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  1. Thread: Hello everyone

    by LesleyJ
    Replies
    13
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    1,280

    Hi Jules Welcome to the forum. Your...

    Hi Jules

    Welcome to the forum. Your suggestions at the names made me burst out laughing, it has to be Boris!
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    5,375

    Thanks David, and Ellie thank you that mask looks...

    Thanks David, and Ellie thank you that mask looks great. Mam is using the mask that came with the NIV albeit with double tape on her nose which is helping. I rang MND team today and Pegs have started...
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    Hi David Welcome to the forum. My Mam was...

    Hi David

    Welcome to the forum. My Mam was diagnosed with bulbar in November 19. Her speech is getting worse by the day and she is very breathless. She has her Peg procedure booked for last week...
  4. Thread: Nippy 4

    by LesleyJ
    Replies
    16
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    3,617

    Hi Terry My Mam has the same issue. She has...

    Hi Terry

    My Mam has the same issue. She has tried a few masks but they donít seem to work so always reverts back to the original one, however it really hurts her nose. She now has a boomerang...
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    11,533

    our SALT has just suggested Mam using an app...

    our SALT has just suggested Mam using an app Ďtext to speechí which is free. I canít find it. What is the actual name of this one recommended in this thread please? For an iPad. Thanks
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    well what a nightmare this is eh? Glad to hear...

    well what a nightmare this is eh? Glad to hear you had a movement Terry. I am after some advice if thatís ok. My brother and I take turns in staying with my Mam who has bulbar. We have no symptoms....
  7. Thread: Sad News.

    by LesleyJ
    Replies
    15
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    2,826

    Oh Mark I am so sorry for the loss of your Mum....

    Oh Mark I am so sorry for the loss of your Mum. This disease is pure evil. Sending love and support x
  8. Thread: Voice Banking?

    by LesleyJ
    Replies
    6
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    1,376

    Thanks everyone, this forum is so fab.

    Thanks everyone, this forum is so fab.
  9. Thread: Voice Banking?

    by LesleyJ
    Replies
    6
    Views
    1,376

    Thanks Terry, will do that x

    Thanks Terry, will do that x
  10. Thread: Voice Banking?

    by LesleyJ
    Replies
    6
    Views
    1,376

    Voice Banking?

    Hi everyone
    My Mam has bulbar and her voice is now deteriorating. I have heard of something called Voice Banking but not sure what it is, what it does or how you do it. Is it an app? Any advice...
  11. Thread: Hello from me

    by LesleyJ
    Replies
    14
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    5,059

    Hi Streetwise, yes Mam can still talk although...

    Hi Streetwise, yes Mam can still talk although her voice is getting worse. Iím ok and now sleeping thank goodness. x
  12. Thread: Hello from me

    by LesleyJ
    Replies
    14
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    5,059

    Hi Ellie, thanks for your advice and tips. Iím...

    Hi Ellie, thanks for your advice and tips. Iím sure it will be a temporary thing, although had less than an hour last night so feeling and looking delightful:-)
  13. Thread: Hello from me

    by LesleyJ
    Replies
    14
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    5,059

    Hi Ruby, yes itís horrendous isnít it. Iíve now...

    Hi Ruby, yes itís horrendous isnít it. Iíve now developed lovely insomnia as I have so much going on in my head.
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    Sending love to you, how absolutely horrendous....

    Sending love to you, how absolutely horrendous. keep strong for your Mum x
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    Thanks MMW, great tips, will have a go x

    Thanks MMW, great tips, will have a go x
  16. Replies
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    Thanks for those tips Ellie, I will ask him on...

    Thanks for those tips Ellie, I will ask him on Monday when he comes. X
  17. Thread: Lorazepam

    by LesleyJ
    Replies
    2
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    1,045

    Thanks Ellie. The paramedic was wonderful, I...

    Thanks Ellie. The paramedic was wonderful, I wanted to keep him. Thanks for your advice as ever x
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    Hi Ellie, how kind of you to ask. She is doing...

    Hi Ellie, how kind of you to ask. She is doing ok, she has a sore nose and it hurts the back of her head but I have added a think strip of cotton wool stuck on with Vaseline. her breathing is...
  19. Thread: Lorazepam

    by LesleyJ
    Replies
    2
    Views
    1,045

    Lorazepam

    Hi, my mam has bulbar MND and her breathing is getting worse. She has had 5 panic attacks, the last one being last night and I had to call 999 as her breathing was so bad. We have been given a...
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    Thanks Hayls

    Thanks Hayls
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    Thank you Ellie, I was hoping you would respond....

    Thank you Ellie, I was hoping you would respond. Think I am going to rely on toys bit. She has calmed now so will try your nose tips.
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    Mam has just had a slight panic attack because...

    Mam has just had a slight panic attack because she couldnít get her breath. Our normal breathing exercises together didnít work at first. She appears to have a blocked nose so was struggling to...
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    3,635

    Ellie thank you so much. I have seen references...

    Ellie thank you so much. I have seen references to this but didnít know what they meant. We need next Friday to come quickly, she is so tired and breathless with headaches in the morning. x
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    Thanks Lynne, itís still all very new to us so...

    Thanks Lynne, itís still all very new to us so might give them a call x (non invasive? Apologies for my daft error lol)
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    That should say Ďmy Mam wasí - lol

    That should say Ďmy Mam wasí - lol
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