Sign language

[Katrina36]

Hi,, I've noticed as time goes on,, my dads speech is getting less and less understandable,, he's really not keen on using the iPad at all,, when out he carries pen and paper (took a whiley to get him to come round to this idea),, while we can understand him a good bit,, it can sometimes be hard,, ive noticed him signing the odd words that we can't understand,, wee bit like a game of charades,, I wanted to know what other people's views are on sign language,, whether this is a good idea in the short term as I'm aware he won't be able to do this forever with his hands,, but until then,, do other people do this? ... Thanks katrina x

[Terry]

Hi Katrina,

A few have but normally the hands are affected so that proper signing becomes very hard.

I do use hand jestures but even pointing is very hard when you can't straighten your fingers. I do use the thank you signing but few people know it.

I would recommend that he uses the I PAD so that he gets used to using tech to speak.

Love Terry

[Katrina36]

Hi Terry,, thanks for reply. He will not use the iPad, I don't know if he doesn't like the voice or the fact that he's having to admit he's loosing his voice, or that it can take a while.... But he does use his hands for speaking,, not real sign language as none off us know this,, (I only know how to do the alphabet in sign language),, but he does his own thing,, I know he can't do this forever,, but is there any quick ways to learn a few phrases or words that are commonly used?,,,, is there anything else he can do before having to use the iPad?... Katrina x

[Terry]

Hi Katrina,

You could probably find most on the computer, maybe YouTube, or a deaf site or the society.

You might well get other voices but using a talking machine is very hard as you can't join in, well you can sometimes but it's very hard.

You try it for a couple of hours, maybe with him.

You can make up cards and leave them in places that are relevant to the cards.

Like dinner table, sitting area, bedroom, shower room and one for outside.

Love Terry

[Katrina36]

Hi Terry,, I think I'm just going to start subtly leaving cards in the different rooms,, just a few and see what he thinks,, as I did that with the pen and paper and that worked,, also I might start playing around with the iPad app with him more and see if he will get used to it over time,, I do like the cards idea ..... Katrina x

[Candle]

Have you looked at Speakbook? It's designed to be used when there's little to no speech and people communicate with their eyes. There are sections to personalise. You can download it for free to print and as you have complete control can make changes regularly as necessary. I appreciate your dad's able to still use his hands but the sections might prove useful even now.

Mum used a version I made quite successfully. It had large black letters on a yellow background as her eyesight was "not quite right" and she couldn't pick out the coloured letters - I read later that the shape of the eye can be affected by certain meds.

[Katrina36]

Hi candle,, thanks for reply,, I'm going to have a look at this as not heard off this,, anything is worth a try ... Thanks Katrina x

[panny]

Hi Katrina. My mum's best friend is an A4 sized white board and dry marker pen. She can write down in large writing and hold it up for us to see. She finds this quicker than pen/paper or iPad. You can get them really cheaply in B&M's, Home Bargains, Ebay. She sticks a wee piece of Velcro to the pen so it's stuck to the edge of board for easy finding. She finds the Be-rol pens from ebay work best - nice and chunky to hold and the tops are easier to get on and off.

[FlyingSoupDragon]

Hi Katrina,

These are testing issues that need facing in a different way than we've been used to in the past. MND/ALS imposes change upon us brutally and in doing so can initially overwhelm our ability to respond.

What does this mean? My case illustrates the point: I have all but lost my voice and although I'm a committed Apple advocate I stubbornly refuse to use the iPad app 'Predictable' to communicate. I grimly hang on to the entrenched belief that my mouth can do the job more quickly as I gradually slip across the line where it can't.

We can all get by using intuitive sign language, pointing and 'Charade' - play out an action etc. This takes us only so far, if we aren't prepared to adapt we end up retreating into an isolated position and miss out on conversation, the major supporter of relationships.

Using the tools at hand we MUST break new personal ground and build new ways to take part in LIFE. Clinging to past normalities is an option, but it's a really bad one.

No matter which tool used, time must be invested finding the best way to exploit it. Predictable, like many similar apps, allows user made phrases/questions/answers to be made, but it's the PRACTICE and USE of the tool that turns it from clumsy, annoying device into an indispensable friend.

[Guest]

Hello Katrina. There are so many possibities aren't there and we all find what works best for us in the end. I discussed sign language with my hubby quite early on but we were advised that the fact that hand and finger control usually goes made us give up on that idea. He tried chunky pens but very fast MND progression beat him with that.
He did very well with an Ipad with Predictable added but again the disease was fast so that after only 7 months or so it became more difficult. People on this forum would have noticed his postings getting shorter and shorter, sometimes sounding a bit brusque as a result?
Looking back, developing some sort of code between ourselves might have been good. The day before Trevor died he looked at me and drew, in the air a square then put his thumb up! I didn't have a clue!! Then he drew in the air the letters FOOT.....! He wanted the radio so he could listen to the football, his thumb being the aerial. His favourite team won that day.
It might have been fun to build up a vocabulary of things like that over the months but at the same time I can't praise Predictable enough.
Trevor lost his speech very early on but he was doggedly determined to continue communicating as well as possible for as long as possible. He had always loved to talk. Saying that, he tended to use the Ipad more with other people than with me at first, which I found incredibly frustrating.
He felt that I should understand, being his wife, even when others didn't. I suppose this was his way of trying to cling onto normality but our relationship improved 100% when he acknowledged that I didn't need a challenge at that stage. Life was hard enough in so many other ways than communicating.
I do wish you well Katrina. I do hope your father can keep trying with the Ipad. The strange voice becomes acceptable after a while! Maybe he could just have abit of fun with it to start with. Before he got into "speaking" with his Trevor like to display the"wolf whistle" to all the visiting health care professionals, most of whom were attractive young ladies! He got used to using it that way then progressed. Worth a try?
Thinking of you, Annette.