For the past two weeks I have been doing the treatment for Mal de Debarquement Syndrome at home. On my own.
Shortly after I started doing this cure, my functional neurologist had been gracious to give me the program that he was using, with the hopes that my brothers could do it with me. One of them came in with me in December and learned how to move my head appropriately and we tried it at home, but at that time it was too much stimulus to do without having the supervision of the functional neurologist nearby. Plus, I find that one of the keys to it working well is being able to fully relax and feel stable while the treatment was done, and it was hard for me to relax with my fate in my brothers’ hand. Sorry guys! Plus, I couldn’t find a way to sit comfortably. A chair was to high, on my knees was too low, and the ottoman was too squishy, and thus unstable. So I gave it up for the time being.
For the past 5 months, I’ve been going in weekly to my functional neurologist to do the treatment and it was really helping. But eventually it got to the point where it felt like things weren’t improving, just maintaining. But, then I did some SOT, and that cleared up some background issues (like feeling like my head was constantly being pulled backwards) and I started making more improvement to the point where I thought I was strong enough to start doing it on my own at home.
But several weeks ago, I was getting to the point where each Thursday I’d receive my treatment at the functional neurologist, then feel great and push myself all weekend. By Monday I would feel like I was back where I started. So, after several weeks of this, I was starting to wonder if a) I just needed another intensive or b) was there someway I could re think how I was doing this at home. Obviously, doing at home was the much cheaper of the options, so I decided to give it a shot. I thought about it for a couple of days, and then came up with this somewhat unusual arrangement.
After thinking about it, the key to making this work I decided, was to feel safe. But what could I sit on? Then it came to me, our little kid park bench. An unusual item for sure, but the large tv is in our basement and that’s where the little kid toys are parked and the park bench turned out to be the perfect thing for me. First off, it’s wood, so there’s no instability there. Second, the low back gives me the freedom to lean back as far as I want. Third, the handles are easy to secure, but low down enough that I can easily lean side to side.
I was a little worried about doing it by myself, but I decided that I would probably be able to tell really quickly whether it was working, as I tend to be very sensitive and intuitive with my brain.
So one morning I sat down and gave it a shot. And it worked! I just did it for 5 seconds, or possibly less, as I didn’t want to fry any pathways that I’ve worked so hard to build over the past 5 months. I’ve now been consistently doing it at home and it is continuing to work. I’m getting to the point where I feel comfortable doing it for up to 10 seconds and then I take a break and do a few more seconds. I’m hoping to start adding in a second set later in the day.
I am noticing my stamina building and I’m not falling back into my old MdDS pattern as quickly.
Now after saying all this, Please, please, please, don’t try this at home without talking to your functional neurologist. You really need to know what you are doing and be extremely familiar with how your brain works. Since I’ve been doing functional neurology for so, so long I’m very in tune with how my brain feels and can immediately detect if something doesn’t feel right. If you did this on your own, you could seriously mess things up and create worse problems. So this is not really meant as a how-to-guide by any means (and I’ve certainly left out details about the program, etc.), but this is more of a “here’s what I did, and this therapy can make a difference, so there’s hope for you too!” post.