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Thread: A bad day

  1. #11
    Forum Member
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    May 2018
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    339
    Hi Polly,

    Firstly please dont say sorry for posting on here. It's the right place for advice and support, from people who really understand. The early days , when you are both reeling from the shock of diagnosis are overwhelming and it's hard to know what is best.

    There has been lots of sound advice on here about who to contact for advice on here so I wont add to that although it sounds like you have good support. I really appreciate why your husband wants to keep active and I totally understand your concern about falls. Like many of us I resisted a wheelchair but once I had one I realised it gave me much more freedom to be out and about. Again I didn't want a power wheelchair in the house but now I can whizz round to check hubby has cleaned the kitchen and the state of my son's bedroom ( not great !!! )

    Safety is obviously the most important thing but I think most of us have a few falls before we realise this. It's only human to want to keep going as we always have and I was given a hard talk about falls by the neurologist as the last thing we need is broken bones.

    Take Care of yourself too,
    Love Debbie x ( Deb )

  2. #12
    Forum Member
    Join Date
    May 2019
    Posts
    20
    Success! A call today from the community physio. She will visit next week along with an occupational therapist. It’s such a relief to know that local support is now forthcoming.

  3. #13
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    266
    Hi Polly,

    That's great news! I'm pleased for you. I don't know if it's always so but my community OT told me she is my problem solver - and she certainly has been. I hope yours will be as useful.
    Dina


    Trying to keep positive, but not always managing.

  4. #14
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,594
    Hi Polly,

    It's nice to get some support, it can take a long time after diagnosis sometime.

    Just hope that they are very useful people.

    Love Terry

  5. #15
    Forum Member
    Join Date
    Mar 2019
    Location
    Kerala, India
    Posts
    6
    Hi Polly, it is Rajesh from India, An MND patient.

  6. #16
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    3,070
    Great news Polly. Hope they assess your husband's needs thoroughly - I know you'll mention the falls but, over the next few days, try and see little tasks he is also struggling with and mention those too (utensils, dressing, washing etc.)

    A good OT in particular is worth their weight in gold and can help keep hubby independent for as long as possible by provided braces, mobility equipment and useful gadgets.

    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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