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  1. Thread: Rch4

    by Sportingmac
    Replies
    375
    Views
    92,808

    Hi Originalthought, Thank you for point....

    Hi Originalthought,

    Thank you for point. However - it remains a subjective method.

    Also- the results depend largely on the type of motor neurone disease - ALS versus PLS versus Bulbar onset...
  2. Thread: Rch4

    by Sportingmac
    Replies
    375
    Views
    92,808

    Exactly my views too Ellie. I also checked with...

    Exactly my views too Ellie. I also checked with my neurologist in Sheffield - they still use the version I tagged.

    Kind regards

    Chas
  3. Thread: Rch4

    by Sportingmac
    Replies
    375
    Views
    92,808

    Thanks for that Terry. However I am - was - 6ft -...

    Thanks for that Terry. However I am - was - 6ft - and longish arms.

    I will make enquiries though about modifications.

    Kind regards

    Chas
  4. Thread: Rch4

    by Sportingmac
    Replies
    375
    Views
    92,808

    Hi all, Neater Robo-arms are out of stock -...

    Hi all,

    Neater Robo-arms are out of stock - sadly for me it will be a 4~5 week wait.

    In other news: I have always doubted the veracity of ALSFR-S scales since a final number is used to assess...
  5. Replies
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    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...
  6. Thread: Rch4

    by Sportingmac
    Replies
    375
    Views
    92,808

    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...
  7. Replies
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    1,592

    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...
  8. Thread: Rch4

    by Sportingmac
    Replies
    375
    Views
    92,808

    "...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...
  9. Thread: Rch4

    by Sportingmac
    Replies
    375
    Views
    92,808

    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
  10. Thread: Rch4

    by Sportingmac
    Replies
    375
    Views
    92,808

    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
  11. Thread: Rch4

    by Sportingmac
    Replies
    375
    Views
    92,808

    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
  12. Thread: Rch4

    by Sportingmac
    Replies
    375
    Views
    92,808

    Did you actually read the post from MND Admin?

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

    by Sportingmac
    Replies
    375
    Views
    92,808

    Fully support your stance Ellie. Reflecting my...

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

    by Sportingmac
    Replies
    375
    Views
    92,808

    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...
  15. Thread: Rch4

    by Sportingmac
    Replies
    375
    Views
    92,808

    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...
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    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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    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...
  18. Thread: Rch4

    by Sportingmac
    Replies
    375
    Views
    92,808

    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?
  19. Thread: Rch4

    by Sportingmac
    Replies
    375
    Views
    92,808

    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?
  20. Replies
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    2,457

    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...
  21. Thread: Rch4

    by Sportingmac
    Replies
    375
    Views
    92,808

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

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

    by Sportingmac
    Replies
    375
    Views
    92,808

    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....
  23. 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...
  24. Thread: Rch4

    by Sportingmac
    Replies
    375
    Views
    92,808

    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...
  25. Thread: Rch4

    by Sportingmac
    Replies
    375
    Views
    92,808

    Hi Tim, I mentioned Objectivity versus...

    Hi Tim,

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

    Kind regards

    Chas
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