To anyone w/ speach probablems
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BethU
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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
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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.
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
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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 $$.
Thanks for your feedback.
BethU
The Dynavox rep didn't come out and say it's only for wheelchair use, but that is the only thing I can see it used for. I liked the programmed speeches for using it with a phone. ("Please be patient, I'm speaking with a computer,") etc. (Of course, you can program them in yourself.) I guess it's better to think further down the road, since you only get one paid for.
I asked about the eye-gaze capability, and the rep said it has ports so you can plug such devices in as they become available or needed.
Someone on this thread mentioned the Etriloquist (sp?), which is a free software program that does the same things. I looked it up online. Maybe that's a solution for now. Buy a light-weight portable computer and install that program for portability, and get the DynaVox for down the line. Of course, that's a lot of $$.
Thanks for your feedback.
BethU
georgia
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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
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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
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
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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.
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
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[QUOTE=georgia;48755]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.[/QUOTE]
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
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.[/QUOTE]
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
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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
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
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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
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
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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
I'm not recommending this software in anyway just sharing what I've found. http://www.gusinc.com/speechpro.html
georgia
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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
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
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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! )
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...
Peace,
Jane
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!
)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...
Peace,
Jane
BethU
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[/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 diagnosed 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
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 diagnosed 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
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