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  1. Replies
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    Hi Gillette, We have been told that too. The...

    Hi Gillette,

    We have been told that too. The pressure relieving mattress I have is a solid foam affair - and I really can't sleep on it without getting a painful hip. Hence the topper - works...
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    Thanks Ellie. I am blessed with 2 nurses in the...

    Thanks Ellie. I am blessed with 2 nurses in the family - Mags my wife of 46 years and our daughter Andrea - also a nurse.

    We have a plan for NIV - being monitored for now on a regular basis and...
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    Hi Gillette and Ellie, I have a profiling bed...

    Hi Gillette and Ellie,

    I have a profiling bed with a 'pressure relieving mattress' - doesn't do much for the pain though. We have put a mattress topper on top and that works quite well.
    ...
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    Can only sleep on my right side

    Does anyone one else have problems breathing whilst sleeping on their back or left side. I have tried both to alleviate the possibility of pressure sores on my right side - but very quickly develop...
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    Seems that getting a truthful explanation for...

    Seems that getting a truthful explanation for refusal from NHS services is a common compliant. The OT would have to apply to a 'nameless' NHS Panel that seems not to publish minutes of meetings - ask...
  6. Thread: Rch4

    by Sportingmac
    Replies
    400
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    103,469

    Thanks Terry, Supports my research results...

    Thanks Terry,

    Supports my research results too. Hopefully this document (thanks Ellie) will give pause for thought.

    Kind regards

    Chas
  7. Thread: Rch4

    by Sportingmac
    Replies
    400
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    103,469

    Ongoing saga with NHS. NHS say NO. MNDA need...

    Ongoing saga with NHS. NHS say NO. MNDA need reason for no before offering assistance. Have written to CCG asking for their help. Also have investigation by Neurologist in Rehab Team into reasons...
  8. Thread: Rch4

    by Sportingmac
    Replies
    400
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    103,469

    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...
  9. Thread: Rch4

    by Sportingmac
    Replies
    400
    Views
    103,469

    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
  10. Thread: Rch4

    by Sportingmac
    Replies
    400
    Views
    103,469

    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
  11. Thread: Rch4

    by Sportingmac
    Replies
    400
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    103,469

    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...
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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...
  13. Thread: Rch4

    by Sportingmac
    Replies
    400
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    103,469

    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...
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    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...
  15. Thread: Rch4

    by Sportingmac
    Replies
    400
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    103,469

    "...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...
  16. Thread: Rch4

    by Sportingmac
    Replies
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    103,469

    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
  17. Thread: Rch4

    by Sportingmac
    Replies
    400
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    103,469

    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
  18. Thread: Rch4

    by Sportingmac
    Replies
    400
    Views
    103,469

    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
  19. Thread: Rch4

    by Sportingmac
    Replies
    400
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    103,469

    Did you actually read the post from MND Admin?

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

    by Sportingmac
    Replies
    400
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    103,469

    Fully support your stance Ellie. Reflecting my...

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

    by Sportingmac
    Replies
    400
    Views
    103,469

    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...
  22. Thread: Rch4

    by Sportingmac
    Replies
    400
    Views
    103,469

    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...
  25. Thread: Rch4

    by Sportingmac
    Replies
    400
    Views
    103,469

    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?
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