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  • Help from family and friends

    Posted by kathy-stitz on December 4, 2020 at 8:58 am

    What have family members and/or friends done to help you since you were diagnosed with ALS?  When I was first diagnosed earlier this year in June, I received cards in the mail but since then not much help or support.  I am pretty disappointed in my family but they do not care what my  feelings are.  I have read about family members setting up GoFundMe pages for people with ALS.  This is such an awful condition to have and it is important to have as much support as possible, in my opinion.

    kathy-stitz replied 3 years, 3 months ago 2 Members · 4 Replies
  • 4 Replies
  • Dagmar

    Member
    December 4, 2020 at 12:21 pm

    Kathy – – When I was diagnosed I barely knew what ALS was, so it wasn’t surprising that my family and friends didn’t know either. That meant it was up to me to tell them what-how-why and everything I could about my ALS. Likewise, I was at first taken aback that they didn’t know “how” to help me – – they defaulted to ways they responded to others who had surgery, colds, and the like. In the end, I had to let them know what would help me – – and that every ALS patient is different.

    The whole experience inspired me to write a column about it: https://alsnewstoday.com/columns/2017/09/12/als-patients-heres-how-to-help-your-friends-help-you/

  • kathy-stitz

    Member
    December 4, 2020 at 1:36 pm

    I don’t know how much my family and friends know about ALS or how severe and life-threatening the condition is.  Nobody has ever asked me what ALS is.  I don’t know if they don’t want to know what it is.  People have asked me what can they do to help but I have not known what to say.  I guess I just expected people to know what they should do.  That is true that we have to communicate to others what our wants and needs are.  We can’t just expect them to know or think that’s it’s their job to figure out what we need.  I think there are people who have good intentions but don’t know what to say or how they can help most effectively. We also play a role in other people helping us.  I think it is just a difficult situation for everyone involved, the person with ALS as well as those who are watching them suffer and don’t know what to do.

  • Dagmar

    Member
    December 5, 2020 at 10:37 am

    Yes, Kat – – we pALS need to be not only advocates for awareness of ALS… but also, advocates for our own care.

    I try to have patience with friends or acquaintances who assume ALS is just like Parkinson’s, MS, or having a stroke. I’ve even had someone come up to me and “speak loudly, and very slowly” thinking ALS affected my mind and hearing. …it takes patience, but we can teach others what ALS is, and teach them how to best help us.

  • kathy-stitz

    Member
    December 5, 2020 at 10:44 am

    Thanks Dagmar, for your great support and advice, as always.

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