“I think you will see this typically Sloooooow recovery will continue and continue. It sneaks up on you. So my advice is not to look for improvement….just go along living your life…grateful for being out of the hospital. Grateful for all the little things you CAN do. GBS teaches us to live in the Now…very Buddhist.”
For most of the time that I have been sick, I have not noticed any improvement unless I look back. It often feels like I’m not moving at all. My parents saw me when I was leaving rehab and I didn’t see them for another 2 months. Then they just raved about how good I looked. So what Carolyn wrote above struck me. I had been feeling stuck lately, thanks for the advice about not looking for recovery.
My husband has been totally paralyzed on a vent and feeding tube since June 4. After six weeks he moved his head a fraction of an inch. Now at 2 1/2 months, he can control his eyelids which he didn’t have before (couldn’t close them), and is able to slightly open and close his mouth, but he can’t close it all the way shut at will. John’s doctor thinks he has the Axonal type also but doesn’t seem to have any way to really determine this until he sees how well John recovers. His GB came on in one day and he got daily treatments (5 plasmaphoresis treatments followed by 5 IVIG treatments) starting the next day. The doctor says that John’s recovery will be very slow and it may be Thanksgiving before he is off the vent. Some in the rehab hospital where John has been haven’t recovered after more than a year and are still paralyzed, but these cases came on after West Nile virus or the people had severe arthritis before onset. If your sister was in good health before and isn’t too elderly, eventual recovery with some chronic fatigue they tell me is likely to eventually occur. It sounds like you have cared for your sister at home? Did you have her on a vent at home? Was she ever on a vent?