01:41 - Source: CNN
Time to talk ALS

Story highlights

Anthony Carbajal was diagnosed with ALS at 26 years old

Carbajal's grandmother died from the disease, and his mother is living with it

The survival rate after an ALS diagnosis is two to five years

Editor’s Note: There were countless ALS ice bucket challenge videos circulating this past summer, but Anthony Carbajal’s funny and moving video stood out and has helped raised millions in the fight against the disease he can’t seem to escape. The opinions in this article are soley those of the author.

CNN —  

ALS has no survivors. Zero.

The disease is an incurable – let’s change that – progressive degenerative neurological disorder. For reasons that are still not completely understood, the nerve cells in my brain and spinal cord will gradually deteriorate.

I will ultimately lose the ability to move, speak, swallow and finally breathe. ALS leads to complete paralysis. The average life expectancy is two to five years. Shit. This is not fun to talk about!

Anthony Carbajal's grandmother, Marie Doran, (left) with his mom.
Courtesy Anthony Carbajal
Anthony Carbajal's grandmother, Marie Doran, (left) with his mom.

I have what is called familial amyotrophic lateral sclerosis. Only 5% to 10% of ALS patients have this genetic disposition. My grandmother Marie was diagnosed when I was in middle school. She passed away six years later. My mother, Catherine, was diagnosed when I was in high school and has been living with this disease for 13 years. Although most of my mom’s muscles have atrophied away, she’s the longest living ALS patient in her clinic. She is the most beautiful and inspirational person you will ever meet.

Anthony with his mom, Catherine Scott, who has lived with ALS for 13 years.
Courtesy Anthony Carbajal
Anthony with his mom, Catherine Scott, who has lived with ALS for 13 years.

Four years ago, I graduated from Loyola Marymount University in Los Angeles and moved back home to help care for my mom. I started a wedding photography business. I photographed weddings on the weekends and would help my mom during the weekdays while my stepfather was at work. I was fulfilling two passions: photographing 40+ weddings a year and spending much needed quality time with my mom. I loved it!

But then my hands, arms and shoulders started getting weak. I was carrying camera equipment all day, and it became increasingly more difficult to change settings and hold up my camera. After a wedding, I felt like I was hit by a bus. I was so incredibly exhausted, and it took my body a long time to recuperate. I thought I was just overdoing it, but realized I couldn’t ignore the symptoms anymore.

On January 27, 2014, at 26 years old, I was diagnosed with ALS.

That day, hands down, was the most difficult day of my entire life. I cried uncontrollably in the doctor’s office. When I saw family in the waiting room, I just remember repeating the phrase, “it’s not fair” as my sister Vanessa hugged me without saying a word. Somehow, I summed up the courage to tell my mom the same day. Words can’t describe the level of emotional pain she went through. I really hate thinking about it.

The next day, I canceled 30 weddings I had booked for that year as a photographer. I sold all of my camera gear to refund the deposits. Since then I’ve lost the ability to button my clothes and open bottles. I feel like I have weights strapped to my body. Taking a shower is a workout in itself.

It sucks, but I try to be grateful for the abilities I haven’t lost yet. The muscles in my upper body are constantly twitching and cramping. It’s a constant annoying reminder that my body is breaking down.

Anthony and Laarne Palec were married November 19, 2014, in Riverside, California.
Courtesy Sam Hurd
Anthony and Laarne Palec were married November 19, 2014, in Riverside, California.

I believe this is one of the reasons many people didn’t really know what ALS was all about before the ice bucket challenge: No one wanted to talk about a depressing disease with no cure, no hope. My family included. We rarely discussed the lack of support surrounding this disease because it brought too much heartache. “Be strong and positive for the family” is what I think most of us had in the back of our minds.

Anthony and his mom dance at his wedding.
Courtesy Sam Hurd
Anthony and his mom dance at his wedding.

But now ALS is finally out of the closet after the ice bucket challenge sensation this summer! Wahoo! If there’s one thing I’ve learned from my recent experiences is that we have to share our story, even if it’s difficult. How else can we rally the support we so desperately need? One voice can and will make a difference.

The challenge sparked hope, raised awareness and made a huge impact on launching new research initiatives, but we still need funds to find a cure.

My family, including my new wife, Laarne, and I have a sense of empowerment that we’ve never had before. Priceless. My quality of life is amazing right now, but it’s so great that I don’t want it to stop. It’s bittersweet. I’m grateful I’ve found the love of my life. I just want to spend as much time as I can with her.

Let’s change the course of ALS. We’re stronger together. Please join me in this fight, and I’d be so incredibly grateful.

Anthony’s family has set up a fund to help pay for his future care. If you would like to donate, please click here. To support Anthony’s quest for more ALS research funding, please visit ALS Therapy Development Institute.