To anyone w/ speach probablems

[j5rj5r]

If you are having trouble talking and are considering a speech device do NOT!!! let the speech therapist talk you into anything but a lap top. Medicare will only cover one device and it should not be a " Light writer". If you can get a light writer from an ALS loner closet , fine. They can be carried more easily than a lap top but they require the ability to type which can become difficult or impossible as als progresses and they can not do near as much as a computer. A lap top can be adapted to speak for you even if you get to a point that you can only move a foot or a knee or blink an eye. A light writer has no such capability. My wife's therapist told us that we had to take the light writer because she could not tote a lap top. This was a huge mistake. We have a lap top now and that's how my wife communicates. She spends a lot of her time online e-mailing her friends, posting on this forum and, of course, shopping. Can't do any of that w/ a light writer. Insist on a lap top with "Etriloquist", "Point & Click" and "Text to Speech" software installed.

[gimpydad'slady]

We found that out as well. Out speech pathologist was awesome! She worked it out were Bri could get the Freedom Lite, which is a mini lap top. He uses Easy Keys, and loves it. We also have it on his regular lap top, which is the one he uses at home.

The only problem with the Freedom Lite, is if you have limited ability with your hands, it could be problematic. The keyboard is only about 10". It is does have USB accessiblity for a regular keyboard, so you would be able to still use the device. Just would have to carry the extra keyboard.

[CindyM]

Thanks for the tip. One more reason why I love this site!

[jimercat]

James,

Thanks for the great tip! I was gonna PM you, but realized you haven't been on the forum long enough yet for me to do that!

Do y'all go to Emory? It seems the ALSA speech guy told us to get laptop and this contrary to some of the things from therapist. My husband is researching laptops now.

Too much stuff to figure out. One wrong move and there's a fly in the ointment!:???: Just another thing to add to the list!!!

Are you able to mount the laptop to her wheelchair? If so, how?

thanks!

[j5rj5r]

Yes , we go to Emory and Steve is our communication guy. I also was told to get a lap top but the therapist said no and I didn't insist strongly enough. If I had known then what I know now I would have hair-lipped the nation before I excepted a light writer.

We put the lap top on a stand near her chair and a lap board across her legs for the mouse. She can no longer type and has to do every thing w/ the mouse and that is getting difficult so we are going to a push button that she can push w/ her knee. I have seen lap tops mounted on a wheelchair but I didn't look at them well enough to duplicate it. I'm sure the communication guy can give you the skinny on mounts.

Hang in There
James

QUOTE=jimercat;47789]James,

Thanks for the great tip! I was gonna PM you, but realized you haven't been on the forum long enough yet for me to do that!

Do y'all go to Emory? It seems the ALSA speech guy told us to get laptop and this contrary to some of the things from therapist. My husband is researching laptops now.

Too much stuff to figure out. One wrong move and there's a fly in the ointment!:???: Just another thing to add to the list!!!

Are you able to mount the laptop to her wheelchair? If so, how?

thanks![/QUOTE]

[jimercat]

Thank you so much James!

It just chaps my a$$ that we have to rely on each other instead of the "pros!"

God help us all!

[BlessedDaughter]

Thank you!

We are going next week for an appt with the speech therapist, but last week she was hinting at the lite writer machines (or whatever they are called). It did see pretty limited to me, but I was assuming we could get something different down the road when my father coul dnot use hands/fingers.

Again, thank you thank thank you!

[sharonca]

Question - are speech devices the same as wheel chairs? You only get one paid for by Medicare or Insurance? I think it is best to go for the best and biggest. A friend uses a lite writer and does just fine - but she is not wanting for anything more - and it is on loan from ALSA.

Sharonca

[fiddleplayer51]

Thanks for the info and tips. This is an area we're working on now as my PALS voice is just about gone. He's been using Etriloquist on his PC for awhile now and it's great. I've set up speakers in the kitchen and in our basement that run from his PC so that I can hear messages he types into Etriloquist wherever I am in the house. We've found Microsoft Mary to have the clearest voice. We also have Etriloquist on a laptop.

