Tips on Communicating?

[Brother]

Hi,

Our situation has taken a sudden turn for the worse. I last spoke to Marsha 4 days ago via Skype without problems. Yesterday our sister turned on Skype for me, and I watched as Marsha's communication capability was limited to sporadic moans. I was able to make out a only few words over 30 minutes. Those words, which did not express a complete thought and left us guessing, came with great struggle.

I asked about communication strategies, blinking, tapping, pitch (of the moans) to get some kind of system for yes/no communication. They said they tried everything and have been frustrated each time.

Complicating this problem is the sudden turn. While I spoke to Marsha four days ago, it seems the turn was overnight. We do not have any of the computer equipment for communication and it looks like we will not be getting such tools. And even if we could hit the local loan closet, I was told coordination is from severely limited to none at all.

I'm posting here looking for ideas or quick solutions from experienced members regarding communication. We thought we were on top if it, but we didn't see this coming.

Thanks,
Paul

 

[brooksea]

Sorry, Paul. I can only suggest calling ALS Guardian Angels if the local ALSA or MDA doesn't offer any help. It's a shame. Maybe someone else will have a better solution.

 

[cervus]

Paul. This is an awful disease. Sorry about the rapid turn for the worse. If you're not able to get any technological devices (an IPad with Proloquo2 works really well although I don't know what your sister's hand strength is like), then try letter boards. You can find them on the Internet and can customize them to suit your sister's needs - different categories with names of people, meds, personal needs, etc. If she's still able, until you can make up some letter boards, she can write letters on her thigh or something. Again, I'm not sure what stage of disease your sister is in. Take care. Yasmin

 

[Alyoop]

Can marsha type?. You could try chatting by typing in the interim if she can manage

 

[trfogey]

Sorry to hear that this has happened to your sister, Brother. The traditional method for communicating in these circumstances is the old-fashioned letterboard to spell out the keywords. I've PMed you some links to a couple of well-designed letterboards that your sister's caretakers should be able to adapt for use with her.

 

[Brother]

Thanks all, we are continuing to look for a solution. Your input is greatly appreciated.

 

[LizT]

can she move her eyes from side to side? this is how my pals says yes or no. to the left is yes. to the right is no. looking up can mean maybe or i dont know.

 

[KKay]

If she is able to use her hands to type, there are free programs that you can down load to her computer or laptop. Also, my understanding is if a patient is less than 70% intelligible when speaking, determined by a speech evaluation, Medicare will pay 80% of eye gaze technology.

 

[Brother]

Hands are proving to be a problem Kay. Thanks for the thoughts.

 

[Ms. Pie]

https://www.alsforums.com/forum/tip...ech-eyetracker-device-s-free-well-almost.html

Here is a thread with a link to an inexpensive and easy communication tool. No hands or voice is needed. Hope it helps Dear! You're a good Brother.

 

[catcaniac]

Don't know what she can move but my husband uses a grin for yes and moves his chin for no. It is working so far even though the grin is less pronounced. Basically, if he moves his chin then we know it is a "no". At least worth a try. I know my husband has great difficulty using his eyes effectively.

 

[Brother]

Thanks, Cat. I've passed on these tips to the sisters who are taking care of Marsha. The input here has been very helpful ... thanks to all!