Rare Disease Left Her Paralyzed, now she’s running the Boston Marathon

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. He had been experiencing troubling health problems for about a year.

“For me, this burning sensation started showing up in various parts of my body. It would last maybe 10 seconds, then it would move to another part of my body,” he said.

He made an appointment when he started experiencing excruciating back pain.

The first doctor he saw could not explain the symptoms, but the second doctor suspected multiple sclerosis, or MS. An MRI quickly ruled out MS, and Jones returned to his normal life.

But after several months of headaches, a friend convinced him to go to the emergency room. A doctor prescribed muscle relaxants and released him, but just 72 hours later Jones found himself back in the hospital; This time he had difficulty moving the right side of his body.

It was at Beth Israel Lahey that Jones received the news that would change his life forever. He was diagnosed Neuromyelitis Opticaor NMO – a rare, autoimmune disorder that primarily affects the optic nerves and spinal cord.

Sometimes referred to as the “cousin of MS,” NMO typically causes severe, rapid, and devastating attacks on the optic nerves and spinal cord and can lead to permanent vision loss or paralysis.

Things went south quickly for Jones. A flare-up caused him to suffer partial paralysis, and doctors rushed him to the hospital’s intensive care unit.

But with limited ability to walk and care for herself, Jones needed more specialized care and was eventually admitted to New England Encompass Rehabilitation Hospital, a hospital that specializes in inpatient rehabilitation.

It was a particularly devastating blow for Jones, who was an avid runner before her diagnosis.

“In 2019, I ran 35 five-Ks in 35 weeks… I couldn’t walk or go to the bathroom. This was something I never thought would happen to me,” Jones said.

Jones, who has no family in Boston, said the doctors and therapists at Encompass put him on the path to recovery from day one.

“They really became family to me. They were very patient in my family’s absence,” Jones said.

Medical director of New England Encompass Rehabilitation Hospital, Dr. Daniel Lyons was a member of this team.

“There was a situation where Marion’s autoimmune disease affected her cervical spinal cord injury. So she actually had…a spinal cord injury. She had lost strength in her arms and legs. There was sensory loss. She also had a lot of pain and muscle tension from the spinal cord injury,” Lyons said.

Jones’ rehabilitation program was grueling; three hours of intensive therapy every day. But Lyons said the work has paid off. “He made incredible progress from the moment he arrived at the rehab hospital – he was using a wheelchair, unable to stand. [In] “In a relatively short time, he progressed walking on parallel bars to walker level and was able to walk short distances with a walker when he left the inpatient rehabilitation hospital.”

Jones’ outpatient therapy continued, and during one of these sessions, his therapist forced him to run on a treadmill. It was tough for Jones and he said he could only run for about 30 seconds, but it reawakened his desire to run again.

“After that session, I came home, went out on the bike path and said, ‘I’m going to see if I can run for a minute,’” Jones said. “As the weeks progressed, a minute became a half mile, and that half mile became a mile. That’s where I started, really getting into the mindset of running again.”

He finally regained his form. Jones says she never set out to run a marathon, but that’s where her path took her. Jones has run six marathons since his diagnosis.

He will participate in the Boston Marathon on Monday. When he crosses the finish line, he will receive the Abbott World Marathon Seniors Six-Star Finisher Medal, which is given only to runners who have completed all six of the world’s most prestigious races.

Ahead of the race, Jones was raising money for Beth Israel Lahey, the hospital that diagnosed and treated his NMO. Jones calls moving back to Boston a “full circle moment” for him.

“Doctors didn’t know if I would walk again,” he said. “To be able to run in Boston knowing what my body has been through and overcome, it’s going to 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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