To anyone w/ speach probablems

[fiddleplayer51]

Bette,
That speech pathologist hasn't done her homework, and she needs to take a course in bedside manners and communication skills!
She's dead wrong (pun intended :lol: ) about bulbar-onset.
Take care,
Jane

 

[georgia]

My husband is on record bulbar onset Jan 04 diagnosed Feb 07. They were guessing MD and Myasthenia Gravis before they decided it was ALS. He shows some hand and shoulder atrophy and weakness and a little foot drop. Not all go fast but we have to plan as if it might. Long life to you also.

 

[PDaddy]

By the way, I don't have a DynaVox (yet?) but it is able to accept a memory stick to upload your own voice saying certain personal phrases. These phrases can be assigned to hot keys to be played back in your voice. I have already recorded a bunch of phrases in advance, like "I love you" and other things like that. My voice is worse now, so I am glad I made my recordings when I did!

 

[BethU]

By the way, I don't have a DynaVox (yet?) but it is able to accept a memory stick to upload your own voice saying certain personal phrases. These phrases can be assigned to hot keys to be played back in your voice. I have already recorded a bunch of phrases in advance, like "I love you" and other things like that. My voice is worse now, so I am glad I made my recordings when I did!

That is a great idea! It will be wonderful for your family to be able to hear your voice.
The only thing I have in my real voice is our answering machine, and I am afraid we'll accidently erase it one of these days.
One thing I like about the Light/Writer is that you have a range of voices to pick from. I'm using a kind of whiskey-voiced, husky female voice ("Rita") right now. She sounds like she's been around the block one too many times, and it fits my mood!
I think when I get set-up to use the phone with the DynaVox or whatever I'll be using with the phone, I'll switch to a male voice and see if I get better service.
BethU

 

[fiddleplayer51]

Beth,

:lol: :lol: :lol: :lol: :lol:

Jane

P.S. That ole Rita's drunk as a skunk.....

 

[PDaddy]

I think when I get set-up to use the phone with the DynaVox or whatever I'll be using with the phone, I'll switch to a male voice and see if I get better service.
BethU

That's funny Beth, I always thought I'd get better service if I sounded like a hot chick!

 

[j5rj5r]

Phone calls.

I am not familiar w/ any of the speech devices except Light-writer and laptop. Take away the Light-writer's portability and it has very limited ability compared to a lap top. With my wife set up on her computer I can go cut the grass with out worry. All I have to do is put my cell phone on vibrate in case I can't here it ring over the noise of the lawnmower. She can communicate with her hospice nurse, the kids, her friends or anybody w/ a cell phone w/ text messaging. When she could still type using the eraser end of a pencil we got her a cell phone w/ a key board (you can't beat that for portability) and she could communicate w/ me from across the table at a restaurant or across the state. Can the other speech devices do that? I don't know. Like I said , I'm not familiar w/ all of them. For $8000 they should be able to do all that plus wash your car and cook breakfast. If a cell phone would guess the word for you like etriloquist it would be nice.
Just my thoughts and no, I don't sell lap tops

James

 

[georgia]

memory stick

Yes it will take a stick according to which one you have 256. 512, 1 g. I have a 512 Ram one and it will use a 1 g stick.

 

[BlessedDaughter]

Bette,
That speech pathologist hasn't done her homework, and she needs to take a course in bedside manners and communication skills!
She's dead wrong (pun intended :lol: ) about bulbar-onset.
Take care,
Jane

Jane,
I thought the same thing - how in the world can see into the future to see how this disease is going to progress with my father. She said that we should wait to decide on the speech device only he has definately decided to on a vent. I just feel a bit frustrated about this, b/c regardless of what he may decide now about he vent, he may change his mind several times - so how can we base a decision now on so many unknowns?
So I guess I need to get the registration paperwork into the MDA/ALSA and find out how long we can use a dynawriter type of device so we don't have to order one now.
Thanks Jane for your comment.

Beth - You are too funny about using the male voice!

Thanks for all the comments on this thread - really helping.
Bette

 

[BethU]

I always thought I'd get better service if I sounded like a hot chick!

It probably depends on who we're calling! ;-)
BethU

 

[hopeandlove]

Good to know

The insurance coverage is so tricky. It's hard to think ahead- at the moment a talking cell phone would be the most perfect ideal device. Wouldn't it be cool if you could then port it to a laptop. Too bad there is no such thing. I'm looking, but not finding much.
So laptop for home and work, but what about when out and about town?

