My name is Robert Lupo, and I live in Decatur, Georgia. I am a 36 year old male who has been experiencing Mal de Debarquement for a little over two years. I left a concert on January 1st 2013 and have been experiencing this syndrome ever since.
Throughout the first couple months of experiencing it I was thinking it would probably just go away on its own but soon realized it would not. My general practitioner recommended I see a ENT specialist; they gave me some tests and ruled out all of the stuff they could treat. Then they recommended I see a neurologist.
I began seeing a neurologist in March 2013 and got some MRIs to rule out any major issues. My neurologist did not really know what I had and had never seen anything like it before. I believe it was in between my first and second visit that I started doing a good bit of research on the Internet and came across MdDS. It sounded like exactly what I had, the symptoms and the disappearance of the symptoms when driving or riding in a car. I went back to my doctor with this information and he agreed with my self-diagnosis. I am the first person he has ever treated with this disease. He recommended I see a physiotherapist who specializes in things like this. I went to 12 sessions throughout the summer and fall of 2013. I saw very moderate improvements but nothing substantial. I admittedly could have been better about doing my “exercises” at home.
I have worked in the restaurant industry for about 20 years and have been a chef/cook for about 15 years. This industry is known for its long hours, stressful conditions and long periods of standing; these are all severe challenges for me as a sufferer of MdDS. I am currently not working full-time and have not done so since August. I am having a hard time plotting/figuring out/processing what my next career move should be partly due to the challenges MdDS presents. Because of a job change that went wrong, I currently do not have health insurance, but I am hoping to be covered with Obamacare within the next month. I have not seen my Neurologist since the beginning of the summer 2014.
Like most people’s experiences I read about, some days are better than others. Stress, standing for long periods and looking down continuously seem to aggravate my symptoms. Driving, watching TV and being on the computer* all seem to alleviate symptoms. I try not to focus on the negative, stay positive and exercise frequently.
Thank you for this site and all the information I have gotten from it. I am a member of the Yahoo Support Group, but I would like to connect with other sufferers in general and specifically the Atlanta area if possible. I have never met anyone else in person that has MdDS so that is something I would love to do. It is hard to explain to people what MdDS is and how it affects every aspect of your life… thanks for listening.
Concert, January 2013
*EDITOR’S NOTE: being on the computer is an aggravator for many with MdDS. To see a list of commonly reported symptoms and what they may be associated with, visit the Symptoms page of this website.