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Friday, May 29, 2009

Family of Student With Multiple Sclerosis Yearns for Her to Regain Voice

By Alice Chen Posted: 05/29/2009

Two months after she was diagnosed with multiple sclerosis (MS), 21-year-old Emory student Susan Barkley woke up last August as if out of a nightmare to find herself paralyzed on her right side and unable to speak.

“She just started screaming,” Susan’s father Paul said. “She couldn’t move, or talk, or anything.”

In June 2008, an MRI revealed a large lesion on the frontal lobe of Susan's brain, showing a severe case of MS, a condition in which the immune system attacks the central nervous system, affecting the brain and spine. Paul and his wife, Mary, started the Susan Q. Barkley Medical Fund to help Susan learn to speak again, and since he launched the website on May 23, he said the fund has reached almost $6,000 in less than two weeks.

MS affects about 400,000 people nationwide according to WebMD.com, but Paul said that only a fraction of those people have cases as severe as Susan’s.

Ever since her sudden paralysis last August, Susan, a Wheel staff writer, has been “pretty badly affected,” Paul said. He said that communication is extremely frustrating for his daughter, whose condition did not allow for an interview.

“We just have to be very patient and give her as much time as she needs to get out what she means,” he said.

Family and friends have been getting the word out not only through the fund’s website and through the family’s blog, but also by way of a Facebook group that now has upwards of 400 members. Paul said that he has also been sending out e-mail newsletters to donors updating them on Susan’s condition.

This fund-raiser, Paul said, is an effort to help Susan continue with her schooling. He said that although Susan gets tired very quickly and still faces physical challenges such as writing and walking, these restraints aren’t the deciding factors in her returning to pursue an anthropology and French double major at Emory; instead, he said, it is her difficulty with communication that is holding her back.

Paul said that the family is trying to send Susan to Steps Forward in St. Petersburg, Fla., a speech-language therapy center where Susan will work on remedying her aphasia, or inability to speak.

While the Barkleys are raising money to send Susan to Florida in June, Susan has been moving forward at hospitals and therapy centers in Atlanta since August.

After nearly two weeks in Piedmont Hospital, Susan was transferred to the Shepherd Center. There she went through physical therapy, speech therapy and occupational therapy, which helped re-teach her daily routines such as combing her hair. Even in the first few weeks, Susan was making progress.

“SUZIE MOVED HER RIGHT LEG!” Paul posted on the family's blog on Aug. 23. “Not just a little either. She was trying to move it and kind of playing around grunting and all then all of a sudden it worked.”

The progress, Paul blogged the same day, gave him “chills” and it was indication that “Suzie is slowly but surely coming back.”

But Mary said she is not sure if her daughter will ever “be back to 'Suzie,'” but that she hoped there would be more improvements.

“I just want a new, better reality for her,” Mary said. “I want her to be able to pursue her dreams and not be afraid for her future.”

Although there were ups, there inevitably were downs, as documented on the blog. While there were days when Susan was “giggling” and “singing,” there were also times when she “started the day crying alone in her room.” Paul wrote on Sept. 10 that the “monster,” or the lesion, had swelled so large doctors said she should be “nearly comatose.” During this time, Susan was throwing up constantly, was put on more medications and underwent surgery where she had a hole drilled in her head to provide tissue samples and to have a cyst drained.

In October 2008, Susan was finally able to return home and continue therapy a couple times a week. This March, Susan performed with a band she created with a group of other patients at Shepherd, singing the lead and solo part after learning to speak the words. Mary said that as of right now, Susan is now able to walk with some assistance, but still cannot use her right hand. In communication, Mary said, while Susan seems to understand everything, her outgoing communication is very limited.

“Suzie’s only 21; she needs to get on with her life. We want to get her back to Emory when she can communicate,” Paul said. “If she can communicate, she can go back and we can get around some of the other issues. That’s what this program is for; to help her communicate and to get her back to school.
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