03 | Hope

Helen's Story

The tetraplegia just happened so suddenly. One morning it’s a stomach ache … then I’m unconscious for four weeks! Can you imagine? 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. Deep inside of me, 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 played an important role in Helen's story.

"...even in that state, I really believed that things will get better. Deep inside of me, I just knew it."

Following her and her husband’s retirement, Helen saw a bright future. Her two children were already grown and pursuing their careers. Helen and her husband were continuing to enjoy life together and were following their individual interests. She refocused her energies on her canine companions and in enthusiastically directing a local obedience school for dogs. At 67, Helen was not slowing down at all. For Helen, the future looked very good. It was in this frame of mind that she was suddenly and unexpectedly struck with Guillain-Barré Syndrome (GBS); see box 1. Given the abrupt onset of this disease and its associated tetraplegia. Helen's hopeful nature 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 been suffering from gastrointestinal problems. While not severe, the condition persisted, and about a month after experiencing the problems, she decided to visit her doctor at the local hospital. This visit to her physician could not have been more timely. Within a few hours she was admitted to the intensive care unit with the diagnosis of GBS that was caused by a campylobacter infection.

The GBS progressed, leaving her with tetraplegia and unable to breath properly. 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 when her illness progressed to a status called ‘sensomotoric incomplete high tetraplegia’. This meant that she had no motor functions while having sensations, experienced autonomic dysregulation that affected her gastrointestinal system and respiratory insufficiency that required artificial ventilation. Despite these complications, two months after the onset of GBS her medical team felt that her recovery was sufficient enough to discharge her from the intensive care unit.

"After realizing that she was totally dependent on others, the wish for greater autonomy was at the forefront of Helen's mind."

After realizing that she was totally dependent on others, the wish for greater autonomy was at the forefront of Helen's mind. When her rehabilitation program began, she thought that the most important functions she needed to improve involved her hands. She believed that gaining more functioning in her hands would allow her to do more on her own without the support of others. However, Helen’s rehabilitation team considered this unrealistic at that point in time. Regardless, her rehabilitation team acknowledged Helen's hopefulness, and took on the challenge (and opportunity) of finding a way to integrate Helen's hopefulness into the rehabilitation process while maintaining focus on efforts that were realistic and achievable.

Fortunately, the Rehab-Cycle® approach to rehabilitation management can facilitate the integration of hope in rehabilitation in that it encourages the rehabilitation team to consider the person's perspective when planning rehabilitation interventions.

Helen’s Slow Start to Recovery and a New Rehab-Cycle®

Overall Helen’s progress toward recovery was very slow. Seven months after starting rehabilitation, she completed the first cycle of rehabilitation or Rehab-Cycle®.

In this first Rehab-Cycle® Helen and her rehabilitation team sought to optimize her body functions, such as respiratory, urinary and bowel functions, that was one step forward towards achieving the ultimate goal of optimal independence. At the end of this first Rehab-Cycle® mechanical ventilation at night was still required; while she could breathe, she could not fully expand her lungs on her own. In addition, Helen's hand and arm functions were improving only very slowly, leaving no muscle power in her hands and limited muscle power in her arms and legs. Needless to say, her abilities in the activities of daily living (ADL) were extremely limited.

After seven months a new Rehab-Cycle® began that aimed towards Helen's discharge from the rehabilitation center. Initially, it had been planned that Helen would be discharged home 9 months after admission. However, due to the unusually slow progress in her recovery, the rehabilitation team was not very optimistic about a timely release.

"Due to the unusually slow progress in her recovery, the rehabilitation team was not very optimistic about a timely release."

Box 2 | A Challenge to Rehabilitation: The Uncertain Prognosis of Persons with GBS

Although much is known about GBS 5 6 7 8 9 10 11 the progression of the disease is unpredictable. 9 10 While the plateau phase is defined by an unchanged functioning status in the person and the recovery phase with improvement in functioning, the number and degree of symptoms, the duration of the disease phases and the extent of the recovery itself varies greatly from patient to patient. In fact, the course of the disease cannot be reliably predicted in the acute phase, since it differs from one person to the other. What is known is that the prognosis is worse in elderly persons, those who experienced rapid disease onset, and who were bedbound and required ventilation during the peak of disease severity. 5 8 10

Although the prognosis for persons with GBS is generally favourable 5 10 12 rehabilitation professionals are not able to make any reliable statements about the course of the disease. Consequently, persons with GBS are confronted with uncertainty about their recovery. In light of this uncertain prognosis, hope can play a major role in facilitating the rehabilitation process.1 2 3 4 11

ICF Research Branch CoordinatorICF Research Branch in cooperation with the WHO Collaborating Centre for the Family of International Classifications in Germany (at DIMDI)

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