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    • #17450
      Amanda
      Keymaster

      Not long ago when a person was diagnosed with ALS the life expectancy was 2-5 years with an average of 2.5 years. It seems to me, based on our community members and recent articles, that people with ALS are living longer and better lives.  Of course this is a difficult statement to make and not based on statistics.  There is no definitive path for pALS, which makes this diagnoses overwhelming. The good news is that the more we learn about ALS, the impact our mental health has on our lives, and new treatments, we can expect pALS to live longer. In my opinion, I think we should focus on the quality of life!  My family historically has not had this approach (we have a long history of ALS). In fact, I think many of the pALS in my family lacked the passion to live. After seeing many loved ones suffer with ALS it has to be scary to know what is likelyin store for you and your family.   I think my father’s biggest concern was “What if he gave me ALS.”  (of course it isn’t given, but parents feel differently) Although I understand their point of view, I embrace people like Dagmar, Steve Gleason, and many others who focus on how to LIVE with ALS.  I look towards these people for inspiration.  My favorite ALS organization is the Gleason Foundation. Have you checked them out?  https://teamgleason.org/   I love their mission and approach. It is not uncommon to see me sporting around in a #37 jersey or t-shirt.  My zoom background is a picture of the famous Gleason blocked punt, and I have many crossed out white flag magnets. What do you think?  How do you choose to deal with your/your loved ones ALS diagnoses? What is your favorite ALS organization and why?

      NO WHITE FLAGS

    • #17455
      Chuck Kroeger
      Participant

      <p style=”text-align: left;”>The Gleason Foundation has helped me  –  they are amazing.  But as I continue to grow weaker and am less able to do things for myself,  I am hesitant to keep asking for more from them.</p>

      • #17458
        Amanda
        Keymaster

        Chuck,

        Please don’t hesitate to ask for more support from The Gleason Foundation or any other organization support pALS.  They all understand as the disease progresses that needs increase. To help and support pALS is their mission!  Most of the people that work for non-profit organizations are extremely passionate about their cause and are willing and wanting to do as much as possible!

    • #17457
      Nancy deVillers
      Participant

      Compassionate Care. They lend you wheelchairs and other assistive devices. Their counselors are awesome!

    • #17543
      Kathy stitz
      Participant

      If there any ALS organizations that provide financial assistance I would like to know about them.

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