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Jeannie
22nd June 2011, 12:27
For those of you whom are unaware of the loan bank.

New computer loan bank for people living with MND
17 September 2007
In partnership with AbilityNet, the Motor Neurone Disease (MND) Association has announced a new computer and information technology loan service for people living with MND.

The new computer loan bank will be run on the Association's behalf by AbilityNet, a national charity which helps adults with a disability use computers and the internet by adapting and adjusting their existing technology.

The loan bank will be free to people with MND who have completed an AbilityNet assessment and will enable access to a range of hardware and software solutions such as:

• specialist communication software, for example EX Keys, The Grid, Dragon
• keyboards
• pointing devices
• switches and switch mounting
• interfaces
• laptops – where the current laptop or PC is not compatible with the required software and hardware

“For people with MND the ability to communicate independently can have a huge impact on their quality of life,” said Heidi Macleod, Head of Care Services at the Association. “Whether talking to a Health and Social Care Professional about their needs, continuing to work, ordering a present for their loved ones or making contact with friends, we know that computers can open up a whole new world to people living with MND.”

Although the Service is free for people with MND, AbilityNet will assess individuals following a referral from Health and Social Care Professionals to the Association’s Equipment Loan Team. Full training will be provided by AbilityNet and should the needs of anyone using the equipment change then additional assessments can be arranged.

"Technology should act as the great enabler for people with Motor Neurone Disease," said David Banes, AbilityNet's Director of Development. "This unique collaboration allows us to identify, supply, and support that technology and to adjust that solution as needs and technology change and evolve."

Heidi Macleod continued: “This is a really exciting development and has the potential to make a real difference to people with MND.”
Contact:
For enquiries about the computer and information technology loan service please contact the Equipment Loan Team
01604 611802
equipmentloan@mndassociation.org

http://www.mndassociation.org/news_and_events/our_news/new_computer.html

MattJ
22nd June 2011, 13:34
Thanks Jeannie, very useful information.

Robin142857
22nd June 2011, 17:22
Hi Jeannie,

It bothes me hugely that there is a proportion of 4500+ folk out there who know nothing of this sort of initiative, and nor will they while they remain (presumably) unconnected. I'd love to find a way of getting through to them. Is anyone, do you know, working on that aspect?

Jeannie
22nd June 2011, 18:54
Hi Robin,

I am not sure whether the MNDA sends such information out by post, but then again the people have to be a member of the association to receive post. I am wondering if a simple leaflet providing such information could be made available and provided to all hospital Neurological departments. When I was under diagnosis I recall being sat in the waiting area where there were many leaflets on MS, dystonia and other neuro conditions, but non on mnd.

sarahezekiel
22nd June 2011, 22:56
Hi Jeannie

I have to say that Ability Net couldn't help me and were really unorganised. They don't support ezkeys anymore and I'd strongly advise everyone not to get ezkeys, because there's no support available. I had no technical support for 3 years, during which time my hard drive broke and cost me a fortune!

Ability Net couldn't even offer me an alternative switch. I wanted to try an impulse switch and they said they couldn't help. I was asking around various places and just before Christmas an impulse switch arrived. I had no idea where it came from. Two months later Ability Net asked me to return their impulse switch! I asked why they didn't offer to install it, etc, but they didn't care. When I returned it they said some items were missing but I'd personally checked and know that I had returned everything.

I know that they are a charity but I was very disappointed and disheartened. There is no decent technology provision or support for free in the UK. If you just want a communication aid, any old equipment will do. But if you want to use a computer without hands as an able bodied person would do, there is no government funding for cutting edge equipment. I think that's a real pity and we need that to change. There also seems to be a lottery post code situation with funding. Some people can get funding from their local pct but I was continually refused.

Rant over! I've had a tough time of it and have seen others with mnd also struggle. I just think that it should be easier, as computer access is so important for some of us.

Sarah x

Robyn Copley-Hirst
23rd June 2011, 13:30
Hi Everyone,

Just to say a couple of words about what we do to try and make people aware of the things we have to offer.

We do educate health professionals about the things we are able to provide, we also have all of our services listed on an information sheet which is made available to everyone.

