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After eight months, we seem to have moved from “Getting Better Slowly” to “Getting Better Slowed-Right-Down”. Whilst Jennie’s mobility has greatly improved; she is walking unaided now, her upper body and especially her arms and head remain frustratingly abnormal with much muscle wastage despite lots of physio and some exercise.

We seem now to be in the phase where she is waiting for nature to regenerate the damaged axons (electrical cables) of her peripheral nerves, a much slower and less efficient process than the repair of the insulating sheath (myelin), which we are told could take up to 2- 3 years. The axon is responsible for transmitting signals between the brain and the rest of the body and explains why the motor axon is having no effect on certain muscles.

The reality of what has happened has been made more acute by the acquisition of a new home while she was in hospital. As she says, she left the home she loved last June with tingling fingers and an arm that didn’t work. Six months later (via a stint on life support), she returned to a strange environment she had no say in choosing or fitting out etc. The inadequate kitchen compared to her pride and joy at the old house depresses her and whilst there are plans to extend it, that is another story for this blog as is the stress, strain and sleepless nights we have been through.

The emotional impact of acute GBS is now a real problem. Apart from the obvious questions of ‘will I make a full recovery’ and ‘will it recur?’ is a sense of depression and frustration as she is unable to return to her former interests and activities including card making, eating normal food and caring for herself.

Her sleep is regularly interrupted by a recurrence of the nightmares she had in hospital and difficulty in turning over in bed.

The good news is that she is pretty positive and enjoying her new slimmed down look; trying on new clothes and seeing her friends again but not from a hospital bed!



February 2010
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