass the “mozzie bite” - notice the rascal early, smack the sod and you dont have to itch so badly…not everytime but there are ways…
And so after years of “practice” - working in an office environment, there are certain ways to get passed the

  1. One of the most frustrating things of the mozzie bite for me can often be NUMBERS - you get that info on the phone, it can be difficult to store them correctly. The digits are always very similar, ie, 4 or 5? 6 or 7? Very similar. And for a telephone number, often the amount will be minimum 11 digits! Something to manage to get across quickly - Say for example, a client suddenly says he will give you his number. Getting 5 digits all at once can be too much - ask for 2 digits please, straight away. Yeah ok, maybe most people never ask for this, but there’s nothing wrong from asking for that. something like - “ok, just to make sure can you give me 2 numbers at a time?” - 99% they will just say “sure”. 2 digits sometimes can be enough.

  2. Always ask for email - say “thanks for the number, just to make sure, can you send me an email” - I may have missed half of the numbers anyway, so you can say “yeah thanks thanks good, just in case could you send me the number by email and info by email?” I’ve done that countless times!

  3. If u haven’t asked for 2 digits, and suddenly u get 5 digits - if its got you, just dont bother, concentrate on the next lot. Store on the last amount or do the best you can. Then, after a small conversation, you can ask “just to make sure what was the number again?” You know you will get 5 digits, so be ready to store the first numbers.

  4. One day, you may have to phone up someone and there’s nothing you can do about it. You may have to question a shop for some details, etc. Can be stressful - just be ready for all details before hand! All written down, everything you can think of. Right down the core details on a bit of paper beforehand. The product, the address, the question, and what may else be useful. Just don’t phone up unless you have as much detail as you can, otherwise you can have serious stress you don’t need.

  5. Sometimes it depends on the job, or how important the job maybe. If your boss suddenly comes in, all guns blazing with info you haven’t got a chance of getting the whole lot - yet it may not be a must do in the next 10 seconds - take your time. Right down what you could store, and then in the next hour or so, you can say “sorry boss, but i was just finishing off a last job earlier - and i lost my paper i had written down, can you just give me the last bit?” - you couldn’t do that every day, but once every now and then, you can use it. Just blankly saying “what?” a hundred times won’t do anyone any favours.

  6. Recording device - there are some very useful recording devices on the market, excellent way of storing information that you may not be able to store. Very simple - start recording, take the phone, and off you go. Then play back, and all the info you just couldn’t store…is there. You don’t even have to ask “can you say that again?” a thousand times, magic.

  7. caught off guard! - Ok, you could be walking across the office, when suddenly your boss pops up and fires off a job needed quickly; you haven’t got a pen, nor were you ready for the info! Whenever i get this, i make sure that i store the most crucial bit of info - the name of the product. The text and the reason of the job are important, but the best info would be the name of the product. If you don’t get all the data you need, then find the name of the product, and any info from it - come back and say - “boss, that’s the one isn’t it?” - the boss will then give you the needed info again. Should be enough this time.

  8. There are times when you maybe in a conversation with a colleague, when the words just won’t make much sense - this is aphasia, these things happen! Certain words, or a sentence, just won’t quite merge into a full understanding. And they may expect an answer - what do you do!? “What?” or “Huh?” ten times? Sometimes it just won’t work out. You maybe able to even remember the sentence after - but not to fully comprehend. So sometimes i deflect the question - “Ok, i will have to check that out” - “Perhaps, but are you sure about that?” - Deflection can be enough sometimes, and once again you could send an email after. In fact, i probably say that everyday.

  9. Limit the problem beforehand - ie. i asked a friend to play golf over the weekend; we agreed to play at around 12-3pm. I also said i would arrange the booking (oh er!). So, if i now phone up and ask for any possible time from 12-3pm, i could get all sort of options - quarter pass one, half pass two, twelve forty five, etc - it could be a problem for any aphasic person. So although i will have 3 hours, when i first phone up, I’m going to limit the responses - “Hello, is there a round of golf from 12 to 1pm?” - if there’s nothing for that slot, i will then ask for 1-2pm; and that follows to 2-3pm. It’s easier to limit the responses, as long as it’s not a problem afterwards.

anyway hope this can be useful for a few people. Any comments are welcome…? If its worth while i can add abit more, if not i wont bother…

You did a really nice job providing helpful stuff for people! Thanks for taking the time to do it! Have you said anything to your boss about having aphasia?

Hi Rich,

Thanks for posting this. I have been struggling on and off with aphasia for a few months now. I am very lucky to be in a work environment where I could explain what was happening to my co-workers, and they have been very understanding about it.

I tend to have more porblems when I haven’t had much sleep. Have your experienced that as well.

Take care,
Debbie

Thanks for sending this, Rick…I had to copy it, put it in large print to be able to read it with my aphasia! I’m off to try to read it now! Thanks!

Rick…Thank you…I just read Aphasia - Trade secrets…It is so difficult, as you said, to have that problem…I am not able to work because of my brain injury, but I still deal with the same issues every single day like you do! Again, THANKS!

