03 | Hope

Intuitively, it can be said that hope plays a significant role in the process of rehabilitation. However, a central question is whether the feeling of hope can be supported by a rehabilitation team in an explicit way and integrated in the rehabilitation process to achieve better outcomes.

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’s Perspective

Helen’s tetraplegia left her with very little motor function. However, she could still feel sensations. As mentioned, her hopes focused on increasing her ability to wash and dress herself, and re-gain 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 continue to be hopeful that change is possible despite minimal recovery in such a long period of time. If I didn’t believe this, nothing would happen.

Helen

"We celebrate her improvements together...These little celebrations keep and strengthen her sense of hope...and motivates both of us for the next little steps."

Throughout the intervention phase Helen's rehabilitation team constantly sought balance between Helen’s hopes and the realistic steps toward achieving the goals set. The team members who worked closely and at length with her remained conscious of the need to support Helen's hopefulness while also remaining focused on things over which they had control.

Helen’s evaluation just one month into the second Rehab Cycle was quite remarkable.

I can move the wheelchair on my own now and this gives me a little more independence and freedom  – but this little bit is so much to me! I don't need to be accompanied any longer. Actually, my hope and goal [of improving hand function] wasn't met, but a lot of other things improved.

Helen

Guillain-Barré Syndrome (GBS) is a debilitating disease that can strike unexpectedly at any age and result in serious neuromuscular paralysis, including different degrees of tetraplegia. 5 6 7 GBS presents specific challenges and opportunities that are well-illustrated in Helen’s case.

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