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Esther.Hobson
30th April 2015, 11:15
Hi there,

I wonder whether forum members would be kind enough to help with a small survey we are doing at the Sheffield MND care centre. We are looking for people affected by MND, either themselves or their close friends or relatives to complete a short 5-10 minute survey about how they use technology such as computers, the internet and assistive technology. We are looking to hear from people who use technology and those who don't.

We hope that the information we get will help us design better ways of looking after people with MND and giving them information.

You can find out more about the study and complete the survey on this website:
http://sitran.dept.shef.ac.uk/clinical-studies/telemedicine/survey/

We will post the results of our survey on the forum later in the year.

Thanks for reading this post.

Dr Esther Hobson
Sheffield MND care centre

Terry
30th April 2015, 11:23
Hi Esther;

The first bit that I can help you with is to make the Click Here To do Survey clearer as it just looks like a page of writing to read and some will scan it and not then find the link.

Regards Terry

Terry
30th April 2015, 11:56
HI;

The survey asks which areas of you body are affected but you can only tick one area. Also I have a feeding tube but don't really use it.

I have completed survey, Terry

john
30th April 2015, 12:22
As a widower I would complete it from our experiences but does not seem that is what is wanted.

Ellie
30th April 2015, 12:38
Hi Esther,
On the very first page I am asked to confirm that:
"I am 18 years or over and I either suffer from MND or are a friend or family member of someone with MND"
Why have you used the word SUFFER? Why not say HAVE MND? It immediately denotes a pitiful situation and personally, I find the term patronising.
I have completed the survey as I am very interested in Assistive Technology.
Ellie.

Esther.Hobson
30th April 2015, 12:47
Thanks for your comments which are very helpful. I will make the changes you suggest as you are quite right about them.

Night walker
30th April 2015, 12:51
Hello,
I completed using the views of my husband who suffers with MND, who point blank refuses to know what will happen so leaves it to me to deal with making sure things are available when he needs them. It's his way of dealing with this disease and I try my best to understand that.
When they said they were using the ice bucket funds to carry out research I thought it was for treatment but I guess there could be a market for designing and selling specialist computer aids for people who have no physical ability. If there is already something my husband can use to think about the the tv channel he wants to view because he cannot move or speak, that reads his mind and switches the tv over do please let me know because I am dreading that day as my tool box will be empty.
Thanks
Sylvia

Esther.Hobson
30th April 2015, 13:38
Night walker: there are systems in development that use your brain waves to control a computer. Here is an example of this:
http://www.cnet.com/uk/news/paralyzed-artist-paints-with-mind-alone/

This system looks like it needs a lot of time and perseverance from the user and is in it's infancy. Hopefully as technology advances something like this may become available to people in the UK. In the meantime, there are ways of adapting switches and so on that can allow you to control things like computers using small movements of the fingers, head etc. Your therapists would be able to advise what is suitable for your husband and you might find people on these forums who use such equipment. Your experiences and worries are shared by lots of other folk living with MND and I would be hopeful that in your area there are some options like this to help you both.

Thank you for your time filling in the survey. We will publish the results later in the year and I will try to make sure we let people know the sorts of technologies people are using to give others some ideas. I appreciate you taking the time to help.

Terry: I'm on the case with the website survey link. I've asked our website manager make the changes you suggest. I've also amended the survey to take into account your suggestions.

Steve
30th April 2015, 13:43
hi sylvia.

i am currently operating my tv & sky on demand, using an aac tablet mounted to my chair.

i feel for you in your situation, it isn't an easy situation at the best of times.

steve

Cookewitch
30th April 2015, 16:32
I would suggest that this is opened up to bereaved carers, we have invaluable experience and insights that can be shared.

Terry
30th April 2015, 18:04
Hi Nightwalker;

Further to Esther's suggestions, you can also get a switch that is operated by blowing or sucking, and that can be used to control a talker or a computer or you can have eye operated systems.

I've been following the mind readers but think they might have a little way to go yet.

Love Terry

Sueb
30th April 2015, 19:59
Completed

Night walker
30th April 2015, 21:32
Thanks for that steve I will definately look into it. He can move his ok at the moment but I can see they are weaker. It's such a worry trying to prepare and not know. I don t know how you guys cope. I am in awe of you alll

Thanks for the advice xx

hi sylvia.

i am currently operating my tv & sky on demand, using an aac tablet mounted to my chair.

i feel for you in your situation, it isn't an easy situation at the best of times.

steve

Night walker
30th April 2015, 21:34
Thanks Terry,
I have got him a tablet, he's never used a computer but using his tablet as its like his phone. Wanted him to get the feel of the tablet to use a speech app as he is slurring now and it's getting worse. He is getting on ok with the tablet so far. Old dogs and new tricks but I won't tell him that lol
Thanks a lot
Xxx

Hi Nightwalker;

Further to Esther's suggestions, you can also get a switch that is operated by blowing or sucking, and that can be used to control a talker or a computer or you can have eye operated systems.

I've been following the mind readers but think they might have a little way to go yet.

Love Terry

Terry
30th April 2015, 21:44
That's good, people can learn how to use these and I think there's help out there from several organisations.

Esther.Hobson
5th May 2015, 13:31
We've had a good response to the survey so far. Thanks to all those who have completed it. We are collecting a range of experiences and things people use that they find helpful. I will report back when the study finishes. The survey will be open until the 1st of July if any other members, their friends or family would like to fill it in.

Esther

Esther.Hobson
8th June 2015, 15:50
This is just a note to say that we're having a good response to this survey which is learning about people's views and experiences of technology. It will run for another couple of weeks. We would like to hear as many opinions as we can and every voice counts. After I posted the link on this forum I got a good response so I'm grateful for the opportunity to share it with you and your support in our research efforts.

You can find out more on this link.

http://sitran.dept.shef.ac.uk/clinic...dicine/survey/

jasimons60
8th June 2015, 17:07
Hi, I am more than willing to help you with your survey. How do I go about this.
regards
John

GrannieAnnie
8th June 2015, 18:28
I tried the link but the page was not found. A

Dude
8th June 2015, 18:52
Ditto.

Esther.Hobson
22nd June 2015, 16:33
Whoops! Hopefully this will work. Will test it once posted. Thanks for your interest!

http://sitran.dept.shef.ac.uk/clinical-studies/telemedicine/survey/

jasimons60
22nd June 2015, 18:24
Just completed the survey and link works fine.

Esther.Hobson
29th June 2015, 17:02
Just completed the survey and link works fine.

Thank you!

We have two more days left before my student and I start to look at the results. I can't wait to find out what people have said.

Jan
29th June 2015, 20:45
I have just completed it although I am not in Sheffield

hanginginthere
29th June 2015, 23:22
Survey completed. Mike

Dude
30th June 2015, 08:50
Survey sorted.

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