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  1. Replies
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    11,565

    Hi Dina So sorry to hear that you are still in...

    Hi Dina

    So sorry to hear that you are still in hospital and the social services are screwed up.

    I can see you are having a dark day, or indeed dark days and I am sure I shall have some more of...
  2. Replies
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    797

    Good morning I thought it was against the...

    Good morning

    I thought it was against the rules to copy information about members of it outside the forum without permission?

    Because this is what happened to me when you banned Doblett the 1st...
  3. Good morning Hayls I am sorry to hear your...

    Good morning Hayls

    I am sorry to hear your news and hope that you have all the support that you need?

    We do our best here to help each other



    Do please keep us updated with how this goes...
  4. Thread: Rch4

    by nunhead_man
    Replies
    364
    Views
    88,461

    Hi, Speaking is a charity expert of some...

    Hi,

    Speaking is a charity expert of some long-standing the designation of "informal charitable organization" is meaningless.

    I take this from https://rch4als.com/rch4-charity

    An organisation...
  5. Replies
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    11,565

    Good afternoon Dina Just popping in to add my...

    Good afternoon Dina

    Just popping in to add my 2 pennies worth to say great and hope you are now beginning to feel stronger and better?

    Warmly
  6. ILM founding member Crispin Ellison dies

    Loss of a legacy expert and 1 of my mentors in this sector of fundraising
    ...
  7. Hi Ellie Yes, I had known that NurOwn was...

    Hi Ellie



    Yes, I had known that NurOwn was in phase 3 trials, but wondered if what I described was a different approach that might produce results.

    Do we have any idea if the NurOwn trial is...
  8. Replies
    14
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    8,758

    Hi Terry Strangely, I saw the Stephen...

    Hi Terry



    Strangely, I saw the Stephen Hawking film between the time I had the 1st signs of MND and the time I was diagnosed. I have always wondered if the decision to go for tracheostomy was...
  9. Madeleine Lancaster and growing a brain

    I am interested in an article in this week's version of the Economist (August 31 of September 6, 2019) that discusses growing "cerebral organoids"

    This is a stem cell process where the cells are...
  10. Replies
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    1,734

    Hi Sarah, and thank you all This is indeed...

    Hi Sarah, and thank you all



    This is indeed the kind of thing I wanted and I realise that as Ellie says it makes a sombre list - but then I sometimes do feel really sombre.

    I hear what you...
  11. Thread: Rch4

    by nunhead_man
    Replies
    364
    Views
    88,461

    Good evening Ionel That would be me - and...

    Good evening Ionel



    That would be me - and the correspondence that I had about it was posted in this forum without my permission, resulting in somebody being banned from it.

    Best wishes
    ...
  12. Replies
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    Hi Wailywoo I am quite early on in this...

    Hi Wailywoo

    I am quite early on in this disease and so learning about how to cope with it to a great extent by participating in this forum.

    I have been interested how my damaged left hand...
  13. Good morning Jude You seem to have posted...

    Good morning Jude



    You seem to have posted at the tag end of a thread about mobile phone access, which is a bit ironic really as it says something about the usability of the forum.

    I hope...
  14. Replies
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    Good morning Hope everyone is having a good...

    Good morning

    Hope everyone is having a good bank holiday Monday?

    I too am stuck with Glentek and as mentioned above, they do dissolve quite quickly in the mouth if you are not careful careful...
  15. Replies
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    1,338

    Good afternoon Sue I too am sorry to hear that...

    Good afternoon Sue

    I too am sorry to hear that your partner is in hospital. I can only wish him the best.

    Also, it is an only too common assumption that people with high blood sugar have...
  16. Replies
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    Good afternoon Adam And welcome for me too ...

    Good afternoon Adam

    And welcome for me too

    I note what you say about carers - joys to come for us here I guess!

    I note you decided that the breathing assist was not something for you - do...
  17. Replies
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    1,734

    Checklist for losing the use of your arms

    Good afternoon all

    As you will know I have arm onset MND, which means I am slowly losing use of my hands and arms - perhaps 50% left on my left, and 90% left in my right just now - still have a...
  18. Replies
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    Good evening, A bit of an update as I have...

    Good evening,

    A bit of an update as I have been cheered up by having sorted our the spectre of heart trouble hanging over my head since I was stopped starting a drug trial in May 2019. At that...
  19. Thread: collection

    by nunhead_man
    Replies
    9
    Views
    979

    Excellent news ! I hope there will be a...

    Excellent news !

    I hope there will be a fitting memorial for Mick somewhere or other?

    Warmly
  20. Thread: Pain/Agony

    by nunhead_man
    Replies
    48
    Views
    3,627

    Hi there Oooh err - I know there was a...

    Hi there



    Oooh err - I know there was a smiley there, but I am amazed what you have been doing and feel for you in that you are having some difficulty getting your relatives to pitch in.

    I...
  21. Replies
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    1,073

    Good morning Puddy I know I am off thread,...

    Good morning Puddy



    I know I am off thread, but what is this apitherapy?

    It does not get a very good write up here; https://en.wikipedia.org/wiki/Apitherapy

    Warmly
  22. Replies
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    1,073

    Hi Ellie Thank you - assume IDK should be...

    Hi Ellie



    Thank you - assume IDK should be IDNK , meaning I do not know?

    I do try to swallow the bloody things but occasionally when I am, dozy at 6 AM I try to swallow with too little water...
  23. Replies
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    1,073

    Good afternoon all I had the Sun Pharma...

    Good afternoon all



    I had the Sun Pharma stuff originally and then was told I could only get the Glentek stuff.

    I had a hunt round all the different pharmacy chains locally and none of them...
  24. Replies
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    Good evening And thank you both. I will ask...

    Good evening

    And thank you both.

    I will ask my neuro team for a check of my leg muscles the next time again see them in September or perhaps even when I go in later this week to see the physios...
  25. Replies
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    1,073

    riluzole - updated research

    From Lee Millard on the Facebook group MND Warriors....

    The 2 or 3 months is highly misleading as it is based on the 3 original trials which only lasted 18 months. So the conclusions could only be...
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