Also anyone know much about the Words + Say-It Sam Tablet?

 

[BethU]

I've been using my Light/Writer more and more, because my speech is getting worse and it will probably take a while for my DynaVox to arrive, so I'm trying to get up to speed with the Light/Writer. And I'm wondering if the DynaVox will have the same problem Light/Writer does ... it's really hard to understand.

My husband has a hearing problem, and can't understand poor ol' Skanky Rita's voice on the Light/Writer. I think it's because there is no inflection whatsoever in the robot speech, and the words are all spaced evenly apart, unlike conversation. When I talk, I break up everything I say into small phrases (I have to because physically it's tiring to speak, but even if I didn't *have to,* this makes it easier for others to understand), and leave lots of space around difficult words, or sometimes repeat them until I get a good approximation of what I'm trying to say. I also use as much inflection as I can manage. I'm wondering if the DynaVox has solved this problem. I bet it has not.


HopeandLove: A really small portable computer on which we could download a type-and-speech program would be ideal, wouldn't it? The Light/Writer only weighs 1 1/2 pounds, and is about 7 by 5 inches, which isn't very heavy/large, but it doesn't have a carrying case, and becomes very tiring when you're toting a purse on one arm and carrying this around in your other hand. Seems to me there should be a better solution for communication on the go.

Let's hope somebody figures this out!
BethU

 

[gimpydad'slady]

BethU

A tip on the small computers, they are great in the beginning, but if you start having problems with your hands, the keys can become problematic.

When my hubby first got his system, he wanted lightweight and portable. so we got the Freedom Lite, with Easy keys and Words plus. No scanky Rita, but sexy Mike..:mrgreen: Oh he just loved it, it had AT&T true voices, he could carry it everywhere he went. Well that was all well and good, until he started having problems typing because of the atrophy in his hands. He no longer can use the little keyboard, BUT, we were able to get a cordless keyboard that had a USB stick, and was able to use it with the system...there went his light weight portability, but I guess that is what he has me around for....:-D...all joking aside, it is hard to make the right decision about the system, because you don't know how fast or slow the disease is going to go. Hope this helps....

 

[brendapals]

OK, now my question would be, at what point should I start looking at these devices? I was diagnosed on 6/3/08 with bulbar onset, probably was starting back in Jan 08. My SIL had said she had one I could use, but of course I haven't seen it yet. I mailed in my application paperwork for our local MDA, and I still have insurance with my hubby's work.
My boys got me a microphone for our home computer to do some "voice banking" while I can still be understood. I'm a bit slurred, but able to make people understand, especially in person.
Thanx for all the help,
Keep the faith,
brenda

 

[BethU]

OK, now my question would be, at what point should I start looking at these devices? I was diagnosed on 6/3/08 with bulbar onset, probably was starting back in Jan 08. My SIL had said she had one I could use, but of course I haven't seen it yet. I mailed in my application paperwork for our local MDA, and I still have insurance with my hubby's work.
My boys got me a microphone for our home computer to do some "voice banking" while I can still be understood. I'm a bit slurred, but able to make people understand, especially in person.
Thanx for all the help,
Keep the faith,
brenda[/QUOTE

]

Brenda, After my first and only clinic visit at UCLA so far, the neuro brought in the speech pathologist for a meet and greet, and I set up an appoint with the speech pathologist for the next week. I assumed we would be working with my disarthria and trying to improve my speech, but the only discussion at my appointment turned out to be about which device I should pick from among the samples the sales rep brought.

I was not mentally prepared to listen to a sales pitch, but they implied strongly that the sooner I get an augmentation device, the faster I will get up to speed and also urged me to think far ahead to what my needs will be. (Frankly, that's impossible for me right now ... the logistics are just too complcated and scary, and also I clearly don't know exactly when I'm going to need to depend on the device.) I did tell them I wasn't ready to make a final decision on the spot, although I would probalby go for the most expensive. So they filled out the paperwork, and I took it home to review it. I couldn't come up with any better alternative, so e-mailed them "Go ahead and order it." and mailed all the forms in.

I suspect that because ALS is so unpredictable ... speeding up and slowing down, strange symptoms, etc. ... it's best to get going quickly on these gizmos. And "banking your voice" is such a great idea.

Good luck!
BethU