ALS Commuication Devices

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revelee2

Member
Joined
Sep 11, 2009
Messages
12
Reason
PALS
Diagnosis
09/2009
Country
AUS
State
NSW
City
Wollongong
I'm getting to the point with my PBP that I will need a text to speech device soon.

Some of the traditional devices are very expensive in Australia and are not exactly portable.

Have any of you guys out there in PBP land used one of these devices.

Any feedback would be appreciated.

Hope you're travelling well considering the load we carry!

Yours
Revelee2
 
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Re: Commuication Devices

revelee2, first let me say how sorry I am that you are joining the marbles in the mouth club. I am also very interested in the Ipod Touch/Iphone Proloquo2go because of it's promise as an affordable and portable speaking system. I am currently using a Dynavox Palmtop3 (now discontinued) and netbook with speaking software and while these both work I can't put either one in my pocket. We really do need to be able to talk in all situations so I hope that this does work. My question is how loud is built in speaker because if an external speaker is required then the size increases and portability decreases. My speech pathologist told me that an external speaker was needed but the website that you posted a link doesn't show one and I know that the ringer on the Iphone is fairly loud. Hopefully someone can let us know.

Barry
 
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Re: Commuication Devices

BarryG

I tried my elder daughters' netbook and wasn't impressed with the sound quality and my son in law found one which looks promising.

I will order all the bits on Monday and will get an iTouch so I'm not tied to expensive phone plans.

My 15yo girl reckons I should buy her an iTouch too, I said OK, as soon as you lose your voice I'll order it.

Then she gestures at me that she can't speak! Yeah right

When I get it set up I will post a review here for others.

Lee
 
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Re: Commuication Devices

Just my 2 cents.

You might also consider the situation when it becomes hard to use the iphone/ipodtouch as I am sure hands will also give up some time in future. At that point using ipodtouch will be a pain. I am in the same boat as you. Even though my left hand works and my speech is ok, I want to setup a custom AAC for myself now. I am basically thinking of getting a TabletPC. I then plan to use etriloquist for text to speech. TabletPC will also make it easy to use the web browser to browse the net and check emails. I have ipodtouch and its hard to do emails from it (at least for a person like me). Then when my hands stop working, I plan to mount TabletPC in the wheelchair and use a head mouse. The whole setup is going to cost me around USD2000.

So what do others think about it?
 
Re: Commuication Devices

Nishant you make some good points about hand function and the ability to use a small device with a small keyboard. I think that the problem is that we all progress in this disease in different ways. I can pretty much not be understood at all when I speak but I can still use my hands and my legs so I want something now that can go everywhere with me (I can put it in my pocket) and doesn't require me so be sitting down (like my netbook does). The way I look at it is that I know that my needs will change and all of this stuff that works for me now will probably not work for me forever and I then I will need something different. There is no easy solution but at least we have some technology now as compared to even 10 years ago.

revelee2, my ASUS Eee PC 10 netbook has reasonable sound (depending on which voice I use) and I also bought a small battery powered speaker to plug into it and that helps a lot. The link that you posted does look interesting and I will keep it in mind.

Barry
 
Re: Commuication Devices

I don't want to hijack the thread and I can offer no help for hand-held AAC but I am in the process of developing an AAC application. An early alpha is available for download now. We are having ongoing discussions about how to improve speed, usability and functions. If you're interested or have ideas please stop by and share we could really use the help.
 
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Re: Commuication Devices

Thanks for your input, my hands still work fine so while I can use a small device I will. When my hands become dodgy I can offload the ITouch to the kid and try a netbook. Zen, I will have a look at your beta software. I am new to all this PBP stuff but my voice is next to useless now and makes it impossible to participate, hence the urge to try a device.
Cheers
Revelee2
 
Re: Commuication Devices

My husband uses an iPhone and the Proloquo2Go application and it is FANTASTIC!

