Tips and Tricks I learned living with GBS:
-Crocs shoes are your friends. the light weight construction is perfect for people like us that drag feet, also super soft soles for people with hyper sensibility. I could not walk with the braces as they all cut into my skin, once I found out that there are super light weight shoes I never had to use braces again.
-Sleeping upside-down, with your feet hanging out of the bed helps to prevent drop feet, let gravity help you.
-un-heated pool exercises accelerated my recovery, i was supposed to be bed ridden for at least a year, I believe that what the pool helped me tremendously and I could actually see and feel how I was getting stronger.
-positive/humor is a life savior. we had GBS so what? there are millions of people facing terrible things in their lives. GBS gives you a second chance in life, use it! if you are depressed seek professional help, don't internalize!
-you are in control of the medicine you will be taken, read side effects, decide what you want to do, learn as much as possible, seek second and third opinions from neurologists with true GBS track record.
-this is obvious but we easily forget: exercise and keeping you weight in control could save your life. If you can't do some ties of exercise look for alternatives. I cannot run after my GBS, but I can do much more in a pool or on an elliptical bike or lifting weights and cardio.
-manage your energy, avoid the couch but also rest when winded, pushing yourself one inch at the time. I started my therapy by seating. the first couple of weeks I could only seat for 30 seconds in excruciating pain, just keep pushing yourself! you can make it.
-it took my family a month to be able to communicate with me at the hospital, then someone had a brilliant idea to bring an alphabet table, I blinked-spelled for 4 months but I was finally able to have a voice. in my experience I noticed how doctors and nurses immediately dismiss that you can actually think perfectly.
-family support, this is key: I am alive thanks to having someone with me 24/7. family needs to stay vigilant.
anyway this is it for now, please reach out if you need any other tips.