Question about Bulbar ALS communication options
- Thread starter hopeandlove
- Start date
- Status
Tfisher
Distinguished member
- Joined
- Oct 3, 2008
- Messages
- 120
- Reason
- CALS
- Diagnosis
- 6/2008
- Country
- US
- State
- Mn
- City
- Brooklyn Center
My mom uses a Lightwriter, has a Dynavox TTL phone (but does not use it) and has several grease boards to write on but goes through the small pens with the magnets like underwear. I unfortunately heard about the voice recording this summer but it was much too late. My next plan is to try to get some software that will do a better job talking for her than the light writer.
Jennifer51
Distinguished member
- Joined
- Jul 7, 2008
- Messages
- 445
- Reason
- PALS
- Diagnosis
- 03/2008
- Country
- UK
- State
- England
- City
- London
I have the litewriter on loan, but am not too impressed with it, glad I didnt buy it, and for me it is still much easier to type on a keyboard, the litewriter is a bit too small to do that, so I have just ordered a 10 inch netbook which has a standard keyboard...then there is E triloquist which a free download for people with als...text to speech software .and my speech therapist says they can supply all sorts of software for it, when I can t type...so there is a lot out there. So wish I had known or thought about voice banking when I could still talk reasonably well.
BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
Geezer Hall of Fame
I have now achieved full membership in the Geezerhood Society Ladies Auxilliary.
My new DynavoxVmax arrived a couple months ago, and one nephew put it together for me, a niece got the battery charged, and another nephew assembled a computer stand for it (natural birch finish, easy assembly). Yesterday, the saleswoman who conned me, er, sold me the device came by for my first (and probably only) lesson.
Since it's too heavy for me to carry anywhere, and I can't see asking visitors to stand around in the den while I type out a conversation, I told her I just needed to know how to use it with a phone for now.
It's got a gazillion screens filled with tiles with pre-printed messages, such as "Hi." Or you can change the screen to a more formal conversational mode, and it will say "Hello." I could probably type out War & Peace before I could find the "Hi" button, but that's a moot point right now.
Turns out the saleswoman had never used the phone component before, so it took a while for her to read the instructions. We finally got it working and she was doing various tasks tapping away at the screen when the phone rang. A real, honest to gosh phone call coming in on my Dynavox.
Of course, I panicked. She, meanwhile, answered the call ("hi") and started a conversation with my pharmacy. I then did the only thing I could think of, and started shouting at the Dynavox, trying to get in on the conversation. "WAIT. HI! I NEED TO ASK YOU A QUESTION. NO, DON'T HANG UP. IT'S ME, THE ONE YOU'RE CALLING." Finally I ran (limped furiously) into the other room for a "real" phone just as they were saying their goodbyes.
When I went back to the den, the nice lady said "Your prescription's ready."
Yeah, whatever.
The good thing about this: I had planned on using a male voice on the DynaVox to get a little more respect, but it turns out I CAN GET A BRITISH ACCENT ! It is sooooooooo cool. I sound soooooooooooo classy.
Now all I have to do is remember shouting at the Dynavox doesn't work.
I tell you, ALS ain't for sissies.
I have now achieved full membership in the Geezerhood Society Ladies Auxilliary.
My new DynavoxVmax arrived a couple months ago, and one nephew put it together for me, a niece got the battery charged, and another nephew assembled a computer stand for it (natural birch finish, easy assembly). Yesterday, the saleswoman who conned me, er, sold me the device came by for my first (and probably only) lesson.
Since it's too heavy for me to carry anywhere, and I can't see asking visitors to stand around in the den while I type out a conversation, I told her I just needed to know how to use it with a phone for now.
It's got a gazillion screens filled with tiles with pre-printed messages, such as "Hi." Or you can change the screen to a more formal conversational mode, and it will say "Hello." I could probably type out War & Peace before I could find the "Hi" button, but that's a moot point right now.
Turns out the saleswoman had never used the phone component before, so it took a while for her to read the instructions. We finally got it working and she was doing various tasks tapping away at the screen when the phone rang. A real, honest to gosh phone call coming in on my Dynavox.
Of course, I panicked. She, meanwhile, answered the call ("hi") and started a conversation with my pharmacy. I then did the only thing I could think of, and started shouting at the Dynavox, trying to get in on the conversation. "WAIT. HI! I NEED TO ASK YOU A QUESTION. NO, DON'T HANG UP. IT'S ME, THE ONE YOU'RE CALLING." Finally I ran (limped furiously) into the other room for a "real" phone just as they were saying their goodbyes.
When I went back to the den, the nice lady said "Your prescription's ready."
Yeah, whatever.
The good thing about this: I had planned on using a male voice on the DynaVox to get a little more respect, but it turns out I CAN GET A BRITISH ACCENT ! It is sooooooooo cool. I sound soooooooooooo classy.
Now all I have to do is remember shouting at the Dynavox doesn't work.
I tell you, ALS ain't for sissies.
brendapals
Senior member
- Joined
- Jul 6, 2008
- Messages
- 957
- Reason
- PALS
- Diagnosis
- 06/2008
- Country
- US
- State
- any
- City
- any
oh Beth,
I just love your stories, you really should put together a book!
Of course, I have my brother's old dynavox, it's heavy, bothersome to pack around, and so far I haven't found a way to get the "voice" where anyone but me ( reading what I typed ) can understand it.
I've tried "ursula", and "wendy"- don't know if these are old voices, or what. A friend of mine updated the software last month, but it still doesn't seem like the "right fit" for me.
Thus, I will continue on with my slowed, slurred, spitting, silly voice, un-sissified as possible, until I have the time to work with the dynavox more.
Good thing we're tough geezers, huh?
hugs to you,
brenda
I just love your stories, you really should put together a book!
Of course, I have my brother's old dynavox, it's heavy, bothersome to pack around, and so far I haven't found a way to get the "voice" where anyone but me ( reading what I typed ) can understand it.
I've tried "ursula", and "wendy"- don't know if these are old voices, or what. A friend of mine updated the software last month, but it still doesn't seem like the "right fit" for me.
Thus, I will continue on with my slowed, slurred, spitting, silly voice, un-sissified as possible, until I have the time to work with the dynavox more.
Good thing we're tough geezers, huh?
hugs to you,
brenda
ilgal
Active member
- Joined
- Jul 28, 2007
- Messages
- 83
- Reason
- PALS
- Diagnosis
- 00/2001
- Country
- US
- State
- IL
- City
- Somewhere
I have a dynawrite with the phone accessory. It does work but 1) some people cannot understand the synthetic voice and 2) even if they can understand it they don't realize how long it takes me to type a reply and often hang up thinking I have ended the call.
So now I'm using TTY like deaf people use to communicate by phone. You still type and that's slow, but there is a relay operator who speaks what you've typed to the person on the other end and explains to them how it works. I haven't used it to have a chatty, personal conversation and probably never will, but for making appointments, checking on things I''ve ordered, renewing library books, and checking with my husband about when he expects to be home from the office, it has worked fine.
Illinois has a program that provided the equipment free and the relay service is free too.
Hope this helps someone!
So now I'm using TTY like deaf people use to communicate by phone. You still type and that's slow, but there is a relay operator who speaks what you've typed to the person on the other end and explains to them how it works. I haven't used it to have a chatty, personal conversation and probably never will, but for making appointments, checking on things I''ve ordered, renewing library books, and checking with my husband about when he expects to be home from the office, it has worked fine.
Illinois has a program that provided the equipment free and the relay service is free too.
Hope this helps someone!
- Status
