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  1. Replies
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    1,498

    Hi panniertank Iím sorry for the delay in us...

    Hi panniertank

    Iím sorry for the delay in us responding to you. It looks as though youíve been receiving some excellent advice from the other forum users.

    Speaking to your health and social...
  2. Replies
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    1,632

    Hi Graham, Apologies for the delay in...

    Hi Graham,

    Apologies for the delay in responding to your query.

    It is indeed great news to have another clinical trial tackling a specific gene variation in MND and we are looking forward to...
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    1,632

    Hi all The plans to include UK centres in the...

    Hi all

    The plans to include UK centres in the C9ORF72 study are currently being put together and once we know more, we will publish this opportunity on our website:...
  4. Replies
    11
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    1,632

    Dear Graham, The recently talked-about drug...

    Dear Graham,

    The recently talked-about drug that showed promising results in people with Huntington’s Disease is indeed very encouraging and we hope that future trials will show that it has the...
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    574

    Dear Jude, I am very sorry to hear of your...

    Dear Jude,

    I am very sorry to hear of your mother’s difficult experience with the hospice that she attends currently.

    Most hospices require referrals from a GP, or a member of your mother’s...
  6. Thread: Head brace

    by MNDConnect
    Replies
    2
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    614

    Dear Ali, I would just reiterate Ellie's...

    Dear Ali,

    I would just reiterate Ellie's suggestions, the Oxford Lees head support is quite a rigid support which secures around the forehead.

    We would always encourage you to speak to your...
  7. Thread: Mnd -icu-

    by MNDConnect
    Replies
    6
    Views
    1,196

    Dear Abdulaziz, At the present time Riluzole...

    Dear Abdulaziz,

    At the present time Riluzole or Rilutek is the only medication licensed to treat MND which has been shown in studies to slow down the progression rate of the disease.
    This drug...
  8. Thread: Mnd -icu-

    by MNDConnect
    Replies
    6
    Views
    1,196

    Dear Abdulaziz, Your father's doctors should be...

    Dear Abdulaziz,
    Your father's doctors should be able to answer whether the medications he is taking could make his muscles feel weaker, affecting his ability to walk.
    A prolonged stay in hospital...
  9. Thread: Mnd -icu-

    by MNDConnect
    Replies
    6
    Views
    1,196

    Hello Abdulaziz, I was so sorry to hear that...

    Hello Abdulaziz,
    I was so sorry to hear that your father has been hospitalised due to him having developed pneumonia and now as a result of this he has had a tracheostomy to support his breathing....
  10. Replies
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    1,544

    Hi Jonboy I'm sorry to hear that you've had so...

    Hi Jonboy

    I'm sorry to hear that you've had so many problems with your OT. If you continue to have problems then please do contact us. We'd be happy to speak to the OT for you to try to help to...
  11. Thread: Help please

    by MNDConnect
    Replies
    7
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    1,481

    Hi Graham I'm sorry to hear that you are...

    Hi Graham

    I'm sorry to hear that you are having problems with carers and the DWP. Please do contact us directly if there is anything that we can do. We are available at...
  12. Replies
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    1,544

    Hi Terry Thanks for your post. I'll flag this...

    Hi Terry

    Thanks for your post. I'll flag this with the forum admins and get them to come back to you on this Terry.

    Best Wishes

    Rachel
    MND Connect Adviser
  13. Replies
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    2,734

    Just a quick extra note... Feeding tubes are...

    Just a quick extra note...

    Feeding tubes are usually fitted using light sedation and so do not require a general anaesthetic. The person is given sedation so that they are comfortable but...
  14. Replies
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    2,734

    Hi Worried son Iím sorry for the delay in a...

    Hi Worried son

    Iím sorry for the delay in a response from us. It looks as though youíve received some excellent advice from the others.

    If your dad would like a feeding tube, then I think itís...
  15. Thread: Sensitivity

    by MNDConnect
    Replies
    3
    Views
    1,386

    Hello Barry52, Thank you very much for taking...

    Hello Barry52,

    Thank you very much for taking the time to post and apologies for the delay in responding to your post. We are very sorry that our mailings have caused you upset - as you can...
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    1,445

    Hello Baily2jordan, Thank you for your question...

    Hello Baily2jordan,
    Thank you for your question about accessing complex care. Firstly, if you do not currently have care, I would suggest that you seek support from your local Adult Social Care team...
  17. Thread: Oedema

    by MNDConnect
    Replies
    15
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    3,299

    Hello Nigel, I was so sorry to hear that you...

    Hello Nigel,
    I was so sorry to hear that you have developed a build-up of fluid in your feet. This must be extremely uncomfortable for you. I was also terribly sorry to hear that both your GP and...
  18. Hello Claire, I am so very sorry to hear about...

    Hello Claire,
    I am so very sorry to hear about your husbandís diagnosis of MND and the subsequent struggles that you and your family are facing as a result of his deteriorating health. Please know...
  19. Replies
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    1,445

    Hello Tania, I was so sorry to hear that your...

    Hello Tania,
    I was so sorry to hear that your mother was diagnosed with bulbar MND before Christmas last year.
    Firstly, I wondered what assistance you have been offered in Chester with regards to...
  20. Replies
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    1,538

    Hi Barry52, Apologies for the delay in...

    Hi Barry52,

    Apologies for the delay in responding to your post.

    The Red flag diagnosis tool for GPs is available as a hard copy, we can certainly arrange for a few copies to be sent to you....
  21. Thread: Warfarin

    by MNDConnect
    Replies
    16
    Views
    3,501

    Dear Jerry, Warfarin is a medication to help...

    Dear Jerry,

    Warfarin is a medication to help treat and prevent blood clots it is not a medication intended to treat cramps.

    Please do speak to a doctor before taking any prescription...
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    4,379

    Dear Fiona, I can understand why you are not...

    Dear Fiona,

    I can understand why you are not completely reassured by the diagnosis from the hand specialist, you feel that there are still unexplained questions and the problems with his ankle are...
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    2,882

    Dear Kayleigh, Thank you for your reply. ...

    Dear Kayleigh,

    Thank you for your reply.

    The Understanding my Needs Booklet can be downloaded from our website: www.mndassociation.org

    Please see the link below to the booklet:
    ...
  24. Replies
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    2,882

    Dear Ali, As well as a communication board...

    Dear Ali,

    As well as a communication board your Mum may benefit from taking an Understanding my Needs booklet into hospital with her.

    This booklet allows you to describe aspects of your mum's...
  25. Replies
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    4,681

    Hi Kayleigh, You're very welcome. If you have...

    Hi Kayleigh,

    You're very welcome. If you have any further queries, then please do not hesitate to contact us again.

    Best wishes,
    Prachi
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