Encounter from Grant McKay, Matamata.
My story starts in October 2003 just after my 53rd birthday.
Two weeks prior to this I had had a bout of diarrhoea which was over in a few days. The Doctors think it probably was Campylobacter due to the severity of the GBS, but this could not be proven as my bowels did not move again for three weeks.
On the Monday evening I mowed the lawns so was not too bad at that point. Tuesday, I had developed abdominal pains so decided to go to my GP to check this out. He gave me pills to start my bowel working again and sent me home. Back to GP on Wednesday with the same problem. This time was given an injection as well and sent home. By the evening my arm strength was going and I had developed pains in my lower legs and lower arms. I spent a very disturbed night as pains got worse and weakness increased. Thursday morning back to GP, by this stage I could barely walk and required a wheelchair to get from car to Doctors rooms. GP shook his head and sent me off to Waikato Hospital where after various tests and a lumbar puncture were diagnosed with GBS. By this stage could not walk at all and paralysis had set in. From here went to HDU and as my breathing failed to ICU where I was put onto a ventilator for ten days which was a very frightening experience. By now I was paralysed from my shoulders down.
The pain I was having in my arms and legs went after about a month and has not returned. My sensory nerves have not been affected at all so sensation has always been good. I have not had pins and needles, numbness or tingling. My motor nerves have been affected limiting my mobility significantly. This is when the long haul started.
I was in Waikato Hospital for 8 months then to a private hospital for 2 months. I won’t go into the details in hospital ( I could write a book ) except to say the Health Professionals that I have worked with have been great, the Physiotherapists, Occupational Therapists, Nurses and most Doctors do a wonderful job despite the lack of resourses.
I lay there for nearly three months before any movement started to return. After 8 months I was on my feet with the aid of a walking machine to hold me up and my arms were beginning to move. At this point I was discharged with a head operated electric wheelchair to a private hospital to continue with rehab. The wheelchair was soon converted to hand operation as my arm and hand movement improved.
At 11 months I finally came home still being hoisted in and out of bed and into my electric wheelchair, shower chair etc.
Intense Physiotherapy has continued until the end of 2007 when the funding was cut. Progress has been slow but steady, plateauing often. In October it will be 5 years, I still have an ongoing balance problem and have very little ankle movement. Steps are a problem and my hands are quite deformed despite lots of work by Occupational Therapists and Hand Therapists.
I walk outside with 2 sticks and inside unaided. My walking is quite bouncy but is getting better as my balance improves. I still have a Caregiver to help with showering and she continues to work with my hands each day.
On a brighter note, earlier this year I passed my driving test so this has given me back some much needed independence.
I cannot stress enough the toll an illness such as this takes on our Family Caregivers. They are expected to care for us and in our case work to sustain a reasonable lifestyle with very little help available.
I may not be able to work again but with a positive attitude, lots of determination, a good sense of humour and a loving wife and supportive family we are beating this life shattering syndrome and are now looking forward to the rest of our lives.