Update:

On July 15, 2022, The He, known by his family and friends as Tom Garey, won his battle with ALS. The journey with ALS is not over for our family. We must now learn to live in a world without an amazing person knowing ALS is still a disease that has no cure. We will continue on, keeping him alive through our memories and continued advocacy in his name. 

Follow us as we journey through an Alpha Lima Sierra (ALS) life. ALS, more commonly known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that destroys the motor neurons in your body. Motor neurons are the messengers to the muscles. When motor neurons can no longer send their message to the muscle, the muscle atrophies causing weakness and eventually loss of movement in that muscle. ALS will progress to the point that you can no longer use legs, arms, swallow or even breath. While you are progressing with this disease, you are fully aware of what you are losing. Your mind is unaffected.

Now take a moment and just imagine that. Think about not being able to move. No longer able to hold your spouse or child’s hand. No longer able to walk to the bathroom, take a shower, go for a walk or wave goodbye. You can no longer eat because you are unable to swallow which can cause you to choke. You can’t catch your breath. You can’t inhale or exhale. You want to, you try, but your body is not doing what your brain is telling it to. Now think about never telling someone you love them or calling out for help. This is ALS.

An interesting fact about ALS is that military veterans are approximately twice as likely to develop ALS than civilians.  In fact, ALS is considered a service connected disease by the Department of Veterans Affairs (VA). So while we make sense and figure out ALS and what it means to our family, we are also learning and advocating for care and services through the VA for not just the Big He but all veterans with ALS.

This is not an easy journey we are on and there most definitely won’t be a happy ending unless a cure is found in the very near future. I am going to guess it may be easier for family and friends to follow us here since most people are freaked out about illness and death. You don’t know what to say, scared that “but for the Grace of God…” or are just so uncomfortable you find it easier to just not say anything.  I hope you see as we make this journey, you won’t catch ALS, and a terminal illness will not rub off on you and the best thing you can say  and do for us is say  I love you  and just come by and sit with us. You will see we are still the same ole people, sort of, and we are trying to do our best in this  really $hi!!y situation.  I say sort of because as experience has taught us these life changing events actually change who you are. Just as we are not the same as we were before the losses, we are not the same as we were before the diagnosis.