Reply To: Axonal Guillan Barre (AMAN)
Hi I’m in the medical field and was
Dx with axonal GBS July 2015. I spent
two weeks in the hospital and had seven
rounds of PE. I was moved to acute rehabilitation for one month and followed by six weeks of subacute rehabilitation. I came home in late
October using a walker,AFO’s and wrist braces. I still needed help with my basic needs but being home gave me motivation. After a few weeks my visiting PT suggested outpatient therapy but I didn’t want to go with the walker.
My motivation stepped up and I started walking without my walker. I would go outside to my backyard and walk around and go to the mall and restaurants with my wife and daughter. With this being the winter I could hide the wrist braces but when the spring came I began to feel discouraged about my hands. I tried very hard working with OT to strengthen my upper body and arms. My OT said that this would make its way into my hands and by late summer 2016 I was riding my bike after noticing movement in my wrist. I stopped using the wrist braces and began concentrating on my foot drop so I stopped the AFO’s and my PT started me on the treadmill. I worked on improving my gait and heal to toe walking. This brought me through fall and winter of 2016. I’m still waiting for my recovery to come back to my hands and I feel like it is going to. I can move my fingers and straighten my thumb and index fingers. I gotten back a lot of my independence, I drive and shop on by myself. I still have numbness in my big toes and my walking is improving. I have not returned to work completely, only twice a week. I go to therapy three times a week and look forward to working out with patients who have different experiences. I hope to hear from those in the forum who have been dealing with axonal GBS for years and to get updates on where they are now.