I am Juan Reyes
a U.S. military veteran living with ALS
I’ve been fighting to improve treatment opportunities as well as advocating for myself and others in the hopes of ending ALS.
I was diagnosed in October 2015. I’ve been fighting to improve treatment opportunities as well as advocating for myself and others in the hopes of ending ALS.
Why do I fight? I fight against ALS because I experience it every day. Since my diagnosis on October 14th, 2015, I’ve been in the fight of my life. I cannot sit idly by; it’s not in my nature nor my family’s.
Having served in the United States Air Force for 21 years, I’ve learned the art of resiliency — and so has my wife, Meg. It wasn’t until after my diagnosis I learned that veterans are twice as likely than the general population to develop ALS. I was shocked to learn this, and it’s why I fight.
Since my diagnosis, I have deteriorated to the point of having to use a powerchair; I am unable to bathe, dress or feed myself. ALS is an unrelenting, unforgiving disease. It takes everything from you, but it cannot take my spirit nor my will to fight.
My symptoms began summer of 2013. They were subtle — loss of strength in my hands and tripping. It took two neurologists to diagnose and an ALS specialist to confirm my condition.
The oddest observation came from the second neurologist. He pointed at my shoes and said, “Your shoe tips are all scuffed up.” I hadn’t noticed this inane detail. It’s apparently due to foot drop, caused by the weakening of the ankles.
Fast forward six months, I’m applying for disability benefits. I was dismayed to discover there is a five-month waiting period to receive benefits and that the monthly financial burden of living with and getting care for ALS is enormous. Both can leave families at the risk of losing everything only months after diagnosis.
The financial burden put on families while they’re in the fight of their lives is yet another reason why I fight.
It’s been a rollercoaster ride of emotions for my entire family, and there’s an overwhelming amount of information to digest. The biggest lesson I’ve learned has been to surrender myself to the love and support that surrounds me. We live for each day and for each other.
I’ve also realized that it’s ok to embrace the dark moments, as long as I don’t dwell there. Never forget that ALS doesn’t define you.
Why do I fight? I fight for myself, my family, my friends and for everyone living with ALS. And we are not alone. I AM ALS, an organization established by patients and passionate ALS champions, has quickly gained momentum, creating a tsunami of activity unheard of in the ALS community.
Recently, to commemorate the 80th anniversary of Lou Gehrig’s speech, I AM ALS launched the #WhyIFight Campaign. This included a video that has been viewed over 125,000 times and more than 2,000 people have shared the #WhyIFight hashtag, telling their own stories across Twitter and Facebook.
These individual stories will break your heart, but they will inspire you due to the strength exhibited by patients, families and caregivers. How do I fight? I fight by raising my diminishing voice. I fight by joining others to create a world without ALS.
Why I fight is extremely personal to me, my family and every person affected by ALS. This disease is currently incurable; however, I feel in my soul that a breakthrough is imminent. This is why I fight.
Join in the fight.