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’s tetraplegia left her with very little motor function. However, she could still feel sensations. As mentioned, her hope focused on increasing her ability to wash and dress herself and gaining use of her hands.
Additionally, Helen had a number of other needs. Due to weakened musculature around her mouth, she found chewing to be strenuous and could only speak very quietly, leading to difficulties with communication and conversation. This latter issue compelled her to limit her visitors to family only; talking with friends was just too exhausting.
I really believe that things will change. And I’m continually hopeful that change is possible even after so little recovery over such a long period of time. If I didn’t believe this, nothing would happen.
Helen’s hope, and therefore her personal goals, centered on her hand function. Through the slow course of her initial rehabilitation following her release from the ICU, Helen found her dependency at the best of times difficult, and at the worst of times degrading.
During the implementation phase, the health team members constantly sought balance between Helen’s hopes and realistic steps forward toward attaining her cycle goals. Those team members who worked closely and at length with her remained conscious of the need to support her hopefulness and remain focused on those targets that were adaptable.
Her occupational therapist, for instance, focused on improving the mobility of several upper extremity joints through the use of passive mobilization and hand braces. Improvements in proprioception, among other targets, were addressed by the physical therapist through standing training and body positioning.
Helen’s evaluation just one month into the second Rehab Cycle was quite simply remarkable.
At eight months following the onset of GBS (and one month after the start of this Rehab Cycle), Helen exceeded all expectations in her interventions. Her respiratory functions improved to where her tracheostomy tube could be removed. She was able to transfer herself to and from her bed to her newly chosen wheelchair and could furthermore move independently in it.
Guillain Barré Syndrome is a debilitating disease that can strike unexpectedly at any age and result in serious neuromuscular paralysis, including different degrees of tetraplegia.7 GBS presents certain specific challenges and opportunities that are well illustrated in Helen’s case.
The intersection of a patient's hope and rehabilitative management can be a significant factor in driving recovery.