My struggle with GBS

By Xochitl, Guillain-Barré syndrome, United States, March 1, 2019


Hi my name is Xochitl, this is my GBS story.

I always had been totally independent; I raised two girls by myself. The first tragedy in my life was when my mom died when I was about 28, it was devastating for me. But that wasn’t the worst thing as I thought at the time. In November 2000 my youngest daughter jumped from a thirteen floor building, she was 22 yrs old. My whole world was totally destroyed. I then lost my house, my cars and an 18 wheeler truck that I was driving cross country for living because I fall in a deep horrible depression for about 6 years. I was totally dead. Slowly, I came back to life again and came back in my feet, I started to work again as a truck driver cross country, I was doing so well, and making excellent money, and then BOOM, on Nov 2016 again life struck me again, from one day to another I became totally paralyzed after stomach flu. Diagnosis: Guillain-Barré syndrome

I was totally paralyzed for the first year, depending 100% on other people, CNAs had to do everything for me, it was horrible after working and being totally independent since 14 years old and then at 58 having to use diapers and be cleaned by young men and woman, not be able to scratch my body when something was bother me, and I had to live in a nursing home because I have no family or friends support. Then about 8 months on, the insurance stopped my physical therapy because I wasn’t improving, I was so depressed with no one around me, with my diagnosis, no family, friends or GBS support group. Finally last year Oct 2017 about one year later of my diagnosis, my doctor started to put me on plasma infusions, that is how I started to make some improvements, but I'm still at the nursing home because I need help to get dress or undress or go to the bathroom. I will like to know if there is any other research for GBS, I am desperate to find out if there is any more help for patients with GBS.

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