As he lines up for Monday’s Boston Marathon, John Platt will feel the same jitters as every runner, plus a few of his own. Did I train hard enough? Will I make it up Heartbreak Hill? At what mile will I go blind?
The Moon resident’s feet always are numb. It will feel like he’s running in work boots. His eyes will be glued to the ground as he thinks through every step.
When the Kenyan elites float past him around mile 11, he’ll be battling vertigo; by mile 18, his peripheral vision will go gray. That’s Uhthoff’s phenomenon, a rare side effect of his multiple sclerosis.
“It’s almost like a storm is approaching,” he says of his temporary blindness, which kicks in when his body gets too hot. “It gets darker and darker,” to the point where he has to stop and stuff ice into his skull cap and arm sleeves to cool down. That brings back his eyesight and puts him back on the course. Until he overheats and loses sight again.
But nothing will stop the 42-year-old father of two — not the weather, which plays roulette with his symptoms; not his doctors, who advise him to not run long distances; and not his body, which fails him every day.
“You run free,” he says. “Alive. In the moment. It’s an entirely different type of runner’s high.”
His doctor calls him “oppositionally defiant.” That makes Mr. Platt grin.
Pushing back
Some 400,000 people in the U.S. have multiple sclerosis, a chronic, degenerative disease of the central nervous system. Mr. Platt was 29 and watching the Daytona 500 on TV when he experienced his first symptom in 2003.
“The world started to spin,” he recalls.
The next day, while driving, he suddenly couldn’t see to his left. He lost feeling in his legs, then his balance. Doctors found a lesion on his brain that they thought might be the result of a stroke or a tumor. It took 18 months for them to diagnose multiple sclerosis.
Mr. Platt will never forget sitting on a paper-covered exam table at Allegheny General Hospital in 2005 when he was told: MS.
“Life almost stops for a second,” he says.
But part of him was relieved. Now he and his wife, Aimee, had a name for the inexplicable symptoms. They could push back.
There is no cure for MS; doctors treat its symptoms and reduce relapses with drugs that suppress the immune system, explains Troy Desai, Mr. Platt’s neurologist at AGH.
“But it won’t make him better or heal the damage,” Dr. Desai says.
Over the next seven years, Mr. Platt developed new symptoms: fatigue, memory loss, tremors. He walked like a drunk. The worst was Uhthoff’s, which struck one steamy June day in 2006 when he was making a sales call for a freight company in a hot warehouse. Even small increases in body temperature cause him to lose his vision. He lost his job. He wanted to give up.
Deeply depressed, he retreated to his air-conditioned home (cooled to 60 degrees) in Moon. To walk, he needed a cane. He had a wheelchair waiting in the garage.
Raising money, awareness
Doctors often prescribe exercise to help manage MS symptoms, but Mr. Platt started running after a personal crisis. In June 2013, he lost a friend from his MS support group to heart issues. He’d flooded his systems with many of the same high-dose steroids. Her sudden death hit him hard.
“I needed to do something about it,” he says.
He went to his basement, stepped onto a dust-covered treadmill his brother had given him, and took a first step. He had to hold tight to the handrails, and it took a half hour, but he walked a mile. The next day, he took a few steps more than that, and the next day, a few more.
The following November, cheered on by his doctors, he walked his first 10-kilometer course around his housing plan. Then, he walked a half-marathon.
In 2014, he got his first real pair of running shoes and a new goal: to raise money and awareness for the MS Society by walking the distance of a marathon every week for an entire year: 1,362.4 miles, or 2.5 million steps.
“That’s when I fell in love with the marathon,” he says.
Or at least his version of the race.
He walked a marathon in April 2014 as part of Pittsburgh’s annual MS Walk. With his father, John Platt, driving behind him at 4 mph, Mr. Platt left his house near Olson Park at 2:45 a.m. and walked to Point State Park. It took six hours.
He decided to try running. He was neither fast nor pretty — he drags his feet — but it improved his health and gave him purpose. He signed up for the Pittsburgh half-marathon in May 2014, and the following September ran 33 miles on a treadmill at Elite Runners, formerly in McKees Rocks, to raise money for MS research.
Matt Imhof, Elite’s director of running operations, still can’t quite believe it.
“He was on it for seven hours, with no breaks,” Mr. Imhof says. “He is so much tougher than the rest of us.”
Mr. Platt next ran three full marathons, the first — and his fastest marathon to date — in Chicago in October 2014. By year’s end, he had walked or run 1,667 miles.
In 2015, Mr. Platt decided to run the world’s largest — the New York City Marathon. But the day before the race, he wore out his legs with his wife and two daughters touring Times Square. As he came down Fifth Avenue during the last few miles of the race, he was visibly in so much pain that his wife jumped onto the course to run with him a quarter-mile to keep him going.
“You can’t be here!” he yelled. “They’re gonna grab you!”
His Chicago time had qualified him for the 2016 Boston Marathon, as one of 50 mobility-impaired runners. Five months later, he ran alongside athletes with spinal injuries and missing limbs, including Patrick Downes, who had lost his left leg in the Boston Marathon bombings in 2013.
As expected, Mr. Platt’s vision went dark around mile 14. He lost 26 minutes icing down in four aid stations along the course. Still, the experience of running the “marathoner’s marathon” in under six hours was so profound, he couldn’t wait to do it again this year. But he would have to take a different approach.
During some race last year — he’s not sure when because he runs numb — he had fractured his pelvis. His doctor would allow him to continue running only with a trainer.
John Platt runs through his neighborhood this month in Moon. After two years of vision problems and balance issues, Mr. Platt was diagnosed in 2007 with multiple sclerosis, a disease that strikes the central nervous system. (Steve Mellon/Post-Gazette)
Getting ready for Boston
Running always flares Mr. Platt’s MS symptoms, so he pushes to get used to wonky legs and a fuzzy head. He sweats buckets. Every so often, he trips and falls.
“I know every crack in every sidewalk,” he says.
His trainers press to make his body as strong as possible. Weekly workouts at Cool Springs Sports Complex in Bethel Park include weightlifting, speed work and battle ropes. Once a week, he strips down and slips his 6-foot frame into a negative 220-degree cryotherapy chamber to speed recovery.
Cooled to the core, Mr. Platt dresses, then steps into a pair of neoprene “Incredible Hulk” shorts that secure him inside an antigravity treadmill.
“These things give me a permanent wedgie,” he complains as he starts to jog. He’s quickly drenched in sweat.
His trainer, Jeremy McCullough, shakes his head and says, “I push him the same as any client.”
When the session is over, Mr. Platt holds up his right index finger. It’s quivering with fine tremors, a tell-tale sign of a flare-up — and of a good workout.
During Monday’s Boston Marathon, Mr. Platt, for the first time, will run with Mr. McCullough and another guide, Lauren Wentz. They’re there not to be his eyes, but to run ahead to the aid stations and explain his heat blindness to volunteers. They’ll stand ready with ice, hoping to shave minutes off last year’s time.
Mr. Platt understands that people think this is crazy. But as he has since his first step on that treadmill years ago, he’s thinking about his daughters Julia, 13, and Olivia, 11.
“I wanted to be active in their lives,” he says, his voice thick with emotion. “I didn’t want to be that dad that was inside looking out the window as they were playing. I wanted to be out there with them.”
Because they are significantly more likely to develop the disease, he worries that they might also hear the words, “You have MS.” His running shows them that you can overcome it.
“I’m definitely in a much better place because of marathons,” he says. “They really do change lives.”