1996 was a bad year for influenza. The shots being given were ineffective for many of the strains going around and I endured several bouts of flu. By Christmas Eve my legs, hands, and feet were paralyzed and I had fallen down a flight of stairs. Because Guillain Barre is rare and because my initial symptom appeared as severe pain in my back and shoulders, doctors were puzzled. After running many tests and discovering no reason for my pain, one doctor decided on stress and another on "conversion hysteria" as the final diagnosis. My husband finally managed to obtain a neurosurgeon who quickly diagnosed the problem as Guillain Barre Syndrome.
GBS typically attacks without warning, generally after one has suffered an infection, and patients are often completely paralyzed, breathing only with the help of a ventilator. I was lucky; my paralysis was partial and my recovery took months rather than years as in some more severe cases.
Through it all my husband was my caregiver and my grown children were my cheerleaders. I have met some wonderful people--fellow GBS survivors and others in the medical field. I now volunteer for the Guillain Barre Foundation, based in PA. With the help of a core group of other GBS survivors I run support group meetings, write a quarterly newsletter, and visit patients in hospitals, nursing homes, and rehabilitation facilities. My first book, Learning to Walk Again, tells of medical mishaps before diagnosis and the nurturing I received during recovery.
The following year, my husband and I reverse roles and I became his caregiver when he was diagnosed with Non Hodgkins in the Central Nervous System--brain cancer. Naturally, being a writer by profession, I have written a book about caregiving and brain cancer. A Caregiver's Story offers hope, information, and encouragement to cancer patients and their loved ones.