He used to use Lightwriter, but when his arms got too weak move his hand across the keyboard he switched to an iPod Touch with the app. Later he upgraded to the iPhone (mostly so he can text message his friends and family with the same device...very handy).

The iPod Touch speakers are not as good as the iPhone, and he used a tiny external speaker for it. He has a blog and wrote about a while back with photo and link for the speaker he uses.

I put the iPhone on a lanyard for him and he wears it around his neck.

He only has use of his right hand with limited dexterity in fingers, but his thumb is good. So he holds iPhone in his right hand and types only with his right thumb. He is surprisingly fast at it now. Only problem is when he gets cold, it makes his hands stiff, so we need to come up with a low tech communication device (letter board or similar) for times like that.

I cannot state strongly enough how much this has helped Dave. I don't know what we would do without it. It is a fantastic, low cost, light weight alternative to Dynavox.
Lisa

P.S. He also uses his iPhone to control his computer keyboard and mouse now too. I think the app is AirMouse. There is a info on the blog about that as well.

P.P.S. Every ALS function that Dave goes to, he is an instant celebrity with people wanting to see what he is using. IMHO, this is the start of a revolution in alternative communication devices.


Feel free to send me a PM if you want more detailed info on any of this.
 
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Re: Commuication Devices

Lisa,
Thanks for the feedback on this app., I now feel I've made a good choice and will be able to use this device for some time.

I've ordered the iMainGo2 speaker case and a 32Gb iTouch.

I am finding it so hard now that my speech is gone.

My wife(an Occupational Therapist) is keen to take it to work to show the Speech Therapist.

Revelee2
 
Re: Commuication Devices

Hello Revelee , I 'm using a lightwriter at the moment , the last few days I have found it hadr to press the keys .
I have all but lost my voice now , when it's clear as a bell in my mind , all that comes out are silly farmyard noises .
My OT is working with tech environmental office to get something like a textphone so that I can use the phone , at the moment
nobody understands me .
 
Re: Commuication Devices

Oh , I should have mentioned that the tech team installed an intercom system in my house , and are also making the door remote opening .
xx
 
Re: Commuication Devices

Revelee, Have you joined the Motor Neuron Association of NSW? They provide Lightwriters for FREE to registered members. It costs nothing to join.

My mother sent in her papers yesterday. From what I've been told the regional supervisor will visit and assess her needs, and then she'll get anything she needs at no cost. There might be a wait, but it sounded like that wasn't necessarily the case.

There is also a session on "Living Well with MND" (something like that anyway) in Gladesville in October. It is held over two days, October 19 and October 26. This is for MND patients and their friends/carers/family. The session is also free.

Our services

When I first contacted them I got to speak to the Exec. Director of MNA Australia. She urged me to "buy nothing yourself - come to us first and we'll try to supply you with anything you need".

sesl.
 
Re: Commuication Devices

I have all but lost my voice now , when it's clear as a bell in my mind , all that comes out are silly farmyard noises .

Tich, I love that quote. I have been hanging around with friends in the last few days and I KNOW that they can't understand a thing that I say so moo, quack, neigh and oink are a good approximation of what comes out of my mouth too. A good thing I have my talkers but they are not that easy to use when you are walking or riding in a truck.
 
Re: Commuication Devices

Thanks Sesl,
I'm new to this and wasn't aware of the NSW Motor Neurone Association. But I am signing up this morning. It is very generous of them to supply equipment at no cost. These forums are a great resource.
revelee2
 
Re: Commuication Devices

Its actually a bit alarming that your Partner and her speech therapist colleague, both in fields that are very relevant to MND, didn't know about the association. Makes you wonder how many MND sufferers are out there who are not being connected to the resources available.

I'm taking my mother to the 2-day session in Gladesville next month. We hope to learn a lot more there about what resources are available and how to access them.

BTW - the MNA-NSW website has links to the other state websites. The Victorian website has some really good fact sheets.

sesl
 
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