Page 2 of 10 FirstFirst 1234 ... LastLast
Results 11 to 20 of 94

Thread: Advice on motor neurone disease please

  1. #11
    Forum Member
    Join Date
    Feb 2019
    Posts
    26
    Thank you Kayleigh you've been so helpful. I wish I could return the favour somehow

  2. #12
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Location
    England
    Posts
    712
    You have already. Many thanks you for your kind words xx
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  3. #13
    Forum Member
    Join Date
    May 2018
    Posts
    280
    Hi KLH, welcome to the forum, although I am very sorry for your Father's diagnosis.

    The early days are such a shock and you must feel very overwhelmed, especially as you are an only child. It sounds like your Dad is lucky to have you .

    There is really good emotional and practical support on here from people who really understand. I have been told repeatedly that progression with MND is impossible to predict and that everyone is different so if possible, try to take one day at a time. Its easier said than done, I know.

    I hope you have love and support around you and remember to take care of yourself too.

    Love Debbie x

  4. #14
    Forum Member
    Join Date
    Feb 2019
    Posts
    26
    Thanks Debbie.
    We saw the consultant Thursday and he said it's bulbar mnd. He gave my dad some hope that he's got 2 years. He also starting him on rizulole (?). Yesterday though he had a nose feeder fitted as his swallow is poor.
    I felt better after the consultant meeting but then back to worrying he's deteriorating fast and won't last long.
    I'm worn out with it all. I expect this isn't unusual for people with mnd and their loved ones. Impossible to know what will happen next

  5. #15
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,477
    Hi KLH;

    It's good that he is now getting the nutrition that he needs as that should slow any weight loose and help with his well being.

    Is he taking liquid riluzole?

    Tiredness is common with Mnd and also it's very emotional for everyone, with a lot of new information and running around to different places and appointments.

    Love Terry

  6. #16
    Forum Member
    Join Date
    Feb 2019
    Posts
    26
    Thanks Terry.
    I'm back at the hospital this morning as they called us to say he had deteriorated. Waiting for the ward round as he improved a little in the last hour. He's really agitated and hooked up to alsorts. It's grim.
    A reminder never to put things off

  7. #17
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,917
    Hi KLH,

    So sorry to hear your dad is poorly and agitated.

    If he is on oxygen, that could be exacerbating his agitation - O2 shouldn't be used with ALS.

    If he is not on O2, morphine or lorazepam will help with his agitation. How is his breathing?

    Big hug to you.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #18
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,477
    Hi KLH,

    I am sorry to hear that things have got worse.

    Try to take care of yourself a little a have brakes when you can. If you can rest a bit as well.

    Thinking of you both.

    Hugs Terry

  9. #19
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Location
    England
    Posts
    712
    Hi KLH,

    Sorry to hear that your dad is so poorly.

    Hopefully, he will be given some medication to make him feel more relaxed and comfortable.

    It's good that you are able to be with your dad as, undoubtedly, he finds it very comforting that you are with him.

    Please try to look after yourself by eating and resting regularly.

    Thinking of you.
    Love,
    Kayleigh x
    Last edited by Kayleigh; 17th February 2019 at 14:37.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  10. #20
    Forum Member
    Join Date
    May 2018
    Posts
    280
    So sorry, KLM that things have deteriorated.

    I really hope that they are able to keep your Dad calm, comfortable and that you feel he is being well looked after.

    Take Care of yourself too.
    Thinking of you
    Love Debbie x

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •