Living with Mal de Debarquement Syndrome: Slow progress

Living with Mal de Debarquement Syndrome | Retropulser.comJune is Mal de Debarquement awareness month so I’ll be focusing on my experiences with this rare syndrome during the five weeks. This is my fourth in the series. 

After beginning treatment for my Mal de Debarquement, it’s been a series of sloooooow improvements. Beginning in January, I continued with seeing my functional neurologist once a week for about four months.

Each visit usually consists of several short sessions in front of the optokinetic stimulus. It’s hard for me to guess how long the session goes for, but maybe 30-45 seconds? Then I take a quick break and close my eyes for about that same amount of time. I often will stand up at some point and we’ll check my progress. I simply stare at a spot on the wall, or the thumb on an outstretched arm and we see how much I rock or sway. It usually takes me two or three times to get to the point where I no longer sway, and often Dr Z or Dr Eric do some other minor adjustments or exercises to fine tune stuff and compensate for my hydrops.

Right around the time I started doing the treatments at home, I was able to phase out how I often I went, so for the past two months, I’ve been seeing the functional neurologist every other week.

I suspect that if I shelled out the big bucks and wanted to pay several thousand dollars to do an intensive, I would be making faster progress. But then again, I find the MdDS exercises to be extremely fatiguing, so I’m not sure if my brain would’ve been up for that.

Progress has been slow at times but it has been progress with something that I thought was incurable, so I’ve never been down in the dumps for long. I’m filled with gratefulness that I seem to be coming back into a life that isn’t dictated by constant balance fatigue.