Off-Topic: a short post pertaining to my dain bramage

Yesterday I had lunch with a colleague from California. Every time we meet, we chat about the crazy weather and horrible traffic in Denver and that it's so much better even in LA, where she's from. Nancy doesn't really need to say anything to convince me that LA's better than Denver, except for the earthquakes. Strangely, it's not that they have them that scares me. It's the earthquake-proofing.

The building that she works in is on rollers, and she says that during an earthquake you can feel the building moving back and forth and it can make you a little seasick. She animated the feeling by holding her hands out as if to balance herself, and swaying back and forth. A normal person would probably just think, "That must be weird." But me, I was speechless and felt frozen by fear. A person with MdDS could feel that motion for weeks or years afterward.

I am (dare I say it?)… in remission. Thing is, when you have an incurable illness if you somehow achieve remission, it's not really all that great. You're always waiting for the other shoe to drop. The fear of that constant swaying, of the floor dropping out from under me, the people-mover in a bouncy castle feeling… I don't want that back and if living in Cali can make that happen… sorry, hun, not doin' it. It's taken me 7 years to feel normal, to get some of my brain power back. No matter how blizzardy or Arcticly-cold Winter is here, how brutally hot and dry Summer is, how blink-of-an-eye both Spring and Fall are… I can't suffer that loss again. I can't. It's hugely disappointing that our neighbors are sociopaths, because you can leave bees completely alone from October through February and extended vacay, that I can do.

June is MdDS Awareness Month. The past two years, I tweeted 30 MdDS Facts in 30 Days, but I'm kind of over Twitter. Instagram is my thing now but you can't photograph an invisible illness so that's the explanation for this off-topic post, which I realize now is more about its effect than about its existence. But hopefully you picked up on that it's a never-ending, false sense of motion that consumes brain function. If you have any questions about my damaged brain, just ask in the comments section below. Or just read, What is MdDS?

On behalf of the MdDS Foundation and its rare community, thanks for reading and sharing. That's what those buttons below are for (hint hint). — HB

"Just a bit of harmless brain alteration, that's all."

"It's time we tried my latest invention, the Mind Manipulation-omatic... I haven't tested it yet, but it should be perfectly safe. Just a bit of harmless brain alteration, that's all." — Wallace and Gromit's "The Curse of the Were-Rabbit"

I've been working on this post since September! We had a very important trip early in the month, the charity walk late in the month, and in between I was working on a huge presentation for work. I simply had no time to tell you about the Backyard bees. September was a month to focus on me and getting well, but of course I could not stop thinking about bees. Once you have bees on the brain, that's it. The bees buzz around in your head, and you see them everywhere. Found a seed in your seedless clementine? Yay, bees, good job! So even while I was focused on my upcoming brain alteration, I sought out bees and honey (and Hello Kitty, too). There's more to this story, but here's what we saw on our first trip away from the Backyard.

LA Loves Bees

The first picture is of a blind honey tasting that took place in Los Angeles. It was hosted by HoneyLove.org which is leading the way toward legalizing urban beekeeping in LA. Even though we would miss the event by one day, I sent them a small jar of 2010 honey. It was something fun to do, to distract me from the fact that I even need brain alteration. I didn't think anything would come of it, so it was with great surprise that during one of the rare moments I had Internet connection (who'da thunk UCLA wouldn't have wifi everywhere?) that I saw a Facebook update saying that The Backyard Bee Hive had ribboned! And not only ribboned, won First Place! We had a great time in LA, but I think that was the best moment of the entire trip. HoneyLove sent me a nifty 1st place pin but you'll just have to wait for my next post to see it.

I Should be Committed. Care to Join Me?

"They're coming to take me away haha."--Napoleon XIV

Had I any idea what is involved in organizing a charity walk from scratch, I'd never have opened my mouth. I've had no time for bees at all, because I found myself elected to the Walkathon Committee. Between work, major projects in the Backyard (a second hive AND new bees are on the way, so stay tuned...) and inventing the wheel, I am ready to be committed ho ho, hee hee, ha ha.

