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May 10, 2003
Point Edward
Can You hear me ?
My mind is speaking loud and clear, can you hear me?
Yes I know the answer to your question, can you hear me?
I have a really funny joke, can you hear me?
Let me tell you how that works, can you hear me?
I know where that tool is, it's in the garage on the shelf 3rd from the top,behind the saw in the green box,can you hear me?
It's amazing as your physical voice disappears how much louder,smarter,funnier and absolutely frustrated that voice in your head gets.It never seems to be quiet, it's always knows the answer or a better way of doing things and usually wants to talk all night. Sometimes even thinks he's the smartest person in the room (usually when I'm alone) how on earth is everyone going to survive without me?
I've heard this disease described as being trapped, what a perfect description because feeling trapped is certainly present a lot.
I really have to count my blessings for the toys available to help us out to communicate with like computers and speech devices, because I for 1 wouldn't be so cheerful without them. Not saying whether I agree or disagree when pals throw in the towel but certainly understand why from a frustration point of view.
I'm not really making any point just sharing some feelings that maybe others maybe feeling or not and exercising my right or ability to still write. I'm sure other pals feel like this and maybe reading this some cals will understand why we seem grumpy sometimes
Can You hear me?
hi jim

even though i can still speak, i often don't because it's just too much trouble! so many little things about my day that i don't share with my husband anymore. maybe i should while i still can! he alone seems to always understand what i'm trying to say!
Hi Jim and Deb,

I think that you speak for the whole community that suffers from this als thing. I know Henry can still speak, very weakly, but he gets so frustrated (and tired ) from trying to get through to us. His mind is still so sharp too. Can "I" hear you? You bet I can. I can read your eyes, and know what you are feeling. Tired, uncomfortable, happy, sad or depressed. I can look at your mouth and see if you are smiling or frowning with frustration, or resting comfortably. I can look at your hands and see that you want something that is out of your reach. Can I hear you speak? Not from your mouth, but, still from you none the less. I can hear Henry's mind thinking and talking just by looking at him. And I nod in agreement with what he wants to say, but, nothing is said. I also, can get mad at him for something that he is thinking and wants to say, because, I simply know how my husband thinks. Yes, we are lucky to have all of our communication devices, because, we would be lost without them. It would be a very quiet place. I hear you loud and clear Jim. This als thing sucks! I do not have to say more. Can you hear me?

Your dad called this morning, said he would like to take me to see the mattress. I will call him and set up a time that is good for us all. We have company this evening, and tommorrow a Xmas dinner. Too soon! Anyway, hope this finds you okay, and hanging in there.

Stay Strong......

Love, Carol
Hi Jim,

So true...As a caregiver to my brother at times I get frustrated because with one look he thinks I should know exactly what he means. I know he is frustrated and yet I am frustrated as well because I don't know what he wants.

Once he wanted me to get something for him out of the blue and he was sitting at the computer I asked him to type the word as I couldn't guess what he wanted. Everything I picked up off the table where he was looking was the wrong thing. He refused to use the virtual keyboard...we finally had to let it go because I just couldn't guess. It would have been so simple to use such a great communication device. Eventhough he has no real use of his hands, he can manipulate the special joystick mouse he has and he does it all why not type the word?

Sometimes he tries to speak (although it's impossible to understand...)and it's as if because he can clearly hear it in his head he thinks we should too. It's extremely frustrating, especially when he changes know we might be doing one thing and all of a sudden he wants something that's not related at all to what we are doing...and gets mad if we don't get it. aRRRRRggg! you're right Carol, this ALS thing sucks!

I can only imagine how frustrating it is for him...with one look he wants us to guess immediately ...It makes me sad and angry because I feel totally powerless...I can't help him...


Thanks for listening

I think we hear you Jim and PALS will understand as will CALS's. You want to be grumpy and vent...go ahead, everyone will understand. Why do you think this forum exists? It is to vent, have fun, share your frustrations. Say it as you feel it, you will feel better getting it off your chest.
Debbie, I imagine you don't want to sound like a broken record with Dave, but share it with him. He can't help if he doesn't know, keep it positive but open. Since your health seems to be doing relatively well all things considered, take off like Al and Lee did, even for a weekend, leave ALS at the door and go have some fun.
Giselle, and the rest, from all the information I have read from this forum, one of the most difficult situations for PALS, is to have the cognitive functions without the motor skills. So the brain is operating, but the body isn't. And you have to guess what they are reaching for.
As Jim said they feel trapped. Carol, Lee, ( she is busy keeping Al out of a Cuban prison), Kim and the rest of the immediate CALS around can make suggestions to help out. Ask any one in the group who is having problems with the voice at their stage.
Carol, you know Henry so well, you can read him....and that I expect helps in the lines of communication. Not always I expect, but a great deal.
Love to all..this ALS a sidebar, I heard that the US was going to spend an enormous sum of money for his inaugrual ball with all the trimmings. this is his second term..can we not have a small luncheon?..the most spent ever before...can he not put the countries money to better use? Research? Just floors me...
Thanks all for sharing. It helps to get to know everyone and to share our experiences. Yes, Theresa, the good 'ol US of A! Melissa
Hi jim

i'm new to tHis and just read your posting. my Husband Has lost mucH of His speecH and i try very Hard to anticipate wHat He needs so tHat all He Has to do is look at me and i'll know wHat He needs or is trying to say. However, tHat is my fantasy. tHe reality is tHat i Have trouble understanding His speecH and tHougH i would like it to be otHerwise, i am forced to ask Him to repeat Himself or use tHe laptop speecH program. i don't tHink He likes to use it, He's a very creative and artistic person and i tHink tHe impersonality of tHe speecH program just underscores wHat tHis disease Has done to Him and His sociability.

