communication devices

[jsmida]

Hello out there,

My mother has bulbar onset ALS so her speech is almost gone since being diagnosed last November. I am attending a support group and we were discussing newer communication devices. My mom does not want anything to do with typing like on a computer. I know there are deviced out there that use the eyes only.

I was wondering if anyone out there has a device that is working well for them, what it is and how it works.Also if you could mention the name of the device.

Thank you everyone!
Julie

[BarryG]

Hello Julie, I am sorry about your mom. My speech is also very bad and I now have to use a speech device to even talk to my family. When your mom says she doesn't want to type does she mean that she isn't able (or willing) to use a keyboard? There are devices that use eye tracking for those that can't use an actual keyboard, you can look at what is available from Dynavox (just g oogle it) and I know that there are several members on this forum who use them. I have a couple of devices, I have a Dynavox Palmtop3 talker which is small and portable and I can either type words and phrases or select from various programmed words and phrases. This machine requires the use of a small stylus which may become difficult when my hands don't work well. The other device that I use is a 10" netbook with speech software. It is not as portable as the Palmtop but because it has a full keyboard I can have and be part of a conversation again rather than only being able to communicate my needs. And it is a LOT cheaper.

I know how awful it is to not be able to talk so I hope that your mom can find something that works for her.

Barry

[BethU]

Julie ... I'm so sorry for your mom's diagnosis. I understand a little bit what she is going through, and it is hard losing your speech.

I use the DynaVox Vmax, which can be set up for "eye gaze" technology if you want. The advantage that it might have for your mother right now is that it is mostly a "touch screen" device. You can type and be part of a conversation if you like, but you can also just touch buttons on the screen with pre-programmed phrases.

Mine is hooked up to the telephone, so I can make calls or answer, "talk" and hang up just by tapping the screen with my finger. About 90% of phone calls can be handled with my phrases and I don't bother to explain to people that I'm on a computer any more. They are unaware they're talking to a "robot," as our conversations go very smoothly.

Being able to handle phone calls has been very empowering for me and the DynaVox has really ended the feeling of isolation you can get without speech. I also use a little portable device called the LightWriter ... I love it! ... but it is all typing (you can program phrases in, but you have to remember what letters you stored them under) so your mother probably wouldn't be interested.

Good luck.

[boblandstar1]

See THREAD http://www.alsforums.com/forum/showthread.php?t=8213

[pamnandy]

My two cents: We have an Erica, it's an eye response computer. You have to be kind of open to technology to use it. There are actually newer things out there. If your mom used what we have, she would still be "typing" but with her eye, using an online keyboard. It has a word predictor, which can be helpful at times and annoying at times. We got to see options before we chose. We were referred to a speech therapist through our ALS doctor.

[Julius]

I am attending a support group and we were discussing newer communication devices. My mom does not want anything to do with typing like on a computer. I know there are deviced out there that use the eyes only.
Hi Julie,
have a look at E-Triloquist. It is completely free and it can be controlled by anything that mimics a mouse, you can also use it on a touch-screen netbook.
There is a lot of information on their website.
Good luck
Julius

[Kate]

Hi Julie,
My friend never liked computers either. I brought her a white board two years ago when she lost her ability to speak and that is what she is still using. Even with her fingers beginning to stiffen she can still grasp the dry erase pen because it is fatter than a regular pen and her hand writing is still very legible. The pen travels smoothly over the white board without any "drag".
I originally bought a good one from an office supply store and it didn't erase very well. Then I went to Walgreens Drug Store and bought a "cheap" one and it erases just fine!
I know there are a lot of communication devices out there. Maybe one of those other devices will work for your mom if she is willing to give them a try, but this would be a quick alternative while you are investigating other options.

[pamnandy]

I just love low tech solutions. How very wonderful that your friend could use a white board like that! Sure does make life simple, and if you need to yell, you can write in CAPS!!!

