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  • ALS Awareness Month 2021 Member Spotlight: Len Jax

    Posted by Dagmar on May 31, 2021 at 1:00 am

    Hello Everyone! Here is our final member spotlight – – today Len Jax shares his ALS story with us. We thank Len and everyone who has submitted stories for our ALS awareness month project. Thank you too, to all who participated in our additional member events. We hope that 2021 will be the year that ALS is finally cured!

    “Understanding ALS” by Len Jax

    Death is a given for me as it is for each soul on this earth. It was a nuance in the far reaches of my mind until one day it touched my shoulder ever so gently. Catching a toe on the asphalt while walking, difficulty standing up straight and tell-tale slurred speech were the first hints I was on a journey with ALS. Unaware of my dark partner at the time, I retired from teaching to enjoy the “Good Life.” Linda, my wife, and I had a passion for exploring Italy and in 2013 put together a tour for six people exploring Tuscany and Umbria. We were the driver and tour guides – so much fun – and there were to be many more adventures!

    Fast forward to 2014 and we had moved from Minnesota to Missouri where life changed. Finally, in November I was diagnosed with PLS and later it was changed to ALS. It has been a journey, I compare it to getting shot every day, but there is no bullet hole, no blood but a tiny piece of me is missing when I awake each day. Currently, I am in a power wheelchair, can still do transfers, have lost most of my ability to speak, and have some trouble swallowing. Sadly, I have had to say goodbye to the joy of cooking for and having in-depth conversations with Linda this past year.

    The ALS local community has been very supportive of reaching out to us for any need we have. The ALS News Today forums have been a daily lifeline for information, emotional support, and answers to any aspect of ALS. The moderators’ and the members’ perspectives are so important in living with and understanding ALS. I wish more people knew how important caregivers are!

    #ALSAwarenessMonth #StrengthinCommunity

    Kathy stitz replied 3 years, 1 month ago 1 Member · 1 Reply
  • 1 Reply
  • Kathy stitz

    May 31, 2021 at 6:09 am

    Len, thank you for sharing your ALS story with us.  I agree with you that these forums are so important for support and information about ALS.  It helps so much to be able to share with others who understand what this journey is like.   Your trip to Italy sounds wonderful!  Best wishes to you.

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