gisele (sisterof) ecHoed wHat we Have gone tHrougH Here at Home many times, i understand Her frustration. we want to make tHings smootHer, easier for tHe ones we love, but it seems tHat we just frustrate and upset tHem.

all i can say is keep on trying, keep tHe Humour wHere you can

no wonder i've been getting so many puzzling looks lately, usually when i get asked a dumb-ass question that requires a long winded or typed out answer i save my time, energy and frustration by simply giving a slight shoulder shrug as to say i don't know the answer. but it seems i don't have any shrug's left in these mind was telling me my shoulders were moving and they felt like they were moving but no and that's where the puzzling looks were for, waiting for a reply from me lol.
so it's time to adapt to change again and being thankful for movement i still have and make the best of the situation .
question is what do i program into my speech device for a reply now (i don't know the answer) ,(i know the answer but don't feel like answering you) or just maybe (stop asking me dumb-ass questions) alright i'll be nice about it lol .
well that's my rant for the day tc everyone
Sometimes no reply is better jim. someone told me once long ago that it is better to say nothing and appear ignorant than open your mouth or in this case your speech writer and remove all doubt.
Hi everyone,
i'm glad we're talking about not talking. not being able to talk, for me, feels like i've gone from a participant to a spectator. now being a spectator isn't all bad. i'm tHe biggest Hockey fan tHere is, can't skate wortH a damn, never could, but i love to watcH. i guess tHe difference is tHat wHen i got pissed off at tHe canucks i could scream and yell and my dog would start barking, and tHe wife would run in tHe room and tHe daugHter would run felt like i was a participant. i'm really trying to find a way to participate, but its Hard. damn nHl, damn als!
Hi everyone,
i'm glad we're talking about not talking. not being able to talk, for me, feels like i've gone from a participant to a spectator. now being a spectator isn't all bad. i'm tHe biggest Hockey fan tHere is, can't skate wortH a damn, never could, but i love to watcH. i guess tHe difference is tHat wHen i got pissed off at tHe canucks i could scream and yell and my dog would start barking, and tHe wife would run in tHe room and tHe daugHter would run felt like i was a participant. i'm really trying to find a way to participate, but its Hard. damn nHl, damn als!
Hi guys,

i did a buncH of posting last weekend, However, tHey disappeared into tHin air. tHey were tHere, and tHen tHey weren't. don't know wHat Happened. tried to get on forum several times, could not. sometHing is Happening, However, i got on tHis morning not problem. ? Hope tHis finds everyone well, surviving tHe cold winter days and nigHts. we Have our fireplace just a pumping out tHe Heat. we Have a woodburning fireplace so tHe smell and visuals are really nice. i am still not feeling too good yet, strep tHroat and i am sure a sinus infection or sometHing like tHat. spent tHe past week in bed or laying down most of tHe time, Had 6 days off, back to work last tHursday, However, sHould not Have gone back tHat soon. anyway, i Have to go to work now, Hello to all ted, kim, jane, elaine, karen, al, tHeresa, jim, debbie, mike, will "talk" soon. stay strong, stay warm!

love, carol
Carol, it is not your imagination, i think some of the posts have disappeared, it seemed unusually quiet all week. i had trouble getting on several times again.
hope you are feeling a bit better. it is time for a cuban beach, al and lee can be our tour guides, after they got off their cruise....
Hi guys:
tHe only question i Have is wHy liz and al don't Have tHeir H's capitolized... is it a brampton tHing?
les, i tHink tHat i saw tHat you are from surrey as well... do you know Holly? perHaps you sHould tape tHe rants wHile you can (or Have tHem taped)and play tHem back as required!
carol, i've been suffering from tHe same Head cold and sore tHroat for about a week now... trying desparately for it not to migrate to my cHest. i Hope you've managed to save yours! Have you Heard from melissa?

Hi must be sometHing in tHe air around Here, but don't dismay, some times my 'H' 's do Hit tHe HigH note. wHen i am posting it is fine, but wHen i look back, tHe capitals are tHere.
is tHis forum sending viruses otHer tHen trojan Horses? tHroat and ears are killing me. sipping on some 'sleepy time tea' to Heal and sleep.
i was wondering tHe same , wHere is melissa?
nigHt to all...lets Hope we feel better ...
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