This is why we dont assume...

[Tokahfang]

How does he do his spelling thing? If he has even one controllable muscle, he could use a scanning keyboard and mouse on a switch access. I set one up for someone else, and I think I could guide you through it.

 

[LizT]

Becky- he uses eye movement to communicate. It isnt through his computer. Its a chart. If he looks one way, we start counting 1-4. If he looks the other way we start 5-7. When he gets to the number that corresponds to the letter he wants, he looks to his left, which means yes. its a very long and tiring process.
I am not tech savy at all. I really appreciate these responses.

 

[Ladyinn]

Liz,

Tim has been researching and talking with a company that is selling software and a headset that will read your mind and type it. I am going to test it in the next month or so. It would be ideal for someone like Ray, if it does what they say.

It supposedly works like the new games where your body is the joystick! Same concept except it uses your mind as the mouse! It is tested with cerebral palsy and stroke patients and I will see if it works for ALS or if the mind images are different for us.

The good thing about it is that the cost for the software and headset will be less than $400 and will be available at most nationally branded electronics stores across the US.

Who knows, could just be another "pie in the sky" dream but I figure, I have nothing to lose testing it and a trip to their headquarters next month is nothing to turndown. It is warm there and cold here --

Hugs,

Diane

 

[halfin]

You don't have to be able to blink. If there is any other muscle he can move, he could use a switch. Or he can use "dwell" where staring at a key for a second or so selects it.

 

[LizT]

Diane, i heard of this a few years ago. This is great! please let me know how it goes!
Hal- i was just going to post what you said. I was just looking at the Dynavox website and saw the "Dwell" option. this is great.
Every single one of you is helping my PALS find his voice again after 6 longs years.
You dont know what this means to us.... thank you so much.

 

[trfogey]

Make sure that you try both ALSA and MDA loan closets, Liz, if you have both available in your area.

Additionally, see if your state has an assistive technology program or agency that also deals with computer assistive technology and AAC (assisted and augmented communication). The ALSA or MDA social workers should be able to tell you that answer, but it won't hurt for you to do some looking for yourself.

Finally, if your PALS is on Medicare/Medicaid/VA, those agencies may pay for an eyegaze system, but you'll need a doctor's prescription for it.

As Tokahfang says, there are further alternatives that be used. The ALS and MDA reps should be able to get you started on the right path.

Best of luck to you and please let me know if there's anything I can do to help.

 

[LizT]

trfogey- You have no clue how much i appreciate that. Really.
Unfortunately, he DID have medicare- but his POA just switched him to a private insurer last month.
Do you know any info on that? I mean if private companies help pay? I suppose it depends on the company and we need to call them and find out.
I take it the MDA has a website that I can go on to find out who to contact?

 

[joni51]

Liz I hope he gets something that he can use. Diane that would be very interesting. Bruce's speech is getting bad, it has went so fast that we never got anything to record his voice, but I am going to be needing advice on where to start.

 

[rose]

Liz, I am so glad this came up in conversation for you with your sweetheart. You're right, it is an excellent example of why we should never assume. I hope you're able to get going on this with no delay. Wow.

 

[trfogey]

trfogey- You have no clue how much i appreciate that. Really.
Unfortunately, he DID have medicare- but his POA just switched him to a private insurer last month.
Do you know any info on that? I mean if private companies help pay? I suppose it depends on the company and we need to call them and find out.
I take it the MDA has a website that I can go on to find out who to contact?

You can probably get the information for your local MDA office from the main MDA site at mda dot org.

Yes, many private insurers will also pay for the technology. You would have to check with the company of course, but given that your PALS was shifted from Medicare to this plan recently, there may be some pre-existing conditions restrictions that come into play here. Your PALS should still have Medicare -- don't think you can ever lose that -- it's just secondary to this new private insurance plan that your PALS was added to be by his POA.

 

[kelly]

I am in awe by all the amazing outpour of love and support. No person with ALS should be without a voice. Liz, I am thrilled beyond
belief that you are researching this option. I sent you a note with my numbers to discuss the eyegaze system. Call anytime......day or night...collect if need be. We are here for you! All our love, Kelly & Andrew

 

[LizT]

Trfogey- you are correct. I misunderstood. I believe he still has medicare and his POA switched his private insurance. Would we try to get both insurances to cover the full cost or can we only go with one of them? I dont understand how insurance works. I got your PM and just wanted to tell you how much I appreciate all you are doing to help.

Kelly- you are right. this is amazing how much you all have jumped up to help out my PALS. there are no words to express what this means to me. and to Ray. Once we get this taken care of, I will let HIM be the one to come up with the right words to appropriately thank all of you. You are giving us hope and a chance at a new life together.

Everyone- Im speechless. I would love to kiss every one of you right now. you all deserve an award. much love. and many thanks.
liz

 

[jmchilindrina]

My mom uses the eyegaze and controls it completely with her eyes. She has no head movement. She uses her eyes to control it and blinks when she gets to the letter or word she wants to type. She has actually gotten pretty fast at it.

 

[LizT]

I just went on the MDA website. It says to register, you have to make a clinic appointment. does anyone know if this is correct?
What will we need to register? I was hoping we wouldnt have to pack up and drive all the way there. is it possible to just register over the phone or emails to receive their services, or do we need to go there?

 

[abbas child]

Liz, see if there's a phone # for the MDA and give them a call. If it's the same now as in '07, I just had a doctor's note with a diagnosis on it to send them. Mailed it in, I believe, but a fax might have done. I'd call though and find out the facts. No need to be discouraged yet.