Imagine that you go on a fun cruise with your sister, and it becomes a cruise that transforms both of your lives. Your sister meets her future husband, and they live happily ever after. Sounds wonderful, right?
But you are Kimberly Johnson, and your "ever after" is horrifying. "When I got off is when my world was turned upside down." Johnson, 26, said she experienced sensations onboard the cruise liner that her sister and her mother did not.
"When we got off the cruise, I told them immediately that something was wrong," she said. "And once I got off is when I realized that I felt like I was still onboard. It didn't go away."
Johnson is not the only one who suffers from this syndrome -- a syndrome so mysterious most doctors aren't even able to recognize it.
Deb Russo, a school technology specialist and mother of two in Longmeadow, Mass., also came home from a trip that changed her life. Russo and her husband took a long-awaited dream vacation to Aruba. On the day they left for Aruba, flight problems caused them to take off from the same airport four times. Russo said she feels as if her world has been rocking ever since.
That was almost three years ago. Now she explains the persistent feeling is like trying to stand up in a rowboat.
"It felt that the street was coming up to hit me in the face," Russo said. "Everything was rocking, and it … basically has not stopped since. It's nothing that anybody can imagine."
Johnson and Russo have been diagnosed with a rare condition that goes by the French name of mal de debarquement (MdDs), or disembarkment syndrome. MdDS is characterized by that feeling of constant rocking or feeling off-balance after prolonged exposure to motion, most typically but not exclusively, on a boat.
For reasons unknown to doctors, MdDS mainly afflicts women. Dr. Richard Lewis, at Harvard and Massachusetts Eye and Ear Infirmary in Boston, is a leading researcher on MdDS. He says it occurs when a patient's brain adapts itself to motion, such as the rocking of a boat on a cruise.
But then when a patient returns to solid ground, the brain does not re-adapt. "They seem to kind of get stuck or locked into the state where they've adapted to the motion," he said. "In the worst cases, it can go on for years and years."
Johnson said she has felt the motion for four years. Before their diagnoses, both Johnson and Russo went from one doctor to the next, only to find that the medical world seemed as confounded as they were. Their sense of constant motion is not vertigo, and it's not simple dizziness. The doctors seemed confused, and Johnson was told she could have a brain tumor. Russo's doctor told her she had high blood pressure, and sent her home.
But high blood pressure was not causing the sense of motion Russo describes as "violent to the point where you can't walk, you're going down steps, feels like the steps are moving."
According to Russo, at its worst it feels like "you're just getting thrown around. You feel like you're sitting out in a buoy in Boston Harbor, in the middle of winter, and there's a snowstorm coming through. We're sitting in a nor'easter."
ABC's John Quinones met Kimberly Johnson and Deb Russo at Massachusetts Eye and Ear Infirmary, where the women could try experimental devices in hope of finding relief. Drs. Conrad Wall and Lars Oddsson are developing a biofeedback vest and socks to help the elderly and others prone to falling.
The devices vibrate to signal users to correct their balance when they tilt off-course. They are still one-of-a-kind experiments, but they do seem to help both Johnson and Russo feel increasingly stable when using the vest and socks.
Johnson was elated by her progress with the biofeedback vest. "That's pretty amazing. I definitely felt it. It was a big improvement."
There is another mysterious element to this story, an ironic fact about this syndrome of constant movement. Motion -- like driving -- actually gives relief to those that have the syndrome.
"When I drive, you can't feel it. Any motion, it subsides," said Johnson.
According to Russo, "My younger son and I had a great conversation in the car, because in the car I'm a normal person. I don't have symptoms in the car. And he just said, "That was so nice to have a conversation with you like that."
Lewis explains why: "In a way that makes sense because they're re-entering the situation that they're adapted to."
It seems that until the experimental devices Johnson and Russo tried become available to others living with MdDS, relief can be found by doing the very same thing that brought on the syndrome to begin with -- staying in motion.
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