Bed Number Ten

Each case of Guillain-Barre Syndrome is different---for the patient, for the doctors, and for the caregivers.WE ARE ALL COURAGEOUS in that we have fought very hard for the chance to just LIVE and hopefully to obtain as much percentage of recovery as we can.I was diagnosed correctly on the 10th day of onset.By that time, I was paralyzed from the neck down.Treatment consisted of IVIG and therapy in the hospitalfor 2 weeks and then I was transferred to the REHAB center for 9 weeks. I was actually put into a room wherea GBS patient had previously occupied and he and his wifevisited me and encouraged me.The therapy was grueling but productive and I learned once again, just like a baby does, how to get out of bed,sit up, walk and brush my teeth without assistance.After 3.5 years, I am still in a wheelchair most of the day but can walk with assistance for a very short distance ie, across a room. For long distances, I have to use the power chair. The leg cramps that feel like snakes crawling in my legs are still there periodically and are unlike anything I've ever experienced. Since experiencing GBS, I frequently 'feel that I'm in another realm' in my dreams and my almost-awake hours. Very strange.I read everything I can read on GBS because I am still in the recovery period and interested in comparing notes with others who have travelled the same route.While in REHAB, one of my visitors who had previously hadGBS, recommended BED 10 for me to read.She's a precious saint who had GBS back in the 70s andstayed in ICU for about 8 months.My physician says I have recovered 95% now.If I never recover the other 5%, it's o.k. for my life is in God's hands and I am happy to be back at church playing the piano for all worship services. At 73 years ofage, that is a blessing and an answer from God for all the prayers that went up for me.I have a hard time understanding anyone being snide about this syndrome and those of us who have gone through it. It takes courage, faith, and patience to endure andovercome and I feel I have done that so mark me down as COURAGEOUS and BLESSED! AMEN!!

My son, who is a medical doctor, self diagnosed Guillain Barre Syndrome in August of 2014 at the age of 40. He drove to the hospital where he practices internal medicine and the ER staff told him they were sure it was not GBS and to go home. He asked to be admitted. In 24 hours he could no longer walk and in 48 hours he was completely paralyzed and on a respirator. He is now 8 months out from this wicked diagnosis. The beauty is, like most GBS patients he will have a full recovery, but he still has large motor skill difficulties. Sue Baier's story was very much like my son's story. Some of the medical personnel were great, but those who only cared about the "numbers" and not the person far outnumbered the caring staff. Thankfully these days, hospitals allow family and friends to stay with the patient and my son was never left alone during the darkest hours, like Sue was. We were able to have someone with him around the clock for several weeks, until he was off the respirator and could easily communicate. This is a great book for anyone who has had GBS, knows someone who has had it, or most importantly, someone who would like to understand what it means to be a caring and empathetic health care provider and treat people like human beings and not like a number. I was appalled at the behavior of many doctors, nurses and therapists. It should be required reading for anyone doing long term care.

I heard about this book while in Nursing school and out of shear luck remembered it and decided to give it a try. First, I read it in one weekend because I couldn’t put it down. Next, I never in a million years thought that a book of a patients personal account would make such an impact. As I read the pages and learned how some of the nursing staff treated Sue I was both shocked but not surprised. This book has helped me see a little clearer through the eyes of a patient. This will help me for many years to come. I feel this should be a requirement for ALL nursing students. The impact it leaves is great!

So many of these patient-experience books are cookie-cutter. This is too a bit-- no spoiler that the patient lives, recovers, and has a deeper appreciation for life and the little things that we take for granted, blah blah. That said, though, it still holds important lessons for especially younger and new nurses who are still focused on the learning-lab focus on tasks and procedures and, with limited actual life experience, so often completely miss what a human's experience is being in those beds. It's a hard lesson when we learn it ourselves as we get older; that "Geez, I wish I'd known this when I was 24" feeling, the deep regret that we failed our patients when we were callow only because we simply didn't get it. So if you're a newer nurse, read this. Ignore the sometimes repetitive phrases-- that's why I think a better editor would have tightened things up a bit-- but take the deep dive into the experience. It will change you.

Sue suffered a severe attack of the auto immune disorder "Guillain-Barre". She details her ordeal in this book, how it quickly almost totally paralyzed her, leaving only blinking her eyelids for communication, and what her almost year long hospital stay was like. Throughout reading it I was struck by how amazing she is. She didn't give up and kept fighting through. Every page is interesting and you can feel her frustration, struggle, anxiety, and fears, and likewise her joy at leaving the ICU for a private room. If you take care of people whether as a registered medical professional or as a friend or family caregiver, this true story will help anyone understand what it is like to be in the vulnerable position of having your life in someone else's hands. And not just life but day to day activities. I hope you are well Sue and I hope you read this and know how much I admire your fortitude and never give up attitude. God bless you!

ENJOYED READING AND LEARNED FROM IT

Want to know exactly what your loved one is thinking and feeling as they lay in that hospital bed? Read this book! I was hospitalised for 18 months. Reading this book brought back memories I had long forgotten. Bring tissues! Worth the exorbitant price.

Amazing and well writren true story of recovering from untreated Guilain-Barre Syndrome in 1981. Apparently, there was no treatment then to speed up recovery from its paralytic effects. The author's courage, strength and support of family and friends enable her to overcome extreme physical and psychological distress as she regains her ability to breathe, speak, and move her limbs over an 11 month period.