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Serenstars
3rd October 2013, 00:37
Hello all. I would be grateful if you could take the time to help me with a question. I have a dear friend with mnd. She lives in Ireland. It was bulbar (?) onset and diagnosed in October 2010. Fairly soon after that her speech went altogether. She is doing well but has no real movement left apart from her head. She is still eating and her swallow is still good. I live in the uk and when I visited her in august we were talking about her eyegaze equipment which was lent to her by the Irish mnd association. It's slow and freezes often. It has some internet connectivity but she finds it too much of a hassle and too slow. She hasn't read a book in over two years. I was flabbergasted. Having worked for a technology company I understand that much is now possible. I can't understand why her eyegaze is so bad, why she can't surf the net or use a kindle type app to read a book. So my question finally: what is out there? What kind of functionality does it have? How much does it cost? I made a promise to her that I would chase up getting her hooked up with something better. I was thinking her friends could all of us fundraiser to buy a better one if it exists. Very grateful for your help on this. Thanks xx

Frank
3rd October 2013, 06:25
This thread may be of interest:
http://forum.mndassociation.org/showthread.php?1970-communication-aid-using-eyes&highlight=eyegaze

I hope you find something.
xx Frank.

Andrew
3rd October 2013, 10:36
Hello all. I would be grateful if you could take the time to help me with a question. I have a dear friend with mnd. She lives in Ireland. It was bulbar (?) onset and diagnosed in October 2010. Fairly soon after that her speech went altogether. She is doing well but has no real movement left apart from her head. She is still eating and her swallow is still good. I live in the uk and when I visited her in august we were talking about her eyegaze equipment which was lent to her by the Irish mnd association. It's slow and freezes often. It has some internet connectivity but she finds it too much of a hassle and too slow. She hasn't read a book in over two years. I was flabbergasted. Having worked for a technology company I understand that much is now possible. I can't understand why her eyegaze is so bad, why she can't surf the net or use a kindle type app to read a book. So my question finally: what is out there? What kind of functionality does it have? How much does it cost? I made a promise to her that I would chase up getting her hooked up with something better. I was thinking her friends could all of us fundraiser to buy a better one if it exists. Very grateful for your help on this. Thanks xx

Hello Serenstars and welcome to the forum.

Our MND Connect helpline will be able to help with this, and they have a lot of information on communication devices. You can contact them on 08457 626262 or by email on mndconnect@mndassociation.org.

As Frank has pointed out, many previous threads on the forum deal with communication devices. You can find a selection here (http://forum.mndassociation.org/showthread.php?168-Communications-with-Bulbur&highlight=eyegaze) and here (http://forum.mndassociation.org/showthread.php?2657-tobii-eye-gaze-problem-because-of-glasses&highlight=eyegaze). Our 'Living with MND' (http://www.mndassociation.org/Resources/MNDA/Life%20with%20MND/Living%20with%20MND%20guide%20-%20normal%20pdf.pdf)guide has a section on speech and communication (section 8), but I am sure that the forum community will give their own feedback on the best devices to use.

Best wishes,

Andrew

wooz
3rd October 2013, 16:18
what about using smartnav? if she has good head movement this could be the answer

Terry
3rd October 2013, 17:51
hi;
you can do quite a bit with camera mouse and the on screen keyboard . It's slow and you can end us opening up other programs. It is hard to move the page up and down and impossible to start without hands on a windows 7 laptop. It's all free for laptop and you can use it with speech programs as well. So once on, you can control the the laptop and speak, write emails, posts, word docs, etc. It is very hard to do compared with using your hands and takes a bit of getting used to. I find it tiring but I thought the same with eye glaze. It relies on head movement and does require your head to be in one stable position and then small movements of it to control the cursor. If it remains static for two seconds then it double clicks opening programs etc.

I would contact the provider of the system and see what they have to say. Some people seem to get a lot of problems and other don't.

Wooz what is smartnav and what is it compatible with.

There are many things out there but very few people that know about them. I have been trying to get a very basic switch operated speech system for people that do not operate computers but have not found what I'm after.

Hope that you find something that works, regards Terry

Serenstars
7th October 2013, 23:38
Hi thanks all for your replies and apologies for taking some time to get back to you. My friend and her husband are not very tech savvy. She has resisted a lot of change in the past too.. I would love to see her with a faster system with access to the internet, skype, some kind of kindle app etc. she has a willing team of fund raisers around her so if I can do some research into what is possible, how much it costs and how we go about getting it that will be a good start. I will read the threads you guys have linked to and phone the helpline and go from there. I will update if I make any progress x

Serenstars
7th October 2013, 23:40
Just too add not sure how great her head movement is so think eyegaze best though obvs won't rule it out as am conscious I am not the expert

Celtic Magic
2nd November 2013, 09:38
Hi Serenstars
sorry to be slow off the mark- if your still struggling to find a solution for your friend I could let you try one of these www.celticmagic.org
for a bit- Drop me an email via the website.
cheers
Graham



Hello all. I would be grateful if you could take the time to help me with a question. I have a dear friend with mnd. She lives in Ireland. It was bulbar (?) onset and diagnosed in October 2010. Fairly soon after that her speech went altogether. She is doing well but has no real movement left apart from her head. She is still eating and her swallow is still good. I live in the uk and when I visited her in august we were talking about her eyegaze equipment which was lent to her by the Irish mnd association. It's slow and freezes often. It has some internet connectivity but she finds it too much of a hassle and too slow. She hasn't read a book in over two years. I was flabbergasted. Having worked for a technology company I understand that much is now possible. I can't understand why her eyegaze is so bad, why she can't surf the net or use a kindle type app to read a book. So my question finally: what is out there? What kind of functionality does it have? How much does it cost? I made a promise to her that I would chase up getting her hooked up with something better. I was thinking her friends could all of us fundraiser to buy a better one if it exists. Very grateful for your help on this. Thanks xx

Steve
2nd November 2013, 15:01
I'm surprised to hear about your problems with eye gaze. I use it at work with Excel, Word, Outlook and IE and it's brilliant. Could the laptop be the problem if they are finding problems with it hanging? Another cause could be the calibration settings.

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