Mary McAlister (old)

My present role with the GBS-CIDP committee is to provide telephone support for new or long term patients their family or friends. To also mail or to email information on GBS/ CIDP, to all interested persons. I have been on the Committee continuously since 1990, serving in several capacities during those years.

January 28th 1948. I had, and still do have GBS residuals. GBS persons remember precisely the day they were admitted to hospital. None however on that day, would have had any preconception of what might lie ahead for themselves. The syndrome’s very name was strange and foreign. Guillain-Barre what does that mean? What was it? My own diagnosis was described as a “sort of Polio, but not Polio” – so I was treated as a Polio patient which on reflection was not too dissimilar to present day physiotherapy. This was 1948, no tracheotomies were done, patients needed an iron-lung for vital support, no neurologists attended GBS cases, only orthopaedic doctors, no treatments such as plasmapheresis, or immunoglobulin were then available, even penicillin was not used for practical purposes until 1945. If this was the beginning, it was never going to be the end of my story. It would be many years later when in my thirties I was to hear the word Guillain Barré Syndrome.

School Holidays, January 1948. Having completed my Intermediate Certificate, the next stage of my life was an open book. Whatever might be ahead was unplanned, whether it was further schooling? or work? my future was not a worry, or so I thought. With my family and friends of my father, my Dad driving the family car, we embarked on a month’s holiday in Tasmania, his home state. The Bass Strait ferry crossing was rough, I felt every moment of it, in fact I was very sea-sick, and it was my birthday, I was fifteen. Almost immediately on landing in Burnie, I came down with a very severe cold plus a hacking cough. This would be my so-called GBS trigger event.

Eventually by the end of our family holiday, my cold almost better, we commenced our home-ward journey. We all set off that morning; it was like any other, quite ordinary; however by lunch time, my body felt as though it was encased in cement. It was barely four or five hours since we had left Hobart, and I could barely stumble along. It will get better, we all thought, it is being cramped in the car!!! Another four hours later to our destination Queenstown, I could not walk at all. My father carried me into the hotel on his back. The following day my parents called the local doctor who advised “get her to a major hospital quickly” -- and that was the beginning of what would be the next 18 months in hospital. Three months in Launceston Hospital -- and fifteen months in Ryde Hospital, two years as a daily Outpatient at Ryde, and later continuing my physiotherapy treatments at Sydney Hospital when I worked in the city.

My lowest point with GBS was about at 4 weeks from onset, catching Scarlet Fever from my Special Nurse, she had failed to follow procedures and wear a mask when attending me. My whole body by this stage was totally paralysed. My head, eyes, eyelids, face, neck, swallowing, breathing, my torso, arms, hands, legs and feet, no part of me had been spared; and now this,…yes it was really my lowest point.

At the end of March 1948 my mother, who had remained with me, and I were flown home and I was admitted to Ryde Hospital. (My Dad, brother and Dad’s friends had returned home to Sydney shortly after I was admitted to hospital in January).