Communication methods

[Guest]

HI, New to the forum. My wife was diagnosed with PLS early 2011. We have been through the whole range of communication aids, all failing as time went by. Even tried Stephen Hawkings variety. Finally reduced to the Magabee with eye movement deteriorating.
I have started a*blog at mndexperiences.blogspot.co.uk hoping others may be able to benefit from some our trials and tribulations in this stressful area of failing communiocation.

[Terry]

Hi Blossom;

Sorry to hear that your wife has been through so many different methods of communication so soon. You can post your experiences here but it's probably best to start a new thread with every different one that you have tried so that others can post there views on them.

Regards Terry

[Blossom]

Hi Blossom;

Sorry to hear that your wife has been through so many different methods of communication so soon. You can post your experiences here but it's probably best to start a new thread with every different one that you have tried so that others can post there views on them.

Regards Terry

Thanks Terry I will take your advice. Sorry so long in reply ... only just seen it. Still getting the hang of these forums and blogs. Best wishes

[dee]

Hi Blossom. Please forgive me but I have not got a clue what a magabee is? But you might be able to help me, if you wouldn't mind? My sister in law is 67 and has had MND for over 3 years. She is bed bound, unable to talk at all, fed with PEG and until this week, she has been using an ipad to communicate. It was really slow and hit and miss due to the spasticity is her arms and hands - but it did work to a degree, but now, she is unable to move her hands/arms enough to even get anywhere near the keyboard.

When she was well enough to speak, she did not bank her voice, but I wondered if you could tell me of any technology that somehow uses just eye contact to communicate? I know its a long shot, but you never know. Thank you in advance. I will try to gert to your blog! But not the best with technology - Thank you

[Terry]

Hi Dee;

Here is a link to a Megabee, don't be worried about not knowing how to do things, Just ask:-

http://www.liberator.co.uk/megabee.html

Her speech therapist should be involved with things as she should be able to help in getting some things. There are Eye gaze systems that allow people to fully use a computer as well as for speech. It is quite slow but there are a couple of people that post quite often that use it here.

You can also have a look at this:-

If you have a windows computer or laptop your husband can give OptiKey a go for free using the mouse, or with head movement using a webcam. If he likes it I can help with choosing an eye tracker etc.

You can download OptiKey, watch some videos, and read about how it works here: www.optikey.org

It's completely free.

Love Terry

[Candle]

Dee.

Mum used a Bluetooth mouse resting on a smallbook when she couldn't manage a keyboard. You can change the settings on any mouse to click with either the left or right if that's a problem. However you can also forget about the need to click at all and use "dwell clicker". This means if you are able to hover the mouse cursor over an onscreen keyboard for a few seconds the computer will select the letter. It's like the clock on Countdown without the music!

Mum used an onscreen keyboard via Grid2, which also has predictive text so speed up communication. If you google both Grid2 and Dwell clicker you should be able to see how they work. Mum selected Fast Talker within Grid2 but there're lots to choose from.

Good luck.

[Ellie]

Wash your mouth out Mr Santa!! Eye gaze is NOT SLOW . I zip around various apps on my laptop and even do the grocery shopping online.
It's much underused in our community imo. The new cheap eye trackers and free software makes it really accessible. I couldn't live without it.

Love Ellie.

P.S. Decided to put on this hat just for you.

[Barry52]

Loving the new avatar Ellie.

Barry x

[Steve]

I have done 9 page reports on eyegaze and got upto 20 words per minute. I am about to start XMAS shopping.

It's deffo not slow.

[dee]

Hi Terry. Thank you for your information. I will pass it on to her husband. We definitely need something to be sorted, as she now cannot communicate at all, apart from moving her eyes up and from side to side. The loss of the use of her hands to use the Ipad have hit her terribly. Its like the last thing that she had has been taken from her. We skyped her today in hospital, and it took me all my time to not burst into tears, she looks so uncomfortable and frail. She has been virtually paralysed for well over 6 months, but could just about press the letters on the Ipad if someone 'jammed' a pencil thing in her clenched hand. I feel so useless and so sad for her. If love could make someone better, she would be one of the healthiest people in the world! I just despair. Not when I am with her or talking to her, but just when I am on my own! xx

[dee]

Hi Steve. I keep coming across your posts and they are GREAT! Chirpy, positive, I really like reading them. They cheer me up - so keep them going Steve!

