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  1. Thread: Flail arm

    by Ellie
    Replies
    15
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    2,876

    What symptoms are you trying to alleviate?

    What symptoms are you trying to alleviate?
  2. Replies
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    3,731

    And what ever happened to Cadbury's Snowflake...

    And what ever happened to Cadbury's Snowflake bars??

    I appreciate they weren't from the 1970s, but I was in nappies for the first year of that decade and too young to eat chocolate for the...
  3. Thread: New Member

    by Ellie
    Replies
    5
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    200

    Hi Rick and welcome to the Forum. Sorry you...

    Hi Rick and welcome to the Forum.

    Sorry you were misinformed re emotional lability (EL) (also known as PBA) and cognitive & behavioural changes not affecting those with PLS - as you...
  4. Thread: Hi

    by Ellie
    Replies
    13
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    1,021

    Hi Moto, Spinal motor neurons are also called...

    Hi Moto,

    Spinal motor neurons are also called anterior horn cells.

    ALS (the most common MND) is an anterior horn cell disease.

    Did you ever have a muscle biopsy?

    How long ago was the EMG...
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    Hi Scotty (Eileen) Yep, that's you in a pickle...

    Hi Scotty (Eileen)

    Yep, that's you in a pickle for sure - no point being stuck indoors with a shiny new scooter!!!

    Can I ask do you know the length of the ramp the OT provided?

    I ask...
  6. That's great to hear Sarah. It's a good idea...

    That's great to hear Sarah.

    It's a good idea to double up on some pieces of equipment for upstairs and downstairs.

    Glad to hear you're well looked after by your community services.

    Stay safe...
  7. Thread: Ventilation

    by Ellie
    Replies
    173
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    16,001

    It's always good to have a plan of action Dina -...

    It's always good to have a plan of action Dina - it takes a lot of fear out of the equation and gives you head space to focus on other aspects of life.

    Sounds like you're in good hands with a...
  8. Thread: The best airline

    by Ellie
    Replies
    20
    Views
    1,908

    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...
  10. Thread: Hi

    by Ellie
    Replies
    13
    Views
    1,021

    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".
    ...
  11. Replies
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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.
    ...
  12. Thread: Hi

    by Ellie
    Replies
    13
    Views
    1,021

    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...
  13. Thread: Muscle spasms

    by Ellie
    Replies
    17
    Views
    1,745

    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...
  14. Replies
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    3,731

    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...
  15. Replies
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    3,731

    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.
  16. Thread: New

    by Ellie
    Replies
    12
    Views
    1,039

    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...
  17. Replies
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    765

    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...
  18. Thread: New

    by Ellie
    Replies
    12
    Views
    1,039

    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.
    ...
  19. Replies
    13
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    765

    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...
  20. 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...
  21. Replies
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    1,671

    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.
  23. 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...
  25. 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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