Dick’s Experience with Guillain Barre

Here is more than you ever wanted to know about the condition of my body. I played a gig on February 17,  Fat Tuesday, packed up, loaded the car and drove home with no problem. The next day Linda noticed I was walking a bit wobbly. The day after that was worse with the weakness moving up my body into my arms and hands. I went to the doctor and on Saturday he had meet him at the emergency room, did some tests and admitted me to the hospital where for five days they did a series of tests trying to find out what was wrong with me. They released me on February 26. By using a walker and leaning against a barstool I was able to do weddings on March 7 and 14 however the weakness continued and on March 17 I was admitted again this time for 16 days. During this time, in addition to my primary doctor I was seen by a neurologist, physiatrist (two ENG tests involving needles and shocks), hematology doc and two surgeons - one took a piece of my thigh one took a piece from my ankle to send off for biopsies.

They suspected a disease called Gullian Barre which is a virus that attacks the nervous system. Since there is no test for this the process is to test for every other possible condition, eliminate them and assume it must be this virus. During my stay, in addition to the biopsies and ENG I had two spinal taps, two MRIs, two EKGs, and what must be a record number of blood samples taken. I then underwent IV IG treatments where they gave me plasma from healthy donors intravenously. It was a series of five treatments each lasting 4 to 5 hours. On March 26 they moved me to the rehab wing of the hospital for seven days of rehab. I was released on April 1 to continue the rehab at home. Since then there has been some small improvements and I can now hold a pen and a fork in my right hand and can brush my teeth. My son Vic installed a hand-held shower and a bench in one of the bathrooms. They tell me the way this works it gets worse and worse then there is a plateau of  undetermined time and then, hopefully, it starts to get better. How long this takes varies from person to person. I can already walk short distances without a walker.

I still cannot type but Linda bought something called Dragon Dictate so I'm speaking this email and the app types it out. My research indicates that two out of 100,000 people get this virus and it could have been a lot worse. I'm grateful for everything being done and especially my rock, Linda. I don't know if she is my reward or I'm her punishment. Will keep you informed and I accept all thoughts and prayers.

t the la     © Dick Caldwell 2012