Yes, as Debbie mentioned, being tired does aggravate the aphasia. It is interesting how differently aphasia can affect each of us. I was doing sudoku puzzles after one embolization, before I realized I had aphasia. Numbers were not an issue for me. After my procedure I understood everything being said to me, but what I said sometimes didn’t come out right. I could write, but the spelling and grammar was crazy – very unsettling for a former communications major! Fortunately, it cleared up a lot within a month, and a little more after, so that I feel I am 99% today. At least, when I do mess up, I can correct or compensate quickly. I know that there are times I simply change what I want to say b/c the right word won’t come. And when I am tired or stressed, I mix up words more.

Thanks for letting me know that your aphasia is worse when tired. Also glad to know that there is another AVMer out there who enjoys doing sudoku puzzles.

Take care,
Debbie

Good stuff Rich, very useful! for myself and I’m sure tons of others.

Thanks so much for this! This is me plus a little more at times. I find that it worse at times than others, depends on the situation I guess. But anyway, this was a great description. I try to tell family members and friends what happens to me when I have these moments but you explain it so well that I will copy this to them. Thank you!!

dawn kessner smith

Hello Rich, Trade Secrets…I love it!! Like my dear “Twin” Louisa, I cannot work because of severe Aphasia & some Dyspraxia, so your ‘secrets’ were great!! Many thanks and WELL DONE!! Lesley.xx

Well im very happy that i can be beneficial somewhat! I will try to improve it when it some time.

Right now in the company i work with, ive never talked about my AVM, apart from 2 people who left the company. The people who work with me now, know that im not that great with typing, or being on the phone - so generally they kinda help me some what. But not all the time, and stress’s me out to the max. I did work for 2 years in a different company, they new i had aphasia, as i had a bleed only 3 weeks after signing up! But they were very kind about it - they even bought me a recording device. But it was a very small company, so i had to take calls quite abit, it was not my cup of tea.

But here i am - im absolutey rubbish on the phone or taking too much info all at once very difficult, but being abit sly ive managed to keep on going…aphasia sux but we can beat it!

Rich thanks so much for your latest article on Aphasia. Now I can put a name with how I’m feeling.Yes, I agree write down as much as you can before making phone calls, it really is helpful. I get so frustrated at times just doing the littlest things it makes me crazy. Im sure you all can relate to this. I’m not working now I’m afraid my future employer will see through me and know something is not quit right. Susan

thanks for writing on this, i have blanks sometimes, don’t know what else to call it, some days i get stuborn but i’m beginning to write more down. time is my worse, have a meeting at 1 hang up and i cannot remember what time i was told it’s just not there so i have notes all over trying to keep up with it. or i read a couple pages or so but they are entirely forgotten. i am lucky i don’t work so i don’t have to explain i know i am so fortunate that most of my problems are either gone or getting better but it’s nice to here someone explain it that is going through it.
it’s nice not to be alone…judee pat

I am so thankful we have this sight to communicate to one another. How else would we find out all this information? I have a writing pad that I leave on the kitchen counter just to write things down, sometimes I carry it through the house.

This was very interesting Rich. I don’t have the problem but I would suggest EVERYONE ask for e-mail confirmation of EVERYTHING. Tell the other party that you like to have everything in print so that you can always refer back to it. This is a also a good move for those of us who don’t suffer from aphasia. Good business sense.

How long ago was your AVM. My husband had surgery at the end of last year and again at Easter. I know recovery is slow, but how slow? Am trying me best but it does not seem to be good enough for Dave!!!

Pauline, My AVM was removed three years ago Christmas. I’ ve heard it can take up to five years to start feeling better. Im not a patient person either, but it does get better every day. Depends on dosages of medications and not being afraid to ask the doctor as many questions that you may have. Sure we have to except that we wont be 100 percent like we were beforey , but we are lucky to be alive. After my surgery, I was left with constant pain in my right leg and hip but thankfully Advil helps ease the pain.
Dave sounds frustrated and angry its all part of the healing process, tell him it will get better. Good luck to you, and Dave is lucky to have you there cheering him on.

Susan,



Thank you for your reply, I know we have to be patient but we both get frustrated. Today was a good day and yes you are right, it does get a little bit better every day. One thing that has changed for the better is that he has developed a very good sense of humour, definately a bonus! Today was brilliant, my sister and I were spray-painting the fence and Dave was supervising us (he still has more common sense than me). We painted one side and then started painting the other side when we heard a startled cry and when we looked on the other side Dave had been standing exactly on the other side where we were spraying and in his words “looked like a speckled hen”. Now the interesting thing is that before stroke he would have been really cross about this but after stroke he just laughed. It was great.



I think we both have to take one day at a time, we are probably both grieving for the life before stroke but I am sure we will come through it, eventually. Thank you for your good wishes and I hope all is well with you. p.s. How long did it take you to get your driving licence back?