WTOP Sports Director Dave Johnson had more than a hunch he had multiple sclerosis — he’d watched his mother develop the same symptoms when he was a boy.
“I had an inkling it might be MS, the more they asked me to take tests and MRIs,” Johnson said. “I started to think back to the symptoms my mother had — a curling of my big toe, and I started to notice my hand movements were similar to hers.”
In the past few weeks, Johnson received the unwanted news: “I have primary progressive multiple sclerosis.”
According to the Mayo Clinic, MS is a potentially disabling disease of the brain and central nervous system. While most patients experience periods of new symptoms that develop over days or weeks and often improve, primary progressive MS patients experience a gradual onset and steady progression of signs and symptoms without relapses.
“Right now it’s about fighting off something that’s inside you, that wants to progress and advance,” Johnson said.
The 55-year-old said he noticed he was periodically dropping pencils and pens, and experiencing muscle weakness. The symptoms were concerning, since they were so familiar. His mother, Mary Lue, died of complications related to multiple sclerosis at age 43, when Dave was 15.
“My first 15 years of life, she was in a wheelchair,” Johnson said. He attributes his desire to be a broadcaster to his desire to entertain his mother.
“She’d listen to me pretend to do play-by-play — it was just me and her,” Dave recalled.
Now in his 25th year at WTOP, beginning his 23rd season doing radio play-by-play with the Washington Wizards, and 24 years calling D.C. United soccer matches, Johnson has never been one to take it easy.
Given his mother’s history with MS, Johnson decided to disclose his diagnosis, as co-workers and friends began commenting on his gait. He took to Facebook and Twitter to tell others of his diagnosis.
“It’s perfectly OK to talk to me about it,” he said. “I have MS. This is a part of me and it’s not going away.”
There is no cure for MS, and with primary progressive MS, there is only one FDA-approved disease-modifying therapy.
“At this point, there’s only one option and that’s a drug you get through the infusion process called Ocrevus,” Dave said. According to the Mayo Clinic, those who receive this treatment are slightly less likely to progress than those who are untreated.
Johnson said he is thankful for the care he is receiving from a team of doctors at Johns Hopkins in Baltimore. He hopes his openness about the disease will raise public awareness — and perhaps some new treatments.
“I’ll take any suggestion as long as it doesn’t involve eating kale,” Johnson jokes. “I don’t want to let this beat me. It beat me and my family once and we lost the ultimate loss to it 40 years ago. I am determined to not let this change me or define me.”
For a man whose career includes travel, living out of a suitcase and the excitement of professional sports, Johnson’s goal is to maintain his lifestyle.
“I want to make multiple sclerosis more manageable for selfish reasons. I want to stay out of a wheelchair and I want to continue to function and do what I do and make a difference,” he said.
He is determined to fight against the disease and to maintain his active lifestyle. But Johnson, who is a husband as well as a father to a college-aged son, isn’t minimizing his condition.
“I’m scared out of my mind. But the bottom line is being afraid is not going to solve anything. It’s not going to help me. So it’s about coming up with a plan, since this is going to be a part of who I am. Is there some way for me to make a difference in somebody else’s life?”
Johnson said he knows at times he will have to rely upon the consideration of others.
“We need to be there for each other because too often we stay quiet. The reality is we’re all going through a storm of some sort. This is my storm,” he said.
Before his diagnosis, Johnson thought his mother’s death from MS had put his concerns about the disease behind him.
“So now this is part of my journey. And this would be the ultimate way to script a perfect chapter to somebody I love with all my heart — to help make a difference in ending the disease that cut short her life.”
Johnson said he knows he is not alone in his battle. He has family, friends, co-workers and fans rooting for him. And he remembers his mother’s words: “Keep smiling, people will wonder what you’re up to.”
Through bittersweet near-tears, he realizes the next stage of his life will call upon the wisdom his mother shared with him.
“Let’s continue to fight together and laugh and keep smiling, knowing each day will be better than the next.”