Could SOMEBODY PLEASE tell me...

[JennB329]

WHY dad will not use the $7,000 computer that the VA bought him that will talk for him!?!?!

It just sits there on the charger. My 9 year old cousin has a blast with it when they go to visit my folks. He makes it say silly things and Dad thinks it's hysterical. BUT HE WON'T USE IT!

I know at first when he was walking with the cane, that it was difficult to balance with that 7lb machine in his hand. But now he's switched to a walker WITH a basket attached and STILL he will not use it.

Is it a stubborn man thing?
Is it "too handicapped" looking?
Wouldn't you think it's better than a white board, marker, & eraser?

OMG... someone PLEASE explain that to me.

 

[Zaphoon]

Maybe he doesn't know how to use it.

 

[JennB329]

Oh he knows how to use it... who do you think taught the 9 year old how to make it say silly things?

 

[Zaphoon]

Okay, that answers that question. You know, it could be he is still trying to get over losing something that has been an integral part of him all his live, his voice. Maybe he's not ready to adopt a foreign voice just yet.

Have you asked him why he's not using it?

 

[thelma313]

Hey Jenn, my dad didn't like the voice on his dynavox so most of the time he would just write what he wanted it to say and then swivel the screen towards us so we could read what he wrote. He only made the machine "speak" when company was over or when he typed Italian swear words in it and then laughed when the machine voice mispronounced them. Anyway, maybe ask your dad to type out what he wants to say so you could read it instead of having the machine speak? That might get him used to using it.

And like Zaphoon suggested, you should come right out and ask him why he won't use it.

 

[t34gib]

I don't know what I would do without my computer to speak for me. I would feel so isolated. Like it or not, it is my voice, and I am grateful to have a way of saying the things I want to say. Tell him to get over it and use it.
NancyS

 

[BarryG]

I know exactly why he doesn't use it, it is because it isn't him. It is very difficult to get over the fact that this is the only voice that you have and that your own is gone.

The voices, as good as they are, are still unnatural electronic voices with no inflection, no emotion and no personality. We are a long way away from anyone confusing real speech with artificial speech. I have had conversations where something that I said was taken as a statement rather than a question and I have had to further explain myself. And half the time my voice gets the pronunciation wrong, for example when I say "I read a book" I have to type ""I red a book" or it comes out as "I reed a book". All of the speech software is developed for very simple phrases like "I want a drink of water (and not even a please!)" or "My arm hurts" and so they are all a long way from where I am and what I have to say on a day to day basis. My Speech Language Pathologist asks me if I have programmed my machines with phrases that I use commonly but how do I preprogram a conversation with my wife about her work or how we want to plan our day?

I do the typing a phrase and showing it to the other person to read rather than making the device speak sometimes too and I guess that is because I am self conscious of the fact that I can't speak and somehow it is easier to not announce it out loud.

I think that the fact that he allows his voice to be played with and finds it hilarious really illustrates that he doesn't take it seriously. Even when I could still speak I did not let anyone play with my speech device because that seemed to diminish it and make it into an object of humour rather than as a tool that was a new part of me, of who I am.

I agree, ask him why he doesn't use it. I think that he will say that it is something imposed on him by others, others who don't have to be the ones using it.

Good luck and I hope that he finds his voice.

Barry

 

[hopingforcure]

Barry,
Great explanation.. I really got it when you said I read a book.. That is really true, you never think of that stuff in life, but you know it made complete sense. We are a long way from making the speech seem life like and human. I so wish this was not the case. I get so darn frustrated when I think of all of the obstacles that Pals and Cals have to face.
I look at the general population and think if a tenth of them had to deal with the daily ALS struggles, well then we would have a cure, technology, financial help, you name it...

 

[trfogey]

Great answer, Barry. And it always amazes me that nobody ever thinks that way when they ask the question Jenn originally asked.

My usual suggestion in this situation is for the questioner to borrow the machine in question for a day and use it as their only "voice" for that day. Preferably on a day that they are going to have a lot of social interaction, so they'll have plenty of opportunity to have people finishing their sentences for them or just plain old talking around them. Not to mention having the conversation shift away from the subject while you are in the middle of typing your reply.

By the end of the day, they'll have no doubt as to why the machine is not being used and a far greater appreciation of just how patient their PALS has been.

 

[Blubear]

trfogey, that is a GREAT idea! My dad said tonight at Easter dinner that he would not use any speech device when the time comes. I for the life of me couldnt figure out why. But, you put it into perspective for me, I just never thought of what that would be like for myself. It never even crossed my selfish mind! Thank you for the kick in the butt!
Hugs, Kari

 

[GlenBrittle]

All of those answers apply. I am still trying to not use either my Ipod touch or my netbook to speak. Its not me. I think the most common irritation is that people want to finish my sentences.