Our ALSA chapter's AT person brought us a DynaWrite DynaVox from the loaner closet which would be great except that the voices it generates are muffled and all have foreign-sounding accents as though English is their second language. It's very difficult to interpret what my PALS has typed and I usually just stand there with him when he types his messages and just read them rather than listening to them.

We were recently evaluated for an SGD (speech generating device) at Woodrow Wilson Rehab near us, and anticipating the eventual loss of typing ability, we are deciding on either the ECO 14 which has head tracking capabilities and can be used with a wireless keyboard, or the ERICA eye-gaze system which also has wireless keyboard capabilities as well as infra-red for head tracking.The ECO 14 does not have eye-gaze capability at this point, although there are plans to soon incorporate that capability into it.

The ERICA eye-gaze system is an even smaller unit than the ECO 14 and is therefore more portable. It can either be placed free-standing on a table and carried around, or mounted on a wheelchair. It is essentially a tablet PC and to my understanding is the only eye-gaze system that Medicare will cover. It is uncertain at this time whether Medicare will cover the eye-gaze capability of the ECO 14 when it is finally available.
Because Medicare will pay 80% toward one SGD, we want to be certain that what we end up with will carry my PALS through all scenarios: from still being able to type through to having no use of hands and/or a weak neck which would make head mouse tracking difficult or impossible.
A representative of the ERICA system is coming to our house from Maryland on Thursday to show us the ERICA system.

Good luck to all PALS/CALS. Just trying to stay 1 or 2 steps ahead. Not always easy or possible!
Peace,
Jane

[kelly]

Oh man..
feel like we made the wrong decision when picking the dynavox. Sounds like we should have waited a little longer before making the decision. Seems like there is so much more out there to choose from. We were only shown the dynawrite and the dynavox. Hmmmmmmm

[conniej]

My brother used a Freedom laptop with EZ Keys and we added a SmartNav 3 so he could use an infrared sensor to type with it- He had voice and everything. It worked great.He tried the click button types of machines but had better luck with the IR SmartNav- it was compatible and easier for him to use. Medicare would only pay for one machine.

[fiddleplayer51]

I was mistaken in my post above about ERICA being the only eye-gaze system being the only one that Medicare will cover. There's also the MYTOBII P10. Here's a link for a brochure (PDF) about it:

http://www.tobii.com/archive/files/19145/MyTobii+Brochure+US.pdf.aspx

Best to all,
Jane

[jimercat]

I have been looking into this technology from Ambient. Unfortunately it will not be available until maybe the end of this year.

They supposedly have the ability to capture the thought to speech process and transmit it to computer.

"Thank you for your interest in the Audeo! We apologize for the delay in responding to your inquiry. We are currently on schedule to launch our first Audeo product at the end of this year, made specifically for English speaking patients with ALS in the United States.

Below are our projected United States and international release dates for the Audeo.

ALS (and adults with good cognitive ability)

· December 2008

o United States, English, ALS

· July 2009

o International, English, ALS

· October 2010

o Expansion to help those with situations similar to ALS (adults with good cognitive ability)

· November 2010

o International & Non-English, ALS

Cerebral Palsy (children and adults)

o Between October 2009 – April 2010

We appreciate your patience as we continue to expand our team to speed up our research, development, and product availability. If you have any questions or concerns, please do not hesitate to contact us via email. In order to serve you in the fastest manner possible please indicate any past correspondence and as many details as possible.

We look forward to helping you in the very near future.

Sincerely,

Kimberly"

This looks very exciting if it will only work! Can't wait to see!

