"locked in" state?

[juliefitz]

Hi all,
Well, mom's right arm (which is all she has left, other than holding her neck up) is dying fast, which leaves us scratching our heads about whats next as far as communication goes. We ordered the fancy DynaVox several months ago, and I has come in-FInally! BUT- now that she is in hospice, Medicare won't pay for it and neither will Hospice(understandably), so they won't ship it. My question is...IF my parents primary insurance doesn't pay for it either, can anyone out there talk about other non-$9,000 methods of communicating? Has anyone gotten an i-Pad? Any luck with that and any software? This form of ALS she has certainly seems to be robbing her of every last ability she has. After she loses her right arm/hand, and she cant talk at all, is what I am assuming is the locked in state. Is that correct? Is anyone out there in this stage...and can you give any advice on how to help mom? We want to do anything and everything we can to help her, but arent sure what to do. Before ALS, she and I spoke 8-10 times a day- what a difference a year can make. :-( I miss her voice. Thanks in advance, Julie

 

[joelc]

I am probably the one who is the closest to being what you would call "locked in”.

Thanks to Barrys advice I purchased a NetBook computer for $300.00, installed a text-to-speech program called NextUp for $100.00, use a typing program called Dasher (free) and use a headmouse I got from the ALS Society loan closet. It works well, and all for under $500.00.
I can still move my head enough to use the headmouse. Barry also recommended an external speaker that has its own power supply for $10.00.

It all works wonderfully and the NetBook computers battery has a charge time of over 8 hours. This configuration can also be done with an eye-gaze device. So being "locked-in is really not an issue if you are willing to embrase the technology that is available and it does not have to be prohibitively expensive.

 

[BarryG]

Thanks Joel, I was going to reply but now I don't have to! I am so glad that the netbook system is working for you, I can still type and my netbook system is my voice of choice.

If your netbook (or notebook, laptop or even your desktop machine) has a webcam you can also use a free program called Camera Mouse to move a cursor around an on-screen keyboard. I have tried it a few times and how it works is you tell the program to take a fix on a part of your face like the end of your nose or the corner of your eyeglasses and as you move your head the cursor moves. I haven't tried it with Dasher but then I am hopeless with that and should practice some more before my fingers get worse.

juliefitz, there are many other solutions out there that cost a fraction of what the Dynavox machines do so no one needs to be speechless because they can't afford a voice. I have a $5000 dynavox that I don't use anymore because my $500 IPod and speech software works better and is more portable. I even talked to my Mother in Law today on the phone using a speaker phone and my IPod, it wasn't the most elegant thing but it wasn't any harder than talking to her in person either.

 

[juliefitz]

Thank you both...I'll start doing more homework I'll let you know what happens!
-Julie

 

[joelc]

Thanks Barry, I was just going to look for a program to make the webcam a mouse! That is the last thing I need! You are a fountain of excellent information!

 

[cukita99]

im like ur mom. i dont have a voice n my hands are bad, but can still use my pinky to type. i also have a doodle board that i use to communicate outside the house.

 

[BarryG]

I also remember a sort of low tech solution involving a laser pointer attached to a pair of glasses. The person would use the pointer to point to letters on a board, I saw a video of it in action but can't remember where it is now.

I guess that set up could also have the added benefit of giving the wearer a "withering stare". Useful for staring down nasty doctors! :twisted::twisted:

 

[halfin]

One of the people in our local ALS support group has had ALS for 20 years. For the last 10+ he has been on a ventilator and lived in the hospital. His wife visits every day. He has no speech or movement below his neck. But he is able to use the computer via head switches - he rocks his head slightly from side to side to select things on the screen. It takes motivation and patience to do this but there are possible solutions.