I am Vikki Simonetti

caring for someone living with ALS


Slowly we learned our "new normal" ... over and over. It’s a never-ending adjustment.

I’m my veteran husband’s caregiver. To me, ALS means being a part of a very exclusive club that NOBODY wants to be part of. It means learning what is truly important. My husband retired in 2011, and we thought we’d have a lifetime of travel and grandchildren. Little did we know, three years later in August 2014, we would get the diagnosis of ALS. At first I was terrified! We have wonderful doctors that encourage and tell us, “No one has an expiration date stamped on them.” Slowly we learned our “new normal” … over and over. It’s a never-ending adjustment. You just learn to roll with the punches. It has been almost six years now. We don’t travel as much now. We’ve been blessed for every day we have together. I try to focus on the good because if you stop to think of what has been lost along the way … that, my friends, is a very slippery slope and hard to come back from. … But until there is a cure, we will keep fighting!

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