[dee]

Hi Terry, thank you for this information. We are desperate for anything that will help her to feel not so isolated. I keep passing on all this information to her husband (as we live 200 miles away), but he is looking in to things, God love him as he is 70 years old! But I will let you know how we get onx

[Steve]

Cheers Dee, I don't feel it. I had a chest infection which put me in hospital for a month. I have been in the Hospice for three weeks. They think it's hilarious that I ping the football onto the tele from my computer with my mates ordering curry in.

I am going to ask if we can brew tomorrow, got to have beer at Chrimbo!

They have to get tired of me soon.

[dee]

Sister in Law Seems to Have Given Up

Hi to all of you. I have been passing lots of information about communication aids to my sister in law's husband. He rang us this evening when he came back from the hospital and he said that she had intimated quite strongly that she wasn't interested in pursuing any forms of communication!

I am not sure if that means that she has given up, or given in, or has just generally had enough of this awful disease! She has had it for over 3 years now, and the last 12 months she has lost the ability to do everything. She has just lost the use of her ability to use the Ipad, - her arm is really swollen and her hand wont stop shaking - she is just so 'stiff' everywhere!

We only get to see her once a month as we live near Manchester and they live in Wales, so it is difficult freeing up time when you are working etc to get down there. But in the last 12 months, her situation has deteriorated so quickly. At the beginning of the year she could talk, albeit it with great difficulty and not that clearly. She could eat food, with a bit of spluttering, and she could kind of walk a few steps with a walking frame. But now that little body can't really do anything other than breathe.

I struggle when we do see her as I am trying so hard not to talk about anything that would make her think - I used to do that, or I really miss doing that. But even things that I find hum drum - like walking the dogs in the rain, I keep thinking that I bet that she would love to be able to do that! I find it so hard to imagine how it must feel to have this awful condition. And I rack my brains trying to think of what we could do.... to make it better.....to make any part of it better. I am used to being someone who finds solutions, but this has me completely stumped! I keep suggesting things, and she keeps declining them, not that that bothers me, an idea is only an idea, nothing more. But she can't tell us what she wants now.

She is due to be discharged from hospital soon, well this week or next, so at least she will be at home with her husband, and I know that she hates being in hospital, so at least that is a blessing! God only knows what I am trying to say on here! I think that I am trying to admit to myself that there isn't anything 'active' that I can do to help. I think that nearly all my life as a grown up, I have been able to sort out most problems in my and my families life. And if I couldn't sort it out, I have been able to make things much better than they were. But with MND, it doesn't work that way.

I haven't even got the will to try to motivate her to keep fighting, because that feels more like bullying than supporting someone who wants to give up, give in. I think that I have just had a light bulb moment! Its quite therapeutic, writing things down! Maybe I need to just accept her decision to give in, and to stop looking for ways to prolong the fight.

We are with her again next weekend, and I will be 'with her' in both mind, body and spirit I will just be with her and love her! x

[dee]

Hi Steve. I have tears rolling down my face reading your reply! You are just so positive! Since my sister was diagnosed it was like the world had ended. They didn't go out anywhere, it was like their lives had ended! All that time, that precious time that they had, was wasted on locking themselves away. But for the last year she has been unable to do virtually anything. But its not just the MND, its been their reaction to it. It has never been about what can we do, its always been about what we can't do! And that is so sad, or at least it seems it to me?

Your mindset just seems like a breath of fresh air. You do look a lot younger than her - she is 67. But I am sure that a positive mind set must count for a lot. I might be wrong coz what do I know. But your words and your photograph just typify positivity. So good on you Steve! Which hospice are you in ? I will bring the beers myself if you want!
Dee x