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Thread: Looking for advice from anyone further down the road

  1. #11
    Forum Member Ellie's Avatar
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    Matt, I saw you've a separate thread on Grid Pad, so I'll post re eyegaze on that thread, so as not to duplicate info. Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #12
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    Hi Ellie,

    Thank you for your reply.

    Mam does not attend an MND clinic - it has never come up as an option because we were told some years ago that Mam does not have MND. I'm afraid I don't remember why it was ruled out - it was many years ago now. This probably means it isn't PLS, I suppose, but I often describe Mam's symptoms as like PLS/MND just to get around the fact that we don't have a diagnosis.

    Mam has had a number of social workers, and unfortunately they have been far from helpful in recent years. We had a good experience with a social worker about 4/5 years ago, but she was promoted - I guess that's what happens to the good ones! District Nurses have been involved in a number of different ways, and we now have a good working relationships with a Senior District Nurse who has known Mam for a few years now.

    I had never really thought about neck stabilisation - thank you! This is exactly why I came to this forum, in the hope that other people will comparable experiences will know about things that our health professionals haven't suggested yet. I will have a look at the Sheffield Snood and talk with the family about neck stabilisation.

    Mam uses something called a Grid Pad Eye system, made by a company called Smartbox. I guess it is a camera mouse insofar as the camera tracks the movement of her eye and she can type out words on a screen suspended in front of her by focussing her eyes on different parts of the screen. I'm not sure if the camera used for this is infrared - I'll have to look into that (thanks for the tip!)

    Thanks a lot Ellie, this is very helpful.

    Matt

    PS - I just saw your latest message! I'll go look at the other thread

  3. #13
    Forum Member Barry52's Avatar
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    Matt,

    I now live in Newark and I am equidistant from Lincolnshire and Nottinghamshire MNDA branches so I attend both. I still travel up to Newcastle by train every 6 weeks to visit my mum who is 87 and the assistance on virgin trains is marvellous.I use predictable app for text to speech on my iPad. I have have developed a tremor in my hands which makes it more difficult to type so the East Midlands health authority responsible for communication gave me a switch button which I am learning to use. If we were experiencing these issues 10 years ago it would be difficult but with technology today there seems to be a solution.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  4. #14
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    Hi Barry,

    Glad to hear that Virgin Trains are good. I used to travel the east coast mainline with them a lot but I now travel direct to Sunderland with Grand Central, which is a bit cheaper (unfortunately they don't go to Newcastle).

    Good luck with the switch button, I'm sure you'll get the hang of it soon enough

    Take care,

    Matt

  5. #15
    Forum Member Terry's Avatar
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    Hi Matt,

    A friend of mine has a rare condition called spinal cerebellum ņtaxia as far he hasn't been given a number sc as every test comes back negative. He goes to London once yr main ATAxia hospital.

    Outwardly he would seem like he has PLS.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  6. #16
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    Thanks Terry, I'll look it up

    Matt

  7. #17
    Forum Member Streetwise's Avatar
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    Hello mpmatthew
    I'm also in Sunderland , I know exactly how you feel ,we had to pay a neurologist in Newcastle to tell us my mam had progressive bulbar palsy, that was 20 years ago , sorry if my grammar is poor, I was diagnosed and labelled all at the same time with high functioning autism 23 months ago,needless to say I am still coming to terms with it and I am 47 ,
    Have you thought about contacting the BBC at BBC.co.uk / shows and tours/# Big Life Fix they are looking for participants for season two, there were a few people who have already contacted them ,the inventors thing to be ingenious.
    My Mam Lost her speech in early 1997 ,she had a light writer but couldn't use it for very long and Then I used a perspex board with letters on it.
    She had a laser pointer for awhile but her neck went.If !!!!! you ever think about getting building work done and the council offer to pay for it !!! use what ever savings you have to have it done properly !I had to check everything the builders did and tell the building inspector.
    Even if you live in a council house and you find out the name of the builder !ask other people about their reputation !!!!
    Another thing a lot of companies do shoddy or bad work ,so they avoid prosecution by changing their name check their references .

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