[fiddleplayer51]

Wow, CJ! Thanks for the post! Yet another promising technology I'd never heard of. I wonder how many more things are just waiting to be discovered. For me, it's these forums that have taught me so much. I am so grateful to so many of you.
Take care,
Jane

[jimercat]

I posted this for barbell, who is unable to post for some reason:




barbell
New Member (Say Hi)
Registered Member
newnan, georgia usa
Join Date: 2007
Posts: 0
barbell is on a distinguished road

Default Hello
Hello. My husband can no longer talk. He was dx in May 2006. He usually writes on paper or a magna doodle. He has a dynowriter that the ALS clinic ordered for him, but he doesn't want to use it. He prefers to write even though it is difficult and we don't always understand what he means. The MDA association helped with the cost of the dynowriter. Thought this information might help others and that you could pass it on. Can not post on here and not sure why. I do appreciate all the help I receive by reading. Thanks to everyone,

[Al]

Hey. CJ. Tell barbel to try posting again. I changed a setting and hopefully iy'll work.
AL.

[BethU]

Oh man..
feel like we made the wrong decision when picking the dynavox. Sounds like we should have waited a little longer before making the decision. Seems like there is so much more out there to choose from. We were only shown the dynawrite and the dynavox. Hmmmmmmm

Hi, all ... just had an appt. with the speech pathologist, and was also only shown the dynawrite and the dynavox. She also had some hand-held devices that seemed more like what I need now, but they were really pushing the DynaVox.

The big problem with that for me is that a) The DynaVox is so heavy (8 pounds), I have trouble picking it up now ... am getting weakness in my left arm and hand, and don't know how I'll possibly handle it a few months down the road, and b) it's so complicated, I don't want to waste time learning it now.

I'm trying to maximize this time while I'm still able to get around and use my arms and legs, and don't want to spend hours every day reading a manual just to have a social conversation every now and then. I'd like something light and portable that I can use now, at the store, etc.

I guess I'm counting on dying of old age or a heart attack before I get more disabled! I know that sounds morbid, but having had one heart attack, frankly, it seemed to me like a pretty decent way to go. Had a nice little near-death experience with it, and thought later, maybe I should have refused to "come back"!

Anyway ... I told the speech pathologist I wasn't ready to make the decision about the DynaVox until I think it through. I would love to have a hand-held device that I can carry with me. Misplaced my husband in the mall last week (he has a memory problem and got away from me), and had to communicate with several clerks and security people. I did OK ... writing and gesturing and they all seemed to know instinctively to ask me "yes/no" questions, and everyone was very kind. I spent time watching all the cameras in the security office till I found him. But it was very stressful, and a purse-sized gizmo would have been wonderful.

The DynaWrite was very light and easy to use, and the voice was quite clear. But in case I don't kick the bucket soon, I'm sure I will need the DynaVox down the road. Hate these decisions! If I get the DynaVox I know I won't bother learn to use it until I'm forced to, so it will sit in its box and I'll continue struggling with paper & pen until my voice is completely gone.
BethU

[georgia]

If I get the DynaVox I know I won't bother learn to use it until I'm forced to, so it will sit in its box and I'll continue struggling with paper & pen until my voice is completely gone.

But trying to figure when you will need it and when you would get it is the tricky part.

He did get the DynaVox Vmax with 512K now I see it comes with 1G. They change the tech stuff so fast. They are also coming out with the eyegaze for it in the fall. Don't know how Medicare covers it if you don't need it when you order but later.

Some of your questions I did ask our speech guy after we got it. Our demo was the D4 so the VMax is different.
Q) Two many screens to go over- A) Use the blank spaces on a couple of pages and put the things you say most often . Use the Keyboard page for non-prepared speech.

Q) Too heavy- and I asked about the glare on the screen outside. He are bulbar onset and still mobile A) It is meant to be homebound and wheelchair mounted. I haven't gotten feedback on forums on what you do when out other than write or have someone else with you.

Q) I asked about the battery life around 5 hrs. A) plug it in when you can so you will have battery when you need it

Q) Surfing a pain because of screen size. A) From him and customer support it's like the way the web page was set up . This site is ok but PLM you have to slider across to read.
Compare to a Palm type it just goes with the size. Onscreen keyboards for surfing are a pain but to be mobile that would be what to use. He has the keyboard and mouse to use for now.

