To Andysbrother (I HAVE A Severe GBS Case)

August 16, 2008 at 3:00 pm

Hello, my name is Tina,

I am still recovering from what my Neurologist stated was not quite the worst case he had ever seen, but probably the second or third worst case he had ever seen. I was admitted to ICU on May 04, 2007, experienced everything your brother is experiencing. Don’t want to repeat everything most of the other posters have already stated, but I have experienced them all. I was in ICU for 10 weeks, I was transferred to a Skilled Nursing Facility (SNF) for another 14 weeks. Came off the respirator about 12 weeks at the SNF, was still communicating with abc board. I slowly began to whisper just before coming home on that 14th SNF week. Came home on Nov. 01, 2007 and continued with in home care. I continue with PT twice a week and OT once a week. I remain in a wheel chair and still require full assistance, but I can sit up now, help in transfers from wheel chair to toilet, to bed, etc. I am very slowly still recovering and I have not hit a plateaue, I continue to improve each and everyday, I have limited hand movement at this point, but it continues to improve. It has been sixteen months for us so far. Like I said, I am experiencing one of the worst cases. I am 50 years old now and prior to this I was in great physical shape and I plan on getting back there, hopefully, in less than another year. Patience is very important. I am still taking various medications, but have cut my dosages back. Vicodin for pain, neaurontin for pins and needles, ambien to sleep, Ativan for anxiety and prosac for depression. I am eating good, take plenty of vitamins, lead a life in a wheel chair at the moment, but getting better and stronger everyday. I hope your brother’s recovery is quicker than mine is going, but he will get better, and just hang in there and take things one day at a time. As far as what you can do to help, just heed all the wonderful advice and ideas of previous posters. Things will get better. Sincerely Tina C.