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  • ALS and natural disasters

    Posted by Amanda on September 3, 2019 at 8:07 am

    Do we need to advocate to ensure that the needs of pALS and others with rare diseases are considered during an emergency or evacuation?

    What needs are specific to pALS?

    Are you and your family ready if a natural disaster strikes?

    What is included in your emergency plan that is unique or different?

    Dagmar replied 4 years, 9 months ago 2 Members · 2 Replies
  • 2 Replies
  • Dagmar

    Member
    September 11, 2019 at 4:41 pm

    A resounding YES, to your questions 🙂

    Due to pALS having such varied symptoms, plans need to be patient-specific. But a plan does need to be in place!

    Does the local fire department or EMT know that a pALS lives in your home? And are you on their contact list?

    For me – – transportation and a supply of medication is vital. Also, a supply of Thick-it (which I need to use to thicken liquids before I drink them).

    What do others have on their “vital” list? What plans do you have in place?

     

  • Dagmar

    Member
    September 11, 2019 at 4:47 pm

    Recently, we had a power outage due to a storm. The electricity went off at 4:30 PM and stayed off well into the evening. Our house became pitch dark. I confined myself to a living room chair through the event, but needed my husband’s assistance holding a flashlight for me when traversing to the toilet. This made us rethink our flashlight/candle situation. We now have several battery operated push-lights set up through the house – – along with plenty of batteries!

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