For a speech device I think it will work for a laptop using touch enter I like our desktop better. Yes it sits on a table and for now he repeats when needed but we have it when needed and play with it till have to.

I would like info on what you do when mobile and no speech.

[BethU]

Thanks, Georgia ...

The Dynavox rep didn't come out and say it's only for wheelchair use, but that is the only thing I can see it used for. I liked the programmed speeches for using it with a phone. ("Please be patient, I'm speaking with a computer,") etc. (Of course, you can program them in yourself.) I guess it's better to think further down the road, since you only get one paid for.

I asked about the eye-gaze capability, and the rep said it has ports so you can plug such devices in as they become available or needed.

Someone on this thread mentioned the Etriloquist (sp?), which is a free software program that does the same things. I looked it up online. Maybe that's a solution for now. Buy a light-weight portable computer and install that program for portability, and get the DynaVox for down the line. Of course, that's a lot of $$.

Thanks for your feedback.
BethU

[georgia]

I also compared the volume of the speech and not only the voice. From what I saw the volume without external speakers was not so much on the laptop. If the tech side of the computer was important and that keeps changing a $1000 laptop might be something you could replace things easier. I hear Ezkeys mentioned on laptops or Etriloquist the free one more often. The touch enter, volume were the things that made our choice and I could add keyboard and mouse and use for surfing as long possible then switches and it had as much computer as my desktop so for the screen problem he could use it if you needed.

[georgia]

As far as Lightwriter can you get one from the loaner closet?
A lightwriter has 26 storaged phases and you type other than that any of them are not going to carry a conversation as you know it now unless the other person is patience. The smaller they are when hand use is limited it is going to be hard to use. A Laptop of any kind is not going to be portable (light). The speech person is thinking future.
Our guy said as far as portable writing would be faster or repeating. We are the only ones is our support group with a device but 4 in chairs.

Also we have a ChatterVox he finds helpful. See about halfway down pg. But don't let insurance buy it it might be counted as your device then you would not be able to get the $0000 one when you need it. See if you can get a loaner or buy it yourself. It makes his voice louder without the so much energy. A Pal in our group has one his parents like it he even uses it at night so they can hear him on the baby moniter. He uses the neck mic and puts the box on the night stand or in his lap in the chair. Between it and the Eyegaze he is happier.

http://www.chattervox.com/
http://www.luminaud.com/amplifier.htm

[georgia]

I was thinking if you were talking legs instead of speech and insurance would only pay for one helping device would you want them to pay for a cane, walker, push chair or wait for the electric chair? That is why those kind of things are in the loaner closets they are short term and cost less.
Same for speech find ways to do and let insurance pay for the high end if they will only do one. You might go ahead and chose the high end so you would have one but some would want to wait to see if eyegaze would be needed and get it. It is a guessing game of when.

As far as using the device it is not as hard as it might look at an hour demo. some of what is in the book is programing the computer part not speech other than setting like speech volume, which voice and how fast it talks not hard to set and I am not a geek. If you saw Etriloguist work with the folders it works to same just more folders to chose from. Resetting the speech to scan and such you would learn when you got there. It just could when you needed it.

[BethU]

I was thinking if you were talking legs instead of speech and insurance would only pay for one helping device would you want them to pay for a cane, walker, push chair or wait for the electric chair? That is why those kind of things are in the loaner closets they are short term and cost less.
Same for speech find ways to do and let insurance pay for the high end if they will only do one. You might go ahead and chose the high end so you would have one but some would want to wait to see if eyegaze would be needed and get it. It is a guessing game of when.

Very good points, thanks! I went ahead and told them to order the DynaVoxV max, but am now concerned about payment. The DynaVox rep said MDA will pay for everything the insurance doesn't ... but the MDA rep told me they only give you a $2000 grant each year for equipment. The DynaVoxV costs over $8,000, and I know my Blue Shield won't kick in for even half. Oh, well ... it will work out somehow!

