As with most life-changing events, Julie Anding can recall one particular anniversary with pinpoint accuracy.
“December 27, 2017,” exclaimed Anding, without hesitation. “I was in Utah for Christmas and my mom and I were going to grab some lunch.”
Unlike memories of other landmark events — a marriage proposal, or finding out you were admitted to your dream school or landed that once-in-a-lifetime job — this is one date Anding would much rather forget.
“We took a one-floor elevator ride in the lodge and immediately after I stepped out of the elevator, I turned and looked at her and said, ‘I feel really weird, like I’m on a boat or something,’” Anding recalled recently. “That was my onset.”
She was spot-on in identifying the symptoms and also the very complex name for what was happening to her. It’s called mal de debarquement, a French word that means, literally, “illness of disembarkment,” a neurological condition that typically takes place following a cruise, plane trip or other event that includes sustained motion. While many feel similar effects for a short period of time, Anding’s lasted much longer — in fact, to this very day.
“I stepped off of the elevator that day and immediately felt like I was on a boat, that feeling that you get for a few days following a cruise,” Anding explained. “That slight but constant rocking or swaying sensation. As soon as I went back to work after the Christmas break, my symptoms went from about a 3-5 on a scale of 1-10 to a level 8-10 consistently. The rocking and swaying was constant. I started to lose my balance, fell a few times, had intense fatigue, confusion, lack of concentration and even trouble speaking as I struggled to find my words. The rocking would go away when I was driving, practicing yoga or running. As it turns out, that is a distinguishing trait to MdDS — when in motion the rocking stops.”
The condition continued to progress so she contacted a neurologist. “I saw him about a week later and felt like I had been completely dismissed,” Anding recalled. “I sat in my car and cried after that appointment. My boss at the time could see the changes and symptoms, so she just kept researching online.”
Anding and that persistent boss — Celeste Jardine-Haug, with the City of Newport Beach — happened upon what is known as mal de debarquement, or MdDS for short, and even located a doctor in Palm Desert who specializes in its treatment.
“I was lucky,” said Anding. “A lot of MdDS patients go through 10 or more doctors before they have any answers or even a diagnosis. Dr. B. Maya Kato made a preliminary diagnosis pending an MRI brain scan and some other tests to confirm and rule out other things. I was officially diagnosed on Feb. 14, 2018.”
Another potentially ominous landmark that many think of from an entirely different perspective.
Receiving a diagnosis and understanding the condition can be two significantly different things.
“It’s hard to explain,” Anding said. “It is complex and so little information is available, even to the doctors, since it is hard to see into those tiny spaces in the brain. It is neurological in nature and affects the vestibular system. All my other ‘connections’ are working but the neuro pathways to the vestibular system are off in their own little world.”
Simply put, the the vestibular system contributes to a human being’s sense of balance and spatial orientation. While there is no known cure for the syndrome, it will often inexplicably go into remission with symptoms regressing to almost undetectable levels, “one to three,” Anding said. “My onset was spontaneous, which means it has a lower chance of going into remission.”
In January 2019, Anding’s case was diagnosed as “chronic,” but that label doesn’t mean she is giving up the fight. In fact, quite the contrary.
“There is no cure, as of now,” she said. “Maybe there will be more information in time. My symptoms will increase and decrease in relation to different triggers and also to the environment. They aren’t sure how it is affected by age, but more research is taking place to find those answers.”
Medications are not affective in curing MdDS; they merely mask its symptoms and are highly addictive. Anding takes magnesium, moringa and ingests copious amounts of water as well as specialized physical therapy.
“Diet, exercise, hydration, stress management and avoiding triggers are very important,” she said.
At the time of her illness, Anding was working as a fitness coordinator for the City of Newport Beach’s Recreation and Senior Services Dept.
The daughter of Donna and Hank Anding Jr., Julie has a brother, Hal, who also graduated from San Marino High School and served in the United States Army as a combat medic from 2002-06.
The practice of yoga has proven particularly valuable for Anding, who was a cheerleader and participated in Dance Company and track and field while at San Marino High School, graduating in 1997. She had previously attended Valentine Elementary and Huntington Middle schools. An ultra-familiar face in the community, she also served as a lifeguard and pool manager with the San Marino Recreation Dept. before advancing to recreation coordinator and recreation supervisor. In fact, she served as the SMHS cheer advisor from 1999-2009.
That lifetime dedication to movement has been key, as Anding has found solace and healing in the practice of yoga and as a well-being coach focused on finding quality of life while living with chronic illness.
“When I came down with this, it was apparent that everything had to change,” Anding said. “My health had to become my No. 1 priority, but on a way larger and more serious level than ever before. I thought I had always been making it a priority, but little did I know. I had to leave my government career of 23 years and I am fortunate that I had a realistic backup plan teaching yoga in addiction treatment centers and with the military community so I could still pay my bills and manage my illness. A lot of people with chronic MdDS are destitute or have a miserable quality of life. The hours were too taxing on my body and my quality of life was in the garbage. Almost every decision I make throughout my day — what to eat, how to move, how much I can do, when to rest, when to work, who I talk to — revolves around and will affect the symptoms. It’s hard to say no and not want to just do it all, especially since that is how I’ve operated my entire life — big and busy all the time.”
Those attributes of Julie’s personality that most people admired might have to take a temporary sabbatical while she focuses on her health.
“Learning that I only have so much to give every day and a lot less on some days and having to choose where that energy goes has been a challenge, not only just physically but definitely emotionally as well,” Anding said. “I have heard that mental health experts say say that with a life-changing occurrence like this, there is usually a five-year time frame before a getting to a place of more acceptance. I’m shooting for quicker.”
One thing that hasn’t suffered is Anding’s fabled sense of humor. She mentioned that one of our calls was taking place on National Rare Disease Day.
“Does that mean I have an excuse to celebrate?” Anding quipped.
Given her warrior spirit, one accurate answer is “eventually.”