Lonnie Martin stepped off a cruise ship last October, after a seven-day voyage to the Eastern Caribbean.
She returned to her Grand Rapids, Michigan, home with much more than memories and souvenirs.
The feeling of being on the high seas never left her. She felt constantly seasick, on land.
“I’ve been on eight or nine cruises,” said Martin, 48. “The only difference I noticed with this cruise was I was a little bit tired. I didn’t feel weird or anything until we debarked. Within hours, I started feeling strange. It was almost like a pulling sensation. It’s hard to explain. My body felt like I was being pulled.”
Martin had no idea what could be wrong. Perhaps, she thought, celebrating her dad’s 70th birthday during the voyage with other family members had tired her.
“I got off the boat on a Saturday morning and got home late that night,” Martin said. “By the next day, I couldn’t stand up properly. I was leaning to the left and I felt very disoriented.”
She trusted the sensation would pass.
On Monday, the symptoms continued, so she visited her doctor, who prescribed medication to treat vertigo. It didn’t help.
By Wednesday, she landed in the Spectrum Health Butterworth Hospital emergency department.
“I had gotten to the point where I couldn’t walk without hanging onto something. I would rock back and forth, side to side, my body would just move on its own. I was really sensitive to light and I had to wear sunglasses all the time.”
Doctors initially feared Martin had suffered a stroke and ordered an MRI and CT scan.
“They were asking me questions in the hospital,” she said. “’Who is the president? What day is it? What year is it?’ I had no recollection. I thought the president was Obama. I don’t remember what day and year I said. I was just so disoriented.”
The scans came back normal. Next, a neurologist assessed Martin.
“They asked me to stand up and I couldn’t stand up,” she said. “I couldn’t walk a straight line. They said, ‘Stand up and close your eyes.’ I closed my eyes and I immediately fell over. I had no balance. They caught me.”
Knowing Martin’s recent history of cruise travel, the neurologist diagnosed Martin with Mal de Debarquement syndrome.
“I was like, ‘What on earth is that?’” she said. “From what I understand, it’s a neurological condition that when you’re on a boat, your brain adapts to that motion of going back and forth. When I got off the ship, my brain never switched back. My brain still thinks it’s on a cruise ship.”
While that may sound like a happy place, a brain believing it’s still on a cruise ship can be a shipwreck for the body.
“It was hard to hear, but there’s no cure,” Martin said. “There’s nothing they can do to help.”
She tried medication and attended physical therapy sessions at the Spectrum Health Integrated Care Campus at East Beltline.
“The PT has been helpful, but it took a really long time,” she said. “They gave me a lot of good pointers.”
In January, Martin went to the Spectrum Health Balance Center, also at the East Beltline campus.
Readapting to land life
She underwent roll readaptation treatment, also known as the Dai technique, with Michael Hojnacki, AuD, a specialist in audiology with the Balance Center.
“They put on a projector that projects lines and you sit in a chair that rotates,” Martin said. “You have to try to follow the lines. It’s supposed to make you feel more balanced. At first, it made me throw up, but it helped me tremendously.”
Dr. Hojnacki said about 73% of cruisers still feel like they’re on the ocean for about 24 hours after leaving the ship. It’s rare for symptoms to continue long-term like Martin’s have. It’s believed about 150,000 people in the United States suffer from Mal de Debarquement.
“I have seen other patients with Mal de Debarquement, but I have never used the roll readaptation treatment in the past,” Dr. Hojnacki said. “The sole recommendation for patients with this condition in the past was to let time run its course as it’s uncommon for symptoms to persist greater than 12 months.”
Although Martin improved after treatments, she had traditions to follow—the annual cruise she takes for her Feb. 23 birthday. She journeyed to the Bahamas on a seven-day adventure with her boyfriend, Stew, perhaps secretly hoping that a cruise would reverse her symptoms forever.
“On the cruise ship, I felt totally normal—more normal than I’ve felt since all this started,” Martin said. But as soon as I got off the boat, it came back with a vengeance. Worse than ever. I went back to the Balance Center as soon as I got back. They did a really intense therapy, five days in a row. I don’t think it’s a good idea to go on any more cruises, unfortunately. I will definitely miss it.”
By mid-March, with the help of Balance Center therapy, Martin stood on her own two feet.
“It was amazing what that did for me and it was a huge difference from where I began,” she said. “I still lean to the left, but I’m so much better than I was. I think I’m just learning to live my life the way I am now. I still wobble or sway when I’m standing still. If I’m in motion, I’m OK. If I’m standing still, that’s when it hits me.”
Martin has given up cruise ship berths, but even her bed at home can leave her feeling seasick.
“I feel like I might fall out of bed,” she said.
While she won’t be boarding a cruise ship any time soon, she did pilot a small boat in early June to help Stew set buoys at Scalley Lake Campground in Belding. He owns it; she’s worked there for nine years.
“I wasn’t thinking anything of it when I was driving the boat and Stew was putting lines out and dropping buoys in the swim area. We were out there about 20 minutes. As soon as we got back to the dock, I felt it. They say walking helps, so I try to walk a lot.”
Maureen Gaynor, Martin’s Balance Center physical therapist, said Mal de Debarquement is difficult to treat.
“Historically, it has been a challenging condition for therapists to treat as there wasn’t great research on treatment options or the best treatment approaches,” Gaynor said. “With the advent of the new Dai technique, we now have an excellent treatment option to offer patients at the Balance Center. I have only seen two other patients with Mal de Debarquement and their progress was slow and minimal. Unfortunately, Lonnie was attending therapy when our clinic had to close due to the COVID-19 outbreak and restrictions.”
Instead of seeing her in person, Gaynor checked in by phone during the clinic’s closure.
“She reported feeling markedly better and felt comfortable being done with therapy because her symptoms had dramatically reduced,” Gaynor said.