I do have a loaner Light/Writer from ALSA, but it doesn't speak clearly. I have to spell things out phonetically, otherwise it sounds almost as bad as I do! :-) But the good thing about it is that people on the other side can read as you type, and they usually "get" what I'm trying to say immediately, so I don't have to finish a sentence or use the speak function.

I find the Light/Writer a little heavy to carry around for long in addition to my purse, but it's been helpful for phone calls at home where I can program something in advance then hold the phone to it and press "speak" when someone answers.

Thanks for the input! It's hard to take it one day at a time, isn't it, when everyone keeps telling you you've got to think 6 months or a year ahead, and constantly prepare for the worst?
BethU

[jimercat]

Thanks for all the info Georgia! Lots of stuff to think about and too much stuff to research! LOL

[BlessedDaughter]

Beth, we are at the same point as far as having to decide on a device.
My father and I went to see various devices with the speech pathologist today. She too only showed us the dynawrite, lightwriter and dynavoxV.

I did explain my concern about making a decision now about a device such as the dynawrite or lightwriter, but then would need something more sophisticated later like an eye gaze system - so felt unsure about making a decision now to order something and have Medicare pay.

She politely explained to me that due to my father's bulbar onset, most likely at the time he would loose function of legs and arms, he would be on a ventilator by then anyway, due to bulbar onset. man, that was a slap in the face.

But they did have each item in their lending library. She also said there is a cherry lightwriter that has the bigger keyboard like the dynawrite (my father did best with the big keyboard versus the one on the lightwriter) and she put a call into the DynaVox rep to see if they could send one out to us to try. what I liked about this, is you get the dual display and the larger keyboard.

But we did come home with the dynawrite to try for a while as well. So I feel relieved that while we need some device now to help with communciation, we do not have to make a decision immediately. gives us a little time anyway to think things through.

Must be a relief to have made your decision and know that is in process. Looking forward to hearing how the dynavox works for you.
Bette

[BethU]

Bette ... since you're in California, too, have you heard about the California Relay System? It is for people who can't speak, and it lets the speech-impaired connect to a live operator by computer. The operator dials the call and speaks what you're typing to the person at the other end. The person e-mailing hears both the operator and the callee and participates by keyboard. Don't know if there's a fee (probably), but it sounds like a public service that shouldn't be too pricey.

I've located it on Google, but haven't tried it yet. I think I'll register soon, and give it a try. It's really frustrating not to be able to make phone calls. (Although with the DynaVox you can make phone calls, they said. So that's good.)

It will probably take several weeks for the DynaVox to arrive, but now I'm getting eager to play with it! It's a remarkable gizmo. How is the DynaWrite working out? It looked like a really good machine, very intuitive.
BethU

[ZenArcher]

Has anyone tried SpeechPro? I found it the other day while snooping around. It has a 30 day free trial. It will run on any XP or Vista computer. It includes a system called NeoSpeech which actually sounds pretty good.

I'm not recommending this software in anyway just sharing what I've found. http://www.gusinc.com/speechpro.html

[georgia]

Dynavox has a Phone it that you connect to the device $380 I have not seen it. Look on their site.
There is also a GEWA phone you can operate with the device works like a remote. It is a good speaker phone you need to be within 2 ft to pick up well for the speech to be clear to them. Ours is a loaner they are pricey $1000 range.
http://www.zygo-usa.com/gewafone.html

[fiddleplayer51]

