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  • ALS Awareness Month 2021 Member Spotlight: Bill DeMay

    Posted by Dagmar on May 10, 2021 at 1:00 am

    Hello Everyone! Here’s another member spotlight – – today’s is from Bill DeMay. We thank Bill and everyone who has submitted stories for our ALS awareness month project. These will be featured every Monday in May. Look for future announcements of our other member events that will also be happening this month.

    “Demystifying ALS” by Bill DeMay

    My ALS likely started seven or so years ago. The diagnosis of limb onset slow progression ALS was made in January 2018. I was 68 at diagnosis. I could survive for “decades” per neurologist.

    The diagnosis was crushing for my wife. My wife is slowly coming to grips with it even after three years. Her hope is that I outlive her. As of April 2021, my ALSFRS is still about 40. My legs and right arm are still pretty normal. The left arm is now substantially atrophied and weak. Within the past nine months or so I’ve started with bulbar symptoms but still eat and swallow mostly normally but slower. My speech is affected, but slowly.

    My demystifying ALS came by joining other pALS online and living their journeys through reading their often daily updates and hearing of their progression, their aids and treatments, and struggles. I read about what they try and the trials they are in. I also experienced many of their deaths. Their bravery and care for others were evident. I need little help today but through them, I understand the path. I go to the local ALS clinic and fully engage in discussion with the experts I will need on my journey. I still read all I can and subscribe to newsletters and google search alerts.

    I am a supporter of ALS research and participated in two drug trials, a genome study, a biomarker study, and have done a number of survey studies. Early on my discussions with researchers at two universities greatly helped my understanding.

    I believe in living my life every day like I don’t have ALS. I don’t look back at missing things I cannot do but concentrate on what I can do in helping my family.

    #ALSAwarenessMonth #StrengthInCommunity

    Dagmar replied 3 years, 2 months ago 2 Members · 2 Replies
  • 2 Replies
  • Kathy stitz

    May 10, 2021 at 6:35 am

    Thank you Bill for sharing your ALS story.  I like what you said about living your life every day like you don’t have ALS.  Thank you for participating in ALS research.  It’s important for all of us to help and support each other on this journey.   Take care and best wishes.

  • Dagmar

    May 10, 2021 at 4:12 pm

    Bill, thank you for participating in our Members Spotlight and sharing your ALS story with us. I enjoyed reading your philosophy of not looking back at missing things you cannot do but concentrating on what you can do to help your family. Bravo! 🙂

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