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  1. Replies
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    Hi Maz On the evidence of my wife's experience...

    Hi Maz

    On the evidence of my wife's experience (I'm too much of a wimp) , it will be great.

    Good for you!

    Will they take video on the way down as it is over quite quickly but a blast to...
  2. Thread: Meltdown

    by nunhead_man
    Replies
    51
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    5,103

    Hi Jonboy I'm sorry to hear that. ...

    Hi Jonboy



    I'm sorry to hear that.

    However your treatment as you describe falls far below what I have seen in our local hospices with elders of mine and a friend. And far below what I would...
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    Hi Sorry for butting in but what is this CO2...

    Hi

    Sorry for butting in but what is this CO2 reading about?

    My recent breathing jobette was based on the diference betwen a breath volume standing and lying down - they said 90%?

    Also they...
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    Hi Lee Sorry for delay in replying - I'm away...

    Hi Lee

    Sorry for delay in replying - I'm away without my trusty voice dication - and thanks for clarifying.

    Typing this on my lapdog when half way up a mountain in Andalucia at a yoga retreat...
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    Good morning Lee, If you mean in relation...

    Good morning Lee,



    If you mean in relation to the REFALS study I did have a bit of a go at them because they were saying they were short of potential "victims", but there were not prepared to...
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    Also, thank you from me Doug - an interesting...

    Also, thank you from me Doug - an interesting plank in the wall - I do wonder how important this "plank" really is?
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    Hi Vicky Good to hear from you and well done...

    Hi Vicky

    Good to hear from you and well done coming onto here - in a way I guess it might be scary because coming here in itself is some kind of confirmation?

    You have my admiration for your...
  8. Replies
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    Hi Doug And thanks Lee And also, two...

    Hi Doug

    And thanks Lee



    And also, two thirds in the REFALS study from which I have been excluded because the recommendation was I use a Nippy to deal with sleep apnoea and the start of my...
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    Hi Skyvano Excellent news - go well and thank...

    Hi Skyvano

    Excellent news - go well and thank you for your good wishes

    Best

    Andy
    (vote for me as an MND trustee!)
  10. Replies
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    Good morning Thank you for introducing me to...

    Good morning

    Thank you for introducing me to this guy - especially on a morning when were are expecting Trump in the UK and he seems to be bringing his whole family so they can all pose with the...
  11. Replies
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    Hi Dis I have been involved in this game...

    Hi Dis



    I have been involved in this game as my neurologist wanted a baseline for my breathing, so they could notice when it changed. I had 2 tests and both involved getting the unit back to...
  12. Thread: Riluzole

    by nunhead_man
    Replies
    16
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    2,686

    Good evening, As I said above I prefer the...

    Good evening,

    As I said above I prefer the tablets from Sun Pharma , which I take in preference to the Glentech ones as they burn my mouth.

    So I went into my pharmacist today to get my next 6...
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    Hi Polly, Can I add to that in that our...

    Hi Polly,

    Can I add to that in that our occupational therapist has been very helpful, at least as far as pointing out that is quite difficult to convert our existing property and that we may need...
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    Hi Ellie, Kayleigh and Shrew Thank you for the...

    Hi Ellie, Kayleigh and Shrew

    Thank you for the advice - we will get onto this if my use of this device stabilises - I am half minded to leave it at home and then get back to it when I come back.
    ...
  15. Welcome Katski, This sounds like a difficult...

    Welcome Katski,

    This sounds like a difficult position and I feel for you - it is bad enough for me, dealing with motor neurone disease with what I hope is a fairly clear head, but to have...
  16. Good afternoon Katherine Welcome to the forum...

    Good afternoon Katherine

    Welcome to the forum - I hope we can offer you some help with your mother's support and noted it took 2 years to diagnose.



    I note nobody has answer this question...
  17. Replies
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    Travelling with a Nippy

    Good morning all

    The breathing team that is part of the support team I look to have decided I need a nippy for overnight - I have the new version 4 with the version 3 as a backup and have already...
  18. Thread: Ibudilast

    by nunhead_man
    Replies
    19
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    2,141

    Hi Olivia, Thank you - this was featured in a...

    Hi Olivia,

    Thank you - this was featured in a recent webcasts from the US - I think it is a US only study.

    Note that it is a PDE4 and PDE10 enzymes and the MIF protein inhibitor.

    Had to...
  19. Thread: new member

    by nunhead_man
    Replies
    7
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    966

    Welcome Jackie - If you give us some...

    Welcome Jackie -

    If you give us some indication of where you are, we can refer you to a friendly bunch locally to you.

    Please do not give your full postcode!

    Warmly

    Andy
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    Good morning, Coming back to this after my...

    Good morning,

    Coming back to this after my recent visit to my own neurologist....



    When asked, he offered the description "flail arm" without prompting - I knew he was one of the good guys!...
  21. Good morning Doug Thank you - as you say,...

    Good morning Doug



    Thank you - as you say, really good summary.

    Key line seems to be "Despite excellent attempts in each field, single useful biomarkers of ALS are as of yet out of reach"
    ...
  22. Hi again And to add to that I'm told on...

    Hi again

    And to add to that I'm told on facebook that I "make a very, very good point about trials and ALS/MND progress rate. "

    But to make matter even more difficult are two more additional...
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    Hi Panniertank I am sorry to hear of your...

    Hi Panniertank

    I am sorry to hear of your circumstances and perceptive of you that you should ask here about the needs of somebody living on their own.

    I count myself lucky that I have both a...
  24. Hi Ellie and Doug Thank you both - Ellie you...

    Hi Ellie and Doug

    Thank you both - Ellie you have reminded me of my favourite irony joke, which is strangely current....

    "isn't it just a little ironic to see a group of pro-lifers throwing...
  25. Time from diagnosis to death causing problems with clinical trials

    Good afternoon all

    Roger Leek kindly posted this in a Facebook group.
    ...
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