Feedback on Augmentative and Alternative Communication please

[Dankhl]

I’d really appreciate your experiences on how you are communicating as a caregiver with a patient who cannot speak.

We were introduced to 3 forms -

1. basic printed flip sheets with phrases

2. Using a intermediary device - eg push that replicates a mouse to select and generate speech

3. Tobii eye gaze

There are so many models out there as well as permutations in combining the software and hardware

It’s been exhausting just with the caregiving - and I’m not tech savvy but my husband likes to play simple games eg sudoko and I’m not sure which set up allows for communication and games

He can’t talk with and has very little movements that can be erratic

If anyone can recommend what they’ve been using with some success - software and hardware - I’d be so ever grateful

Many thanks in advance

[Hidden]

Everyone's different I guess.

I think it comes down to energy levels, eye gaze, dexterity and ability to process language. Dad couldn't manage any of these consistently so we went to: yes and no to short questions.

Blinking and squeezing a hand for yes or no.

After that became inconsistent too, we went to a slight nod and facial expression - peaceful or frowning. And also using emotional expression in his eyes.

It was easy for people that knew him well to understand a lot from context. Kx

[Dankhl in reply to Hidden]

thank you very much. Yes it seems to be headed that way eventually

My husband greatest fear is feeling ‘locked in’

Could I please ask if your Dad had any movement in the later stages

Was that a similar concern for him and the family?

Apologies if I’m intruding I’m really so confused and worried

Again thank you for the reply

[Hidden in reply to Dankhl]

Thank you that's kind of you, I don't mind sharing our experience if it helps. It's always worth remembering that it's a 'pick and mix' condition - everybody will have a slightly different mix of symptoms.

I know it's scary when you don't understand what will happen. I guess like you say, it's sometimes possible to guess the direction in which things are heading.

Dad never got fully 'locked in'. Yes his communication was limited at times, but there was never a time where we totally lost connection with him, if that makes sense. So I would cautiously encourage you to try not to be too afraid about that possibility.

In later stages he was still able to move his head a little bit and he could move his arms - one of them well enough to point at parts of his body.

I think a lot of it was to do with muscle atrophy - ie: not being able to maintain muscle strength (because of faulty brain signals, and energy levels.)

Sometimes if the person is comfortable with it, you can move their limbs gently around for/with them, to maintain a bit of mobility.

We just all kind of decided to deal with one symptom at a time, as they came along.

Yes, there may be times when you feel that all you can do is just give them all your love, but I really know they will feel the benefit of that.

Please feel free to continue posting to the forum if you have any worries, as everybody is here to support you, and each other. 🧡

[Dankhl in reply to Hidden]

you’ve been a godsend. I thank you from the bottom of my heart. 

Your information is so helpful and consoling 

My deepest appreciation …always

[Polesden]

as the sufferer I wld say a hug works wonders!!