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  1. Thread: Advice Please?

    by Barry52
    Replies
    9
    Views
    181

    Just a word of warning and caution guys. This...

    Just a word of warning and caution guys. This site is open to all so I suggest you delete any content with personal information such as email addresses.

    Best wishes,
    Barry
  2. Replies
    71
    Views
    7,394

    Hi Miranda, I received the same message via a...

    Hi Miranda,

    I received the same message via a text. It may have resulted from a phone call my wife made to my GP.

    Ellie,

    I tried the click and collect with Sainsburys and the first slot was...
  3. Replies
    71
    Views
    7,394

    Hi Debbie, Yes I find it amazing we can get...

    Hi Debbie,

    Yes I find it amazing we can get wine delivered (I believe it’s essential to keep our spirits up) but I can’t get milk, bread and other essential food items. Fortunately I have a well...
  4. Replies
    71
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    7,394

    I emailed my MP today via the MNDA link on...

    I emailed my MP today via the MNDA link on Facebook. He happens to be the Secretary of State for Housing, Communities and Local Government.

    I registered last Tuesday and as yet I still can’t get a...
  5. Replies
    71
    Views
    7,394

    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...
  6. Thread: Nippy 4

    by Barry52
    Replies
    16
    Views
    1,619

    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...
  7. Replies
    16
    Views
    1,703

    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...
  8. Thread: Dreams

    by Barry52
    Replies
    7
    Views
    697

    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
  9. Replies
    16
    Views
    1,703

    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...
  10. Replies
    16
    Views
    1,703

    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
  11. Replies
    11
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    1,424

    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...
  12. Replies
    3
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    365

    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...
  13. Replies
    417
    Views
    85,483

    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...
  14. Replies
    384
    Views
    38,850

    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
  15. Replies
    1
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    355

    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...
  16. Replies
    71
    Views
    7,394

    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 donít have to use it but it must be comforting to know itís there.

    Graham,
    You must be made of strong stuff...
  17. Replies
    17
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    7,255

    Hi Jacquij, I use predictable for speech with...

    Hi Jacquij,

    I use predictable for speech with my iPad.

    Barry
  18. Thread: Douglas

    by Barry52
    Replies
    11
    Views
    1,390

    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
  19. Thread: Kayleigh

    by Barry52
    Replies
    16
    Views
    3,007

    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
  20. Thread: Kayleigh

    by Barry52
    Replies
    16
    Views
    3,007

    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...
  21. Replies
    8
    Views
    950

    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...
  22. Replies
    8
    Views
    950

    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...
  23. Replies
    6
    Views
    1,142

    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
  24. Replies
    21
    Views
    5,625

    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...
  25. Thread: Sad News.

    by Barry52
    Replies
    15
    Views
    2,163

    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...
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