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  1. Replies
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    694

    Thank you all for your replies. I know the 'needy...

    Thank you all for your replies. I know the 'needy dog' situation - we have a 6 month old Irish Setter - great fun but quite a handful when he 'decides' he wants to play.

    Just to be clear it is...
  2. Thread: Rch4

    by Sportingmac
    Replies
    366
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    89,587

    Doblett: are you practicing that age old tactic -...

    Doblett: are you practicing that age old tactic - the best form of defence is to attack? If you put as much effort into enlightening us as you do by calling us out - then perhaps we might see clarity...
  3. Replies
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    694

    Neater Arm Assist

    Has anyone had experience or use the Neater Arm Assist?

    I had a home visit from Neater via my S&LT and OT - seems a very useful piece of kit for those of us who have lost use of their shoulders...
  4. Thread: Rch4

    by Sportingmac
    Replies
    366
    Views
    89,587

    "...In the meantime, we would recommend that...

    "...In the meantime, we would recommend that members take a step back from the topic of RCH4, as we feel at this stage, everything that can be said, has been...]

    Sort of contradicts your points...
  5. Thread: Rch4

    by Sportingmac
    Replies
    366
    Views
    89,587

    Still can't find a link to the Charity...

    Still can't find a link to the Charity registration in the US - can you help me out with that Doblett?

    Chas
  6. Thread: Rch4

    by Sportingmac
    Replies
    366
    Views
    89,587

    I have tried to find where the 'charity' is...

    I have tried to find where the 'charity' is registered in the US - no luck so far. Perhaps you could help me out here?

    Kind regards

    Chas
  7. Thread: Rch4

    by Sportingmac
    Replies
    366
    Views
    89,587

    Tried - but no luck. However - I did find this...

    Tried - but no luck. However - I did find this https://www.ncbi.nlm.nih.gov/pubmed/31035235
  8. Thread: Rch4

    by Sportingmac
    Replies
    366
    Views
    89,587

    Did you actually read the post from MND Admin?

    Did you actually read the post from MND Admin?
  9. Thread: Rch4

    by Sportingmac
    Replies
    366
    Views
    89,587

    Fully support your stance Ellie. Reflecting my...

    Fully support your stance Ellie. Reflecting my views on this topic.
  10. Thread: Rch4

    by Sportingmac
    Replies
    366
    Views
    89,587

    Originalthought - I am being realistic and...

    Originalthought - I am being realistic and pragmatic. I can make a spreadsheet say whatever I want - quite easy really. There are variants of MND - some fast progressing some slow progressing. Which...
  11. Thread: Rch4

    by Sportingmac
    Replies
    366
    Views
    89,587

    Wondering what they were specialising in? Who is...

    Wondering what they were specialising in? Who is the Pharma company making the drug? All a little too vague for me I'm afraid.

    From the disclaimer "​​Nothing in this web site may be considered to...
  12. Replies
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    968

    Hi Billy You echo my thoughts entirely. As...

    Hi Billy

    You echo my thoughts entirely. As Dodie Weir points out "it has been 23 years since we 'discovered' Riluzole". I have been asking that question too for the last 5 years. ( I take Riluzole...
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    2,250

    Hi Debbie, Excellent result. As for...

    Hi Debbie,

    Excellent result.

    As for postcode dependent - my view is that many medical staff are not benefits advisors or indeed are aware of the benefits system - and so it appears that if you...
  14. Thread: Rch4

    by Sportingmac
    Replies
    366
    Views
    89,587

    Thanks for that. I guess that approval will never...

    Thanks for that. I guess that approval will never be given for RCH4 then - unless a large R&D budget is available - and that none of the big Pharma's seem interested - why is that then?
  15. Thread: Rch4

    by Sportingmac
    Replies
    366
    Views
    89,587

    All they have to do is submit it for trials to...

    All they have to do is submit it for trials to the FDA surely?
  16. Replies
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    2,250

    Can you tell me why a GP or Consultant or other...

    Can you tell me why a GP or Consultant or other specialist can't just sign a DS1500? The rules are quite straight forward but not rigorous. DS1500 raises the awareness of a patient that may not live...
  17. Thread: Rch4

    by Sportingmac
    Replies
    366
    Views
    89,587

    mmmmh - explain this please "Nothing in this web...

    mmmmh - explain this please "Nothing in this web site may be considered to be medical advice."
  18. Thread: Rch4

    by Sportingmac
    Replies
    366
    Views
    89,587

    Wholeheartedly agree regarding timesacles for a...

    Wholeheartedly agree regarding timesacles for a 'cure'. Unfortunately that 'gap' is being filled with 'alternative' solutions. "we are all different" in my view is why we have such gap fillers....
  19. Hi Bluebell, I have a ceiling hoist fitted -...

    Hi Bluebell,

    I have a ceiling hoist fitted - it is a single person operation and works really well. OT should recommend. I have been reduced to one arm and hand but my wife is able to safely...
  20. Thread: Rch4

    by Sportingmac
    Replies
    366
    Views
    89,587

    I go through step phases with my MND. For example...

    I go through step phases with my MND. For example - after diagnosis I went 2 years without much reduction in function. Then my right foot went quite quickly. Then another plateau for about 6 months...
  21. Thread: Rch4

    by Sportingmac
    Replies
    366
    Views
    89,587

    Hi Tim, I mentioned Objectivity versus...

    Hi Tim,

    I mentioned Objectivity versus Subjectivity. Sorry bud but ALFRS is 'subjective'.

    Kind regards

    Chas
  22. Thread: Rch4

    by Sportingmac
    Replies
    366
    Views
    89,587

    Hi John, There are a lot of stories from...

    Hi John,

    There are a lot of stories from ex-sportsman (my moniker) who succumb to MND. Went to a sportsmans dinner at my local rugby club and sat next to Doddie Weir - explained to him why I was...
  23. Thread: Rch4

    by Sportingmac
    Replies
    366
    Views
    89,587

    I have to say - I felt pretty good upto the the 2...

    I have to say - I felt pretty good upto the the 2 year mark after diagnosis - no real change in condition. Then a small step down at the 3 year mark - and a big turn down at the 4 year mark. Im...
  24. Replies
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    1,793

    Hi Barry, I have presented similar to both my...

    Hi Barry,

    I have presented similar to both my local CCG and to a large group of Hospice volunteers (only yesterday for the volunteers). I didn't use the red flag stuff - I made it personal - an...
  25. Replies
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    1,286

    Hi Doug, When I was chatting to my GP about...

    Hi Doug,

    When I was chatting to my GP about MND stuff I said to him "at least I know what I will from" to which he replied (after having hearty Irish laugh)...." don't be so sure - other forms of...
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