The inspiring story of O.J. Brigance thriving with ALS

In 2014, the Ice Bucket Challenge raised millions of dollars for ALS research. That money led to the discovery of a new gene that contributes to the disease. Dr. Janel Johnson said the majority of the research focus has been on following studies based on research from Caucasians' DNA.

His movements are no longer his own. Whether it's help from his longtime nurse Bill or the mobility from his motorized wheelchair, O.J. Brigance is making the most of his life with ALS.

In November, Brigance spoke to the varsity field hockey team at Notre Dame Prep before a semifinal game.

"In the end your destiny will be determined by your execution, your skill and your desire," he said.

Hanging on every word, the students seemed mesmerized by his voice. ALS has also robbed Brigance of his ability to speak, but through eye movements and his computer he still communicates.

"I have been blessed to experience great success and devastating defeat during my athletic career," he said. "In both cases it was the journey and the sacrifice that I remembered."

A 12 year journey on the football field took him to the Super Bowl with the Ravens in 2000. 

Sacrifices would come seven years later when he and his wife Chanda learned about his diagnosis.  At the time he was given three to five years to live.

"My husband is a strong man, so I had no doubt that he'd be able to push and pull through this thing," Chanda Brigance said. "Some people deal with the disease differently, and O.J. would be one of those people I would hold in high esteem and I do because he's able to change his thinking."

Nurse practitioner Lora Clawson runs the ALS Clinical Services Program at Johns Hopkins. She's spent the last 30 years treating patients with the disease.

"We've become more aggressive in managing patients, diagnosing them early, getting them into clinical trials and using what clinical management tools, medication and symptom management we have in our tool box to be able to help the patient live as long as possible within the highest quality of life," Clawson said.

excerpt © 2016 Scripps TV Station Group. All rights reserved.