[namita]

Hi !
Even my mom used to write ona white board and registers if something was important enough to be kept for longer time. When she lost her writing ability , we started letting the air out of her trach tube to let her speak for sometime every 12 hours. The voice was a little muffled but understandable. Then came a time when this became impossible . In India chronic care and all the tech savvy stuff is not so easily available . Also there is no govt or insurance funding for the same. We developed a simple chart of alphabets and my mom just blinks at various letters and we make words out of letters , then sentences out of those words. A little tedious but works well for us. The caregiver and the patient needs to be very patient for this methodology. Recently i discovered some eyetracking devices on the net . I dont know how practical and affordable they will be, but plan to investigate all the same.
Take care
Namita

[Julius]

I just love low tech solutions. How very wonderful that your friend could use a white board like that! Sure does make life simple, and if you need to yell, you can write in CAPS!!!
Is this supposed to be a joke? If you can't yell just write in CAPS? And if you are in the mood of crying - just write in - what? Wet terms?

[BarryG]

Julius, if you cant say anything nice don't say anything at all.

[tdamess]

julius you sound very bitter but i agree with barryg

[GlenBrittle]

Hi Julius,

You failed the Netiquette course didn't you . Yes all caps is yelling.

No joke . And you have to show us some WET TERMS !!!!!

Glen

[BethU]

Is this supposed to be a joke?

Uh, yes, Julius ... that is indeed something that's called "a joke." :razz:

Better brace yourself ... we joke a lot on this forum.

[brooksea]

Appreciate what you do Julius! But you have to get into the minds of those that deal with this daily - caregivers as well as patients.

Thank you for visiting this forum! It will teach you many things about the resilience and spirit of pALS.

Yes, it was a joke. We have to joke for Gods sake or we will go crazy! Oh forgot - most people think I am!!!

[Al]

Julius. I think Pam's message just lost something in the translation. Her husband was 6 days from dying from ALS. I don't think she was in the mood for joking. Caps in north america are considered yelling. If someone could write in lower case then they probably could write in UPPER CASE TO MAKE A POINT! OR YELL AS WE DO ON THE INTERNET.

AL.

[thelma313]

I don't think you're crazy.... unless by crazy you mean helpful, inspiring, strong, funny and sassy. ;)

[pamnandy]

Thanks, Al, that is exactly it. Those of you who don't have a voice still need to "yell" even if you can't be heard. At least this was the case for Andy. When he was trying to make a point or be firm with the kids, the caps lock would be engaged! The "voice" that his computer used would emphasize capital letters as well, so when he had to make a point, he would capitalize it. Otherwise it would sound flat or monotone. Blessings to you Julius...I would never intentionally offend anybody.

[BarryG]

Pam, I sure wish that my "voices"would show some emotion. I have a few different speech devices and all of them just say the words like some kind of robot. Which is OK but sometimes it is nice to be able to put some FEELING into your thoughts. A total aside here but I also really miss being able to do accents, it was so much fun to put a spin on regular conversation by talking like someone from somewhere else. Even as a kid I was fascinated by accents and would practice any chance I got.

[Tich1]

Hello , I use a Lightwriter , and find it most helpful , though sometimes by the time I've typed my sentence it's irrelevant ....lol
I get what you're saying about the no emotion in the voice :-)
xx

[BarryG]

Hi Tich, Oh yeah, there is really the whole time delay and conversation moved on thing happening no matter what you use to talk with. One thing that I have started to do is put the context in my sentences so that if others have moved on to another topic you can bring them back. For example I will put the person's name in rather than just saying He or She. That way everyone knows who I am talking about if I make a comment. It does take a little longer but not much and it helps a lot. My family and friends know that a conversation with me can be slow and they have gotten used to the idea of the topic bouncing around a bit.

[Tich1]

Hi BarryG , thank you , yes , my family are used to that too , though sometimes if I know the conversation has moved on I just press the clear button . x

[BarryG]

Me too, sometimes it is just easier to let it pass.

Ps, I love your avatar, it is so cheerful, reminds me of Wallace and Gromit.