Sandy Sherman's Story

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It was one of those sweet days in life. Her daughter was turning 7 and her son was 5. Sandy Sherman was 32, happily married, and throwing her daughter a family birthday party at home.

The week before, Sherman noticed a tingling in her arms. The day of the party, she walked up the street a short distance to see her cousin’s new car. “When I came back to the house, I said to my husband ‘for some reason, I had a hard time walking up to the car,” Sherman said. “He said, ‘what do you mean?’ And I said, ‘I don’t know, I can’t explain it.’”

That night, she awoke in bed around midnight with excruciating pain in the tops of her legs, and her hands and feet were numb. “The next day, I went to my doctor first thing, and she performed a physical on me,” Sherman said. The doctor could find nothing. “But she said if it got worse, to go to the hospital.”

It got worse. Sherman could still function, but she had to hold onto her husband to walk. She was admitted to the hospital and remained three nights while they did tests. Everything came back normal, and she was discharged.

Then it got worse again. “[That night], I woke up and my face was completely paralyzed and I got to the point where I couldn’t walk on my own anymore,” she said. She went to a second hospital. This time, they did a spinal tap. “And that’s the only way you can diagnose Guillain-Barré,” she said.

An Answer, and More Uncertainty

Guillain-Barré Syndrome (GBS) is an inflammatory disorder of the peripheral nerves outside of the brain and spinal cord, and affects one to two people out of every 100,000, causing weakness and paralysis. It can affect anyone of any age, and no one knows for sure why it strikes. Some cases can be mild, whereas others can be completely paralyzing to muscles, even those that control breathing.

“When they came in and said you have Guillain-Barré, I was like, great, you have something to tell me. But I’d never heard of it before,” Sherman said. And ignorance, in its own way, was bliss. Sherman was too sick to look up GBS on a computer. “I’m glad I didn’t get to see how serious it was until after,” she said.

For Sherman, it was extremely serious. She had only some very weak strength in her hands, and couldn’t move her toes at all. And although she didn’t have to be put on a respirator, she came close. “It was a difficult time,” she said. “When I was in the ICU, there was a point when I really thought I was going to die.”

Sherman spent nearly a month in the hospital, where she was treated with intravenous immune globulins to shorten the course of the syndrome. Once her medical emergency was over, she went to The Regional Rehabilitation Center, the region’s leader in providing one-stop rehabilitation services, to begin the long process of regaining the use of her body. “When I got to rehab, I had no idea the real work I’d have to do to get home,” she said.

The Work Begins

Kristy McIlwain, a physical therapist, worked with Sandy while she was in inpatient rehabilitation for six weeks. “When she first got here, she could not stand up, could barely even sit unsupported,” McIlwain said. “We worked a lot on just trying to strengthen her legs.”

Sherman can remember a particular day when the work started to pay off. “I was on the [parallel] bars in the middle of the gym and I walked the full length of the bars,” Sherman said. “Everybody in the gym started clapping. I started crying. I had only walked the length of the bars, but everyone else saw that as such a triumph.” McIlwain told her that the next day, she’d be using a walker. “I thought she was crazy,” Sherman said. “But I walked 20 feet. Then the next day I did 40 feet. It really wasn’t until I could stand up on the walker on my own that I felt like I was going to be OK.”

Sherman also had speech therapy. “My face was paralyzed in a way that my eyelids would not close all the way and my lips would not close all the way,” she said. The speech therapy helped her learn how to eat again and how to articulate her Bs, Ts, and Ms, because, she said, she couldn’t close her lips, and it was difficult to understand her when she spoke.

She spent mornings and afternoons in therapy. In the mornings, caregivers would give Sherman the tools necessary to get herself ready, but not do it for her, which was part of her occupational therapy. “I had to learn how to get myself dressed, and brush my teeth and my hair, and eat,” Sherman said. “They were full days of working hard.”

Finding the Strength

Staying motivated wasn’t always easy, but not getting better was not even an option for Sherman. “When you’re in the hospital day after day after day, you come to a point where you either have to fight back or…you know,” she said. “I wanted to get home to my family. I wanted to be a strong person. The people at Faxton were so encouraging. They believed in me when I didn’t believe in me.” And by the time Sherman had finished inpatient therapy, she was able to walk without assistance.

But Sherman’s journey was far from over. She began outpatient therapy, learning exercises she would continue to do at home, even after her outpatient therapy was complete. Physical therapist Mike Gus worked with her on exercises to improve her facial symmetry, limb strength, and balance. “She was very motivated to regain her prior level of function — to get back to the way she used to be,” Gus said.

Sherman is now back home and back at work as an MSR supervisor at First Source Federal Credit Union. She says she feels like she’s about 90 percent of her former self, and continuing to improve. “It was difficult at first because I’m not the same person obviously that I was before the illness,” she said. She still has some balance issues, but she’s started to ride a bicycle again, and she’s driving. “I know physically I’m a lot stronger,” she said. Her husband says that it’s only because she’s who she is that she’s come this far, this fast. “My husband would say ‘if it was anybody else, Sandy, they still would be recovering,’” she said.

He could be right. GBS is often a devastating illness, with no guarantees in recovery. “Sandy came in every day willing to work so hard,” McIlwain said. “She was very motivated and very willing to work to do anything we asked her to do.”

McIlwain and Sherman still keep in touch, having lunch now and then. Sherman said she will never forget the nurses, doctors, therapists and other staff who helped her get home to her family. “It’s one thing to do your job, but it’s another thing to really care,” she said. “And they saw that I was still a 32-year-old girl in a body that couldn’t move and a face that couldn’t move.”

Moving Forward

To this day, Sherman does not know much about why or how she got GBS. “I can tell you it’s a syndrome, not a disease. I can tell you I’m not contagious, but I cannot tell you how come I got it and you didn’t.” There’s just not a lot of research done on GBS, she said, which is why in July, she worked with the Red Knights Motorcycle Club to host a fundraiser for the GBS Foundation, something she hopes to do annually.

And soon enough, October will arrive, marking the year anniversary of Sherman’s illness, and her daughter’s birthday. It’s hard to believe what Sherman has lost and gained in 12 months. “When you go through something like this, you definitely look at life differently,” she said.

Yet one thing remains unchanged. Her daughter’s birthday will be one of those sweet days again this year, because Sherman is home.