Gait is one of the hardest areas to rehab in GBS patients

By Lauren Fritsky

It all started with a cough around winter break of my senior year of college.

Thinking I'd run myself down, I fought through my exams and finished up term papers and headed home to my mom's house for some chicken soup and rest.

But by the second day of my vacation, I couldn't get out of bed.

Somehow, the throat tickling and achiness I'd experienced had turned into tingling and numbness in my hands and feet and an inability to walk without support. Puzzled and scared at her healthy daughter's strange symptoms, my mom made an appointment with my primary care physician. By the end of the day, I lay immobilized and strung to an IV pole in a hospital bed. I couldn't roll over, eat or move my legs on my own. Halfway into my stay, doctors returned their verdict on my mysterious ailments: Guillain-Barre Syndrome (GBS).

Though rare, the autoimmune condition takes patients by surprise by either temporarily or permanently stealing their functionality through paralysis of the peripheral nerves in the hands and feet. For weeks, months or even years after the sickness technically ends, individuals face the prospect of relearning simple tasks like walking, as I had to. For that reason, gait training plays an imperative role in these patients' rehab.

A Rare Occurrence

In GBS, the immune system begins attacking the body. The syndrome destroys the myelin sheath, which helps transmit nerve signals from the brain to the limbs, surrounding the axons of the peripheral nerves, which causes sensory disturbances, progressive weakening and/or acute paralysis.

Perhaps GBS' first cruel gesture involves its random targeting of patients. It can affect everyone from children to grandparents and annually strikes between one and two people out of every 100,000. Doctors do not know its cause or cure, but it most often occurs after a respiratory or gastrointestinal viral infection. Pregnancy, surgery or vaccinations have also caused the syndrome in some cases. Five percent of those affected die, while the majority go on to fully recover from their symptoms after several months or years. Relapses are possible, but rare.

Treatments for GBS include plasmapheresis and high-dose immunoglobulin therapy, followed by rehabilitation. Gait is often the hardest ability to regain.

Frank Scerbo, DPT, MS, of Scerbo Physical Therapy & Sports Medicine Institute in Edgewater, NJ, has seen about 10 GBS patients. During a travel assignment in California, he encountered several who'd apparently developed the syndrome after eating seafood.

"Most of the people I have seen were pretty severe, where they're in the hospital for a few weeks," he said. "In any instance, it usually takes a few weeks before you ramp up and start to hit that maximum point where the symptoms are most severe, and they seem to slowly dissipate after that."

Stroll Struggles

Because GBS strikes so swiftly, patients can lose function and mobility within days. And because the syndrome tends to affect the lower extremities before the upper ones, gait is almost always drastically diminished, Dr. Scerbo said.

"Absolutely gait is one of the toughest [abilities to rehab]," he said. "You have decreased tactile sensation from the tingling in the legs, so it's hard for a patient to understand that the ground is there and to just feel stable. Most of these people have been laid up for a while in bed, and their endurance is decreased. I think it's the most taxing activity that they can do. They can't stand in the shower. They need help getting on and off the toilet. Those things become extremely challenging."

Karen Schiff, PT, of Memorial Hospital West Outpatient Rehab in Pembroke Pines, FL, has treated several GBS patients over the course of her career. She's currently working with a 70-year-old patient who experienced a severe case of the syndrome. She calls gait "one of the hardest areas to work on." Part of the reason involves the loss of that myelin sheath.

"As a result, patients present with decreased strength because they don't have normal nerve conduction velocity," Schiff explained. "Therefore, they appear significantly weaker. What we see clinically is a weakness of the trunk muscles as well as the extremities. Because trunk muscles are the first to be affected, we have to initiate very low-level exercises in the moderate-to-severe cases."

Walking Work

Rehab for GBS patients often starts while they're still immobilized in their hospital beds and can include OT or speech in addition to PT. Schiff, for instance, initiates gravity-eliminated exercises and moves patients from transfer training to standing then gait training with assisted devices, most often a walker.

"In the hospital bed, we'll start with rolling exercises, trying to get them from supine, to sidelying, then rolling, then sitting up against gravity," she said. "When they're sitting up against gravity, they may need some outside support from a therapist, or to be restrained in a chair. From there we try to initiate some trunk control. The entire time, we're trying to have the patient assist us as much as possible."

Wheelchairs, walkers, the help of a PTA and communication are common in Dr. Scerbo's rehab sessions. Many of his patients were able to move from the bed to a walker and rehabbed on parallel bars for support. In one of his more severe cases, he started with a standing frame because his patient couldn't tolerate any weight.

"We got her up and used to putting some pressure on her legs," he recalled. "We would just work on standing tolerance to prepare her for the gait movement. Eventually, we got her walking in the parallel bars. That seemed to be the easiest way we could support her and get her to take a few steps."

One of the challenges to rehab in general for GBS patients is their rapid descent into fatigue. PTs must make sure to take that into account when exercising this population through scheduling breaks and rest periods when necessary.

"In my particular case, I always try to sit down with a patient beforehand and explain to them what we're going to do, what's going to happen and talk about our goal for that session," Dr. Scerbo said. "From there, I think they feel pretty comfortable with letting me know, ÔOk, I need to take a break.' In some of the cases, they'd say, ÔI can't do it until after noon. I'm just wiped in the morning, let me eat, let me get ready.' I would try to coordinate around how each person particularly feels."

Schiff makes sure to check patients for signs of shortness of breath, monitor blood pressure and provide adequate rest periods and enough recovery time during and in between sessions.

After Effects

Even after they leave outpatient, GBS patients often still need to work at their recovery, which can take anywhere from a few weeks to a few years. Individuals may also experience residual effects in the form of weakness or tingling.

"Usually, we try to teach them how to monitor themselves while they're in therapy and how to progress on their own," Schiff said. "For instance, sometimes we'll tell them to monitor their own blood pressure with a home device and if they can keep their heart rate under a certain amount with some exercises, then we tell them to increase the exercise intensity with some time or speed."

Schiff stresses functional and developmental exercises, including kneeling, half-kneeling and progressing from the floor to standing for patients working on recovery at home.

"If they're having difficulty reaching, we'll progress to half-kneeling, to standing while reaching at the same time," she explained. "These techniques are similar to what we call proprioceptive neuromuscular techniques and neurodevelopmental techniques."

Also, the condition's tendency to quickly strip a person of so much function takes an emotional toll. Support groups and help from family and friends can buoy patients during and after their battle with GBS.

"It is extremely emotional and it can be very frustrating," Dr. Scerbo said. "As much as we're worried about the physical aspect, there's such a psychosocial component as well. It not only affects them, but it affects their families."

For more information on GBS support groups, visit www.gbs-cidp.org

Lauren Fritsky is assistant editor at ADVANCE. She can be reached at lfritsky@advanceweb.com