communication

[JennyC]

I have a feeling that my mom won't be able to speak much longer....how do you communicate with them especially if they don't have an eye gaze system and aren't able to use their hands for a touch pad?

Do you sit there and blabber to them about your day? What if they want you to shut the hell up? How do you know?

 

[Nikki J]

You can download speakbook for free. My sister had eyegaze but before that she had a very simple letter chart. We would run down the columns with a finger she blinked when we got to the right one and then went across until she blinked for the letter. You can often get the word before it is fully spelled out. In situations when she was not up to either that or eyegaze and needed something We used drilldown questions that were yes/ no and she blinked for yes. It was often a comfort issue so it might start do you need repositioning yes do you need us to move your body yes above the waist. You get the idea. Get out of the habit or either or questions that are not yes-no. Losing speech is horrible. I am sorry

 

[affected]

Communication charts - you can use multiple charts for different things.
An alphabetical chart is best arranged with 5 letters per line and the vowels separated.
I numbered the lines which helped shorten the process.

Picture charts can be great for describing needs, much faster than spelling things.

Word charts can help too - groups of words and phrases to speed up the process.

 

[FamilialALS?]

With my mom being bulbar onset, speech went by the wayside rapidly. If your mom is social and would enjoy conversation before the onset of ALS then I would assume she would like to still hear you talk and "feel" connected to you in that way. My mom was not really talkative or social by the time her speech went (and had FTD) so I didn't feel pressure to fill silence. Yes and no questions were the basis of our communication. She could nod and shake her head, but often I got a round about head rolling because of the FTD.

Keeping a predictable routine helped me anticipate what she might need.

 

[T.Low]

YouTube search Jason Becker Communication .

 

[lgelb]

Apart from eye gaze, many people can use an alternative mouse for all kinds of computing, including the speech apps (and this capability is built into computers, so no further apps are required).

These include foot, cheek, tongue, lip, head and twitch switch options. Probably the SmartNav ($500 head mouse) is most popular but the solution should be tailored to her capabilities and progression.

The iPhones/Pads have the ability to use the head as a switch built in, using the camera function, so she could try it to get an idea. Of course, you need to mount the device in a good place.

 

[affected]

Great video, Jason's dad was really good at intuiting what he was saying.
You can also attach a little infrared pointer to a PALS head and let them use it to point to letters if they have head movement.

I had a chart I made for Chris, similar principal but different layout.

I did the letters in lines with a line number.
I had the vowels separate in a corner box.

Chris had FTD, and he would not have been able to sit and concentrate like Jason could.

I would hold the chart up, and would talk him through it.

So I would start by asking Vowel? If no, I would say 1? If no, 2? down the line.

Then I would read out the letters on the line (only 4 per line), slowly and he would indicate the right letter.

I always had a note pad beside me as I would have to write down as we went as there were a few times when it was very slow I would suddenly forget what we had so far - very embarrassing and he would become so frustrated and angry he would stop trying.

I could intuit as well. So if he got 'th' I could usually guess by the position and other words if he wanted the, this, then, that etc. I did not attempt to intuit unless I was fairly sure as it would distract him if I had to start just guessing.

We couldn't go at anywhere near the speed of Jason and dad, but I got the feeling they were both very good at the system and Jason has full cognition.

That is where another chart of words and one of pictures sped things up.

We actually took our own photos to make the picture chart, and made each one a silly photo. Chris enjoyed making it, and so he actually would use it. We did things like a photo of him with the peg tube in his mouth, meaning he wanted a peg feed. We did get a laugh as there were no words and we had to teach the chart to the staff who came here. The picture for 'get Katrina' was a photo of me hiding behind my bedroom door :lol:

If Chris was indicating a need I could hold up the picture chart and his eyes would travel to the picture he wanted and I could see fairly closely which picture he was looking at.

Towards the end I made up quite a few charts. When he went into hospital with aspiration pneumonia, I made a word chart specifically to his common needs in there.

When he became bed bound in his last days and his care really was totally palliative I made another couple of charts and we weren't doing alphabet stuff at all.

Chris also had an iPad with a jelly bean switch and a text to speech app. Sadly with FTD he just couldn't spend the time learning it - he couldn't concentrate for long enough and would just get angry that it took him so long to work with.

I do encourage PALS to start learning some non-verbal ways to communicate, especially any electronic helps before they need it. I got Chris the iPad just after diagnosis with the idea that learning it early would mean it would be easier to use when needed. That didn't work because of the FTD, but for any PALS who wants to keep communicating well it can make a huge difference.