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  1. Thank you to everyone for your care and...

    Thank you to everyone for your care and compassion. I'll keep looking in on the forum from time to time and sincerely hope that you all achieve everything you would wish for.

    Take care.

    Alan
  2. My wonderful friend Jeff has gone with grace and dignity

    Hello everyone.

    At 1.00pm on Thursday 19th January my dear friend of 31 years passed away peacefully at St. Joseph's Hospice, Thornton.

    Following a chest infection just before christmas Jeff's...
  3. Thread: Be Prepared !

    by Alanwig
    Replies
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    Thanks for the replies, CB, I wasn't aware of...

    Thanks for the replies,

    CB, I wasn't aware of the requirements by the energy provider, wonder how many others have also learnt from reading your comment?
    The hospice has a back up generator in...
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    Hi Robyn, Thanks for the link, I've taken a...

    Hi Robyn,

    Thanks for the link, I've taken a quick look and it appears the forum members found a device specific to the PS3 that aided lack of dexterity in the hand but still required hand...
  5. Thread: Be Prepared !

    by Alanwig
    Replies
    4
    Views
    5,005

    Be Prepared !

    There was a power failure at Jeff's hospice caused by an internal electrical problem, which left him gasping without his NIV and the RN's rushing to him to get his NIV hooked up to his portable...
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    Online and Video games

    Anyone playing online and video games who doesn't have the option of using hand or voice controls?

    Jeff used to be a keen player of World of Warcraft but had to give up as his MND left him without...
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    Latest from Jeff in Liverpool

    Jeff's ongoing struggle with Aintree Hospital has led to them producing a rabbit out of the hat, not a Trache as he wants but a new NIV Bi-pap machine with an upper limit of 40 as opposed to his...
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    Hi John, Glad to hear about your progress,...

    Hi John,

    Glad to hear about your progress, hopefully things will start to move along now.

    Given that there are few people with MND in your situation, alone plus 2 kids, I'm shocked that there...
  9. Thread: MND Awareness

    by Alanwig
    Replies
    15
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    6,910

    Hi Sarah, Inspirational as ever, the movie was...

    Hi Sarah,

    Inspirational as ever, the movie was eloquent, graceful and extremely powerful - I hope it motivates others with MND to banish forever the word 'sufferer' from their vocabulary.

    Alan
  10. Thread: Update on Jeff

    by Alanwig
    Replies
    11
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    8,847

    Thanks CB. I do think this is an issue the...

    Thanks CB.

    I do think this is an issue the MNDA need to champion. I sometimes wonder why so many MND sufferers are against the idea of a Trache, it is of course a matter of personal choice, but...
  11. Thread: Update on Jeff

    by Alanwig
    Replies
    11
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    8,847

    Many thanks Jeannie, Jeff saw the item about...

    Many thanks Jeannie,

    Jeff saw the item about the family arguing fo the right to die, given hsi situation he found that ironic as well.

    Thanks for the Bluepete link itwas helpful, sad to think...
  12. Thread: Update on Jeff

    by Alanwig
    Replies
    11
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    8,847

    Hi CB, Thought I'd typed your name in with...

    Hi CB,

    Thought I'd typed your name in with Jeannie's in the above post thanks for the response. Have a look above, for my thoughts on what's happening.

    I may be way off beam but I actually...
  13. Thread: Update on Jeff

    by Alanwig
    Replies
    11
    Views
    8,847

    Hi Jeannie, Other than saying it's not in his...

    Hi Jeannie,

    Other than saying it's not in his best interests, they haven't commited to giving any medical reasons why. Me and Jeff both think it's more about the cost of palliative care, than his...
  14. Thread: Update on Jeff

    by Alanwig
    Replies
    11
    Views
    8,847

    Update on Jeff

    Hi Folks,

    It's been a while so I though I'd just update you on my mate Jeff.

    Jeff spent a total of 8 weeks in hospital following his PEG, this had nothing to do with the op but rather a...
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    Hi Jeannie, There you go, at it again, the...

    Hi Jeannie,

    There you go, at it again, the font of all wisdom, how do you do that?

    However you manage to be so resourceful I'm very grateful, you should be a paid consultant for the MNDA.
    ...
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    Hi and thanks for getting back to me. It seems...

    Hi and thanks for getting back to me.

    It seems this is a common problem and Jeff has had the same problems you mentioned. Jeff has a PEg now but still has pureed food and drinks as normal with...
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    Hi Chris, Thanks for the feedback, it will...

    Hi Chris,

    Thanks for the feedback, it will help Jeff to know he's not alone in this, funnily enough the doctor in Fazakerley Hospital recommended gloves just today. Stay Positive Chris YNWA.
    ...
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    Hi Jeannie, It's taken a bit of prodding but...

    Hi Jeannie,

    It's taken a bit of prodding but Jeff got a call from Dr Shneerson this afternoon and they happily discussed the merits and demerits of the Tracheostomy. Dr. Shneerson was very...
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    Loss of hands and fingers

    Hi All,

    Has anyone lost full use of arms, hands and fingers, what symptoms did you have?

    My friend Jeff is experiencing clawing with his fingers, he can no longer use his arms and hands but...
  20. Cheers Clive, An interesting article and proof...

    Cheers Clive,

    An interesting article and proof that real quality of life can be achieved post Trache.

    Many thanks,

    Alan
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    Excellent job John, Awareness is everything in...

    Excellent job John,

    Awareness is everything in relation to the fight against MND, and you just woke up a significant part of the country to the need to provide more help and assistance to...
  22. Thanks for the response Jeannie. Jeff has been...

    Thanks for the response Jeannie.

    Jeff has been a mate for nearly thirty years and I wan't to give him the best support and advice I can.

    Having spoken directly to the Hospital it would appear...
  23. My thanks to Luce and Crossolly for their advice....

    My thanks to Luce and Crossolly for their advice.

    I'm surprised that their doesn't appear to be any wider debate about Tracheostopy within this forum, given that for some it can significantly...
  24. Tracheoscopy - why not and where's the debate?

    Hi All,

    If you've read my hello or previous posts you will know I have a life long friend Jeff, who has ALS diagnosed in September 2010 with a prognosis of 12 -18 months of life.

    He is...
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    Hi Graham, Many thanks for taking the time to...

    Hi Graham,

    Many thanks for taking the time to comment. I can't fault his spirit, the advice he appears to be getting is once respiratory failure happens that's it. I guess it's the ethics v...
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