But lookit! All the dain bramage I've gotten from building this blog paid off, and I've set up both a web page for people to sign-up for the walk and a page strictly for fundraising. The walk will benefit the MdDS Foundation, which is working to find a cure for me. In case you don't know, my brain is literally damaged. It happened on a plane flight and now my brain can't tell if I'm moving or the world around me is moving. You'd never know it by looking at me - it's an invisible illness- but I feel like a bobble head doll. It's like having sea legs for weeks and weeks, only for me I have plane brain and it's been 4 years. But that's enough about me.

Through the magic of Google, I found the MdDS Foundation and MdDSers around the world: Great Britain, Sweden, Australia, Canada and more countries than I can list. I even found a couple of MdDSers in the Denver area. So that is how three brain-damaged women came to put together an international charity walk and virtual walk. We hope to work some magic of our own, since there is no cure for MdDS. Yet.

The foundation's slogan is "We Rock!... but We Don't Want To." A groaner, I know. But it gave us the nickname for our walk, the Rock'n Stroll. It's set for October 16 and there is a two-for-one matching donation program in place. For every dollar we raise, an anonymous donor will match it with two more! So we invite you to join us on that day whether you live in Italy, Germany, Turkey or Greece... If you live in the US or Europe, we've even got a cool graphic tee for you. Gratis!

AND... I'm negotiating schwag for Team Challengers. Team Spokane is leading the US, ahead of Team New England. Team UK is bringing up the rear. How about your neck of the woods? Come on... take the challenge.

The big orange button will take you to the sign-up page with all the details.

THANK YOU

P.S.: the bold countries are where most of my regular blog readers live. The map below shows where we have cyberwalkers. Pretty neat, don't you think?

View International Walk for MdDS in a larger map

MdDS Symptom Scale

How do you measure cognitive impairment? When you're confused, how do you answer, "How confused do you feel?" If you're struggling to remember a word (or embarrassingly a person's name when you're speaking to them), how can you possibly assign a number to that? You can't. The measurable symptom, sensation of motion, has been put on a scale, though. I put this information is here because I can never remember if I'm at a 2 or a 3. For the full list of symptoms and scale that goes up to 10, visit mddsfoundation.org

MdDS Symptom Severity Scale

0  No sensation of abnormal motion.

1-2  Sensation of rocking/bobbing/swaying is almost imperceptible. Most often noticed while walking but may also be recognized while sitting, standing or lying down. Can usually perform routine daily functions without the need for rest periods.

3-4  Rocking/bobbing/swaying sensation is almost constant but can function fairly well with occasional rest periods. The sensation of rocking/bobbing/swaying may include the perception of movement along either a horizontal or vertical axis. The floor seems to move when walking (as if walking on a suspension bridge, water bed, or trampoline). Altered balance. Cannot remain standing in a fixed position with eyes closed.

This information was excerpted from http://www.mddsfoundation.org/symptoms-scale/

MdDS Defined

Mal de Debarquement Syndrome is an imbalance or rocking/swaying sensation often both "felt" and "seen" by the sufferer that occurs after exposure to motion (most commonly after a sea cruise or a flight).*

After alighting or "debarking" (debarquement) the traveller continues to feel "all at sea", unable to get their land legs back. Although most travellers can identify with this feeling and do actually experience it temporarily after disembarking, in the case of MdDS sufferers it can persist for many weeks, months, even years afterwards.

The symptoms are with you constantly, they never leave, nor can they be alleviated by any anti-motion sickness drugs (eg Stemetil, Serc etc)

"Like trying to constantly walk on a mattress or trampoline" is a good description of a main symptom, which is usually most pronounced when the patient is sitting still; in fact, the sensations are usually minimized by actual motion, for example driving. — Excerpted from http://www.mdds.org.uk; see also vestibular.org

*My MdDS is from a flight in 2003. I feel phantom motion but I don't see it. If I lean down (like to pet the cats), I'll feel like I'm falling forward but I can see that I'm not. My brain does not know how to process the conflicting signals and it's very disorienting. I don't feel phantom motion 24/7 anymore but, even now in 2013, my brain has not learned how to handle signal mismatches, and I keep shooting crooked pictures and wobbly videos.