It is on our website, the information above being quoted from: http://www.mndassociation.org/news_and_events/our_news/new_computer.html

We all agree here, that there are always people and health professionals we need to reach so that more and more people are made aware of what we do, but we do work towards this at all times. It's a neverending task. The average GP will only meet one or possibly two people with MND in their whole career, so, when we are given details of any GP's dealing with patients with MND we do target them and send information out so that they are made aware and also their patient can be made aware. We also work with neurologists as these are the people more likely to meet more people with MND.

Connect also recommend the Computer Loan Bank to anyone who can make use of it, but I will pass the feedback from this thread back to see if there is any way we can do more on this particular issue. The feedback will be very welcomed.

I hope you all find that info useful - I'll keep you posted if I receive any further details on anything else that we do that I may have missed - feedback from you all like this is pretty invaluable, so thanks to everyone for your views.

Sarah - I will definitely pass your personal feedback on.

Robyn

sarahezekiel
23rd June 2011, 22:54
Thanks Robyn. I think that this forum is great for highlighting problems and hopefully improving them!

Sarah

Jeannie
24th June 2011, 10:19
Hi Sarah,

I hear ya! I can't say that I had a pleasant experience with abilitynet either, but after a long battle and moan I finally got my equipment.

computatec
25th June 2011, 14:16
Hi Sarah,

I just have to tell you how much I admire your superb emails. Always perfectly formatted and with correct spelling too, its amazing how you do it with the limitations you have.

I have used Prof. Hawkings quotation as my signature to remind me that those things we can no longer do are not nearly as important as what we do about it.

sarahezekiel
25th June 2011, 18:14
Hi Computatec

Thanks very much! I think it's because I did 'A' level English. I was also a PA at director level for many years, so had to be meticulous about spelling. I really enjoy writing - it's the only creative activity that I can do now. I'm using a Tobii eyegaze computer and apparently I'm able to paint with it. I have to find out how and have a go!

I agree with Prof Hawking, although I'd swap the word 'intelligence' for 'MND'! I think that the key to surviving MND is being able to adapt and embrace change.

Jeannie, what computer are you using?

Sarah

Jeannie
25th June 2011, 18:53
I have a Panasonic toughbook CF19, Sarah.

I was never good at English as you can probably tell lol thank god for spell checkers!

sarahezekiel
25th June 2011, 21:20
Hi Jeannie

I just had a look, are you happy with it? Looks good for going out - do you have a wheelchair mount? Who provides technical support if you need it? I bought my laptop and ezkeys from Possum and they stopped selling that equipment and refused to support me, even though I offered to pay!

Sarah

Jeannie
26th June 2011, 10:50
Hi Sarah

It's ok, but battery doesn't last 9hrs as stated, you'd be lucky to get an hr. I do have a wheelchair mount which can be seen here > http://www.facebook.com/media/set/?set=a.134963585194.225937.839485194&l=fda1143f68 It is on loan from abilitynet so I presume they provide support.

sarahezekiel
26th June 2011, 22:16
I have a XP1 and similar mount. http://www.facebook.com/photo.php?fbid=51064425810&set=a.51055025810.74935.674845810&type=1&theater I've had so many problems with it and no support again. It locks me out and is really unreliable. Big disappointment :(

your battery life is a bit useless. Mine are supposed to last 3 hours but I'm lucky if I get 2.

Sarah

sarahezekiel
26th June 2011, 22:18
http://www.facebook.com/photo.php?fbid=51064425810&set=a.51055025810.74935.674845810&type=1&theater

Trying to post a fb photo but can't. The link shows up before I post but not after...

Confused of London!

Jeannie
27th June 2011, 09:04
Sarah, I am wondering if an Ipad would work best? You could always ask abilitynet for a suitable tablet. Wayne was supplied this tablet http://www.motioncomputing.com/products/tablet_pc_le17.asp Dual Battery Design
The hot-swappable Extended Battery provides the capability of
a full day of continuous performance, and the warm-swappable
Standard Battery provides several hours of reliable power.

