What is MdDS?

Diagram shows a) the bee’s three axes of translational movement, and b) the rotation about them. a) Vertical, up and down, lift (v); longitudinal, forwards and backwards, thrust (l); horizontal, lateral, side to side, sideslip (h). b) Yaw (y), roll (r), pitch (p). The dotted line represents the axis about which the wing can rotate: supination (s), pronation (pr). Image source: Form and Function, Lesley Goodman.

OFF-TOPIC: Know anyone who went on a cruise and feels like they're still on the ship – months later? It's kinda rare but MdDS is a brain malfunction which not only results in cognitive impairment and visual motion sensitivity, it also leaves one with a constant sensation of the ground dropping out from underneath or of a rocking motion, as if on a boat. As a matter of fact, it often occurs after getting off a cruise ship so the condition was named Mal de Débarquement or Disembarkment Syndrome. Many people have “sea legs” after disembarking but the sensation of still being on a rocking boat is transient, usually subsiding within 2 weeks. Some unfortunate people have the phantom motion sensations for months, even years. Less than 10,000 suffer with MdDS and it's usually misdiagnosed.*

Through recent research, scientists are
 finally able to show why bees can fly.
Just because it's rare doesn't mean you can't develop it. My neuro-otologist has a theory that if you carry the gene for migraines, then your brain is hyper alert. The migraine brain is attune to too many things, be it images, light, sound, motion... and while some migraineurs have headaches, some have no pain but "dizziness" instead. Aside from her theory, she gave me a handshake and offered a 'scrip for an antidepressant. Nice.

Here's why that theory matters to you. Let's say you're driving. When you hit the gas, there's pressure under your foot, you feel your back press into the seat and your head pulls back slightly. Your visual flow receptors confirm that you're moving and the landscape whips by. Back off on the gas and there's less pressure underfoot, your head bobs upright and the visual flow slows down. Your normal brain takes all this input, cross-references it and enables you to function spatially. (It's called proprioception, btw.)

Now imagine yourself on a plane, with a migraine brain. At take-off your whole body presses into your seat. You feel vibration from your feet through your whole body. Your visual flow receptors are on but within moments, unless you get motion sick, your brain accepts that you are in a still room, yet moving. The room tilts and turns, and moves forward at 125 MPH. Totally normal. And then you get to where you're going, get off the plane and, if you have that very alert hyper brain, you just may have a new normal. Every room tilts, turns and moves. The floor feels like it goes up and down when you're walking, or maybe it pitches and rolls. It's like walking on a people mover inside a bouncy castle. Bye-bye spatial functioning.

It's a No Wonder that MdDS was once thought to be a balance disorder. Recent research has shown it to be a neurological disorder. It's a shame the brain is on the inside, because when you have an unseeable illness, people think everything's hunky dory. I know no one can see the people mover, so I get it. But it's there, and it's been there since 2003. Some evil bastard turned it off for the most part in '08 but He's fond of randomly flicking the switch so it turns on suddenly. Like when I'm talking to my boss, or when we're meeting with her biggest client — midsentence the floor just drops out from under me. Or when I'm eating. I can't figure out what the deal is, why it feels like I'm about to do a faceplant into my food while my eyes tell me otherwise. All I know is it's motion-sickness-inducing and eating just sucks. Sometimes when I turn my head, it feels like my brain needs to catch up with my eyes, like there's a processing delay. I spent $400 on glasses hoping, wishing, that the problem was with my eyes, but no, it's my brain. My second ENT told me that my peripheral vision is turned up. With a wider field-of-view there is a greater perception of visual flow or vection.

Just before I trialed the Mind Manipulation-O-Matic, MdDS turned my house into a funhouse complete with rotating hallways and tilting walls, just because I bought a new pair of shoes. (Nerves in your feet provide key information about the ground you're on, whether it's a hill, soft gravel, a moving sidewalk perhaps... which your brain interprets to keep you from falling.) With my faulty brain, that may have been the only time you could tell by looking at me that something was wrong. If there weren't walls to grab onto, I probably would've crawled down the hallway. Yet despite the incredibly real feeling of rocking and rolling, generally MdDSers walk straight and look completely normal.

I'm not looking for sympathy. I don't even hope for a cure, really. Quite frankly, I'd be happy simply with some normalcy. If there was just one treatment, something that could bring back some normalcy, so that I could watch an action flick, stir a pot, or wash a dish without feeling the motion inside my head – that I could fly again! – oh, I would be so happy.

The MdDS Balance Disorder Foundation
Aide-toi et Dieu t'aidera, so I volunteer for the MdDS Founda­tion, which has funded clinical studies at UCLA and Ohio University. We're working hard to raise funds to support these and more research studies. (What exactly causes MdDS is unknown, and there is no cure.) At the same time, we're working to raise awareness. As with other rare disorders, sufferers go undiagnosed or misdiagnosed because doctors just aren't aware of all 7,000+ rare diseases. On average, it takes an MdDS patient a staggering 20 visits to a healthcare provider for a proper diagnosis.

So every now and then, expect an off-topic tweet or post from me, because as much as I love my bees, I'd really love to be normal again. I could do without the migraine headaches with pain and the cognitive impairment. I'd like to pinch, zoom and swipe without feeling it in the balloon-full-of-pudding I call my brain. Beekeepers tend to come from all walks of life, and this blog has readers from all over the globe, so who knows? Surely, one of you is a brain surgeon.

Thanks for taking the time to read all the way to this point. Now let's get back to the bees, shall we?

*Probably less than 5,000 but figured I'd be safe and say 10K given how often it's misdiagnosed.