ALS Awareness Month is especially important to Aly Milano’s family because it brings awareness to the struggles their family deals with on a daily basis. Here’s more from Aly, in her own words…
I have been working out at OrangeTheory in Naperville with my two sisters since 2016! It was our time to escape from the realities of ALS and have an hour to ourselves. After seeing the staff always having fun with one another, I decided to apply to work there. I love my OTF family and they have been by my side through all of my family’s hardships. I am so proud of our collective work at OrangeTheory to get behind Augie’s Quest to Cure ALS and raise much needed funds to #EndALS once and for all. And we can’t wait to be a part of the May 18 event at Wrigley Field!
We need to bring more attention to this awful disease and I am so proud to be supporting Augie’s Quest to do just that! The more awareness we can bring to this underfunded disease, the closer we get to finding a cure.
My mom, Moe, was first diagnosed with Stage 1 breast cancer in 2004 at the age of 37. With my dad, Paul and my two sisters by her side, she successfully fought that cancer, only to have it return 8 years later in 2012. More serious, Stage 4 cancer had metastasized to her bones.
While always by my mom’s side with loving support, encouragement, and humor, my dad began experiencing his own set of health concerns, including twitching muscles and significant muscle deterioration. One specific day, he was cleaning out his office and he remembers not being able to physically lift the garbage bag into the dumpster. He thought he was just out of shape. We all wish that was the case!
After several tests and continued symptoms, Mayo Clinic diagnosed my dad with ALS in the spring of 2015. After losing my mom to breast cancer that same year, my sisters and I rallied together to help be my father’s caregivers. Who was once a former gymnast and military man, is now slowly losing his freedom and ability to complete everyday tasks like bathing and brushing his teeth.
Every 90 minutes, someone is diagnosed with ALS. ALS affects nerve cells in the brain and spinal cord, leading to muscle weakness, a loss of motor function, paralysis, breathing problems, and, eventually, death. Although the disease paralyzes the body, the brain is still fully functioning. For unknown reasons, military veterans are approximately twice as likely to be diagnosed with the disease.
My dad, now at the age of 52, is currently 4 years into his diagnosis. The average lifespan of a person living with ALS is 3-5 years. His health is expected to deteriorate and will need a specialized wheelchair, speaking and breathing devices, eventual around the clock care, and even alterations to our home to make it more accessible.
ALS has taken a lot from my dad and our family, but the one thing it can’t break is our love for each other. His condition worsens, but nothing can kill my dad’s spirit. Although the future is scary, he tries not to think about it too much. “I like to think that ALS has actually given me the opportunity to live my life to the fullest, like the song Live Like You Were Dying,” my dad says.
ALS comes with no handbook. Witnessing my dad’s daily struggle with this disease has been an eye-opening experience. I hope no one has to know what it means to be affected by ALS. It is my hope to share my dad’s story and raise awareness of this horrific, debilitating disease.
Together we can create a world without ALS.