My personal journey with Mal de Debarquement Syndrome (MdDS or disembarkment syndrome) began over eight years
ago, even though it is supposed to be a “self-limiting” disease. I have been part of the MdDS Balance Disorder Foundation to help get recognition for this rare and often misdiagnosed neurological syndrome.
The hallmark symptoms include a feeling of rocking, swaying, bobbing, or bouncing after a passive travel experience that seems to disappear when a person returns to motion such as during a ride in the car. There are a host of other associated symptoms such as brain fog, fatigue, visual disturbances, headaches, insomnia, and loss of balance.
Despite that fact that Charles Darwin’s father writes about these feelings in the late 1700′s after boat and stage coach travel, there has been little research. There is no know cause and no known cure. Currently, there are a total of two researchers who are studying MdDS. There work is, in part, supported by direct donations to the MdDS Balance Disorder Foundation.
Despite trying many medications and therapies, over the last eight years, my MdDS remains much as it was in the beginning; the only time I do not feel the motion is when I am in the car or asleep. I am barely able to work part-time and some days I cannot take care of myself since the rocking motion is so intense, I cannot stand up long enough to make a meal or take a shower. Small enclosed places and/or large noisy ones are extremely difficult.
In order for the medical community to acknowledge Mal de Debarquement Syndrome, there needs to be education in their training; medical school, nursing school, PT and OT training, etc. A well funded research and awareness initiative in every medical school around the world would be a great start. Until medical professionals are aware of, and understand the detrimental impact MdDS has on one’s life, there can be no treatment or cure.
The National Institutes of Health (NIH) acknowledges MdDS but does not understand the full negative impact and longevity of the disorder. We are aware, the Navy and NASA deal with MdDS but in a very private manner. If the government were to acknowledge the number of cases from these two entities, MdDS would no longer be rare. We have applied to the cruise lines for grant monies to research MdDS which would obviously, be to their benefit.
Currently, there are only two small research studies being done on MdDS, one at Ohio University and one at UCLA. Information about both are available on the MdDS Foundation website. The Foundation maintains ongoing surveys which collect information about those living with MdDS. The results are often published in the Foundation newsletter.
Although it is difficult to maintain hope, I tend to consider that three years ago there was no ongoing research into MdDS and there were only a few awareness initiatives. A few years ago, my husband and I, along with another woman who lives with MdDS appeared on Medical Mysteries with John Quinones - it was the first time MdDS or Disembarkment Syndrome had been featured on a national level.
Many more cases of MdDS were identified after that coverage, and the Discovery Channel did a segment called “The Woman Who Could Not Stop Rocking” about another person with MdDS.
MdDS Balance Disorder Foundation