Amyotrophic Lateral Sclerosis, or ALS
, is a progressive neurodegenerative disease that causes muscle weakness, paralysis and, ultimately, respiratory failure. It's terminal.
No one survives and I'm doing everything I can to change that.
When I'm not advocating, I'm living my life to the fullest and using all the abilities I have before I lose them. I know how this disease progresses after watching it take its course with my grandma and mother.
ALS has taken a lot from my family, but we've taken a lot back along the way. I've learned so much since my own diagnosis and my ice bucket challenge video
went viral last year.
I realized that our voices do matter. I realized that we need to share our story; because it will help others understand the realities of this disease.
I'm never giving up.
At times I feel super needy, but learning to ask for help from family and strangers has been super humbling. I'm learning to adapt.
Atrophy in my hands initially made me quit my photography career, but recently I challenged myself to find creative ways to use my camera again despite my increasing limitations. Cramps in my tongue scare me with the thought that I will ultimately lose the ability to speak, but then I'm inspired by other patients who use technology and social media to make their voices heard. Muscle weakness in my arms means I need help in the bathroom, but I get to buy a special toilet to clean my butt, so that should be fun!
I have to adapt to the new normal of each day and adjust to the changes in my progression. Believe me, it isn't easy, but with the support of my wife and family I make the best of each day.
Newlywed life is amazing, but ALS leaves a mark there, too. In more than 9 out of 10 cases
, the disorder is random; anyone can be afflicted regardless of age, sex or race. Unfortunately, my family carries a genetic mutation.
Fearful of passing on my ALS gene, my wife and I have decided not to have children. I can't lie, it's sad. But it also means my wife and I are that much more dedicated to one another. We're each other's world and ALS can't take that away from us. Plus, we adopted a dog and we love her to pieces.
My sister, Vanessa, is always there with some slap-you-in-the-face tough love when I need it. She hardly ever breaks down and when she does, she hides it well. Lately, she's being more authentic with her emotions and I'm proud of her for that.
Vanessa is also doing her part to bring us closer to a cure by donating her skin and blood for ALS research, but has chosen not to learn the results of her genetic testing. Even if a genetic mutation is found, it doesn't necessarily mean she will develop ALS and, rather than living in fear of the disease, she chooses to live life in the moment. She won't let the fear of ALS hold her back.
You will never hear my mom complain even though she is almost immobilized, and depends on a breathing machine full-time because of how far her ALS has progressed. My mom is always smiling, even though she has every reason to cry; she's been fighting ALS for 13 years.
I get my spirit and optimism from her. Not being able to care for my mother has been a difficult transition. I don't have the strength in my arms to lift her out of bed. I can't prepare her meals or help her get ready for the day. I miss that.
Even in the face of adversity my mother strongly believes in a purpose-driven life. After hours of crying on the most difficult day of my entire life -- the day I was diagnosed at 26 years old with ALS -- she told me I was put on this Earth for a purpose. My mom has told me this throughout my childhood. Sometimes I believe it and other times I don't, but I can always go back to those words to draw strength.
If my purpose is to help end ALS, then I'm ready!
So what's next? Why do we need to dump buckets of ice water on our heads again this month? Well let me tell you.
ALS patients are dying. Let me make that loud and clear.
In the United States, every 90 minutes another patient is diagnosed with ALS
. Every year families are torn apart. That's why we need another ice bucket challenge, and every year until we find a cure. This year we need to focus on supporting research.
My charity of choice is the ALS Therapy Development Institute
. The institute directly received $4 million last year from the Ice Bucket Challenge through donations given to ALS.net and spent every penny on research programs with the best opportunities to make an impact to end ALS.
One-million dollars went directly toward the first precision medicine program for ALS and toward increasing enrollment from 25 patients to 300, including me! The other $3 million went to the de