PALS Communication Methods

[affected]

sorry Neil, a bit tardy in my replies whilst away.

In settings find accessibility to get the options for touch anywhere. I don't have mine here with me to check, but you can google it too and get step by step instructions.


The jelly bean switch http://www.spectronics.com.au/product/jelly-bean-twist


The apple TV https://www.apple.com/au/appletv/

Note, most new smart tv's now include something similar to the apple tv that works for most tablets and smart phones.

 

[nebrhahe53]

guess I'm iPad ignorant. I went to settings accessibility but couldn't figure out how to set up stuff. When I tried touch the screen went crazy. Couldn't figure out how to control

 

[affected]

sorry Neil, give me a chance to get home and I'll send you something more comprehensive. It worked well, very similar to using eyegaze equipment.

 

[affected]

Neil here you go:

Settings
General
Accessibility
Under physical and motor heading
Switch control
Switches
Add new switch
Screen
Full screen
Under system choose heading
Tap

Now if you have trouble with it I found that to turn it off and you can't get to it choose
Settings
General
Accessibility
At the top VISION heading
voiceover, turn on

This turns the switch off, then you can turn voice over off

I haven't upgraded to the latest version of the IOS, it's a little bit buggy but it does work, and would at the least get you started and give you an idea of what it would be like if a switch was used instead of the tap anywhere that this turns on.

Hope that helps, I know it looks a bit to follow


Here is a you tube on setting up a jelly bean switch
http://youtu.be/TH540kuBDwo

And some more stuff on using switches
http://www.spectronics.com.au/blog/...sibility-and-access/switching-it-up-in-ios-7/

 

[nebrhahe53]

Thanks Tillie. To be honest, it seems hard to me to get this set up. I have never been good with software. Guess Ill have to learn. Was Chris able to use the button or was he too paralyzed at the end for that?

Thanks.

Neil

 

[affected]

Neil, it does take patience and I know that I read up a lot before setting it up for Chris, and spent a lot of time working through it with him.

Chris had FTD so it was harder for him, he didn't have the determination to communicate and should have started learning everything early. I got it all and ready to set up early July last year when he was still speaking fairly well if one would take the time with him, but he just played fb on it really rather than learning to use it properly. He mostly just read stuff on fb too, he didn't even try to communicate out much. I asked him one day, is it helpful and supportive for you to talk to other PALS on fb? He said: it's interesting. I said, but is it helpful and supportive for you? He shrugged.

He stopped trying anything on it about a month before he was set free, partly because he had the aspiration pneumonia and he really did not recover much from that at all.

He had a little movement in one index finger at the end, but with the jelly bean on his lap he could move his hand enough to tap it.

That's why I encourage PALS to start learning all this as early as possible. If you can do a lot of the learning before you can't communicate at all, then you aren't suddenly 'forced' to learn it. Max is doing this. He can still speak quite clearly (I know this after his ice bucket video) but is getting himself prepared with technology before he can't speak at all.

So for the most part we were forced to make photo communication charts and alphabet charts. The saddest part of this is that communication then only really becomes a matter of expressing needs - cold, hot, hungry etc. There is no good way to 'talk' about anything.

The text to speech apps allow you to bank up lots of phrases and stuff so you can use them again, making it easier to actually express yourself.

It's a huge reason I so value talking here with you PALS - it gives me some kind of relief to know that not all PALS suffer FTD and can engage in conversation, learn, offer support and still have some connection to others.

 

[MaxEidswick]

>He can still speak quite clearly (I know this after his ice bucket video)

you sweet talker, you!

 

[gooseberry]

Jim, At clinic yesterday the website we got was ModelTalker Speech Synthesis System The speech pathologist said it takes about 8hrs to record everything needed for the voice banking. I am going to encourage my husband to do this so my son will be able to hear his voice in the future. Best of luck. Steph

 

[gooseberry]

P.s. Jim the slp did mention about all the apps on ipads etc and said they were worth looking into short term. She also mentioned that it took roughly 3 mo for approval for a communication system in FL so she advocated for applying now....especially with the new medicare rules. They took voice samples from my husband and someone will com eto th ehouse and evaluate him for tobii/dynavox to see what is the best fit. She also explained you should always get a system that allowed for eyegaze technology...either included or as an add on.

 

[JimInVA]

Thanks, gooseberry, for the link! We finally have our appointment with a new, local neurologist... one whom I already know advocates for eyegaze technology. We have our first appointment with him on Wednesday. I also understand that he runs monthly clinics wherein he takes an entire day and brings a slew of specialists in for consultation. Looking forward to the availability of new options.

And thanks to all of you that have contributed in this thread. Having some knowledge of both technology and terminology will make it easier for me to ask questions and understand the answers.

Jim

 

[nebrhahe53]

Gooseberry I did the model talker synthesis and the voice comes out computer like but it does have your intonations in it. You then have to type in phrases into the computer and the voice will speak the words. I don't think they have software for ipads yet.
I am also recording messages on my ipad in my own voice for family members so they will have something to actually hear in my real voice.
The model talker in my opinion is good if you still have hand use after you lose your voice. Once you lose your hands though I dont see what good it does you. With this damn disease you lose everything....

 

[gooseberry]

Nebrhahe53 thanks for the info. The slp didnt explain the computer voice part. I think I will still encourage him to do it but perhaps make some voice recordings on the computer or flash drive in his own voice. Its got me thinking...

 

[JimInVA]

We met with a speech therapist, yesterday. We discussed our determination for staying ahead of "need" and for gaining access to a communications device PRIOR to its actual need. After an hour of discussion, she had us sign a waiver to allow a medical company to enter into the process of obtaining a new TOBII eyegaze computer for my PALS use. She actually gave us the choice of Tobii or Dynavox... recommending the Tobii as a slight favorite. If I understood correctly, she also implied that Tobii had just bought out Dynavox... so there could be some future merging of product lines. So excited with our ability to continue moving forward in such and informed manner. OUR THANKS TO EVERYONE WHO PARTICIPATES HERE FOR ALL OF THE AMAZING INFORMATION. I'm beginning to feel more informed than our care providers...

Jim

 

[patrick123]

I believe in keeping one step ahead of everything. My voice is gone and my Hands are very week. I got a dynavox back in July with the eye max there is a leaning curve and you need to practice with I'm not an expert yet but I learning and getting better. I have to use my iPad for the internet. Because of the Medicare rules and they are cruel for anyone who depends on these devices. And not just those of us who have ALS but also spinal cord injuries stroke victims the list goes on. The last I heard Medicare is delayed complete implementation of the cruel rules. But you our Congress the only thing they know how to do is repeal the ACA and name bridges and highways.

 

[affected]

Patrick are you using a switch for your iPad?

I'm hoping IOS 8 is going to have some eye recognition ability. Any apple folk here know? It's about to be released.