My mum is poorly with MND

aashworth81
aashworth81 Online Community Member Posts: 11 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions

Hi everyone, my name is Alex Ashworth and I am new to this group. I found out about SCOPE through a link from my mum who had a recent diagnosis of MND. It initially shook the family especially my Dad but now we are all learning to live and accept my mum's disease. She is such a lovely person and still has that magic touch that enables her to light up a room whenever she enters. I'm wondering if anyone else has had either a family member or friend diagnosed with this life - limiting condition and if anyone has any advice on how best we can care for mum?

Alex.

Comments

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    Hi @aashworth81, and a warm welcome to the community!

    I'm so sorry to hear about your mum's diagnosis. I hope you're all coping as well as possible, and find the community to be a supportive place where you're more than welcome to come and share how you're doing. I'm tagging in @Becky9692 and @MalcolmF who've discussed MND on here before, in the hope that they'll be able to offer some guidance, and hopefully our other members may be able to contribute some suggestions too. 
  • aashworth81
    aashworth81 Online Community Member Posts: 11 Listener

    Great stuff! Thanks Pippa. I'd really appreciate some expert advice. She was initially diagnosed with Progressive Bulbar Palsy but it has recently progressed to MND. She spent three weeks in hospital in May to enable a positive support system to be in place when she left. She now has carers and nurses who regularly look after and care for her.


  • SunshineLou
    SunshineLou Online Community Member Posts: 79 Empowering
    @aashworth81 my only advice would be to try and make her life the best it can be for as long as she’s with you all. Which I’m sure you will do.
    Its a devastating diagnosis and I’m so sorry to hear she has it.
    I was actually paralysed four years ago but thankfully regained movement after about 4 months as an inpatient.
    I know what she’ll be feeling when her condition progresses. 
    Try to keep her mind and body as busy and happy as you can so she’s not dwelling on things. 
    Negative thoughts will make things worse for her.
    I was reliant on my visitors and always a mess if they ever made plans with me then couldn’t stick to them. 
    It’s the small things that end up meaning the most!
    Support groups can also be a Godsend! They have been for me as you then realise you’re not alone in how you feel and what you’re going through.

    Good luck to you and your family and again, so sorry to hear this news :( 

  • atlas46
    atlas46 Online Community Member Posts: 817 Pioneering
    Hi

    A warm welcome.

    Sorry about the terrible news your mum has been given.

    Can I suggest you contact MND association on tel 01604 250 505.

    I understand they have very good support groups around the country.

    Keep us updated.

    Best wishes
  • aashworth81
    aashworth81 Online Community Member Posts: 11 Listener
    Thanks for this. I appreciate the input. She has a good support system from friends and family and has regular carers and nurses looking after her. It's quite a contrast from the old mum who used to be so outgoing and sociable. We've just got to focus on how we can make the best of the time we have with her. xx
  • SunshineLou
    SunshineLou Online Community Member Posts: 79 Empowering
    @aashworth81 exactly x

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