Not today als, not today

Written by Scott’s wife, Jamie Lee Smith

Recently, our family received some of the best news, but also some of the worst news of our lives. We had just found out that we were adding another baby girl to our family when BAM! A few weeks later, we found out Scott was being diagnosed with ALS.

For those of you who are unfamiliar with ALS, it is a progressive neurodegenerative disease that causes the loss of muscle control. Sometimes there is a genetic cause, but most of the time the cause is random and unknown. Patients are told there is no cure and it will lead to an early death, usually in about 2-5 years. While you may hear it is very rare, it's actually not.

About 15 Americans are diagnosed with ALS every day. It's a particularly cruel disease, because piece by piece, it takes away a person's life and independence, while keeping their mind intact. 

So far, Scott has experienced voice, swallowing, arm, hand and leg weakness. It has already taken away his ability to sing, play guitar, run, exercise in the way he loves, and train clients effectively. Losing these things alone have been devastating for both him and our family. And we know we are going to grieve even more losses in the future. The heartbreak and pain we are feeling from this diagnosis is something I wouldn't wish on my own worst enemy.  

There are many days where we feel like we are walking around in a living nightmare, and getting out of bed seems like an impossible task. But Scott and I are choosing to focus on the positives in life in order to keep moving forward. While the year 2020 has seemed like the loss of kindness and humanity in our world, we are happy to report that we have found it still very much exists. We have been absolutely overwhelmed by the love and support we have been shown by family, friends, and even strangers since the diagnosis. The texts/calls, prayers, cards, flowers, care packages, gifts, many delicious meals, putting up Christmas lights, house cleaning, lawn care, etc. have been such a blessing! It brings us to tears knowing how many wonderful people we have in our corner. We are very aware of the fact that there are people who suffer this diagnosis alone, and we are so grateful to say that we are far from alone. 

We hope through this journey we can bring awareness to this disease that's been painfully underfunded and overlooked. The ALS bucket challenge helped start several clinical research trials, but it has still left a cure just out of our grasp. Despite this, we are refusing to let ALS take away our ability to hope.  A quote we are living by: "While we can accept the diagnosis, we do not have to accept the prognosis." So, we are choosing to fight for Scott's life and remain hopeful that a scientific breakthrough will happen in his lifetime.

I tell Scott repeatedly that while his good looks, big muscles, and beautiful voice are what initially attracted me to him, it was his kindness, intelligence, and good heart that I fell in love with. And ALS cannot take that away from him. If you know Scott, you will agree when I say he is truly a good human being, one of the best ones on this earth. His daughters deserve to grow up with an incredible father and know what an amazing man he is. His life is worth fighting for.