With a few words and his beaming smile, an entire room can light up and fill with laughter. His enthusiasm for life and love is infectious. He calls it “Rhino Style.” I didn’t know that rhinos were magical creatures.
I met Gus Prieto a few weeks ago at the PatientsLikeMe Team of Advisors kick-off meeting. Each individual on this team comes with experiences, conditions, and strengths that are different. It’s my hope that over the next few months, you’ll learn about them individually here.
People with diabetes want a cure. They want understanding. They want support.
People with ALS want a cure. They want understanding. They want support.
People like Gus.
I’m sharing his story today.
What is ALS?
You might know it as Lou Gehrig’s disease. The Ice Bucket Challenge that was all the rage last year (and raised an important amount of money for research!) was for ALS. But much like diabetes, the general public may not understand what the disease really is, so here’s a great explanation…
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
Based on U.S. population studies, a little over 5,600 people in the U.S. are diagnosed with ALS each year. (That’s 15 new cases a day.) It is estimated that as many as 30,000 Americans have the disease at any given time.
Current statistics show “half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more; up to ten percent will live more than ten years.”
Being on the PatientsLikeMe Team of Advisors brings people like Gus into my life. I wanted to share his story – and in doing so, help bridge the patient community across conditions. We can all learn from each other, and today, I’m sharing what I learned from Gus, in his own words.
Life Before Diagnosis: Rhino Style
I was born in Cleveland Ohio, 1963. That was a good day! I moved to California with my parents in 1979. I was sixteen and didn’t want to leave Ohio, but I really didn’t have a choice back then. Shortly after we moved, my Mom and Dad split up and divorced. By the time my Dad was diagnosed with ALS, we had drifted apart, so I didn’t spend time or see him very much. I hated to hear how his life had changed and that he couldn’t walk.
What prompted you to go to the doctor?
Tell us about your diagnosis…
Hello, Gus speaking.
Gus, do you have a moment? Yes, well… we received your test results from your blood work, and it tested positive for SOD1 unknown variant related to ALS familiar diseases.
What did you do in those first days?
How did your family deal with the diagnosis?
What scares you most about ALS?
What has surprised you the most after your diagnosis?
Who is on your medical team?
What is your current treatment plan?
How did you decide?
Have you participated in clinical trials?
What would you tell someone who is just diagnosed?
- Stay positive and focused.
- Do your homework, research, join PatientsLikeMe and ask what is working for those diagnosed early on.
- Create an open line of communication with your caregiver. Let them know that mood swings will happen more frequently. Anger, frustration, and feeling alone is often felt by both. Build the bridge to understand each other’s new feelings because they’re not the same.