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  1. Thread: The best airline

    by Ellie
    Replies
    16
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    1,471

    Hi Jude, Yes, access to toilets can make or...

    Hi Jude,

    Yes, access to toilets can make or break our hopes of getting out :(

    Two ideas are:

    Using a bottle in the bathroom - you may need help for this? Or use a condom sheath that day....
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    Oh Sue, that is definitely something else to...

    Oh Sue, that is definitely something else to celebrate!!

    Getting 7 overnights is fantastic, but necessary - I'm thrilled for you.

    Fingers crossed that Steve stays well and can get home to...
  3. Thread: Hi

    by Ellie
    Replies
    10
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    408

    Moto, if your Neurologist suspects MND, you...

    Moto, if your Neurologist suspects MND, you should be referred on.

    This is a list of specialist centres in the UK, excluding Scotland. Look for your nearest "care centre".
    ...
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    Pleased that carer training is progressing, Dina,...

    Pleased that carer training is progressing, Dina, even though it must be tiring and/or repetitive (aka a pain in the bum after the 5th demonstration) but soooo worth it if it means you get home.
    ...
  5. Thread: Hi

    by Ellie
    Replies
    10
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    408

    Hi Moto and welcome to the Forum. Sorry about...

    Hi Moto and welcome to the Forum.

    Sorry about your suspected diagnosis. You should def see an MND specialist if you have not done so already.

    There is no magic stem cell treatment available...
  6. Thread: Muscle spasms

    by Ellie
    Replies
    17
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    1,608

    Thanks Lynne. I'm in a "Watchful Waiting"...

    Thanks Lynne.

    I'm in a "Watchful Waiting" stage at the moment and is being monitored with scans.

    It has grown but thankfully not too painful - it's my current niggle. I can't have a...
  7. Replies
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    Oh Dina, I could weep for joy :) There...

    Oh Dina, I could weep for joy :)

    There weren't any 'you-specific' issues raised so far, so hopefully there won't be any last minute glitches.

    Will they give you any meds you're due (through...
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    Hopefully their intervention will make a...

    Hopefully their intervention will make a difference for you Dina.

    I've everything crossed for you.

    Big hug.

    Love Ellie.
  9. Thread: New

    by Ellie
    Replies
    12
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    841

    Hi JoJo, I wonder if it'd be worthwhile you...

    Hi JoJo,

    I wonder if it'd be worthwhile you ring the MND Connect Helpline who could talk you through things?

    They are open Monday - Friday from 9am-5pm & 7-10.30pm. Phone number is 0808 802...
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    Assuming the EMG also showed reinnervation and...

    Assuming the EMG also showed reinnervation and chronic neurogenic changes, Catherine and your husband is not showing signs of wasting (atrophied) muscles, it would suggest that he has a slower form...
  11. Thread: New

    by Ellie
    Replies
    12
    Views
    841

    Hi JoJo and welcome to the Forum. Sorry about...

    Hi JoJo and welcome to the Forum.

    Sorry about your partner's diagnosis.

    As time goes on, please feel free to ask or answer any questions, or just to share any worries or fears you may have.
    ...
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    Hi Catherine and welcome to the Forum. Sorry...

    Hi Catherine and welcome to the Forum.

    Sorry to hear of your husband's MND diagnosis.

    It's impossible to answer your prognosis question, I'm sorry to say.

    But.... from how you've described...
  13. Replies
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    Hmmm, it strikes me that you don't do as much...

    Hmmm, it strikes me that you don't do as much online shopping as I do :D

    Hope they get through Customs easily and quickly. You never know, they may make it through without charge!

    You should...
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    Dina, I am heartened that you can at least get a...

    Dina, I am heartened that you can at least get a day pass out of the hospital, but disheartened that the firemen didn't follow through on their rescue mission.....

    The more I think of how your...
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    Great news Douglas. (now to free the...

    Great news Douglas.

    (now to free the Wythenshawe One :(:()

    Best wishes to you and Chrissie.

    Love Ellie.
  16. Replies
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    I celebrate the GOOD CARERS I have who make me...

    I celebrate the GOOD CARERS I have who make me laugh every day.

    We laughed heartily this morning on discovering one had put my shoes on the wrong feet - we'd been chatting so much that no one...
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    Sending good vibes and a big hug to you both,...

    Sending good vibes and a big hug to you both, Douglas & Chrissie.

    1090


    If there is one good thing about your prolonged hospital stay, it's that you have the wonderful Dina for company and...
  18. Don't worry Debbie, you're as sane as the rest of...

    Don't worry Debbie, you're as sane as the rest of us :D

    Have as good a weekend as you can.

    Love Ellie.
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    I am lost for words, Dina. Biggest hug ever....

    I am lost for words, Dina.

    Biggest hug ever.

    Love Ellie.
  20. Replies
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    Congrats to you both, Hayls :D:D Hopefully...

    Congrats to you both, Hayls :D:D

    Hopefully you can restart the sertraline very soon, if you haven't done so by now, and get back to some sort of 'normal' emotions - it may take a while to...
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    Oh I'm sorry Wailywoo but the charity I referred...

    Oh I'm sorry Wailywoo but the charity I referred to is based in Dublin.

    If you search online for 'Recycling Mobility Aids', a few places come up but they're not really near you in Crewe :(
    ...
  22. Replies
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    Daisymeg, I cannot imagine your devastation at...

    Daisymeg, I cannot imagine your devastation at losing your beloved husband so suddenly. Even with his diagnosis, you should've had more years together.

    I would also recommend counselling. I...
  23. Hi Kate, I love that you note your...

    Hi Kate,

    I love that you note your achievements every day :D - great to focus on what you CAN do.

    Love Ellie.
  24. Hi Sarah, Yes, MND progression causes HUGE...

    Hi Sarah,

    Yes, MND progression causes HUGE upheaval not only to your life, but to that of your nearest & dearest too.

    Progression generally does mean making adjustments to your lifestyle - ...
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    Wailwoo, if you can't find any local place for...

    Wailwoo, if you can't find any local place for the equipment, there are charities who would love to take it overseas.

    I give all my unneeded equipment (which my health service won't take back) to...
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