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East County Friday, Mar. 13, 2020 2 months ago

Bradenton woman tells story of perseverance during MS Awareness Week

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Country Meadows resident appears to have overcome multiple sclerosis.
by: Jay Heater Managing Editor

It quite possibly was her best throw ever.

Country Meadows' Karen Olivier, a former recreational softball player, didn't expect to be throwing much of anything in her future, at least if she had listened to the doctors who had been forecasting how the the rest of her life would be with relapsing remitting multiple sclerosis.

Although she always had been hopeful she could beat the disease, she had discussed the reality with her husband, Jason, that they needed to be prepared for her life in a wheelchair.

That was before her extensive research led her to an experimental surgery in Mexico. It all led to that throw.

She tossed her cane in the dumpster.

Whether others with the same disease might be able to have similar results, Olivier doesn't know. But during Multiple Sclerosis Awareness Week March 8-14, she wanted to tell her story.

As she bounded around her tidy home March 5, with Jason at work on a computer in the other room, Karen Olivier looked fit for her 43 years. Perhaps that includes some effect of her in January joining Survivors in Sync, the Dragonboat racing team that calls Nathan Benderson Park home.

Most people might know Survivors in Sync as a breast cancer survivors' group, but they have opened the club to others. And, after all, Olivier said she is a true survivor.

Her journey with multiple sclerosis began at age 24 when she was living in Dover, N.H. It was January of 2001 and the vision in her left eye was blurry. A doctor told her not to worry, it was the result of a sinus infection.

Olivier disagreed, saying other things with her body were going awry. When she was out walking with her friends, she was bumping into them, or even running into walls. Her left hand was tingling and she was experiencing fatigue. By September of 2001, she wasn't going to accept that her condition was nothing to worry about.

Eventually, a physical therapist told her she should have some testing done, and the MS finally was diagnosed.

"Once I got home, I started reading about it," she said. "Wow. I thought my career was over, and that no one would date me."

No one would date her for long.

She would date a guy three or four times and then confide about her condition. That would be it. Until she found Jason Olivier.

He had been playing in the same softball league with her in 2001 but it wasn't until the 2002 season they got together. She figured she would just get it over with and told him about her MS on the first date.

He didn't flinch. His dad, Mike Olivier, had MS.

Meanwhile, Karen Olivier went on the drug Avonex, one shot into her leg each week for the next two years. Then came Rebif for a five-year period.

Despite constant relapses, that included often waking up tired in the morning, and a liver that was showing damage, Karen Olivier tried to keep life as normal as possible. She married Jason in 2004, and after lots of tears, decided not to have children. She was worried about 20 years down the road and, perhaps, needing to be at her children's events in a wheelchair.

Eventually she switched to Copaxone and then Tysabri, which was considered controversial because people had died taking it. 

Karen Olivier kept doing research on experimental surgery in Mexico even though doctors in the U.S. told her she was wasting her money.

"Tysabri had been pulled off the market," she said. "I knew there was a risk involved. That was in May 2009. But it seemed to stabilize me."

Nine years later, in 2016, she thought her attempts to hold off the disease were failing. She was dragging her left leg and she needed the cane. Other symptoms were getting worse as well.

"I still felt lucky," she said. "I looked at other people with MS and a lot of them weren't doing as well."

Back at the doctor's office, she was told she was doing great even though she felt she was slowing down. She was having trouble swallowing and suffering from facial palsy.

Then she read an article about Dr. Richard Burt, the chief of Immunotherapy and Autoimmune Diseases at the Feinbreg School of Medicine in Chicago. His trials of a one-time stem cell transplantation treatment for multiple sclerosis showed improvements over other therapies. The process was called hematopoietic stem cell transplantation (HSCT).

According to a Feinberg School of Medicine report, HSCT "shuts down and reboots patients’ immune systems, allowing the body to rebuild damaged nerve cells."

She applied to be in his study but was rejected as they were looking for those inflicted less than 10 years. She also didn't have the $250,000 she estimated it would have cost. Both she and her husband work at home for Lincoln Financial.

But it prompted her in 2016 to go on social media and find those who had the surgery done in Russia, India and Mexico. "I had become obsessed," she said.

She finally went to Monterrey, Mexico in April-May, 2017 for the procedure, which cost her $54,500 and included all the medical care plus a two-bedroom apartment for 28 days.

Twenty months after the procedure, she began to show improvement. She wasn't tired in the morning, and the other symptoms were gone. Damage already done, such as partial blindness in one eye, couldn't be reversed, but she was able to plan for a much better future that didn't include a cane or wheelchair.

"It was a weight that was lifted off my shoulders," she said.

Her trip to Mexico did cause them to refinance the house.

"This is my new kitchen" she said, pointing to an obviously unchanged set of appliances. 

Jason admitted it has been a tough road at times.

"She has cried like a baby at times," he said. "I have, too.

"And we had some ups and downs trying to get through it. I guess you just need to know what you are getting into, You look into the future and see what the potential is."

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