The tetraplegia just happened so suddenly. One morning it’s a stomach ache … then I’m unconscious for four weeks! Can you imagine it? I awoke totally confused and more or less paralyzed. It might be hard to grasp, but even in that state, I really believed that things will get better. In the deepest part of myself, I just knew it.
Helen, in 2007
Helen and Her Fight with GBS
Helen is extremely hopeful. Always the optimist, her personality embraces a promising outlook that is simply intrinsic. Such hopefulness will play an important role in her story.
...even in that state, I really belived that things will get better. In the deepest part of myself, I just knew it.
Following her and her husband’s retirement, she saw a bright future. Her energy was newly refocused and found its place in both her canine companions and enthusiastically directing a local obedience school for dogs. At 67, Helen was not slowing down. Her two children were grown, pursuing their own careers (her daughter was a nurse), and she and her husband continued to enjoy life and companionship together and on their own.
For her, the future looked very good. It was in this frame of mind that she was suddenly and unexpectedly struck with Guillain-Barré Syndrome, or GBS (see Box 1). Naturally, given the abrupt affliction of this disease and its associated tetraplegia, the strength of her hope would be a central player in her recovery.
With plenty of daily exercise, no prior health problems and a good diet, Helen had always considered herself healthy. But for some weeks, she had suffered from gastrointestinal (GI) disease. While not severe, the condition persisted and, about a month into the disease she made the decision to visit her doctor at the local hospital.
This visit to her physician could not have been more timely. Within a few hours of her entering the hospital, her physician quickly noted the onset of GBS caused by a Campylobacter infection. She was immediately admitted to the intensive care unit (ICU). The GBS progressed, leaving her tetraplegic and unable to properly respire. She then fell into one month of unconsciousness and disorientation.
The medical team maintained her on artificial respiration and tube-fed her. Helen eventually awoke as the recovery process proceeded from what was termed sensomotoric incomplete high tetraplegia. This meant she had no motor functions (but did have sensations), autonomic dysregulation (affecting her GI system) and respiratory insufficiency (requiring artificial ventilation).
Two months after the onset, despite these complications, her medical team felt her recovery was sufficient to discharge her from the ICU.
Following her month-long impaired conscious state, she immediately realized her loss of autonomy; a wish for greater independence was at the forefront of her mind. As her rehabilitation began, she thought that the most important functions she needed to improve were her hands.
Following her month-long impaired conscious state, she immediately realized her loss of autonomy; a wish for greater independence was at the forefront of her mind.
This would, she believed, certainly allow her to do more on her own, without the support of others. However, her health care team considered this “unrealistic at the moment.” The challenge (and opportunity) for Helen’s team was in integrating this quality of hopefulness into the rehabilitation process and maintaining a focus that was realistic and achievable.
Fortunately, rehabilitative management can support a patient’s hopes through the health care team’s consideration of these aspects of the patient’s perspective to constructively inform their interventions.
Helen’s Slow Start to Recovery and a New Rehab Cycle
Helen’s progression through the recovery phase overall was very slow. Seven months later, she had completed the first Rehab Cycle.
The previous program goal sought to optimize Helen’s body functions (such as respiratory, urinary and bowel functions) that would, in the long term, help lead to her global goal of optimal independence. At the end of this first cycle, mechanical ventilation at night was still required; while she could breathe, she could not fully expand her lungs on her own.
The previous program goal sought to optimize Helen's body functions (such as respiratory, urinary and bowel functions) that would help lead to her global goal of optimal independence.
Her hand and arm functions were improving only very slowly, leaving her no muscle power functions in the hands and very little power in her arms and legs. Needless to say, her abilities in the activities of daily living (ADL) were extremely limited.
It was now time to begin a new Rehab Cycle, with her discharge from the facility in mind. Initially, it was planned to discharge her for home 9 months after admission. Because of the unusually slow progress in her recovery, her health care team was not very optimistic for a mid-summer release from the rehabilitation center.
Because of the unusually slow progress, her healthcare team was not optimistic for a mid-summer release.
Box 2 | A Rehabilitative Challenge: The uncertain prognosis of Guillain-Barré Syndrome
With Guillain-Barré Syndrome’s sudden onset of symptoms, its life-threatening nature and lengthy recovery period, no respite may be found in any predictability of the disease’s progression.
While the plateau phase of the disease is defined by an unchanged functioning status in the patient and the recovery phase with improvement in functioning, the number and degree of symptoms, the duration of the different phases and the extent of the recovery itself varies greatly from patient to patient.9 In fact, the course of the disease cannot at all be reliably predicted in the beginning phase. What is known is that the prognosis is worse in elderly persons, where severe symptoms of disease at its nadir can leave these patients bedbound and requiring ventilation.9
In GBS, patients are confronted with uncertainty about their recovery. Healthcare professionals are not able to make any reliable statements about the course of the disease – even though the prognosis is, in principle, good. The start of rehabilitation, most often during the plateau phase, is a significant milestone for many patients since functioning begins to improve.10
Nevertheless, coping with this both threatening and life-challenging situation is a great task for patients. Accordingly, their emotional status may change from suffering and despondence to dependence to hope for regaining health and functioning. Once patients find themselves in the recovery phase, they find their functioning improving. However, given that the duration and degree of regained functionality can’t be predicted, GBS may not only produce suffering and dependence, but also, importantly, hope.1