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  1. Thread: Terry

    by Graham
    Replies
    101
    Views
    10,227

    By the 'eck Kitty, if one of my carers dared...

    By the 'eck Kitty, if one of my carers dared question my taste in music, they would have got a PINCH.

    Embrace the pain like dis Terry...

    https://www.youtube.com/watch?v=QjcGfGuDoqs

    Not a...
  2. Thread: Terry

    by Graham
    Replies
    101
    Views
    10,227

    It does knock the stuffin' out of us but a bit of...

    It does knock the stuffin' out of us but a bit of tlc will sort it. Chess and beer 4 now.

    Love Graham
  3. Replies
    5
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    593

    There is much abuse in the NHS. People are...

    There is much abuse in the NHS.

    People are good at turning a blind eye to what really is going on. I am afraid to say this includes MNDA.

    Both your MP and BBC will have emergency lines.
    ...
  4. Replies
    12
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    1,244

    Hi Juliette, Sounds like euthanasia which is...

    Hi Juliette,

    Sounds like euthanasia which is unlawful. I would contact the press or BBC urgently.

    Love Graham
  5. Thread: Terry

    by Graham
    Replies
    101
    Views
    10,227

    Hi Terry, Pull yourself together man. That's...

    Hi Terry,

    Pull yourself together man. That's an order. Its only MND.

    A tad of whisky in the hospital brew helps ease it down.

    We're all behind you lad.

    Love Graham
  6. Replies
    42
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    28,931

    Merry Christmas Doug, Andy, I have the DCTN1...

    Merry Christmas Doug, Andy,

    I have the DCTN1 gene mutation. It runs in my father's side and the majority have developed some form of condition as given in panelapp. I have drawn the MND straw. I...
  7. Replies
    42
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    28,931

    A motor neuron disease–associated mutation in...

    A motor neuron disease–associated mutation in p150Glued perturbs dynactin function and induces protein aggregation

    Abstract
    The microtubule motor cytoplasmic dynein and its activator dynactin...
  8. Replies
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    539

    Exactly, Billy. We will see how much support I...

    Exactly, Billy.

    We will see how much support I get on my DIY treatment plan.

    FYI, I had to get NHS to organise my gene test myself. Incredibly, it is not routine.
  9. Replies
    42
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    28,931

    Official Symbol - DCTN1provided by HGNC...

    Official Symbol - DCTN1provided by HGNC
    Official Full Name - dynactin subunit 1provided by HGNC
    Primary source - HGNC:HGNC:2711
    See related - Ensembl:ENSG00000204843 MIM:601143
    Gene...
  10. Replies
    42
    Views
    28,931

    The DCTN1 gene provides instructions for making a...

    The DCTN1 gene provides instructions for making a protein called dynactin-1. At least two different versions of this protein are produced in cells. The two versions differ in size; the larger version...
  11. Replies
    42
    Views
    28,931

    Panelapp provides a clinical and scientific...

    Panelapp provides a clinical and scientific library of genes for rare diseases including various forms of MND.

    https://www.genomicsengland.co.uk/about-genomics-england/panelapp/

    So now, I must...
  12. Replies
    42
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    28,931

    I now have my 'very likely' gene defect that has...

    I now have my 'very likely' gene defect that has caused my MND. Now I am able to progress fixing it.
  13. Thread: TC and Kitty

    by Graham
    Replies
    8
    Views
    1,679

    hi barry, tc, kitty, ...

    hi barry, tc, kitty,

    https://www.youtube.com/watch?v=IkzHlvb7yLE

    The flat is evil
    Welcome, living leg-end
    I was walking down the street
    I saw the poster at the top
    I was all on one leg
    The...
  14. Thread: TC and Kitty

    by Graham
    Replies
    8
    Views
    1,679

    I know my tunes infuriate the guys, that is why I...

    I know my tunes infuriate the guys, that is why I post them, but I can see you have CLASS.

    it is like Russian roulette, I have the brain rot variety of als, bedridden, can't talk, loads of...
  15. Thread: TC and Kitty

    by Graham
    Replies
    8
    Views
    1,679

    TC and Kitty

    Hi Katz,

    just a quick hello. still under huge pressure from nhs and dwp. my mnd has almost stopped so I must plan for the long term. this involves working every moment poss. hope u both ok. luv G
  16. Thread: Music Thread 2

    by Graham
    Replies
    30
    Views
    11,108

    Cramps

    Psychotic reaction LIVE

    https://www.youtube.com/watch?v=ZhDnmmfJGyk

    Muleskinner blues

    https://www.youtube.com/watch?v=3JRWUkHkZ00
  17. Replies
    11
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    4,148

    Hi Prachi, Thank you very much for the reply....

    Hi Prachi,

    Thank you very much for the reply. This is all very encouraging.

    I will indeed contact my GP to get in contact with a genetic counsellor again to see where we are up to at present. I...
  18. Replies
    11
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    4,148

    HI Ruth and Rachel, Thank you for the prompt...

    HI Ruth and Rachel,

    Thank you for the prompt reply.

    That is excellent news for the people with the C9orf72 gene fault in the Oxford catchment area that are fortunate enough to be able to enrol...
  19. Thread: Music Thread 2

    by Graham
    Replies
    30
    Views
    11,108

    Black Box - Ride on time ...

    Black Box - Ride on time

    https://www.youtube.com/watch?v=M0quXl_od3g

    Sting 92 Ninjaman - Party time

    https://www.youtube.com/watch?v=mi4ll8WZ9pY

    Sting 95 Ninjaman v Mad Cobra
  20. Replies
    11
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    4,148

    Gene silencing Work in the UK

    Dear MNDA,

    Given the recent success in treating Huntington's Disease and the breakthrough in delivering medication through the brain-blood barrier, is the MNDA aware of any work targeting the many...
  21. Thread: Dangerous Talk

    by Graham
    Replies
    2
    Views
    1,353

    Hi Barry, The BBC now naturally go to the MNDA...

    Hi Barry,

    The BBC now naturally go to the MNDA when visiting the 'right to die' and 'assisted suicide' topic and it really is doing us no favours. It devalues our worth.

    What was equally...
  22. Thread: Dangerous Talk

    by Graham
    Replies
    2
    Views
    1,353

    Dangerous Talk

    Hi,

    I watched the BBC 'Trust Me' following the horrendous experience I had in Salford RFT for 2 years.

    My heart sunk when the nurse actor talked of a guy wanting to die who had MND. It was...
  23. Thread: Help please

    by Graham
    Replies
    7
    Views
    2,766

    Hi Terry, Andy, It was Taurusmale66, I think...

    Hi Terry, Andy,

    It was Taurusmale66, I think that booted me out. I pointed out that the top 3 players in the team rankings never played in the team matches and should be removed from the rankings...
  24. Thread: Help please

    by Graham
    Replies
    7
    Views
    2,766

    Hi Terry, Been a long hard day with minimal...

    Hi Terry,

    Been a long hard day with minimal food and drink. I have to work exceptionally hard to keep my head above water.

    A 'little hitler' threw me out of the team for criticising the 'top...
  25. Thread: Help please

    by Graham
    Replies
    7
    Views
    2,766

    Resolved.

    Resolved.
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