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  1. Thread: Terry

    by Gillette
    Replies
    101
    Views
    12,647

    Hi Terry, thank you for the update but Iím sorry...

    Hi Terry, thank you for the update but Iím sorry youíre still in hospital and suffering so much pain. I really hope the medics will be able to help you soon.
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    8
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    2,305

    Vicky, Iím so sorry for your loss. I can well...

    Vicky, Iím so sorry for your loss. I can well understand the tumultuous feelings and emotions you are going through but I donít have any words that will help you to cope - I really wish I did.

    Do...
  3. Thread: PEG Advice

    by Gillette
    Replies
    42
    Views
    13,610

    Hi Hayls Are you taking any medication for...

    Hi Hayls

    Are you taking any medication for spasms? I take Baclofen through my PEG which mostly keeps the spasms under control.

    Good luck with getting them sorted.
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    976

    Thank you, Panniertank. I hope you will be able...

    Thank you, Panniertank. I hope you will be able to visit your mother soon.
  5. Replies
    3
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    976

    To all of you on your own today

    Inevitably there will be some of us alone today, for all or some of the day. I just want to let you know that I am thinking of you and sending you Christmas hugs and best wishes. So youíre not...
  6. Replies
    384
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    38,740

    Todayís good thing is sort of Christmas related....

    Todayís good thing is sort of Christmas related. I get a huge amount of pleasure from giving family and friends presents that they love and enjoy. This morning I was able to do that for a very...
  7. Thread: Lynn & Dave

    by Gillette
    Replies
    6
    Views
    1,611

    Hi Dave and Lynn ad welcome to the forum that...

    Hi Dave and Lynn ad welcome to the forum that no-one wants to need to join, sorry that Lynn has had MND diagnosed. Feel free to ask any questions. Thereís usually someone who can help as there are...
  8. Thread: Terry

    by Gillette
    Replies
    101
    Views
    12,647

    Thank you for letting us know, CC. Good luck...

    Thank you for letting us know, CC.

    Good luck Terry. Hope youíre fighting fit very soon.
  9. Replies
    384
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    38,740

    Itís lovely to hear you being positive about your...

    Itís lovely to hear you being positive about your RIG. As Ellie has said, you are only a few days post-op so youíve done really well. It certainly sounds like a good thing to me!
  10. Replies
    417
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    85,342

    Thank you, Kayleigh. What a fabulous selection...

    Thank you, Kayleigh. What a fabulous selection box of Christmas goodies.

    https://www.youtube.com/watch?v=hC3AphnJLbE
  11. Replies
    128
    Views
    28,445

    Hi Panniertank Although I live in Greater...

    Hi Panniertank
    Although I live in Greater Manchester Iím actually a southerner (shock, horror) so a lot of the sayings up here are a mystery to me. However, my late husband (also a southerner) used...
  12. Replies
    128
    Views
    28,445

    Hi Panniertank Unfortunately MND has a nasty...

    Hi Panniertank

    Unfortunately MND has a nasty habit of moving the goalposts when you think you have it sussed. It can feel as though itís impossible to stay one step ahead.
  13. Replies
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    3,197

    It took me a few months to find the courage to...

    It took me a few months to find the courage to even visit the MNDA website but when I did I found this wonderful forum. I can truthfully say that this forum has saved my life, particularly one person...
  14. Thread: Panic attacks

    by Gillette
    Replies
    21
    Views
    4,552

    Lesley, Iím sorry your mum is having panic...

    Lesley, Iím sorry your mum is having panic attacks - they are horrid to suffer but also for loved ones to witness. You are doing a great job supporting your mum.

    Sheilaís post hits the spot. Well...
  15. Replies
    4
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    1,191

    Hi Doug First things first. Having MND...

    Hi Doug

    First things first. Having MND doesn’t mean you’re in a competition to see who is in the worst state. I’m sure you know as well as the rest of us that everybody’s MND journey is...
  16. Thread: Russ60

    by Gillette
    Replies
    12
    Views
    3,196

    Hi Russ60 Welcome to the forum no-one wants to...

    Hi Russ60

    Welcome to the forum no-one wants to need. Sorry about your diagnosis. Youíve come to the right place for information and support. Sorry I canít help with your questions but Iím sure...
  17. Replies
    77
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    14,397

    Hi TAPG1 When Doug asked if you had a...

    Hi TAPG1

    When Doug asked if you had a diagnosis you gave a somewhat cryptic reply. Advice about headaches would vary depending on what diagnosis you have been given.

    I understand that you are...
  18. Replies
    18
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    4,688

    Chrissie, Iím sorry you have fallen victim to one...

    Chrissie, Iím sorry you have fallen victim to one of the viruses thatís doing the rounds. I hope you soon recover.

    With regard to Douglas, I agree with Ellie but would also suggest talking to his...
  19. Thank you for posting these, Doug. The article by...

    Thank you for posting these, Doug. The article by Joe Hammond is heart-rending and exquisitely written.
  20. Thread: So so tired

    by Gillette
    Replies
    55
    Views
    11,457

    Hi Terry Iím sorry youíre having a tough...

    Hi Terry

    Iím sorry youíre having a tough time. Have you thought about ringing your MND nurse and/or respiratory nurse about your breathing? It would be a good idea to have it checked out sooner...
  21. Replies
    31
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    5,668

    Hi Lynne, I was chatting to Judith, the...

    Hi Lynne,

    I was chatting to Judith, the manager of the Neuro research team at Salford, when she called round today. They are starting as satellites for two studies. One has just started recruiting...
  22. Replies
    31
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    5,668

    Hi Lynne Oh what a blow, having to make the...

    Hi Lynne

    Oh what a blow, having to make the decision to use your powered wheelchair in your home. Very well done for actually making that decision, especially with the implications for your...
  23. Replies
    18
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    4,688

    Yes, I think he is, Chrissie! Itís good to know...

    Yes, I think he is, Chrissie! Itís good to know he still has his spirit. ;)
  24. Thread: New

    by Gillette
    Replies
    51
    Views
    13,147

    Hi Jojo, One of the things that make MND so...

    Hi Jojo,

    One of the things that make MND so hard to cope with is that there is no ďusual ď. Everybodyís MND journey is different, which is why itís so hard to anticipate what is likely to happen...
  25. Replies
    18
    Views
    4,688

    Hi Chrissie, I agree with Ellie about...

    Hi Chrissie,

    I agree with Ellie about considering an NG tube for Douglas. Have you thought about trying to get him admitted to the vent unit?

    The two of you are so obviously devoted to each...
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