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Lynne’s “ALS: A Love Story”

Valentine’s Day has become a special day for Augie’s Quest. We see it as a time to share several stories of love – love in spite of, and even because of ALS. Last year, we dubbed it “ALS: A Love Story” and asked many of our ALS Champions if they would share their adventures in love and ALS with us. And share they did, offering up beautiful, honest, personal experiences and musings on their relationships that endure, are challenged and thrive, through ALS.

I was so inspired and moved by each, and find myself revisiting them when I need a “pick me up” on a particularly tough day for Augie and me with ALS. I hope they do the same for you. Each story reminds me to pause, be as present as I can in this moment (however good or bad it may be), and consciously appreciate our loved ones a little more. But most important, I try and not sweat — but savor — the small stuff. 

Now, nearly 14 years into this disease and with Augie’s 61st birthday just around the corner, Augie and my “ALS love story” is all about finding and experiencing joy in the everyday; the small stuff. Getting big bear hugs from any of our eight grandbabies, quietly doing my needlepoint as I patiently wait for Augie to type out a silly message on his screen with his one big toe, taking our dog Rubye for a walk, marveling at Augie’s determination and ability to exercise as much as he can even when his body doesn’t cooperate, spending as much time as we can with our family and friends…these are the moments we savor together.

We’ve come so far in this diagnosis, accepting and living our “new normal.” Of course, it’s hard not to reflect back and remember how things used to be, before our life with ALS. When back then, those “small things” seemed to either get easily lost in our daily lives or blown out of proportion. ALS has certainly shifted our perspective. A rude and cruel awakening, but there’s so much more we cherish now.

There’s real joy in looking at the life we’ve built together despite ALS. I know Augie and I are extremely fortunate in this disease. When we were first diagnosed, we believed those life moments, whether a major milestone or the seemingly small ones, would never happen. Today, we try and see each of those small moments together as a gift. It helps to get us through. And it’s a gift Augie and I are working every day to make certain others living with ALS will experience, and find that much needed peace and comfort somehow in this disease.

– Lynne Nieto

   

Lynne’s “ALS: A Love Story”

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