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  1. Replies
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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...
  2. Thread: New to site

    by Barry52
    Replies
    2
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    33

    Welcome Jerry, There isn’t a good time to hear...

    Welcome Jerry,

    There isn’t a good time to hear that diagnosis and I’m sorry it spoiled your Christmas but you can be sure that all our friends on this forum are here to support you on the journey....
  3. Thread: trimetazidine

    by Barry52
    Replies
    2
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    170

    A useful website recently set up. ...

    A useful website recently set up.

    http://www.mndcsg.org.uk/mnd-clinical-research/

    Barry
  4. Thread: Kayleigh

    by Barry52
    Replies
    12
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    954

    As yet no reply to my pm either. Very...

    As yet no reply to my pm either.

    Very concerned.

    Barry
  5. Thread: New Guy :)

    by Barry52
    Replies
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    1,471

    Hi Beemer, If you have someone who can sew...

    Hi Beemer,

    If you have someone who can sew then a press stud fastener or Velcro can be useful for trousers and shirts. Your diagnosis of PMA means you have time on your side.

    Best wishes,
    Barry
  6. Thread: TV programme

    by Barry52
    Replies
    4
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    452

    If you don’t want to watch the whole program then...

    If you don’t want to watch the whole program then the story about Stephan is 18 minutes in. Having watched the program I was left with the feeling that CHC is a postcode lottery and the north west of...
  7. Thread: Kayleigh

    by Barry52
    Replies
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    954

    Lynne, I don’t recall any mention of a holiday...

    Lynne,

    I don’t recall any mention of a holiday but I may have missed a post.

    Barry x
  8. Thread: Kayleigh

    by Barry52
    Replies
    12
    Views
    954

    Kayleigh

    Hi all,

    Has anyone heard from Kayleigh?

    I sent her a pm because I am concerned that we haven’t heard from her in several days which is unusual. She has not replied and I don’t know if the...
  9. Replies
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    Wishing you a smooth passage to your new home...

    Wishing you a smooth passage to your new home Andy. Buying a new home is often a compromise, right street, wrong house and vice versus.

    Barry
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    Hello and welcome HE (I’m guessing that’s not...

    Hello and welcome HE (I’m guessing that’s not your real name but I apologise if it is).

    Great to see you have a positive approach to your future and we welcome your contribution here. If you...
  11. Thread: Doddie Weir

    by Barry52
    Replies
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    3,179

    Hi all, For those who missed the interview...

    Hi all,

    For those who missed the interview with Doddie, Rob and Stephen today here’s the link.
    https://youtu.be/SnZQms-KAGI

    Barry
  12. Thread: Fight for MND

    by Barry52
    Replies
    2
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    692

    Hi folks, Latest news from Brainstorm sounds...

    Hi folks,

    Latest news from Brainstorm sounds encouraging however it is unlikely to be available through the NHS due to cost.


    BrainStorm Cell Therapeutics and FDA Agree to Potential NurOwn®...
  13. Thread: She's Gone

    by Barry52
    Replies
    14
    Views
    1,643

    Hello Chrissie, I’m very sorry to hear that...

    Hello Chrissie,

    I’m very sorry to hear that your gran has departed this world. You can now look back on happy memories in the knowledge that you were a supportive granddaughter dealing admirably...
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    Hi Myrtle and welcome to the forum. I see from...

    Hi Myrtle and welcome to the forum.

    I see from one of your posts you have kindly offered a beach wheelchair. Most of our forum family are British. We do have a member from New Jersey who is pals...
  15. Thread: So tired

    by Barry52
    Replies
    45
    Views
    5,335

    Hi Graham, I don’t know if it’s how my brain...

    Hi Graham,

    I don’t know if it’s how my brain works or the effects of losing my cognitive power but I can translate your message. However I have decided to stick with standard typing as I find the...
  16. Thread: So tired

    by Barry52
    Replies
    45
    Views
    5,335

    Hi Terry, You appear to have a very responsive...

    Hi Terry,

    You appear to have a very responsive district nurse but I understand that you and your wife would not appreciate the multiple changes in care team. I hope you can get relief from the...
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    Hi Ben, If you put cannabis oil into the...

    Hi Ben,

    If you put cannabis oil into the search box you will find lots of posts on the subject.

    Barry
  18. Thread: Fight for MND

    by Barry52
    Replies
    2
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    692

    Thanks for sharing Andy. A very passionate...

    Thanks for sharing Andy.

    A very passionate speech by a brave young lady on behalf of her husband and all affected by MND. Let us hope that America accelerates this trial and the treatment if...
  19. Thread: So tired

    by Barry52
    Replies
    45
    Views
    5,335

    Hi Terry, You are not a wimp and you have been...

    Hi Terry,

    You are not a wimp and you have been fighting this disease for over 8 years. I’m not surprised you are feeling down following your recent hospital stay. Please don’t give up yet as you...
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    Hi Andy, Great news and good luck with the...

    Hi Andy,

    Great news and good luck with the move. I spent the 80’s living near Southampton and enjoyed many happy days on the Solent.

    Best wishes,
    Barry
  21. Thread: So tired

    by Barry52
    Replies
    45
    Views
    5,335

    Hi Terry, I hope you are up to going out with...

    Hi Terry,

    I hope you are up to going out with “granddad” today. Beautiful sunrise here this morning and I expect it is the same in Suffolk. Enjoy your day and give my best wishes to Richard.
    ...
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    Hi Vicky, Click her name on one of her posts...

    Hi Vicky,

    Click her name on one of her posts and it will show private message.

    Barry
  23. Thread: Terry

    by Barry52
    Replies
    101
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    11,694

    I’m loving the Kate Bush song and it’s great to...

    I’m loving the Kate Bush song and it’s great to see it linked with Benny from Top Cat.

    Barry x
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    Thanks for sharing CC. I’m sure with Brian’s...

    Thanks for sharing CC.

    I’m sure with Brian’s high profile he will raise awareness and money to fund further research.

    Barry x
  25. Replies
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    Hi Lynne, I had a thought about person to...

    Hi Lynne,

    I had a thought about person to person alert systems which are good for vulnerable people like us. I use a wristband alarm which is managed by Saga. It is linked to my landline so only...
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