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  1. Replies
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    Hi Ellie Thank you - both for the information...

    Hi Ellie

    Thank you - both for the information and for the endorsement

    I guess the St Thomas's Lane-Fox Respiratory Unit knew what they were doing after I complained about it blowing in my face....
  2. Thread: NurOwn

    by nunhead_man
    Replies
    1
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    152

    NurOwn

    Good morning,

    I was nagged from Patients Like Me to post an update so I went back for an infrequent visit and saw this....

    "NurOwn uses MSCs harvested from the patient. MSCs are precursor cells...
  3. Replies
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    Good morning Vicky Thank you for your response...

    Good morning Vicky

    Thank you for your response and sorry to be a bit slow coming back - I have been otherwise engaged for 10 days or so.

    And good to see you using the forum - do keep asking if...
  4. Thread: Meltdown

    by nunhead_man
    Replies
    53
    Views
    5,710

    Hi Jonboy I just wish we had the space to...

    Hi Jonboy

    I just wish we had the space to create a proper wet room et cetera for me to provide for the future and to make home somewhere I would want to come back to - we moved into this place a...
  5. Replies
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    Hi Douglas and Ellie I have been provided...

    Hi Douglas and Ellie



    I have been provided with a Nippy by the breathing team as my overnight sleep study showed sleep apnoea and a minimal loss of diaphragm strength at the moment.

    When I...
  6. Replies
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    Good morning Barry Interesting – thank you. ...

    Good morning Barry

    Interesting – thank you.

    The device seems quite expensive but I guess they have to get their investment back somehow!

    Can I check that this device has some way of...
  7. 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...
  8. Thread: Meltdown

    by nunhead_man
    Replies
    53
    Views
    5,710

    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...
  9. Replies
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    11,850

    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...
  10. Replies
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    5,957

    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...
  11. Replies
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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...
  12. Replies
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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?
  13. Replies
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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...
  14. Replies
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    5,957

    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!)
  16. 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...
  17. Replies
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    11,850

    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...
  18. Thread: Riluzole

    by nunhead_man
    Replies
    16
    Views
    2,790

    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...
  19. Replies
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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...
  20. Replies
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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.
    ...
  21. 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...
  22. 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...
  23. 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...
  24. Thread: Ibudilast

    by nunhead_man
    Replies
    19
    Views
    2,259

    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...
  25. Thread: new member

    by nunhead_man
    Replies
    7
    Views
    1,066

    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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