Communication

[LNKa]

Dear friends,

I take my hat off to every one of you who are reading my post on your eye tracker or a similar electronic device.
We couldn’t do it, both (my husband and I) young people with IT background. My husband illness was progressing very quickly. We didn’t even manage to adjust the Smart navigation camera, which detect the movement of the head, because my husband has lost ability to vertical move his head very early into his illness. He has also not managed to use a kind of helmet for fanatic gamers which is supposed to transform thoughts into movements of a cursor on the screen by detecting EEG. Unfortunately, we’ve ordered an eye tracker too late.

The only way we could communicate with my husband was to use a see-through plastic board with letters written on it in order of how frequently they are used in our language. I would often change the algorithm for finding the letters and even the design of the board depending on the number of movements/signals I was able clearly distinguish from my husband facial movements.

Of course, the technology now is much better than a plastic board with letters written on it, but there are many patients in hospitals in my country who do not even have this simple way of communication and thus their ability to communicate is reduced to “yes “ and “no” or they have no communication at all. With the help from a group of a neurology and speech therapy specialists, I’m trying to make this simple board available at the hospital wards. This is my way of paying tribute for my husband who passed away 4 months ago.

I would like to ask for your help, please.
How do you communicate?
Do you use any similar hand written boards?
Do you have any other know-how which could help other people?

From my experience, I’ve learnt that the board has to be see-through so I could see the letter I’m pointing at and the facial signals from the person I’m talking to at the same time, and the letters have to be ordered according to frequency of their use not in alphabetical order.

Elena

 

[Nikki J]

I am so sorry. What would work would be speakbook but it is only available in English French Spanish and Swedish I think. Perhaps if you google it you could possibly make your own version in your preferred language

 

[affected]

Hi Elena, I'm so sorry to hear of your husbands rapid progression. It is so hard to watch, I know as my husband has bulbar onset and is progressing fast too.

My husband has some ftd and it is proving to be his biggest drawback. I purchased him an iPad and a text to speech app long before he needed it so that he could get good at using it whilst he had good hands and fairly good voice. He messed about with other stuff instead and now he lost use of his hands. He was very agitated that it took too long for the jelly bean switch to come. Now we have had it for a month or so and he has tried using it 3 or 4 times and only at my prompting. So I know how hard it was for you watching your husband unable to use the technology.

We are just experimenting with our own alphabet chart. I agree, with what you say about not doing just the alphabet. I have used groupings. The consonants in a group, then with 3 per line. It makes jumping to a letter quite fast. Under this I also have some common words that he uses and joining words.

On the other side (though I love your idea of being on clear plastic) we have a picture board of common needs. We took our own silly photos to make it and he had a fun time doing that, but I don't think he hardly uses it with staff who come here ... yet. His speech is nearly completely gone. The past week it has really deteriorated yet again. He doesn't realise how bad it is and gets very frustrated at times. I have to work hard some days to get him to persist in attempting to communicate as he just wants to give up.

It is important for people to understand how exhausting it is for PALS with these issues to attempt to communicate. Finding the simplest solution is very important.

I have had a look at speak book and think it looks really useful. I've mentioned it to my PALS but he has been so resistant that I've kind of started small with a single sheet of paper and encouraged him to work out the layout with me.

 

[Tx Daddy's Girl]

My dad is hard headed and no matter how much I pressed for him to be proactive, denial is a powerful force. He fell and barely recovered. Now he is about to lose his voice completely and we've come up with signals. He did say when he can't talk at all to just scratch his head every now and again.