Quentin Irby has always been athletic and very active. The 38-year-old father of seven was a basketball player in high school and has never let anything slow him down, until he was diagnosed with amyotrophic lateral sclerosis, or ALS. The progressive neurodegenerative disease that affects nerves in the brain and spinal cord is often called Lou Gehrig’s disease, because it ended the well-known baseball player’s career. Irby is determined it will not end his ability to enjoy his life and care for his family.
Irby lived in Chicago when he experienced his first ALS symptom of foot drop, or difficulty lifting the front part of his right foot. His right hand also started contracting slightly, and he couldn’t open it fully. After two trips to the hospital emergency room and several tests, he was sent home with no clear diagnosis.
A new start in Austin
Irby and his family moved to Austin, Texas for a fresh start in 2023. His fatigue was getting worse and he found himself staying in bed more than he wanted. He started losing muscle mass in his right leg. Even though his diet had not changed, he realized he had lost more than 40 pounds in a year, and he decided to see another doctor at an Austin hospital who referred him to neuromuscular neurologist Dr. Yessar Hussain.
Irby saw Dr. Hussain for a neurological evaluation in April of 2023. After undergoing some blood tests and a lumbar puncture, Irby was diagnosed with ALS. He was stunned by the news and did not realize ALS could affect someone at his young age but decided he had to keep fighting for his family.
“After the diagnosis, I let all of my emotions out in one day,” said ALS patient Quentin Irby. “Creating more stress would only make it worse on my body. I need to be strong for my kids.”
A clinical trial offers hope
Irby decided to enroll in a clinical trial through the research department of Austin Neuromuscular Center, the National Neuromuscular Research Institute (NNRI). The trial is one of several that NNRI offers ALS patients and others with different neuromuscular conditions.
“Unfortunately there is no cure for ALS right now,” said Dr. Yessar Hussain. “The clinical research trials offer patients with rare diseases like ALS the opportunity to access cutting-edge treatment right in our clinic.”
Fighting on with the help of his family
Irby had to give up his job as a delivery truck driver because the physical demands became too much to bear. His life’s pace has slowed down, but he tries to stay active around the house, cooking for his children and going to the bus stop to pick them up at the end of the school day. He wears a brace on his foot and says he makes healthier diet choices now to keep his body as strong as possible.
“I have good days and bad days,” said Irby. “I’m not ready for ALS to take me out so easily, and my family needs me, so I’ll keep fighting.”
Irby and his family will join others at the Walk to Defeat ALS in Austin on October 21st, 2023. He wants to meet others with ALS and encourage them to keep fighting along with him. He hopes they will not put their heads down but rather keep them held high as they battle this disease.
We are currently enrolling patients in clinical trials for ALS and other neuromuscular diseases at our research department, the National Neuromuscular Research Institute. Learn more about our clinical trials here or call us at (512) 920-0140. And follow us on Facebook, LinkedIn, Twitter, and Instagram for important updates.