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  1. Replies
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    Cheaper than doing 3 x 2 month supplies Andy,...

    Cheaper than doing 3 x 2 month supplies Andy, factoring in 3 shipping and 3 handling charges - you were wise to get a full 6 month supply!
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    Oh Dina, that is the news we've ALL been waiting...

    Oh Dina, that is the news we've ALL been waiting for!!

    Everything still crossed for Thursday.

    Love Ellie.
  3. Thread: Limb Tremors

    by Ellie
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    Hi Steve, Sorry to hear of D's limb tremors...

    Hi Steve,

    Sorry to hear of D's limb tremors and hope she isn't distressed by them.

    One thing in particular springs to mind:

    If the tremors mainly happen towards the latter part of the day...
  4. Thread: Hi. Im terrified

    by Ellie
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    Thank you for your kind words. Try and put...

    Thank you for your kind words.

    Try and put yourself first for a while - eat well, stay hydrated, get proper sleep and exercise (even a walk in the park)

    Treat yourself - it doesn't have to...
  5. Thread: Hi. Im terrified

    by Ellie
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    No, that's not how MND presents. Try hard to...

    No, that's not how MND presents.

    Try hard to believe your GP and her colleague.

    I am sorry this is causing you anxiety, which in itself will only increase your twitches, as you have discovered....
  6. Thread: Flail arm

    by Ellie
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    Sorry, I thought you were talking about cramps or...

    Sorry, I thought you were talking about cramps or spasms etc.

    I agree with your Neuro that neither whey nor creatine will help. MND is not a muscle disease, but one which stops signals getting to...
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    50 quid duty on 6 months supply isn't bad, Andy....

    50 quid duty on 6 months supply isn't bad, Andy.

    Wish you luck from the bottom of my heart!

    Love Ellie.
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    I am so sorry to hear Tony has gone, Devonmaid. ...

    I am so sorry to hear Tony has gone, Devonmaid. Thank you for taking the time to post at this very emotional time, it's much appreciated.

    What a bittersweet day yesterday was for your family,...
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    Hi Aimee, Another thing to rule out is a...

    Hi Aimee,

    Another thing to rule out is a stroke or one or more TIA (mini stroke)

    Hope for the best.

    Love Ellie.
  10. Thread: Flail arm

    by Ellie
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    What symptoms are you trying to alleviate?

    What symptoms are you trying to alleviate?
  11. Replies
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    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...
  12. Thread: New Member

    by Ellie
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    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...
  13. Thread: Hi

    by Ellie
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    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...
  15. 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...
  16. Thread: Ventilation

    by Ellie
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    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...
  17. Thread: The best airline

    by Ellie
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    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...
  19. Thread: Hi

    by Ellie
    Replies
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    1,141

    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.
    ...
  21. Thread: Hi

    by Ellie
    Replies
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    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...
  22. Thread: Muscle spasms

    by Ellie
    Replies
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    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...
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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.
  25. Thread: New

    by Ellie
    Replies
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    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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