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  1. Replies
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    Hi Andy I have been trying to remember the...

    Hi Andy

    I have been trying to remember the things that helped me as various parts of the body ceased to function as they should
    It is is quite hard to recall but as my hands and arms stopped...
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    Hi Sue I can't use the hand controls on my...

    Hi Sue

    I can't use the hand controls on my wheelchair any more either but I had a control fitted that I can operate with my chin which is amazing but I can't use it despite my best efforts !...
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    Thanks Terry and Ellie I am hoping to go on...

    Thanks Terry and Ellie

    I am hoping to go on the 23rd just trying to drag Ian away from work ,we have a haulage company based from home and he is a workaholic !

    I will contact the people you...
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    Thanks Debbie We have travelled quite a lot...

    Thanks Debbie

    We have travelled quite a lot in the last few years and have had very good experiences of the assistance and have found it very easy

    My concern is taking a suitcase full of...
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    Travelling with liquid food Advice please

    Evening all

    I am thinking of booking a week away at the end of the month for much needed sun for me and a rest for Ian my husband

    However things have changed since our last holiday because I...
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    Hi Amanda That sounds like a good start , my...

    Hi Amanda

    That sounds like a good start , my pump etc is arriving tomorrow and my lovely nurse is coming to set it up

    I am looking forward to getting started !

    I hope that tonight goes...
  7. Replies
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    Maybe we can share some ideas? I like salmon...

    Maybe we can share some ideas? I like salmon with mayo and spring onions chopped up small , I crave a bit of flavour ,chicken sliced never cubed , mixed with mayo and pesto, I only eat a little bit...
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    10,221

    Hi Icecream is a funny one isn't it because...

    Hi

    Icecream is a funny one isn't it because some bits can melt and cause coughing and I have to hold it in my mouth for a while and then swallow , I find custard and yogurt easier

    It's...
  9. Replies
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    hi Pink how much do you have over 24hrs? and...

    hi Pink

    how much do you have over 24hrs? and what do you have? it is not fun being so skinny!
    best wishes

    Sarah x
  10. Replies
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    Thanks everyone Terry at the moment I have 3...

    Thanks everyone

    Terry at the moment I have 3 bottles of Fresubin 200ml 400calories daily although my dietitian would like me to have 4 but anymore leaves me feeling very sick on top of meds
    I...
  11. Replies
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    Peg feed advice please

    :o
    Hello lovely people

    I have been using my peg almost entirely for 5 months having daytime syringe feeds but I am losing weight still so I am thinking about trying overnight feeding to get more...
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    Hi I know exactly what you mean Terry I have...

    Hi

    I know exactly what you mean Terry I have the same limitations and that is why I am interested in this device x

    Barry that is great news I am looking forward to hearing more x

    love Sarah
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    Hi Lynne I hope you have had a good day in the...

    Hi Lynne

    I hope you have had a good day in the sunshine , it was a lovely day x

    Sarah x
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    Hi Ellie my eye gaze is great thank you , I...

    Hi Ellie

    my eye gaze is great thank you , I just stumbled across the eyecontrol write up and was curious ,

    Love Sarah x
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    thanks Terry I already use eye gaze but I was...

    thanks Terry

    I already use eye gaze but I was reading about the eye control headset and wondered if anyone has used one

    ...
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    Eyecontrol communication aid

    Evening
    does anyone have any experience or know much about the Eyecontrol headset?
    I would like to know more
    thanks

    Sarah x
  17. Replies
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    Wheelchair accessible motorhome

    Hello everyone

    I am looking for a motor home to hire and I know that there are some about but the only one I can find is 3x as expensive as a result normal ones which is too much for me

    Have...
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    Hi Ellie That's so kind of you thank you !I...

    Hi Ellie

    That's so kind of you thank you !I knew that there must be a way but couldn't find it x
    I will watch some tutorials and learn how to use it more efficiently x

    Sarah x
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    Grid 3 v Communicator 5??

    Hi fellow eye gazers

    I am currently using the Grid but find it frustrating when 'talking" because it spells out the word and is a bit laborious
    Maybe I need to change some settings but I don't...
  20. Replies
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    hi I have the same problem and when it is bad I...

    hi
    I have the same problem and when it is bad I have found that a spoonful of raw honey a few times a day makes the world of difference
    also a regular sip on a glass of very cold water helps ...
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    Thanks everyone I keep thinking about writing a...

    Thanks everyone
    I keep thinking about writing a book and do write the occasional poem so maybe I should get on with it but it is knowing where to start x I will contact the MND connect as well x I...
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    Hi Pink I have had a catheter a few times for...

    Hi Pink

    I have had a catheter a few times for several weeks after spinal surgery and they are not difficult to get used to and very discreet x consider trying the oxybutenin as well ,I have been...
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    Working from home with MND?

    Happy new year everyone

    I am looking for something worthwhile to do and use my brain ! I am not mobile and barely verbal but have an eye gaze and am quite computer competent and I need something...
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    Hi I have had the same problem for several years...

    Hi
    I have had the same problem for several years and totally understand how you feel x I take oxybutynin for bladder control twice a day and extra if I am going out talk to your gp or community...
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    Hello I am 8 years in now but I remember...

    Hello

    I am 8 years in now but I remember clearly those first few weeks

    The only way I coped was to tell myself that nothing has changed but now my condition had a name

    I hadn't suddenly...
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