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  1. Replies
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    Hi Graham, This is the update. IMPORTANT...

    Hi Graham,

    This is the update.

    IMPORTANT INFORMATION FOR MOTOR NEURONE PATIENTS AND CARERS:

    Today the Motor Neurone Disease Association has received the welcome news that the Government...
  2. Thread: Nippy 4

    by Barry52
    Replies
    16
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    1,293

    Oh my dear friend Terry. Reading this makes...

    Oh my dear friend Terry.

    Reading this makes me very sad but I know how much we struggle with this disease. I can only wish that you are comfortable and without pain. You are an inspiration to...
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    Hi all, Just received this. Dear Barry, ...

    Hi all,

    Just received this.


    Dear Barry,

    We are deeply concerned that people with MND have not been included in the Government’s list of extremely vulnerable persons in their guidance on...
  4. Thread: Dreams

    by Barry52
    Replies
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    I was told that some of the medications I take...

    I was told that some of the medications I take can cause dreams to become vivid. As yet I always appear to be able to walk and talk normally so I wonder if our dreams protect us from reality.

    Barry
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    Hi Sue, Please give Steve my best wishes and I...

    Hi Sue,

    Please give Steve my best wishes and I am sorry to hear he has another infection. It is a great shame we can no longer meet at the Nottingham branch but we held a video conference tonight...
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    Yes anyone with MND and their carers are in the...

    Yes anyone with MND and their carers are in the at risk group and should isolate for 12 weeks.

    Barry
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    Hello Lizzie and welcome. I’m pleased you have...

    Hello Lizzie and welcome.

    I’m pleased you have reached out to our forum family where you will find support and advice. We often have the feeling of isolation and now it is even worse. What I will...
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    Lovely sentiments Doug, I spoke on FaceTime...

    Lovely sentiments Doug,

    I spoke on FaceTime today with my mum who is 89 and she said she wished she could swap places with me. It brought a tear to my eye and I wish I was there to hug her but...
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    In the light of the current world crisis I am...

    In the light of the current world crisis I am reminded of this song which as a 17 year old when it was released in 1969 was poignant. With hindsight the lyrics should have advanced decades rather...
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    I have to confess Ellie that it’s not me although...

    I have to confess Ellie that it’s not me although I do like dark mint kikats and occasionally my cognitive abilities go awry.

    Love,
    Barry
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    Hi Terry, Very sad news and it shows the risks...

    Hi Terry,

    Very sad news and it shows the risks to our friends. Here is the story https://news.sky.com/story/coronavirus-45-year-old-father-becomes-youngest-uk-victim-11959390

    Stay safe everyone...
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    Hi Terry, Great news that you are back home...

    Hi Terry,

    Great news that you are back home with the correct equipment. I hope you don’t have to use it but it must be comforting to know it’s there.

    Graham,
    You must be made of strong stuff...
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    Hi Jacquij, I use predictable for speech with...

    Hi Jacquij,

    I use predictable for speech with my iPad.

    Barry
  14. Thread: Douglas

    by Barry52
    Replies
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    1,286

    Sorry to hear this Chrisse and please accept my...

    Sorry to hear this Chrisse and please accept my condolences. The one comfort you can take is that you carried out Douglas’s wishes and he was at home with you.

    Barry x
  15. Thread: Kayleigh

    by Barry52
    Replies
    16
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    2,930

    Hi Ellie, Thanks for your clarification and it...

    Hi Ellie,

    Thanks for your clarification and it seems my imagination is out of control.

    Love,
    Barry x
  16. Thread: Kayleigh

    by Barry52
    Replies
    16
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    2,930

    Hi friends, I may be jumping to the worst...

    Hi friends,

    I may be jumping to the worst conclusion here but if you look at the members list it is showing Kayleigh as N/A and other members showing similarly are deceased. I appreciate MNDA...
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    Hi Terry, I have no idea how many toilet rolls...

    Hi Terry,

    I have no idea how many toilet rolls I have at home having been away for 10 days and from what I have read in the media I will be buying the Sunday Times which usually takes a few days...
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    Branch meetings

    It has come to my attention through my local branch that MNDA has advised the following.

    Barry

    Dear Colleagues



    We are aware that the spread of coronavirus in the UK may be causing...
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    Hi Iain, Ask your OT or speech and language...

    Hi Iain,

    Ask your OT or speech and language therapist for a switch control. It allows you to type by selecting letters or predictive text using a button.

    Best wishes,
    Barry
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    I am still concerned that we haven’t heard from...

    I am still concerned that we haven’t heard from Kayleigh and I was reminded because she was the last post before this one and I want to continue my thread about assisted travel with airlines. Some of...
  21. Thread: Sad News.

    by Barry52
    Replies
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    2,124

    Hello Mark, I’m sorry to hear about your mum...

    Hello Mark,

    I’m sorry to hear about your mum and please accept my condolences for you, your dad and the family. I admire your mum’s resolve to refuse medical assistance which would have only...
  22. Thread: Flail arm

    by Barry52
    Replies
    31
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    8,140

    Hi Shaun, As a former lover of golf I would...

    Hi Shaun,

    As a former lover of golf I would love to play a round with you. My grip is strong but if I took a swing off the tee I would fall A over T lol.

    Barry
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    Thank you Doug I had noticed on justgiving. I...

    Thank you Doug I had noticed on justgiving. I hope to attach a video after the event but only if I don’t mess up.

    Best wishes,
    Barry
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    Barry’s challenge

    Hi all,

    Over the years I have organised or been involved with fundraising for MNDA. We rely on friends and family to sponsor us so this time I wanted to challenge myself and inspire my supporters...
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    Hello and welcome Arta. Sometimes diagnosis...

    Hello and welcome Arta.

    Sometimes diagnosis takes too long and often it depends on where you live. If you are fortunate to be under the care of a specialist centre in MND then the process is...
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