Living with Guillain-Barre Syndrome

My very brave son contracted GBS nearly 3 years ago-January 1 2005-our New Year started with a definite BANG!!!!! Within 8 hours he was on life support and air lifted to a major hospital. So started our horrid journey and he had just turned 12.

We spent 6 months in hospital away from home. He was on life support for 2 months and in that time his lungs collapsed many times,his heart stopped many times (so did mine I might add) BUT I always kept in my mind that he was going to recover and one day we may realize the purpose for getting this horrid PAINFUL disease. Rehab was painful but absolutely necessary if my son was going to have a good quality of life in the future. But theres more to my story.

When Ben came home his health was still compromised and it would take time to fully recover. He started back at school part time with a teachers aide to help him in every aspect of school. He needed assistance to walk ,write BUT he could talk-thank you god. Little did we know at this time worse was about to develop. He was bullied constantly for the next 12 months to the extent of being assaulted 2 times-definitely not a fair fight. Life got so bad for Ben he suffered major depression behaviour problems,eventually cutting himself of from the outside world.

I now teach him school by distance education. He rarely leaves the house and we are giving him time to recover physically and mentally. Life is getting better but that only happened when we got to ACCEPTANCE. Yes he does have residual effects from GBS,namely fatigue,muscle weakness,painful hands and feet,but I dont let him use that as an excuse for not doing something. If I had one word of advice for anyone currently in the critical phase of GBS it would be the importance of physiotherapy. I started doing range of motion exercises on Bens upper and lower extremeties from day 1. Although he was on life support I knew he didn’t like it because the monitors would go into alarm The staff,doctors told me his recovery was quicker and without further complications due to my persistence and committment. I must add 6 months after arriving home I had a physical and mental breakdown but I recovered with councelling.

So if you are reading this it may feel you are alone and drowning BUT look around you and you will see worse. Recovery will happen!!! You are just starting your journey keep in mind somewhere in the world another person has been through what your going through and life DOES get better but not without struggle. NOT A DAY PASSES I DON’T THINK ABOUT NEW YEARS DAY 2005 AND THE MANY MONTHS FOLLOWING.