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beacon
2nd July 2012, 12:37
Apologies in advance for the long post. I thought Iíd finally register as ironically I donít who to speak to or what to do for the best.

My brother was diagnosed with MND 3 years ago. His decline was fairly slow but steady, until a couple of months ago when he had a PEG fitted.

He went in for the operation and still had his voice, yet when he came out just a couple of days later his voice had all but gone. Initially we thought it was the trauma of the procedure, but it became quickly apparent his voice was not improving. He is for all intents and purposes completely paralysed, which is all the more cruel as he used to be so active before he was struck down. He played sport all his life which in some respects makes it even hard to deal with.

Another effect of the operation seems to be that his breathing has deteriorated significantly. He was on BiPap for a few hours per night, though now he is on it for most of the day and questions loom on the horizon regarding a trach. He has enough movement in his left knee to be able to push a button with it that allows him to control a computer Ė extremely slowly. He also has an eyegaze computer, but the BiPap mask makes this almost impossible to use as it obscures his eyes enough to cause issues with the eye tracking.

This makes it very difficult for anyone to communicate with him. He is an extremely intelligent man Ė he still works from home for an investment bank in the city, using the eyegaze when his conditions allow him to remove the mask.

I guess the purpose of me posting this is that we have always been a very close family. I live many miles away and we used to speak daily on the phone (even before he got ill). Now this is impossible, I cannot get over to see him as much as I would like and feel so guilty that I am unable to speak with him and tell him I am thinking of him constantly.

I help out when I can, always taking him to see his specialist, and helping him with the technology to try and improve his quality of life, but it is destroying me that we cannot converse, I am worried he is thinking I do not care/am not there for him (though in my heart I know he does not think this), yet there is barely a waking moment when he is not in my thoughts.

My mum, dad and other brother are always going to see him and he has an amazing wife and daughter so I know he is not alone.

I just donít know what to do for the best, I was thinking of him emailing him each day with just a few lines of what I had been up to Ė basically the same sort of everyday information we used to share before he got ill. Though we have always been close he has rarely told me how he is feeling (again, even before he became ill), so I donít expect him to be able to tell me now.

I feel so useless, how do others cope?

Thanks, and sorry to take up so much time (and apologies if I am in the wrong thread)!

Robyn Copley-Hirst
2nd July 2012, 13:32
Welcome to the forum, Beacon,

I do hope you get some first-hand experiences from people here, but I would also suggest giving the MND Connect Team a call on 08457 626262.

They would be more than happy to discuss how you're feeling with you, what you can expect for the future and also what other options there may be for you to have conversations with your brother. It may be that you could consider using communication systems that don't rely on a voice... but only you can know what works between your yourself and your brother.

We'd be more than happy to talk with you about this, but sometimes the best suggestions come from those who have lived through what you're going through now. I'll leave this thread to the forum members and hope you find a solution soon.

Robyn

miranda
2nd July 2012, 14:14
Now that my speech is almost impossible to understand and when I try to talk I start coughing, I use email and skype. With skype, my family and friends can speak to me and I respond by typing - this way we often 'chat' for ages which I thoroughly enjoy.

Terry
2nd July 2012, 14:44
Hi Beacon;
I am not as far on as your brother but I do find it hard to talk now. I like people to tell me what they have been doing, just general life, holiday plans, etc.
I doubt that I will go on holiday but I enjoy other people talking about things.
So I think that emailing every day, or talking to him on the phone would be a good thing.
Regards Terry

Smudge
2nd July 2012, 15:27
My grandad didn't have MND, but he he was profoundly deaf & used a text phone via the RNID Typetalk service (it may have changed it's name by now). He needed a text phone, but the people he phoned spoke via an operator who typed the conversation to him. If we wanted to ring each other directly without using the relay service then we would also have needed to get a text phone & type our side of the conversation, which would appear on a little screen on the phone. The world has moved on since those days as he died in 2006 before Skype etc, but it could be another possible option.

beacon
2nd July 2012, 16:09
Hi everyone,

Thank you so much for all the replies, and so quickly too I really appreciate everyone's kind words!

Robyn: Thanks, I think I will research that option and see how I get on. I am willing to give everything a try! :)

Miranda: That sounds fantastic. We used to use Skype too, but unfortunately now he has lost the power in his hands and is unable to type. It is still good to see him, so we are now hoping to Skype him more often as he has it installed on his TV which is more convenient as he cannot get to a PC as easily.

Terry: Thank you and it seems like we are on the same page. I have just written a long email to my brother outlining what we did at the weekend. It's the trivial stuff that we used to talk about that I miss - football, tv, computer games that sort of thing. So in the meantime I am definitely going to keep him updated using this approach. Thanks for suggestion!

Smudge: Thank you too, I have not heard of that before, but will look at what alternatives there are. If we can find a work around for his eyegaze computer working with his BiPap mask then I think we could use this with skype and it will be very similar to the approach you mention!

Thank you so much for everyone's comments, it's given me a lot to think about on how we can converse going forwards. Skype, along with regular emails, definitely seems to be the way forward so I will be doing this more often. I am going to pass this advice on to his friends and our family as I am sure he'd be happy to hear from those who are unable to see him as often as they would like! Thanks again! :)

sacerdoteuk
10th July 2012, 23:29
Has your brother tried Dasher (http://www.inference.phy.cam.ac.uk/dasher/) for typing? I've mostly lost the use of my hands, and can't use a keyboard although I can still move the mouse. I use a footswitch for clicking With Dasher I can manage about 20 words per minute. It will even work with a single switch.

Cheers, Steve

beacon
11th July 2012, 21:29
Hi Steve,

Thank you for your response I really appreciate it!

I am pretty sure he has not tried dasher, he currently uses The grid but finds it quite difficult to get on with. from what I can see dasher looks very interesting so I will research it.

I am seeing him on Saturday so will get him to try dasher and see how he gets on with it.

Thanks for your suggestion!

Kind regards,


Beacon.

Jeannie
14th July 2012, 08:43
Has your brother tried Nasal cushion masks? this would enable him to use eyegaze http://www.eu-pap.co.uk/products/masks/nasal-cushion-masks.html

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