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  1. Thread: Drop foot

    by mags55
    Replies
    25
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    8,974

    I hardly suffer with the pain from dropped feet....

    I hardly suffer with the pain from dropped feet. At night, I've been given blow up boots to wear in bed, to keep feet upright.
    My toes are purple with little sores on them, I don't walk now. It's...
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    Thanks AM and Miranda I having trouble with my...

    Thanks AM and Miranda
    I having trouble with my bio vocals too, I'm typing all the wrong words, I'm getting bad at typing anyway as it is : (
    Many thanks
    Mags xx
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    Thanks Ellie Let's hope it does the trick. It's...

    Thanks Ellie
    Let's hope it does the trick. It's driving me nuts
    Many thanks
    Mags x
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    Hi all My head dropped so suddenly, my physio...

    Hi all
    My head dropped so suddenly, my physio bought one neck collar, it didn't lift my head up and it hurt when I wear it. She has ordered a head master collar. Does it hold your head up at all??...
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    Hi jan I hop you will be comfortable in nursing...

    Hi jan
    I hop you will be comfortable in nursing home
    Mags sending you a hug
    Xx
  6. Thread: Hello Everyone!

    by mags55
    Replies
    8
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    3,558

    Hi Hayley I don't you are the right person to...

    Hi Hayley
    I don't you are the right person to hear this,
    My son , my son in law my nephew done london to Brighton bike ride for Mnd. They raised 2200 between them for MND. The total for was over...
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    Good for you AM Xx

    Good for you AM
    Xx
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    Hi Terry My hospice doesn't do respite anymore....

    Hi Terry
    My hospice doesn't do respite anymore. Thanks for explaining.
    Mags x
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    Oh no AM I hope you got over your bad...

    Oh no AM
    I hope you got over your bad experience. Mel's fear is keeping me in hospital, when I had my breathing problems, they were going to keep me in. But I've every thing at home, so they let him...
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    Hi Nettie My husband scrapes some yucky stuff of...

    Hi Nettie
    My husband scrapes some yucky stuff of the roof of my mouth everyday .I've been given some harder brushes on sticks.(the sponge ones don't remove it)
    Mags x
  11. Thread: New diagnosis

    by mags55
    Replies
    25
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    6,371

    Hi roewe Welcome to forum. I too have bulbar,...

    Hi roewe
    Welcome to forum. I too have bulbar, I've been diagnosed for 28 months and I had symptoms 18 months before that.
    As Ellie said, that makes four rilazole you are taking, it s supposed to be...
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    Hi AM I too get a weird taste in my mouth, I'm...

    Hi AM
    I too get a weird taste in my mouth, I'm on peg feed only. Can you drink, you mentioned drinking peppermint cordial?
    Have you got a mint spray ( but be careful it doesn't down your throat) I...
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    Hi Wendy How clever are you to think of that....

    Hi Wendy
    How clever are you to think of that. Brilliant
    Mags xx
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    Hi Jan It's not fair. Life isn't fair, you wish...

    Hi Jan
    It's not fair. Life isn't fair, you wish the same as me now. I've got my four granddaughters , I bought them memorable things like swarvoski animal, pandora charms'. Framed photos, each a...
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    Dude Welcome back. Ellie done well. Magsxx

    Dude
    Welcome back. Ellie done well.
    Magsxx
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    Hi Karen I must get a hoist. But I've been...

    Hi Karen
    I must get a hoist. But I've been putting it off. I tranfer from the wheelchair to the loo by mel holding me and he walks backwards. It takes me ages and I can't move my foot at times. I'm...
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    Hi David Good to hear from you You must miss...

    Hi David
    Good to hear from you
    You must miss Micheal very much, you were a good friend to him.
    I have gone downhill very fast in the last three months, but I'm holding on.
    Good luck to you
    Mags...
  18. Thread: A down day

    by mags55
    Replies
    11
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    3,710

    Good, I'm glad your feeling better. Xx

    Good, I'm glad your feeling better.
    Xx
  19. Thread: A down day

    by mags55
    Replies
    11
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    3,710

    It was very scary, that's twice this has...

    It was very scary, that's twice this has happened. Last night was a bad night.
    We thought we'd call an ambulance.. but I cleared it, it took three hours. I sit upright in bed but at times,...
  20. Thread: A down day

    by mags55
    Replies
    11
    Views
    3,710

    You have every right to feel sorry yourself. We...

    You have every right to feel sorry yourself. We are going through enomous changes. I have to stop myself from crying. Because when I start I can't stop (emotional lability) it can go on for a couple...
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    Hi Ellie and TC If I have no change in a couple...

    Hi Ellie and TC
    If I have no change in a couple of weeks I will abandon the drugs. My friend who has MND ,same neurologist sent her for a dopamine scan and she has got dopamine defiency on one side....
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    Hi, Ellie, Your the same as me. I can't open my...

    Hi, Ellie,
    Your the same as me. I can't open my Eyes while laying down. I don't have any wrinkles on my face.
    Are you saying masked face comes Mnd on its own? My neurologist says i have non...
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    MND and Parkinson's

    Hi all
    I went to my neurologist ,she noticed I don't blink much and I can't break my stare at times.
    She told that a sign of Parkinson (. Masked face. ) she sent me for a dopamine scan. I don't...
  24. Thread: My book

    by mags55
    Replies
    35
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    13,514

    I didn't send the book back because was the very...

    I didn't send the book back because was the very first, I changed it slightly, there was so many mistakes. that book went round to so many people, I wasn't surprised .
    Xx
  25. Thread: My book

    by mags55
    Replies
    35
    Views
    13,514

    Hi CC You have a lot to write about, you needn't...

    Hi CC
    You have a lot to write about, you needn't rush it. Funny at how you write something and lots of things come flooding back.
    I ordered 20 hARdback books, the original one, pages came away...
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