We didn’t know it at the time but our GBS journey began on 30th March 2006 when we had our annual flu vaccination. Six days later Kerry complained of severe pain in his lower back. Thinking he might have pulled a muscle he applied a heat pack which did give him some relief.
During the next two days he noticed that he seemed to stumble a few times and needed to sit down more than usual. When he woke up the following morning [Saturday] he found that he had very little control of his legs and had to hold the wall and furniture to remain upright. He reminded me of cows I’d seen on TV who had mad cow disease.
Realising that something was seriously wrong we went to the Emergency Department of our local hospital and were advised by the doctor on duty to waste no time in getting to Orange Base Hospital, one and a half hours away.
With help he did walk in through the Emergency Dept and was admitted to the Acute Care Ward. CT scans were carried out to determine if he was suffering from a stroke, a brain or spinal tumor or spinal compression. His diagnosis was delayed because when having neurological and external stimuli testing he curled his toes in a way that suggested brain trauma. During these tests he was able to feel the paralysis slowly moving up his legs which was terrifying for a healthy, active man.
Another two days of testing and visits from different doctors passed before a Neurologist who was studying the results of an MRI scan asked if we had recently returned from an overseas trip. I told him that the only visit we had made during the previous two weeks was the trip to our local GP for our flu vaccine ----- BINGO!!
Kerry’s immune system had reacted to combat the virus from the flu vaccine, but instead of ‘turning off’ when the job was done had kept going and attacked the myelin sheath surrounding the motor and sensory nerves.
A nerve response test confirmed that he had Guillain Barre Syndrome – a condition we had never heard of! The only good news was that 70% of sufferers make a full recovery. The internet provided a lot of information and through our daughters efforts we made contact with Mary McAlister and the GBS Support group.
By the time the paralysis had reached Kerry’s waist and fingertips it appeared to have stopped. We were given information about having the Intragam but the Neurologist assured us that recovery could begin without having this treatment. This was not to be as further nerve response testing showed that this insidious invader was creeping slowly through his upper body so the immunoglobulin was given intravenously for five days [in the fourth week].
By the time we had moved to the Rehabilitation Dept of Orange Base Hospital where there was a well equipped Physio Dept. and two enthusiastic and dedicated physiotherapists.
We found that weekends and public holidays are not the best time to be in hospital. While Kerry was in the Acute Care Ward we had one weekend, Easter and Anzac Day – seven days when there was minimal staffing and patient care seemed to be prioritized. Kerry looked healthy, could communicate and only needed an occasional Panadol for headache so he was at the bottom of the pecking order. Fortunately he had learned to transfer to a wheelchair so I took him to the toilet, for walks and generally looked after him.
He spent months in Rehab and it was fantastic during the week – two hour sessions with the physios and time in the hydrotherapy pool but then came the weekend. From 5pm Friday to 9am Monday – nothing but basic care. To me it was five steps forward and then two back.
Through sheer determination and hard work he gradually regained the use of his legs and was able to return home on crutches six weeks after being admitted. He gradually returned to work starting with a few hours each day but found he tired easily and needed to rest. Because he was self employed he could do office work where he was sitting most of the time and come home to rest when necessary.
Three years on and newly retired he has not fully recovered and didn’t make that top 70%. He has abnormal sensation in his feet and his legs where he sometimes experiences pins and needles or numbness and at other times a burning sensation.
He is more fortunate than some others who have experienced GBS and is looking forward to a long and healthy retirement.
Even though GBS is not supposed to strike twice, Kerry has been advised against ever having any kind of immunization in the future.
During our GBS experience we were fortunate enough to have the support of our family and friends.
Glenese Nicholson. (wife)- Nov 2009