What is it like when you have no voice but you're screaming with pain?

[lostin]

Just wondering because my voice has almost completely gone. Do you have all the usual reactions but no sound comes out?

 

[Sequoia]

Good and scary question lostin....I do not know....I am just starting to lose my voice. I would like to know the answer....I think part of it is if you have enough volumn in terms of breathing to make a sound that is audible. This kind of thing can make you panic my friend...maybe you should be checking into getting a dynavox or some kind of text to speech software (there are free one on the internet, and some you can buy). Do you still have use of your hands? If not look into getting the eyegaze with dynavox. Think of ways you can beat this thing, with courage and determination to still communicate your thoughts and feelings. I hope others respond so you can have some hope. ((Hugs)) to you.

 

[notme]

Definitely look into some of the assistance tech available now. They make free and nearly free programs for iPad and other tablets or PC. You might contact the loaner closets in the ALSA or MDA to see if anything is available for you.

I'm sure it is terrifying to be in pain or afraid and not be able to voice your concerns. I have had just a taste of that with sleep paralysis--locked in with nothing but the mind working. Just that is terrifying--I can't imagine it in a 24/7 reality.

Prolog2go I believe is one of the programs.

 

[LizT]

my PALS has been locked in and voiceless for over 5 years. He still has eye movement and some facial expressions. Thats how I know there is something wrong- I read his face and his eyes.

 

[lostin]

locked in for 5 years! How awful. I plan to leave before then.

 

[SMillheiser]

Sequoia,
It's been a while. Is the Dynavox working ok? If not ... let's get something for you that fits your needs.
Stu

 

[catcaniac]

Same here as Liz. My PALS can't speak at all and we have no problem knowing when things aren't right for him. His eyes always tell the story about how he is feeling. He has options on his eyegaze for all of the pain meds we have available. The good news is that the only one he usually chooses is Tylenol and that is for fever not pain. Since his muscles have all gone, he almost never complains of pain. He is asked every morning and frequently throughout the day if he has any pain. I don't really think that there should be any pain that would not be completely manageable.

 

[LizT]

Lostin- you say "how horrible" to be locked in for 5 years. Nope. Not horrible. my PALS is a very happy and content man. I work my tail off making sure that he doesnt regret his decision to vent. And he doesnt regret it at all.
The idea of being locked in may seem horrifying, but its totally doable for some.

 

[KKay]

My husband has a Medical Alert System. He wears a bracelet with a button and when it is pressed someone calls over an intercom (the commercials "Help I've fallen and can't get up!") Well if they get no response over the intercom (which is VERY sensitive) first they call the house, then my cell, then our friends cell, then my brothers, then 911. Anyway, I told my husband if he is ever in distress and we are in the house and I cant hear him he should hit his button. If I don't hear the intercom, which they will increase the volume if noone answers(it would be hard to miss), then they will call the house phone, which I will hear or my cell which I always have. That's what we do. It's a good back up and he feels a little more secure with it.

 

[susanf]

I think it's all relative. I am treating each condition as it arises. Liz and her pal have a great life. It isn't "horrible" to them.

 

[Bad Balance]

To answer the original poster:

I think it must be like the painting "The Scream"