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  • Kayleigh
    replied
    That's great news about the night cover David - hopefully it will start soon so that you can get some much needed rest and sleep. Thank goodness for the local hospices, they do such great work - I think that the people who work for them are truly amazing.

    I am so sorry that you have been financially penalised by the mean system of 'means testing'. So many of us have on this forum. It is such kick in the teeth for ordinary people who have worked hard and economised, so that they can save for their retirement. Having a new bedroom and wetroom should make life a little easier and more comfortable for you wife though. I hope all goes well when these adaptations to your home are made.

    Best wishes to you and your wife,
    Kayleigh
    Last edited by Kayleigh; 5 January 2019, 11:13.

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  • davidr
    replied
    hi ellie, yes its all set up on a new laptop, haven't told the misses but the laptop was nearly seven hundred pounds, but hey you can't take it with you, I just wish we never bothered saving for our old age, having a small stash of money means we have to pay a sum towards the wet room/bedroom.

    hope all is well.

    dave.

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  • davidr
    replied
    mirror image of my life at the moment, only after a visit to the local hospice have things moved at the speed needed, pamper day for 8 weeks sorted, suddenly the district nurse rings saying they have set the ball rolling for some night cover so I can get some proper sleep.

    hope all is as well as possible.
    dave

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  • Kayleigh
    replied
    Hi David,

    I really feel for you.

    It sounds like there are many medical professionals 'buzzing around' in the background, but what actual practical help, if any, have you been offered?

    It sounds like you are caring for your wife all by yourself, without any assistance from carers.

    Has anyone spoken to you about the possibility of your wife having a 'needs assessment' for care from your local authority? A 'needs assessment' is something that your wife is entitled to and you, as your wife's carer, are entitled to a 'carer's assessment'. It could be that you and your wife are missing out on help from carers etc, if you have not had these assessments. The assessments are organised by Adult Social Services at your Local Authority.

    All your time must be taken up with caring for your wife. My experience is the same as yours, where nothing is ever offered to us. It is up to us or those who care for us to have enough time and energy to ask for information etc. I have learnt so much from the folk on this forum about equipment etc that I should be entitled to that I would never have known about otherwise.

    Sometimes, I wonder if the medical professionals received their training at the school of 'secret squirrels' because, in my experience, they rarely seem to be pro-active in offering information/advice.

    Maybe other folk on this forum have medical professionals who are much more pro-active than ours?

    Best wishes,
    Kayleigh
    Last edited by Kayleigh; 4 January 2019, 19:15.

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  • Ellie
    replied
    Hi David,

    I’ll assume your son’s PC meets the system requirements for the 4C. I don’t know exactly what you mean by “it doesn’t work”, so my instructions might be very basic, sorry.

    • Plug in the 4C and make sure it’s recognised by the PC Drives.
    • Download the Eye Tracking Software from https://tobiigaming.com/getstarted/
    • Calibrate it for sue.
    • Choose which software program you want to control the PC with – Windows 10 has its own eye tracking in Settings which can be turned on. Or there is free software, such as Click2Speak, Optikey, bkb etc, available to download depending on your wife’s needs. google it and decide which suits her activity best.


    I use my PC extensively – for talking, all my shopping inc groceries, radio and TV, books, emails, education, and so much more, as well as managing the PC itself.

    Love Ellie.

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  • davidr
    replied
    Hi, don't want to upset the apple cart and get people thinking I am moaning, since my wife's diagnoses, we have had a lot of people involved, therapist, dietitian, occ health, orthotics, district nurse, social worker, the list goes on, no disrespect to any of them but some have said they will see about getting or doing things, nothing materialises , they all say if you need anything just ring, I have enough to do looking after my wife 24 hrs a day without having to remember to phone anybody, I think these people should be ringing us, to see if we need anything.

    david.

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  • davidr
    replied
    Hi ellie, my son has gone to by a new laptop, tried his , which is a later model than ours, it wouldn't work properly, I will be a massive boost for sue onc3e its up and running, what do you use yours for other than texr messaging?
    dave.

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  • MNDConnect
    replied
    Originally posted by davidr View Post
    Hi Kayleigh, yes we have had contact with RCDA, his names is Kevin I think, I was told that the mnda were dealing with the voice banking, as yet not heard anything, as with the other symtems, her voice has gone down as quick.

    thanks
    dave.
    Hi Dave
    If you are happy to private message me with your details or give me a call on 0808 802 6262, I can have a look in to the voicebanking for you.

    Best Wishes
    Rachel
    MND Connect Adviser

    Leave a comment:


  • Terry
    replied
    Hi Dave;

    I to left you a PM about a week ago. If you click on Notifications, ( in red at the top of the page) and then INBOX. You might have to do other things like click on cancel first.

    Good luck. Terry

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  • davidr
    replied
    Hi ellie, I think you have left a private message, it takes me all my time just to respond to messages haha, haven't got a clue how to see it.

    Dave.

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  • davidr
    replied
    Hi Kayleigh, yes we have had contact with RCDA, his names is Kevin I think, I was told that the mnda were dealing with the voice banking, as yet not heard anything, as with the other symtems, her voice has gone down as quick.

    thanks
    dave.

    Leave a comment:


  • davidr
    replied
    Hi terry, somebody came here and demo'd a laptop that controls electrical items, the only trouble is the disease is progressing faster than people can keep up with, its controlled by a wire to a button, that's no use now, but the tobii may be able to replace it.


    Dave.

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  • jaffabeach
    replied
    Originally posted by davidr View Post
    Hi, My son has just showed me a demo of the tobii c4, I was just wondering if anybody has used this, it looks very good, as my wife has lost the use of her hands, I have ordered one, but need an upto date laptop (curry's job).
    thanks
    Dave.

    Hello there, just seen your post after I posted this....
    http://forum.mndassociation.org/show...cker-4C-for-PC

    Leave a comment:


  • Kayleigh
    replied
    Originally posted by davidr View Post
    Hi ellie, I just wanted to know if other mnd sufferer's are or have used it, my wife had full use of her arms and legs in july, now she has nothing, only very slight movement of her left hand, she can't text now, plus her voice has virtually gone, not criticising anyone, but her illness is going down faster than any help the services are providing.


    dave.
    Hi Dave,

    I am sorry to hear about your wife's progression since July.

    There must be a lot for you and and your wife to come to terms with and cope with.

    A good person to contact (if you havn't done so already) for advice about what help and support is available in your area is your MNDA's Regional Care Development Adviser (RCDA). The Advisers are very friendly and helpful, and they are very good people to talk things over with. Your Adviser will know how the system works in your Region for getting your wife any equipment, help and support that she is entitled to.

    If you phone the MNDA Connect helpline, someone there will be able to give you the contact details for your RCDA, or you can look up who this is on the MNDA website. I have provided the link to the list of RCDAs below:-
    https://www.mndassociation.org/getti...ment-advisers/

    Best wishes
    Kayleigh
    Last edited by Kayleigh; 29 December 2018, 00:04.

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  • Terry
    replied
    Hi Dave;

    Good luck with the smart TV. I think that Ellie uses free software and it works well. So if you've not yet got support from the social serveries, it's probably the way to go.

    Love Terry

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