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  1. Thread: Rch4

    by Sportingmac
    Replies
    281
    Views
    76,695

    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...
  2. Thread: Rch4

    by Sportingmac
    Replies
    281
    Views
    76,695

    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...
  3. Replies
    2
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    834

    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...
  4. Replies
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    1,941

    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...
  5. Thread: Rch4

    by Sportingmac
    Replies
    281
    Views
    76,695

    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?
  6. Thread: Rch4

    by Sportingmac
    Replies
    281
    Views
    76,695

    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?
  7. Replies
    6
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    1,941

    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...
  8. Thread: Rch4

    by Sportingmac
    Replies
    281
    Views
    76,695

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

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

    by Sportingmac
    Replies
    281
    Views
    76,695

    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....
  10. 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...
  11. Thread: Rch4

    by Sportingmac
    Replies
    281
    Views
    76,695

    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...
  12. Thread: Rch4

    by Sportingmac
    Replies
    281
    Views
    76,695

    Hi Tim, I mentioned Objectivity versus...

    Hi Tim,

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

    Kind regards

    Chas
  13. Thread: Rch4

    by Sportingmac
    Replies
    281
    Views
    76,695

    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...
  14. Thread: Rch4

    by Sportingmac
    Replies
    281
    Views
    76,695

    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...
  15. Replies
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    1,719

    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...
  16. Replies
    5
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    1,266

    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...
  17. Replies
    8
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    1,908

    Hi Martin - good question - one I have had a lot...

    Hi Martin - good question - one I have had a lot of problems with. We went through the whole toileting thing using a ceiling hoist and sling - but as you have found out you need to go via the bed to...
  18. Replies
    8
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    1,908

    The suprapubic catheter does need maintenance....

    The suprapubic catheter does need maintenance. This because your bladder sheds material - just like your skin does - and that has the potential to block up the small holes that are at the end of the...
  19. Replies
    8
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    1,908

    I opted for the suprapubic catheter after a...

    I opted for the suprapubic catheter after a little but of research. It is is the best option if you are full-time in a wheelchair as I am.

    I had it fitted in June - and it works well. It is...
  20. Replies
    37
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    14,189

    Hi Jerry - the email address is...

    Hi Jerry - the email address is staff@modeltalker.org (note: .org and not .com)

    Kind regards

    Chas
  21. Replies
    5
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    2,177

    We can only hope - but for the last 22 years...

    We can only hope - but for the last 22 years there has been little proof of a cure. Why is that?

    Regards

    Chas
  22. Replies
    5
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    2,177

    https://www.mndassociation.org/research/mnd-resear...

    https://www.mndassociation.org/research/mnd-research-and-you/stem-cells/stem-cell-therapy/
  23. Hi Twinkle, I had a similar night time...

    Hi Twinkle,

    I had a similar night time problem.

    "...The walker helps so much at night as hubby has prostrate problems so he's up about 4 times during the night and he'd previously only used the...
  24. Replies
    16
    Views
    3,225

    Keep up with the 'pestering'. I am the expert on...

    Keep up with the 'pestering'. I am the expert on my MND and I say what works and what doesn't - taking no for an answer doesn't work for me. When it all gets 'TFD' (too F***ng difficult) for the so...
  25. Replies
    8
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    2,149

    My humorous episode with a blue badge was when I...

    My humorous episode with a blue badge was when I was asked to show my blue badge to get into a safari park - me sitting in a power wheelchair apparently doesn't count. Had to laugh.
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