Beth and Bette,
The ERICA eye-gaze rep came to our house to demonstrate the system yesterday. It's fantastic! It's a tablet PC with Windows XP on it. My husband took to it instantly and was soon making sentences. We signed on to get one.
Because my PALS is bulbar-onset, we feel that it is essential to get an eye-gaze system at the outset since Medicare will cover 80% of only one device. It didn't make any sense to get a communication device that would take him to a certain level, but then not work for him anymore when he can no longer type.
We had looked at the ECO 14, but its highest capability is head tracking with a head mouse, and since my PALS neck is beginning to get weak, we felt that head tracking would be too tiring as time went on.
We have a DynaWrite from our ALSA loan closet for now and my PALS uses Etriloquist on his PC and on a laptop as well. He types well now, although his right hand is beginning to get weak. It tires easily. The DynaWrite we first were given had muffled voices with foreign accents that were pretty much unintelligible. We exchanged it for one with local accents! :-D
I also downloaded and purchased some software called NaturalReader which can read the contents of a web page (you can listen to the posts on these forums with it!), read email as in Outlook or even webmail, read Word documents, PowerPoint items, Excel spreadsheets. It installs a toolbar with a play button on it and will read an entire page or just what you've highlighted. There's a free version, but you don't get the toolbars. It costs $49.50 and comes with two natural voices, male and female, which you have to download separately.
The DynaWrite is great for now. He carries it all over the place and it has that handy strap to put over your shoulder, and a nice big solid keyboard. (The one we got had a bunch of off-color four-letter words as hotkeys. %$*@!&!!! That was a surprise! :lol: I guess the person who had it before us was pretty frustrated! :mad: )
Our Medicare supplement insurance will cover the other 20% and ALSA or MDA will cover the $600 unlock fee so the ERICA tablet will have internet access. Medicare will not cover a communication device that is not dedicated (i.e., they don't want you to have internet access :( ) You have to wait for 3 months to unlock it. You can also add switches for environmental controls which costs $495. Again, ALSA or MDA will cover that. The $600 and $495 come out of the $2000 grant available to PALS for a communication device.
Good luck to you both making decisions and getting things squared away. It sure takes alot of study and time...:oops:
Peace,
Jane

[BethU]

[/QUOTE]I did explain my concern about making a decision now about a device such as the dynawrite or lightwriter, but then would need something more sophisticated later like an eye gaze system - so felt unsure about making a decision now to order something and have Medicare pay.
She politely explained to me that due to my father's bulbar onset, most likely at the time he would loose function of legs and arms, he would be on a ventilator by then anyway, due to bulbar onset. man, that was a slap in the face.

Bette[/QUOTE]

Bette ... it's amazing how insensitive people can be around this subject. My neuro #3 who dx me with Myasthenia Gravis back in January said, "It can't be ALS, because with bulbar onset you'd be six feet under by now." And he chuckled when he said it. Of course, that statement was the first thing I thought of when in May Neuro #7 said "It's definitely ALS, no ifs ands or buts."

I'm trying to stay positive, but the cheery assumption of the DynaVox sales reps that I'll basically be totally incapacitated by Christmas and dead by New Year's threw me for a loop. I do have weaknesses starting in left hand and leg and some in my right hand, and can see atrophy happening, but I'm planning to try to hold on to some functionality as long as possible. Especially because I'm a caretaker for my husband, and he has a lot of medical needs and I need to advocate on his behalf with doctors who refuse to do what is necessary to manage pain.

Jane ... thank you for that great advice! There is so much to research and learn just managing the logistics of this thing.
BethU

[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 dx 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]

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]

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]

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]

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 dx 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 dx 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

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

[brendapals]

BethU,

Thanks for the reply. I am going to wait until my hubby is retired and then the fun can begin! I did see a speech pathologist when all of this first started. She talked about the different things that were available, but never really "pushed" about it.

Right now I'm dealing with an AWFUL toothache- it needs a root canal- have to make sure there is no infection before they do that. So my speech is 5 times worse with the bad tooth!

It will get better though! Have a great week and talk anytime,
Keep the faith,
brenda

[BethU]

Ouch!! A toothache is soooooooooo painful. Hope they get it fixed quickly. You've got enuf on your plate without this.
Good luck.
BethU

[brendapals]

BethU,

Thanx so much. Yes, the plate is very full, and with the toothache, I can't empty it very fast! hahahaha Just a little funny-have to laugh to avoid crying sometimes!

Have a blessed day,
brenda