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Thread: ALS for Dummies

  1. #1

    ALS for Dummies

    As a result of an article in todayís Guardian about its author

    -I found this:

    Iíve not read it yet.


  2. #2
    Forum Member Shaun's Avatar
    Join Date
    Jan 2020
    Hello Doug
    Thanks for posting the link, some interesting ideas and blunt personal points from him. Perhaps more suited for those of us at the beginning of this journey, as many of the senior members* of this forum have the T-shirt, so to speak.
    My personal take on it was, be positive, prepare and plan, make sure all involved know your plan, don't let this disease own you, you own the disease. I know that is easy for me to say right now, but I know I have some time on my side and I going to try and make the best use of it.

    Interesting that in France they have the same financial and information issues we have here.
    Perhaps we need a sexier name , MND , ALS isn't that catchy.

    (*Senior members - said with respect and admiration)


  3. #3
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    "You own the disease"

    I couldn't agree more, Shaun.

    Because keeping positive is SO important, taking ownership and control of our MND is empowering - and that includes being confident enough to say YES or NO at all stages, be it to equipment, medical intervention, medication or even visitors etc. etc..

    Knowing your body is important too, and this takes a bit of time, but if you can recognise subtle changes in your body you can be more proactive, i.e. more control.

    I know I need to be in charge of and (politely) run the show re my meds, care plan etc. because it's damn hard being reliant on others for all my physical needs !!

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

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