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Multiple sclerosis took newlyweds by surprise

Susie and Keith Ulrey sit with their cats Margot, left, and the Baumer, who are named after characters in the movie The Royal Tenenbaums. She began having symptoms of multiple sclerosis just before the couple’s wedding in 2000.


Susie and Keith Ulrey sit with their cats Margot, left, and the Baumer, who are named after characters in the movie The Royal Tenenbaums. She began having symptoms of multiple sclerosis just before the couple’s wedding in 2000.

As Susie and Keith Ulrey approached their wedding day, looking forward to a lifetime together, a third wheel suddenly embedded itself into their world. Susie began seeing double. "We chalked it up to nerves," says Keith. "She had no other complaints or concerns." They went forward with the ceremony on Aug. 12, 2000. He made his new wife a black eye patch out of construction paper to stick into the frame of her glasses so she could watch TV without holding her hand over one eye. The double vision lasted three months then corrected itself. But that was their first hint of multiple sclerosis, a disease that would change their marriage, but not their love.

Susie Richardson met Keith Ulrey in the '90s when he played in the Brandon-based band Pogoh, which had released a couple of singles and toured nationally. When Pogoh's lead singer quit, Susie joined the band.

"He's been my drummer since I was 18," says Susie, now 33. "And we were friends a good six years before we started dating, so I almost count that as part of our courtship."

Keith, 39, says it was "10 months from dating to marriage."

Today, he's a band promoter, she's a job recruiter, and both work out of their home in Tampa's Seminole Heights neighborhood.

But they recently recalled earlier days, including about a year after the wedding when Susie was gearing up to play a solo show. A longtime player of piano and guitar, she says her hands suddenly forgot how to play.

"I couldn't even hold a pick. Fortunately, that only lasted a few months." Doctors did an MRI on her brain but it came back clear.

"That's really one of the most challenging things about multiple sclerosis," says Doris Lill, associate director of community development for the Mid Florida Chapter of the National MS Society.

"You can't tell someone this is your prognosis, this is what you can expect a year from now, five years from now or 10 years from now. That really doesn't exist for MS the way it does for other diseases."

When Susie was 19 her mother was diagnosed with MS. While research shows that MS isn't hereditary, some do have a genetic predisposition. For Susie, having MS herself "was the last thing on my mind."

After a second opinion and another MRI, the Ulreys had answers. In October 2001, Susie sat in a parking lot, reading the radiologist's report. It said she had MS.

"I was sitting in the car by myself," she recalled. She called her husband, and he met her there.

"Within a year I was using a cane," she said. "Within three years, I was using a walker. And then I started the chemotherapy drug and that was every three months for four years."

Without the chemo drug, she believes the disease would have put her into a wheelchair by now.

Now, after almost 10 years with multiple sclerosis, she exercises nearly every day either with her physical therapist or at home. The constant movement of her muscles, especially her legs, reminds them of their purpose. With MS, the body easily forgets.

But the body isn't the only thing MS can destroy. "MS can really do a lot of damage to a marriage," Susie says, "especially if you have all these plans and expectations."

German neurologist Claudia Pfleger of the Arhus University Hospital in Aalborg, Denmark, published a study last year on the social consequences of MS, including its impact on marriages. In the later stages of the disease — after 12, 15, 20 years — "you can see a difference in terms of MS patients becoming separated from their partners," she said.

The Ulreys acknowledge they've had to make concessions.

Susie had envisioned two kids and a house with a second story, but her doctor recommended the couple not conceive, citing a heightened risk of relapse after childbirth.

"I go through these baby periods every once in a while where I'm like, 'Oh, I'm really sad, I don't have a baby,' " she says. "And he reminds me, 'I didn't marry you to have kids, I married you to be with you.'

"Besides," Susie adds, "I'm pretty disabled. I wouldn't be able to do as much as I want."

Says Keith: "It's affected my lifestyle, yes, but marriage, no."

They plan ahead when they go to a bar or concert, considering the logistics and how long it would take Susie to get through the crowd in her scooter.

But they also have the perks of good seats, good parking and "a solid group of friends to help with anything," says Keith.

Most of all, they have each other.

The couple still play in a band together — a 4-year-old group called Rec Center, which releases its first album in the fall on Keith's label New Granada Records.

As for MS, "It's always been there with us," says Keith, "it's nothing new."

"He's been awesome," Susie says of her husband. "He's rolled with it. We've done what we can to make it work."

Dawn Morgan can be reached at [email protected]

Multiple sclerosis took newlyweds by surprise 08/18/11 [Last modified: Thursday, August 18, 2011 4:30am]
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