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  1. Thread: PEG and RIG

    by Marigold
    Replies
    152
    Views
    23,341

    How disappointing and frustrating Pinkelle. If...

    How disappointing and frustrating Pinkelle.
    If you can’t feel safe and cared for in hospital, we have lots to worry about.
    I hope you can get home soon.
    Marigold
  2. Replies
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    4,546

    Awwwww grim Barry! Hope you’re feeling better...

    Awwwww grim Barry!
    Hope you’re feeling better soon...
    Marigold
  3. Replies
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    1,610

    Well I did think exactly that Ellie! But I guess...

    Well I did think exactly that Ellie!
    But I guess I will only find out when I get there.
    If that turns out to be an issue they will be getting a BOGOF too.
    Never been known to miss an opportunity...
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    1,610

    NWell Terry, Since you ask... As a consequence...

    NWell Terry,
    Since you ask...
    As a consequence or my recent grumble on the forum about the PIP process, I have been invited by the MNDA campaign team to visit the Houses of Parliament to a drop in...
  5. Replies
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    1,610

    Great! Rapid responses from the pros. I knew I...

    Great!
    Rapid responses from the pros.
    I knew I could rely on you both.
    I've had an invitation to London so will have a look at these links.
    Thanks both,
    Marigold
  6. Replies
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    Public/disabled toilets!

    Hi Everyone,
    I need advice about loos!
    I'm hoping you all have lots of ideas for me.
    I now use a hoist to get from power chair to commode/bed etc. My WAV is arriving today (Hooray!) My bladder is...
  7. Thread: PEG and RIG

    by Marigold
    Replies
    152
    Views
    23,341

    That’s a huge relief I’m sure. Well done. Hope...

    That’s a huge relief I’m sure.
    Well done.
    Hope the recovery is smooth too.
    Marigold
  8. Replies
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    4,546

    Oh no Terry, Let's hope things are on the cusp...

    Oh no Terry,
    Let's hope things are on the cusp of turning. You are definitely due some better luck.
    The day you are not so upbeat is a worrying day for all of us!
    Thinking of you,
    Marigold
  9. Thread: PEG and RIG

    by Marigold
    Replies
    152
    Views
    23,341

    Thanks Pinkelle and Debbie X

    Thanks Pinkelle and Debbie
    X
  10. Thread: PEG and RIG

    by Marigold
    Replies
    152
    Views
    23,341

    Not on own and ok! Did have an emotional moment...

    Not on own and ok!
    Did have an emotional moment with SALT lady though!
    Thought I was up together emotionally at the moment. Obviously not!
    I hate the way it catches you out...
    Still, over that...
  11. Thread: PEG and RIG

    by Marigold
    Replies
    152
    Views
    23,341

    Thanks Ellie, That’s reassuring. To be honest, I...

    Thanks Ellie,
    That’s reassuring. To be honest, I truly didn’t see that one coming so soon!
    But I really appreciate everyone’s support here.
    Marigold
  12. Thread: PEG and RIG

    by Marigold
    Replies
    152
    Views
    23,341

    Hi Pinkelle, SaLT just left. Just had the PEG...

    Hi Pinkelle,
    SaLT just left. Just had the PEG conversation... referral being made .
    Seem to have got to this point very quickly and it’s pretty scary!!!
    Marigold
  13. Replies
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    Hi Phil, I can totally understand how scared you...

    Hi Phil,
    I can totally understand how scared you are feeling right now! I have certainly been there.
    I can only speak for my own MND and have limited medical knowledge but your symptoms seems to be...
  14. Replies
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    6,828

    Great news Lynne. That is sounding really...

    Great news Lynne.
    That is sounding really positive!
  15. Thread: Lovely Wendy.

    by Marigold
    Replies
    13
    Views
    2,956

    Sad news. I really got a sense of a lovely...

    Sad news.
    I really got a sense of a lovely person from Wendy’ posts. She also had some lovely family photos on her profile making me feel like I knew her a little!!
    Marigold
  16. Replies
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    4,364

    Hi Wecky, None of the symptoms you have written...

    Hi Wecky,
    None of the symptoms you have written about sound anything like my MND, especially the pain bit. I have never had any pain.
    Here’s hoping your diagnosis will be something else!!
    Kind...
  17. Replies
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    Hi Camper, I was diagnosed in May 18 and am not...

    Hi Camper,
    I was diagnosed in May 18 and am not far off your husbands stage. No feeding yet and can still speak after a fashion!
    I have several ‘ladies’ now.
    One comes for 2 hours in morning, to...
  18. Replies
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    2,636

    Hi Lololo Welcome to the forum. I can only...

    Hi Lololo
    Welcome to the forum.
    I can only speak as a parent but I am 52 and was diagnosed in May. My children are 25,23 and 20.
    I can’t tell you how painful it was to share my news with them....
  19. Replies
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    3,738

    Hi Annie, I too had a stair lift fitted a couple...

    Hi Annie,
    I too had a stair lift fitted a couple of months ago.
    The only way I can get on and off is by my husband lifting me. As a consequence of all the lifting he is doing, his back is...
  20. Thread: Too fast!

    by Marigold
    Replies
    32
    Views
    5,379

    Hi Newbie, Pinkelle and Ellie, I have recently...

    Hi Newbie, Pinkelle and Ellie,
    I have recently started with my 'ladies' too. I was terrified about the whole 'loo thing' but seeing as they are cool about it, it makes it so much easier for me....
  21. Thread: Riluzole

    by Marigold
    Replies
    53
    Views
    22,316

    Thanks Everybody, I will plan to eat on empty...

    Thanks Everybody,
    I will plan to eat on empty stomach then.
    Though this will probably end up being a challenge in itself as I always seem to be really hungry nowadays!
    Marigold
  22. Thread: Riluzole

    by Marigold
    Replies
    53
    Views
    22,316

    Hi Everyone, I am now taking my riluzole and...

    Hi Everyone,
    I am now taking my riluzole and have experienced no side affects so far ( a month in),
    I was not given much guidance on when to take it other than every 12 hours to suit me.
    My...
  23. Replies
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    2,134

    We are all at different stages Catsparkle, but we...

    We are all at different stages Catsparkle, but we all have plenty of empathy and understanding.
    I can’t imagine how hard it must be however, to be newly on your own at this time.
    I really feel for...
  24. Replies
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    3,648

    I think you lost me at the parachute bit...�� ...

    I think you lost me at the parachute bit...��

    Marigold
  25. Thread: Too fast!

    by Marigold
    Replies
    32
    Views
    5,379

    Hi Pinkelle, I so 'get' where you are right now!...

    Hi Pinkelle,
    I so 'get' where you are right now!
    My husband works out of the home several days a week. I have just got my rota of 'ladies' coming in to help sorted out. This took some getting used...
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