In 2020, Marion Jones was living in Boston and working for a green energy company when she decided it was time to see a doctor. For about a year, he had been experiencing persistent health problems.
“For me, it started to appear as a burning sensation in various parts of my body. It would maybe last 10 seconds and then migrate to another part of my body,” he said.
When he started having unbearable back pain, he made an appointment.
The first doctor he saw couldn't explain the symptoms, but a second doctor suspected multiple sclerosis, or MS. An MRI quickly ruled out MS, and Jones returned to his normal life.
But after developing a headache that lasted several months, a friend convinced her to visit the emergency room. A doctor prescribed a muscle relaxant and discharged him, but just 72 hours later, Jones found himself in the hospital again, this time with difficulty moving the right side of his body.
It was there, at Beth Israel Lahey, that Jones received the news that would change his life forever. She was diagnosed with neuromyelitis optica, or NMO, a rare autoimmune disorder that primarily affects the optic nerves and spinal cord.
Sometimes called the “cousin of MS,” NMO usually causes severe, rapid, and destructive attacks on the optic nerves and spinal cord, and can lead to permanent vision loss or paralysis.
Things quickly took a turn for the worse for Jones. A flare-up caused partial paralysis and doctors admitted her to the hospital's intensive care unit.
Jones was admitted to the ICU after a rare disease diagnosis left her temporarily paralyzed.
Marion Jones
But Jones, who had limited ability to walk and care for herself, needed more specialized care and was eventually admitted to Encompass Rehabilitation Hospital of New England, a hospital that specializes in inpatient rehabilitation.
For Jones, who was an avid runner before her diagnosis, it was a particularly devastating blow.
“In 2019, I ran 35 five K's in 35 weeks…until I couldn't walk or go to the bathroom. It was something I never thought would happen to me,” Jones said.
Jones, who had no family in Boston, said Encompass doctors and therapists put her on the path to recovery from day one.
“They really became my family. In my family's absence. They were very patient,” Jones said.
Dr. Daniel Lyons, medical director at Encompass Rehabilitation Hospital of New England, was a member of that team.
“Marion had a situation where her autoimmune disease affected her cervical spinal cord injury. Basically… she had a spinal cord injury. She had lost strength in her arms and legs. There was sensory loss. She also had a lot of muscle pain and tightness from the spinal injury,” Lyons said.
Jones was forced to use a wheelchair after she lost the ability to walk following her NMO diagnosis.
Marion Jones
Jones' rehabilitation program was grueling: three hours of intense therapy every day. But Lyons said the work was worth it. “He made incredible progress from the moment he entered the rehab hospital; he was using a wheelchair, not ambulatory. [In] In a relatively short time, he had progressed from walking on parallel bars to a walker, and was able to walk short distances with a walker when he left the inpatient rehabilitation hospital.”
Outpatient therapy continued for Jones, and it was during one of those sessions that her therapist challenged her to run on a treadmill. It was difficult for Jones and he says he was only able to run for about 30 seconds, but it sparked his desire to run again.
“After that session, I came home, got on the bike path and said, 'I'm going to see if I can run for a minute,'” Jones said. “As the weeks went on, the minute became a half mile, and that half mile became a mile. And that's where I started, really getting back into the mindset of running.”
Finally, he regained his form. Jones says she never set out to run a marathon, but that's where her path took her. Since his diagnosis, Jones has run six marathons.
A rare disease robbed Marion Jones of her ability to walk. Through grueling therapy sessions, he learned to run again and now runs marathons.
Marion Jones
On Monday he will participate in the Boston Marathon. When you cross the finish line, you will receive the Abbott World Marathon Majors six-star finisher medal, which is only awarded to runners who have completed the six most prestigious races in the world.
In the run-up to the race, Jones has been raising money for Beth Israel Lahey, the hospital that diagnosed and treated his NMO. Jones considers returning to Boston a “coming full circle moment” for her.
“The doctors didn't know if I would walk again,” he said. “Being able to run in Boston, knowing what my body has endured and overcome, will be a victory lap… a celebratory victory lap. And I'm not just running for myself. I'm running for the rare disease community.”
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