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Team Light Brigade, Braving ALS

This is to update family and friends near and far on Chris’s journey with ALS, also known as Lou Gehrig’s disease.

Latest journal entry

Posted 2019-11-12T16:56:13Z

Tuesday Blues Day

Morning folks,

We all know that feeling when family comes into town to visit and leaves. Often you say thank goodness they’ve gone, but these days we pray for when will they return. Kerry and Laura Johnston spent 4 days here in NOLA. Giving Chris purpose to rise and shine. Having Kerry punch the clock to work on his bike. Kerry did not disappoint. Another step closer to see this masterpiece to completion. As he introduced Kerry to his companion/sitter, this is my biggest brother. The love and history between Chris, Mark and all the Johnston boys is remarkable. It’s a pure love, full of memories. At times it can make me jealous of the history they share. 💙

Also, Lisa Clutter Bearden came to see her brother. I think they had a nice visit, she brought her tiny puppy to meet our pack and love on Chris. The days of visiting for long hours are noticeably changing. His ability to speak is a struggle and lowers his energy level.

Brother Chris Eichhorn and his lovely wife Jill passed by Sunday to visit Chris also. I’ve encouraged any and all to bring the fun, the stories and be prepared for the Colonel to go through his comedy monologue  lol. 

Well our daytime gets shorter and our nighttime’s are restless. Our warrior is hanging in there still trying to engineer ways to make things easier. But, for Mark, Mike, PJ and myself we are fearful that he can easily get injured during certain processes of transferring him. As much as we all hate to say no, I think I’ll be the voice of this particular step in our journey and deliver the news. Some aspects of ALS just become difficult for the team of caregivers. I’m learning that NO is an answer even for terminally ill patients. 

Well, May God continue to bless all who know and love Chris Lee Clutter. He is loved. Remember-Geaux be Awesome 😎 


Jeannine and Mark Clutter

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