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  1. Replies
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    Good afternoon Ellie As I have just said...

    Good afternoon Ellie



    As I have just said to Dina I got my Nippy when having a base line test and sleep apnoea was diagnosed.

    As to the other alphabet soup. I am afraid I do not recognise...
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    Hi Dina As far as I know not - this was...

    Hi Dina



    As far as I know not - this was picked up for me when my neurologist wanted a based test of how my breathing was so that subsequent tests which show when it was deteriorating.
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    Hi Dina That is quite right but actually...

    Hi Dina



    That is quite right but actually in my case as I am practising for when my lungs do not work properly - at the moment, the diagnosis is sleep apnoea found when my neurologist was...
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    Good morning Andy I am actually in central...

    Good morning Andy

    I am actually in central south London, but am looking to move south to get a place which will accommodate me with a wheelchair if that is indeed the way I go, which is the...
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    Hi Ellie, Thank you for calling me macho - I...

    Hi Ellie,

    Thank you for calling me macho - I will pass that on to the family and see what they think!

    And Dina - I do not think the family think I am stoic either, since I occasionally throw my...
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    Good afternoon Andy Interesting you have an...

    Good afternoon Andy

    Interesting you have an appointment there - I am looked after by Kings College Hospital, Denmark Hill myself.

    Firstly, they really ought to consider the appointment time so...
  7. Thread: What Now?

    by nunhead_man
    Replies
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    2,938

    Good afternoon Chrissie, I am with Ellie all...

    Good afternoon Chrissie,

    I am with Ellie all the way.

    You are very brave and sweet and I can only wish I will have somebody like you to look after me when I get to the stage that your...
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    Hi Dina No, I am afraid that was properly my...

    Hi Dina

    No, I am afraid that was properly my fault - probably a man thing, putting up with a bit of pain and discomfort until my wife pointed out that what I think is a bit of a growth on the side...
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    Hi Terry The monitoring I had showed I stop...

    Hi Terry

    The monitoring I had showed I stop breathing, perhaps 8 times a night.

    My oxygen level seems to hover around between 92% and a 100% and has been for a couple of years - long may that...
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    Good afternoon and thank you both The mask...

    Good afternoon and thank you both

    The mask that St Thomas's have provided as a kind of gel boundary to it that makes the seal with my face, but I think it gets crushed where it crosses the bridge...
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    Good afternoon, I see this is quite an old...

    Good afternoon,

    I see this is quite an old thread, but it is the obvious one for which I need to add my query.

    I use a nippy breathing machine, more for sleep apnoea than for my motor neurone...
  12. Thread: Frieda

    by nunhead_man
    Replies
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    Hi Frieda I looked at my old reference books...

    Hi Frieda

    I looked at my old reference books and found the commonest side effects seen in the early stages of baclofen treatment............


    Fatigue
    Insomnia
    Nausea
    Dizziness/vertigo
    ...
  13. Thread: What Now?

    by nunhead_man
    Replies
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    2,938

    Good evening Chrissie It seems you have made...

    Good evening Chrissie

    It seems you have made some progress and I feel for both of you - your Gran is clearly struggling with acceptance and you are doing so much to help her.

    As to...
  14. Thread: Frieda

    by nunhead_man
    Replies
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    1,312

    Hi Freda Welcome to the forum from me too - I...

    Hi Freda

    Welcome to the forum from me too - I hope you will find some help here.



    Interesting as I have never been offered this myself , but then I have always been happy with my hand...
  15. Thread: New Member

    by nunhead_man
    Replies
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    Good morning Martin I am sure you do not want...

    Good morning Martin

    I am sure you do not want to be here - I am certain I do not!

    But you are in the right place to get help and support.

    Do say more about what is troubling you, and I am...
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    Hi Terry Forgive my curiosity as I am not as...

    Hi Terry

    Forgive my curiosity as I am not as far gone as to need something like this at the moment.

    I could not quite work out how this will be used?

    Would you use this by seating someone on...
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    Good morning Ellie Interesting that is having...

    Good morning Ellie

    Interesting that is having that effect on your painkiller use I assume there is nothing else going on in your life that has resulted in you being more pain-free?



    I just...
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    Good morning, Back to report my first week of...

    Good morning,

    Back to report my first week of this trial!

    The packaging recommends taking two tablets twice a day for a week, presumably to put in some sort of zap and then going back to 1...
  19. Good morning I am also a member and agree with...

    Good morning

    I am also a member and agree with Doug and Barry - certainly at the very least the start on the road to acceptance
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    Hi there Thank you for the thought I think...

    Hi there

    Thank you for the thought

    I think probably not as we would have some difficulty getting onto the housing register?

    Partly because we would be seen as intentionally homeless as we...
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    Good evening, Barry My outlaws (family...

    Good evening, Barry

    My outlaws (family joke-in-laws), now unfortunately, both deceased used this company for hand controls - being controls that were fitted to a car they owned already - Pop had...
  22. Thread: Check in

    by nunhead_man
    Replies
    11
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    1,202

    Hi there, My experience of using one of these...

    Hi there,

    My experience of using one of these with one of my elders is the having the medical control may also be useful if the person you are caring for becomes unable to communicate.

    If you...
  23. Thread: Check in

    by nunhead_man
    Replies
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    1,202

    Hi Broostine No problem! One more...

    Hi Broostine



    No problem!

    One more question, just in case - as you have clearly got the more recent version of the LPA - you do have both the financial and the medical one, I hope?
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    Introductions to areas having to move

    The current MNDA housing campaign misses a major issue - it is all very well to campaign for bigger grants to convert properties, but there are those of us living through MND who live in houses that...
  25. Thread: Check in

    by nunhead_man
    Replies
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    1,202

    Hi Broostine, On the LPA front. If you need...

    Hi Broostine,

    On the LPA front. If you need some advice about where this goes to I have the contact details for somebody who came to South London branch whose has done our LPA's that may well be...
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