Brandy de Blois knows there are people out there who also suffer from the same feeling she has of being in constant motion — the easiest way to describe it, she says, is to imagine you're drunk and you're walking in a funhouse at an amusement park — and she would like them to know there is support available.
Brandy lives with the neurological disorder Mal de Débarquement Syndrome (MdDS) and hopes by sharing her story she will reach others who experience the symptoms but don't know where to turn or have been misdiagnosed. She wants to shed some light on what it's like to live with such a unique and misunderstood condition. June is MdDS Awareness Month.
"What if someone has these symptoms and they are having trouble getting a diagnosis because they can't explain their symptoms properly? I know at first I was describing it to people and saying I felt dizzy. But that's not accurate. I don't feel dizzy. It's a rocking feeling. A constant feeling that I'm in motion. A feeling of being drunk that never goes away," Brandy tells BayToday.
The National Institutes of Health (NIH) in the U.S. classifies MdDS as a "rare, disabling disease," and the syndrome occurs only in a small fraction of those who experience standard Mal de Débarquement.
"Most people get this after being on a cruise or a boat. Sometimes it only lasts a short period of time. That is called Mal de Débarquement. If it lasts a much longer time and doesn't go away, then it becomes Mal de Débarquement Syndrome," Brandy clarifies.
MdDS predominantly occurs in adult women between the ages of 30 and 65 and is characterized by a persistent perception of self-motion — such as bobbing, swaying, and rocking — and is accompanied by symptoms such as heightened visual sensitivity, fatigue, and anxiety. Additional symptoms include impaired cognition, lack of mental clarity, blurry vision, depression, and lethargy.
Brandy says reaching and helping even one person who reads her story and thinks it sounds familiar to their own situation — or to symptoms someone they know has described to them — would be a success as misdiagnosis is common in the initial stages of MdDS.
"I just want to help someone, because I've been through so much with so many doctors and specialists and it's a very emotionally and mentally exhausting task to try to get your physician to realize how life-altering this is," she says. "When you don't feel heard by them, it makes you feel isolated."
Brandy has also connected with the MdDS community online. She says she is grateful to have people she can count on who understand the stress living with MdDS causes through the Facebook page Mal de Debarquement Syndrome – MdDS Friends.
Brandy has served as an administrator for the page for a few years and has seen the community grow to the point it now includes over 5,000 members.
"Most of the people have been previously misdiagnosed and finally have the proper diagnosis and one of the first things people say is, 'Oh, my gosh! I was told this was all in my head for so long!' But, then they find that one doctor who knows what Mal de Débarquement Syndrome is and they feel like a weight has been lifted," Brandy says.
Other than a five-month remission of her symptoms, Brandy has been living with MdDS since Christmas Eve of 2012. "That's when it stuck. I'd felt it a bit before that, but it would go away after a few hours," she shares.
Anxiety was the diagnosis at the outset but Brandy had experienced anxiety in the past and knew these new sensations were different. For a long time, Brandy says she felt alone as she advocated for answers to the mysterious turn in her health. The symptoms were present around the clock and only subsided when driving.
"I didn't get a diagnosis until over a year later by a neurologist at Mount Sinai in New York City. I had been to several doctors up until that point and nobody had a clue as to what it was. And when they couldn't figure it out, they chalked it up to anxiety."
Most cases of MdDS are the result of going on a cruise or long boat ride or long-haul plane travel and retaining the feeling of being in constant motion. Brandy says the medical team told her there are exceptions and some people develop it spontaneously.
"For me, the doctor wasn't sure if it was spontaneous or caused by playing a car racing video game for long periods of time where the majority of my range of sight was filled by the game. It tricked my brain into thinking I was actually doing that activity and my brain never came back from the 'motion' of it. It's something I won't ever know for sure, but I can honestly say that I wish I could go back and change all my activities for that day."
Brandy says the only time she feels better is when she's driving. "Driving is blissful. I don't feel symptoms when I drive except when I get to a stoplight. Then I feel the rocking and bobbing again until I can start driving again."
A happily married stay-at-home mom, Brandy says living with MdDS means even the simplest household tasks can be difficult. "Vacuuming, preparing meals, washing dishes all make me extra wobbly. As if someone turned me around and around while I had my eyes closed, and then asked me to walk a straight line. I get very unsteady," she observes.
One skill Brandy has acquired is an ability "to look normal," and not reveal she is suffering inside. She has a disabled parking permit and has "gotten many looks from people over the years because they see me get out of the car and I don't have a wheelchair or walker or cane. I look totally fine."
As with many illnesses, stress can exacerbate the symptoms and some with MdDS need assistance walking.
"I've learned to adapt by holding onto things. Or I will nudge something with my shoulder or hip as I walk by it and it helps tell my brain important things, like that I'm not falling, the room isn't floating or bobbing, and neither am I," Brandy says.
She adds, "It seems silly when I say these things out loud. It's impossible to fully explain what it's like to anyone who doesn't have it."
Brandy says, with a lot of practice, and on good days, she can make do without the mobility aids but on particularly bad days, she needs to use her trekking poles, even in the house.
"It affects how I walk, even if it's not entirely visible to someone looking at me. Trust me. I can feel it. I feel like I could fall at any moment. My legs are working hard to steady me," Brandy explains. "It causes strain on my back and my feet and my neck because my brain is constantly telling me the ground is moving or that I'm not on stable ground. My eyes are locked onto a target ahead of me to help me get from point A to point B. But again, it is not a dizzy feeling. Not like traditional vertigo."
"It's a 24-hour, seven days a week thing. It doesn't go away if I sit down. I have it while walking, standing still, sitting down or lying down," Brandy says. "The floors are uneven, the mirrors are distorted. You just feel incredibly unsteady. That's how it feels. Like you've gotten off a very rocky boat ride and cannot find your land legs."
Brandy recalls those five months of remission fondly.
"It felt weird at first. I wasn't used to feeling still. Like a normal person. It took time to realize it was how I used to feel my whole life until I got MdDS.
"I walked for hours and hours. I'd get a dog from the Humane Society and walk it. Then go back for another and another. I was constantly walking and experiencing again what normal life was like. I could watch an action movie or TV show with an unsteady camera and be able to get up and walk normally. When not in remission, if I were to do that, I'd have heightened symptoms for hours. I could sit still. I could stand still. Lying down felt good and didn't feel like I was floating on a raft in a waving ocean.
"It was magical."
Alas, the symptoms returned.
"I remember the exact moment. I told myself it wasn't happening. Then I told myself it would go away. But it didn't. That was two years ago. But, the fact I got those five months of remission is something I won't forget and I feel blessed to have had them."
She adds, "Some people go into remission for a few days, months or the lucky ones do for years, but it always comes back. Sometimes worse than it was before remission. And some never go into remission at all."
"The Facebook page has been a lifeline for me. It helped connect me with people who fully and completely understand what this syndrome is like. We can share with each other and try to help each other on days when we feel alone and upset."