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Thread: Newly diagnosed

  1. #11
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Lizzie, your local branch will have an email contact.

    Search for local support:

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

  2. #12
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Good morning Lizzie. Iím glad that you found this forum and that itís already helping you. That was a great decision to do voice banking so soon.

    Weíve been self isolating for 14 days now. We do internet food shopping that takes determination because delivery slots are seldom available. My husbands son delivered us some food keeping his distance from us. He lives 50 minutes drive away from us so we donít want to call on him unless absolutely necessary. Our window cleaner and my OT have offered to shop for us,

    Iím having some helpful tech installed for me on Wednesday, next week. Iíll be able to operate some lights, our tv, the radio, my iPad and my phone by an infrared headset. My OT and I think eye gaze would be better but Iím greatful for any help. We need a different door before I can have control of it.

    Iím very stressed about the current pandemic, not only for myself, but my children, grandchildren, my great granddaughter, my brothers and my sister.

    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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