Comments on: Fighting words http://www.speed4sarah.com/fighting-words/?utm_source=rss&utm_medium=rss&utm_campaign=fighting-words LET'S MAKE ALS HISTORY Tue, 06 Nov 2018 20:24:48 +0000 hourly 1 http://wordpress.org/?v=3.6.1 By: Candy Bogardy http://www.speed4sarah.com/fighting-words/#comment-2193 Candy Bogardy Thu, 24 Nov 2016 21:24:11 +0000 http://www.speed4sarah.com/?p=2435#comment-2193 Control…or lack of it. I grit my teeth every time my husband corrects me, tells (notes, signs) me what to do, or frankly just gives me that “you moron” look. My control freak husband has had to learn what being out of control feels like. It doesn’t suit anyone, honey. What he has learned from this awful disease, it that people love him; and he can ask for help. Savor those little moments that you have. They outweigh the “OMG what are you doing” moments every time.

And we’ve also both been sharing a brandy alexander at bedtime lately (peg tube, baby!). It’s got lots of calories, which he needs, and the little bit of stress relief that you both need.

]]> By: Heidi Flowers http://www.speed4sarah.com/fighting-words/#comment-2192 Heidi Flowers Thu, 24 Nov 2016 17:41:11 +0000 http://www.speed4sarah.com/?p=2435#comment-2192 This story brought back a precious memory for me. I lost my little sister Kym 11 months ago to ALS. My best friend. One day while visiting her I told her that her teeth looked “grody” (a word from childhood) She absolutely belly laughed at the description. I can still hear that laughter. I brushed her teeth really well and asked her how I did and her reply was two thumbs up. It was one of the many memories I hold close to my heart.

]]> By: Patty http://www.speed4sarah.com/fighting-words/#comment-2191 Patty Thu, 24 Nov 2016 17:16:28 +0000 http://www.speed4sarah.com/?p=2435#comment-2191 Dear Sarah,
I am two years into my ALS bulbar onset disease. My husband who is a Vietnam veteran with PTSD has become my number one caregiver but what you mentioned ALS shaking your husband to the core was so true. We don’t seem to have the same relationship, but I’ve never been one to argue but rather suffer in silence which of course means I can be passive aggressive. His disability is very stressed related so he worries constantly that I will fall. OK I have fallen once last year. Our conflict is that he really prefers me to be completely disabled and stay in one place so he can be in control. I of course fiercely defend what little independence I have left, I can still walk a bit. But he is in constant stress about me. His only respite is a friend takes me out of the house for a while.
I always enjoy your excellent writting and deep sensitivity to our journey

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