In 2017 Brad started experiencing multiple falls that became concerning. He went to get checked out and discovered there was a baseball sized tumor growing on his brainstem. This tumor was a meningioma that had been growing for decades, possibly upwards of 30 years. As Brad was rushed to surgery, he was told his tumor would be inoperable if it were any larger. Surgery lasted for 22 hours, and recovery was a difficult process of relearning to walk, talk and think.
Brad made steady progress for about 9 months, but then started falling again alongside new and concerning symptoms. He developed ataxia, a loss of muscle coordination that greatly affected his balance, gait and speech. In a huge blow, Brad learned that he had developed a rare brain disease called hypertrophic olivary degeneration (HOD). When his brain tumor grew, it pressed on the olivary bodies (or olives) in his brainstem. When the tumor was removed these olives swelled, then began to degenerate. There is no cure for hypertrophic olivary degeneration, and Brad was forced once again to relearn to walk and talk, this time greatly impacted by ataxia caused by HOD.
In this episode of the Major Pain podcast, Brad discusses his incredible story of survival and acceptance. He has leaned heavily on the serenity prayer, God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. Brad says, “I can’t change the past. I can’t change that I had a brain tumor. I can’t change that I developed a brain disease that has no cure. So what can you do? Accept it. That’s what a lot of people have a hard time with. You have to do what you can to make it better or change it.” Aided by his wife of 41 years, Brad works very hard to improve himself through physical and speech therapy. He also speaks highly of neuroplasticity, which he uses to retrain his brain. Brad approaches his situation as a challenge to be met and conquered, fueled by his powerful acceptance.
During this podcast Brad shares these important resources for individuals living through brain tumors, ataxia or HOD.
Hypertrophic Olivary Degeneration Association (HODA): https://hodassoc.org/
National Ataxia Foundation (NAF): https://www.ataxia.org/
Rhode Island Ataxia Support Group: https://www.facebook.com/groups/1593227784283343/
The Caroline Caprio Scholorship & Giving Fund: https://ccsgf.org/
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast