Utah woman lives with rare balance disorder

CLEARFIELD, Utah — When you see Tara and Mark Garner holding onto each other while shopping in the grocery store, you get the idea that they are so in love.

And they are.

But their grasp is about coping with a condition that sometimes keeps Tara Garner off balance. She has a rare neurological disorder called Mal de Debarquement Syndrome (MdDS).

The disorder causes the balancing mechanism in the brain to be off, resulting in a feeling of constant motion and lack of coordination, difficulty hearing and concentrating, and an inability to see properly under certain lighting conditions.

"I have a lot of ringing in my ears all the time and have lost a lot of hearing," Tara Garner, 47, told the Standard-Examiner (http://bit.ly/W4PPc4).

"I feel like I'm walking on water all the time," she said." I have a lot of insomnia because it's so hard to get to sleep when the bed feels like it's being tossed around in the ocean and you feel like you are going to roll out of the bed."

She said every aspect of her life is affected by her condition.

A certified nurse's assistant at Davis Hospital and Medical Center in Layton, Garner had to cut back on her work hours and frequently calls in sick. And she has to stay away from crowds, including family activities where there's a lot of movement and bright or dim lights.

Garner said she contracted the disorder in late March while flying from San Francisco to Los Angeles. She describes her condition as much like the feeling of being in an airplane, with the same bobbing and vibrating that passengers feel.

Garner said she has learned about others who have contracted the disorder from traveling on cruise ships.

Of the two other women her doctor has treated with this problem, both got over it, she said.

But she said a man her doctor treated who had contracted the disorder in an airplane never got better.

"It seems that if you get it from an airplane, it's harder to get over," Garner said.

According to information posted by the Hearing Research Association, the disorder is most common among women between the ages of 40 and 50 and is most often contracted on cruises lasting at least seven days.

The research cited by the association states that most people who get MdDS recover within a month, but a limited few have suffered for 10 years or more.

There is no research that pinpoints exactly why some people's brains get the condition, but it could be related to hormones, the research states.

Garner said her condition is rare. Only about 400 people are members of a worldwide support group she is in.

She looks back to the moment her life changed. She felt ill immediately after she got off the plane but thought it would correct itself.

But as time went on, she only felt worse.

"As soon as we landed, I knew I felt a little different, but I couldn't put a finger on it," she said.

"As the days went on, I kept getting more and more symptoms. They just kept coming, one by one by one."

Garner wanted her story to be told because she wants people to understand her suffering and she wants to help anyone who has the condition who hasn't been properly diagnosed.

She also wants to encourage research into finding a cure and believes her case offers its share of lessons for those who study the disorder.

Garner said some of her symptoms are easier to live with when she takes medication.

But she also has been told that using medication may lessen the chances of her brain correcting itself.

"They say if it doesn't go away in a year, it probably never will," she said, adding that if the condition does go into remission, the chances of recurrence if she ever flies again are high.

For now, she said, her only real hope is to wait and see.

Her husband's support has been invaluable. Garner said Mark has had to dramatically change his own schedule to take care of her and to provide her with transportation.

"I love her and I want to make things as good as I can for her," Mark Garner said of his wife.

___

Information from: Standard-Examiner, http://www.standard.net