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  1. Replies
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    Hi Dina I am really sorry that my suggestions...

    Hi Dina

    I am really sorry that my suggestions yesterday weren't helpful. If it would help, I'm happy to ring your social worker to explain the situation to them and see if we can come up with a...
  2. Thread: Pain/Agony

    by MNDConnect
    Replies
    48
    Views
    2,785

    Hi Lynne Not everyone with MND has a PEG. ...

    Hi Lynne

    Not everyone with MND has a PEG. Some people choose not to have one and for some people they don't experience any swallowing problems and so don't have one.

    People often have a PEG...
  3. Thread: Pain/Agony

    by MNDConnect
    Replies
    48
    Views
    2,785

    Hi all....me again! Regarding PEGs, they can...

    Hi all....me again!

    Regarding PEGs, they can help to prevent aspiration as they enable people to receive nutrition without the danger of trying to swallow and so aspirate. Swallowing is a very...
  4. Thread: Pain/Agony

    by MNDConnect
    Replies
    48
    Views
    2,785

    Hi all Pain and whether it is a symptom of MND...

    Hi all

    Pain and whether it is a symptom of MND or not is something that gets discussed a lot both at the MND Association and in the wider world.

    The dying of the motor neurones themselves isn't...
  5. Replies
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    5,078

    Please do feel free to suggest that he give us a...

    Please do feel free to suggest that he give us a call. This must be very difficult on all of you, particularly with your partner's dad being ill.
    We are available on freephone 0808 802 6262...
  6. Replies
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    5,078

    Hi Fiona I'm sorry to hear that your partner's...

    Hi Fiona

    I'm sorry to hear that your partner's concerns have increased again. He could ask for a referral to an MND Care Centre where the team specialise in MND. This may help to alleviate his...
  7. Thread: Worried

    by MNDConnect
    Replies
    6
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    429

    Hi Ron Symptoms of MND don't come and go. Due...

    Hi Ron

    Symptoms of MND don't come and go. Due to the progressive nature of the disease, once a symptom appears it just continues to get worse.

    When someone has MND and it is affecting their...
  8. Thread: Pain/Agony

    by MNDConnect
    Replies
    48
    Views
    2,785

    Hi Chrissie They may not have a hoist in AMU...

    Hi Chrissie

    They may not have a hoist in AMU but they should be able to get one from the hospital stores or from another ward temporarily whilst your Gran is an inpatient. Ellie's suggestion of...
  9. Thread: Worried

    by MNDConnect
    Replies
    6
    Views
    429

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

    Hi Ron

    I'm sorry to hear that you are concerned about possible MND. The symptoms that you describe wouldn't be typical symptoms of MND. Sensations are usually caused by the sensory nerves and...
  10. Thread: Pain/Agony

    by MNDConnect
    Replies
    48
    Views
    2,785

    Hi Chrissie I'm glad they they have found out...

    Hi Chrissie

    I'm glad they they have found out what was causing your Gran so much pain. Hopefully now they'll be able to make her feel a bit better.

    The hospital should be able to access a...
  11. Thread: Pain/Agony

    by MNDConnect
    Replies
    48
    Views
    2,785

    The MND Association produces a booklet called...

    The MND Association produces a booklet called Understanding my needs. This can be quite useful if someone is in hospital as you can complete lots of information about the person, including things...
  12. Thread: Pain/Agony

    by MNDConnect
    Replies
    48
    Views
    2,785

    Hi Broostine93 I'm sorry to hear that your...

    Hi Broostine93

    I'm sorry to hear that your Gran is unwell. MND itself doesn't generally cause pain but the immobility that it causes can cause pain or can cause very painful cramps.

    People...
  13. Replies
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    1,136

    Hi Hayls Congratulations on your wedding. I...

    Hi Hayls

    Congratulations on your wedding. I think Dina has a good suggestion about letting everyone know about the emotional lability. This then may help to take away some of your worries. ...
  14. Replies
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    1,120

    Hi panniertank People with MND can experience...

    Hi panniertank

    People with MND can experience muscle spasms and pain. This is usually due to poor mobility, a change in posture and can be a reaction changes in muscle tone. Your GP should be...
  15. Dear Shuvamoy, I have forwarded your question...

    Dear Shuvamoy,

    I have forwarded your question onto our research team as they have the most appropriate information to answer your query.

    They will respond to your email address directly.
    ...
  16. Replies
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    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...
  17. Replies
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    2,487

    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...
  18. Replies
    11
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    2,487

    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:...
  19. Replies
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    2,487

    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...
  20. Replies
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    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...
  21. Thread: Head brace

    by MNDConnect
    Replies
    2
    Views
    1,061

    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...
  22. Thread: Mnd -icu-

    by MNDConnect
    Replies
    6
    Views
    1,715

    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...
  23. Thread: Mnd -icu-

    by MNDConnect
    Replies
    6
    Views
    1,715

    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...
  24. Thread: Mnd -icu-

    by MNDConnect
    Replies
    6
    Views
    1,715

    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....
  25. Replies
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    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...
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