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Old 26-06-15, 05:26 PM   #1
jaq
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Default Communication aids

Hi

I just had an interesting meeting with the speech and language therapists as my brothers communication had been a bit down hill of late .

We are carrying on the the exercises she has given him but we also spoke about communication aids for the future .

She showed me an i pad and several applications which may be useful as communication deteriorates which I know of is what will happen .

I think a course might be useful to see what apps are good and how they might be used with HD patients as she said she mostly wortks with Motror neurone disease and Parkinson's who have some similar and some different needs .

I wonder if anyone has any experience in using these aids at all and also how the funding is organised as of course hi tech equipment is more expensive than a paper system .


From the chat we had I can see how it might be useful to begin to incorporate some of the activities and build up a library of likes dislikes etc etc as it would be better to do things before communication becomes more difficult .

I am sure wonderful possibilites are available at the touch of a button it is just finding the right button and right applications that work best with HD .

Any experience would be much appreciated ,

Many thanks

Jaq
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Old 26-06-15, 09:25 PM   #2
Allan
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Default Re: Communication aids

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Hi Jaq

S has had the same offer from his SALT – but he’s missed the two appointments so far. I understand that, here on the South Coast, the SALT service has a number of iPads which are offered for use on a loan basis.

I agree with you that such an opportunity must be grabbed early on before speech and other hd-symptoms kick in. As far as I am aware most of the apps are American and many of them are for children within the autistic spectrum. They have colourful pictures and icons and seem to be “fun” to use.

FREE AND INEXPENSIVE APPS FOR PEOPLE WHO NEED AUGMENTATIVE COMMUNICATION SUPPORTS

Have a look at this software: Proloquo2go. Although it is currently being aimed at children it seems, to me, more appropriate than the very expensive Liberator products. An iPad with Proloquo2go would be approx. £700 – or less.

Assistive Communication Apps in the iPad App Store

Top 10 Alternative & Augmentative Communication (AAC) Apps for iPad

A touch screen program\app would, most probably, be a bit dodgy too in the later hd-stages.

So, get stuck in early. You’re exactly right too about learning about the different apps and how our hd-individuals might use them. They would have to be personally programmed\adapted to each individual’s needs.

We probably need something between Tony Nicklinson’s [the Locked-in syndrome guy] white board & pens and a Stephen Hawking all-singing all-dancing contraption.

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Old 27-06-15, 04:10 PM   #3
Trish
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Default Re: Communication aids

Quote:
Originally Posted by jaq View Post
Hi

I just had an interesting meeting with the speech and language therapists as my brothers communication had been a bit down hill of late .

We are carrying on the the exercises she has given him but we also spoke about communication aids for the future .

She showed me an i pad and several applications which may be useful as communication deteriorates which I know of is what will happen .

I think a course might be useful to see what apps are good and how they might be used with HD patients as she said she mostly wortks with Motror neurone disease and Parkinson's who have some similar and some different needs .

I wonder if anyone has any experience in using these aids at all and also how the funding is organised as of course hi tech equipment is more expensive than a paper system .


From the chat we had I can see how it might be useful to begin to incorporate some of the activities and build up a library of likes dislikes etc etc as it would be better to do things before communication becomes more difficult .

I am sure wonderful possibilites are available at the touch of a button it is just finding the right button and right applications that work best with HD .

Any experience would be much appreciated ,

Many thanks

Jaq
Hi Hun

Communication tools have moved on a long way from when I got Steve a Lightwriter. It's fair to say I was his communication tool and nothing on the market, then or now, can work as well as having someone close to help understand/interpret and M is lucky to have you.

The IT route was always a worry for me. I know myself from using even the most basic of phones that it can be very frustrating when knocking keys/swiping things inadvertently means the wrong message is typed/conveyed and we all know how fine motor skill deteriorate over time.

Had this company been around, or had I known about them at the time I would have actively looked into how they could provide equipment and guidance. They not only work in the IT area of communication aids but have basic stuff like simple cards. Just gettting Steve used to a simple "Yes" and "No" card would have been wonderful as time passed.

May be worth looking into these guys - Talking Mats.

http://www.talkingmats.com/

I will forward you an e-mail I got where I asked if they had done any HD related studies.

As for funding of SALT items. It's the usual postcode lottery issue I'm afraid. I had to wait so long for the budget to be available for Steve's equipment I ended up making a business case (proper Civil Service Buying ethos here) and make a part payment as a donation to cover the shortfall. Call me if you want more info.
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Old 05-07-15, 07:02 PM   #4
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Default Electronic Assistive Technology

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Hi Jaq

I’ve been doing a little digging and …..

The Royal Hospital for Neuro-disability provides an electronic assistive technology [EAT] service. It's made up of a team of healthcare professionals who provide EAT equipment for patients and residents within the hospital, as well as for people with disabilities living in the community or at other hospitals or units.

Equipment includes:
  • communication aids
  • computers and software
  • switches and other access devices
  • powered wheelchair controls
  • environmental controls
Have a look at this: Assistive Technology for Complex Disability: Communication & Control

Slide 6 lists Huntington’s disease and if you scroll down it’s obvious that all the IT knowledge is at the RHN.

Augmentative and Alternative Communication [AAC ] is interesting but you’ve got to trawl through the bullet points to find relevant stuff.

AAC Knowledge website is another one to trawl through.

Directory of AAC Suppliers

I’m surprised that the HDA haven’t picked up on this important communication need that our hd-family members could use to enhance their lives when speech becomes a major problem.

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Old 02-10-16, 12:15 AM   #5
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Default Re: Electronic Assistive Technology

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Hi Jaq

I sound as though I'm repeating myself here - but I've just come across this:

iPad Apps for Complex Communication Support Needs: Augmentative and Alternative Communication (AAC)

I haven't had the time to look at any of them yet. The only one I am acquainted with is Clarocom which is similar to ClaroSpeak Free

They do vary in price from the free one above up to £200 for Proloquo2Go. How we get the best option for our guys I really don't know. I supposed the SHDA's must have come across a variety of communication aids - although SALTs must have the best knowledge, I guess.

I really need to be getting S to learn to use one of these apps b4 it's too late as he has a regularly increasing slur and his speech is becoming less able for him to pronounce and me to grasp, therefore increasingly frustrating for him.

.... . .-.. .--. [Morse Code translator]


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