PoetChristopherRobin
27th June 2011, 11:54
Sounds right up my street in times srill yet to come, thank you

Jeannie
27th June 2011, 16:11
Sarah, If you're going to seek funding for a tablet from abilitynet/mnda do it now because over the last few months they have seen an unprecedented demand on the financial support service. I was unfortunately refused holiday funding today by National office and my local branch, however saying that they may have a certain budget for different areas of support. I cannot complain as the just funded over £2k towards my new wheelchair, so I am very grateful to the mnda and most of all to the public whom donated.

jen
27th June 2011, 18:29
Hi everybody
I have had my Grid software and my switch for 6 months now and has totally given me so much independence. I have full internet, music kindle and mobile phone all by switch. I also got full environmental control. My neurologist referred me to assistive technology at the local hospital. I am still looking for something to deliver tea and biscuits without comment!

sarahezekiel
29th June 2011, 19:35
Hi Jeannie

Can people use a switch with that tablet? I don't want to deal with AbilityNet again! I'm alright now I have Tobii eyegaze. I don't want to ask for more equipment. I'll put up with my XP1 when I'm out and about, which isn't that often nowadays. Interested to know how Wayne operates that tablet though. I hate using a switch now, eyes are quicker and painless!

Sarah x

jadedjohn
29th June 2011, 21:07
Sarah, there is a company that produces a fancy bit of kit that goes with ipads, it's basically another box of tricks that connects to your iPad which then creates a Wi-Fi signal in your house, I saw a demonstration of it, and how the play, and it was linked to a pattern, the button needed absolutely no p pressure at all to activate - they said it was designed so people with severe disability could press it with their head. It divided the screen into a grid, the cursor cycled around this grid, so when the cursor hits the section you want, it had things on it such as, television, telephone, fish tank, basically whatever you want, so for example if you wanted to operate the TV you would hit the button when they cursor highlighted TV, it would then go into a submenu giving you volume, channels etc.

It wasn't cheap mind you they wanted £1100 for it, and that was just to get you started each module was about another £250

The company was

http://www.rslsteeper.com/assistive-technology/assistive-technology-products/evoassist

I don't know if this will help you Sarah, but I have an iPad and I must say it is extremely good - I can operate it with my bad hand which is almost totally useless now.

John

sarahezekiel
29th June 2011, 21:44
Hi John

RSL Steeper support me with my eyegaze and I've applied for environmental controls through them. I'm going to ask about that bit of kit, but can't afford any more equipment.

Great to know that it exists now! I wanted to control my ipod about 5 years ago, but it couldn't be done.

Thanks

Sarah

marypamelaluke1
25th August 2011, 22:10
I have a foot mouse for sale in aid of the MNDA if anyone is interested. My husband found it very useful as his illness progressed. It enabled him to keep working as a translator until just 3 months before he died.

Paul38
11th November 2011, 20:12
Hello Jeannie,

I have just seen your post about eyegaze.

I am not sure which system you are thinking of, but this is something we are investigating. Yes it is immensely frustrating for both of us.

We are looking at the Tobii C15. http://www.tobii.com/assistive-technology/global/products/hardware/tobii-C15/

"We have had a 2 week loan, but unfortunately Joy had to go into hospital for a chest infection, so we could not really give it trial.

We are hoping to arrange another loan.

The price is £11000! So the only way would be a rental. I believe the MNDA might fund a rental.

Do you know of other equipment.

Thanks for your help.

Best wishes, Paul.

sarahezekiel
12th November 2011, 19:26
Hi Paul

I use the Tobii PCEye, which is cheaper than the C15 and better. Does she need computer access or just a communication aid? The Megabee (http://www.megabee.net/) is quite good if she only needs a communication aid.

Sarah

MattJ
29th May 2012, 14:32
Quick question...does anyone know if Tobii PCEye can be rented? If so any ideas on how much?

sarahezekiel
29th May 2012, 16:53
Hi Matt

The Tobii PCEye can be rented for £370.00 per month. You can contact Shaun McCormack at RSL Steeper on 0789 028 6832 or email shaun.mccormack@rslsteeper.com

Sarah

Dizzy
6th June 2012, 22:59
those of us without mnd have no idea how tough it is. amazing what equipment is needed, and what it does, its a very sad thing that it just has to be so expensive.......is the cost justifiable do you know? Or is it big profits......i find mankind can be greedy and mercenary

sarahezekiel
7th June 2012, 16:31
Hi Dizzy

I think my Tobii PCEye has given me my life back. I don't know how much they cost to manufacture but it's changed my life, so worth every penny to me. I'm even painting and donating all of the proceeds to help people with MND buy Tobii eyegaze technology. You can see my work here. (http://www.eyegazeartists.com/)

I have unlimited tech support which is very important to me and that is free. I think that eyegaze is the best thing to have happened for people with MND.

Best wishes

Sarah

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