In time , I am going to have to start to teach those devices some common phrases that I use.

 

[handinhand]

For me it is being so slow. People in groups just don't think to let you take the time to type it all in.
they are on to something else while I am still typing the third word. So i just don't even try.. Easier with a one on one ..Maybe it is a two way learning thing. The more I use it the more they might get used to it and give me a chance to finish.. I just don't think so though. Way too hard with lots of people . Good friends will stop and wait. So it just depends on who I am with...

 

[trfogey]

I'm fortunate that I don't yet need an AAC device. But I didn't know that I'd still have my speech by now and I had some professional experience that applied, so I began to study the issue of alternative communication for PALS a couple of years ago. Along the way, I discovered that computers have done a lot of good things for PALS in enabling them to stay connected to the outside world.

Unfortunately, every time we take that next step to stay connected, the price always involves giving up yet another piece of life that makes us who we are. And, from what I've gathered from reading around the Web and talking shop with other PALS who share my interest in AAC , losing speech is the toughest blow.

That seems to be the one that strikes right at the heart of our personhood. When we give up driving our cars, what we feel most keenly is our loss of freedom. When we lose our speech, we lose our ability to assert our humanity. Communication becomes more of a parlor game and less of a conversation.

And it's a game we are ill-equipped to play. On my best days, I could never type as fast as the slowest Alabama drawler can talk. As ALS progresses, that differential gets steadily worse. Sometime along the way, it's simply easier to remain silent and to give up the charade of being a conversational equal any more.

And, given that the circumstances that cause us to lose our speech are so directly related to losing our ability to eat normally -- and usually occur in close proximity in time -- suddenly, we become spectators at some of the most iconic family moments. We can't sing Happy Birthday, nor can we eat the cake and ice cream. We can't say the blessing over the holiday meal that you, not us, will devour. We participate by machine proxies -- the speech device that croaks out the birthday wish and the blender that chops and purees a share of goodies to send down the feeding tube. Nothing to savor and nothing to say.

Yes, the machines are expensive. And, yes, the more we use them, the better we'll get with them. But, until there's a cure for the disease, we won't get our voices back.

And sometimes we don't want the machine to say what we no longer can. The mechanical voice just doesn't say it right.

And, if it can't be said right, better to leave it unsaid.

 

[BarryG]

trfogey, very well put. Because I am completely speechless now (well I can still talk but nobody speaks my language) and cannot swallow anything I really know what you are saying. I am torn between deciding which is the greater loss, speech or eating, if I could have one back which would it be? I really miss both for the reasons that you stated, eating and talking are two of the greatest pleasures in life, go to any restaurant, any dinner party and you will see people enjoying food and conversation.

Many, many, many times I have just not said what I wanted to say because it was just too hard to type out what was on my mind, I didn't have the energy to type out one more thing. Normally it is easy to just think and talk at the same time and let the words follow the brain but the process is different when you have to think of what you want to say and then type it into a keyboard, even I get bored with what I am saying it is so slow. Communication is possible and even effective through a talking machine but conversation is so much more difficult.

To be totally honest I have better conversations here than I ever do face to face even with my own family because here I can take my time and compose what I want to say with no pressure to keep up with "speakers". Even though everyone who knows me is very patient I still feel pressure and often feel awkward when I slow down the flow of conversation and make comments about a previous topic.

Please don't get me wrong, every day I think of how fortunate I am that the tools that allow me to speak, however badly, are available to me and I do keep on trying to participate as much as I can but it is still hard.

No machine will ever replace a person's own voice, no peg tube will ever replace the experience of eating, no breathing machine will ever replace being able to take a breath of air with your own muscles and no wheelchair will ever replace being able to walk. But until a cure is found these are the tools that we need so these are the tools that we use and they are getting better.

I bet Jenn didn't expect this conversation when she asked why her dad wont use his talker but it is a topic that I am constantly thinking about. I was at a dinner party the other night and someone commented that they wanted to take a holiday away from computers and cell phones and IPods and all I could think of was me sitting there talking to him through my fingers. Maybe he didn't see the computer in my lap but I sure did, the only time I don't is when I am sleeping or driving.

Thanks for letting me have a place to talk,
Barry

 

[irismarie]

i LOVE all your responses - so interesting and so touching. BUt as to it not being MY voice, I have thought that idea is rather fun. I HAVE HAD MY VOICE ALL THESE YEARS AND IT WAS A NICE VOICE; tHE VOICE i HAVE NOW IS ALREADY not my voice so I can choose something else.I can act all different parts - I can be American, male, African;, no matter what. So there is a funside to the horror. Not there yet, thank fully but as Linda and Barry say, the slowness and consequent inability to come back quickly is a bummer