All about Guillain-Barré syndrome: Peg's mum had GBS in 1997 and has now recovered.

My first recollection of there being anything wrong with Mum was when Dad telephoned one Sunday morning and said “There’s something wrong with your mothers legs – she’s walking like a drunk woman!”.

My initial response was “Get her to a Doctor”.

Luckily Dad had her to a clinic that afternoon – with some difficulty on his part. Again, luckily, the Doctor did not dismiss or reduce her condition and had her admitted immediately to Taranaki Base Hospital that same day.

I never saw Mum until the following day. My first impressions were that from her speech she had had a ‘stroke’ or something of that nature. She was quite distressed with the situation but as usual very stoic.

I went in again on the Tuesday and there was a remarkable and very distinct decline in her. Speech was nearly impossible to understand. That evening they moved her to a side room in the ward and did very comprehensive testing. By morning – and Dad and I were at the Hospital pretty early – we had the results, GB had been confirmed. (Not that we knew anything about what that was -–were we in for the learning curve experience!)

Mum was deteriorating by the hour. A decision was made in the Ward to get her to Intensive Care as her breathing was becoming quite a problem. We trailed down to Intensive Care – feeling pretty useless about now.

We decided that we should call my older brother Kevin and my younger sister Raewyn. Both had to travel quite some distance to get here, but things had become quite serious. The doctor in charge of Mum’s case in the IC unit decided she needed to have a ventilator attached to aid her breathing. We were asked to leave at that stage, so went home to Dad’s place. About then Dad (a pretty unstable angina sufferer) wanted to telephone his family Doctor who was also a friend. Dad did not talk for long, and passing the telephone over to me. The doctor proceeded to tell me that Mum would die. I felt stunned. I didn’t know what to do – I certainly couldn’t tell Dad that. After a quick rest Dad and I went out to the airport to greet my sister – on the way there we saw and spoke with Kevin who had wasted no time coming south.

We all went back to IC and two at a time were allowed to see Mum. She was pretty drugged up and I’m not sure how much she actually understood at this stage.

Taranaki IC made a decision within hours that Mum would have to go to the Waikato Hospital (some 3 hrs away by road) as they could not keep anyone at Base who required a ventilator for an indefinite period of time. A helicopter was called from Waikato with Doctor and Nurse aboard. At this stage you realise just what the health Dollar is being spent on, and just what professional and experienced personnel there were to deal with Mum.

Just prior to leaving I had a good talk with the charge Nurse and she managed to dispel some myths about what we were dealing with. #1 – very few people die from GB. #2 – the Health System being what it is, we would not become paupers paying for the care she would need.

We arrived in Waikato about the same time as the helicopter (we did not speed – very much). Mum was accorded a single room in one the IC units – a nurse was their 24hrs a day and the very best of assessments and care became her daily routine for the next nearly 4 weeks. During this time they performed “Plasmapheresis” several times – although it may have been too late for this to result in any improvements for her. I can not speak too highly of the care that Mum received and the reception the family experienced from these people. We were in and out of that building like yo-yos and came to learn of every short cut and staircase there was, and how often the menu varied in the Canteen. Dad must have become particularly fit during those weeks. My brother, luckily lived some few kilometres the other side of the city, so Dad lived there. However, most of this waking hours were spent walking the corridors or sitting talking to or comforting Mum. It must have been an ordeal your would never have expected ever to experience – more like a nightmare really.

I alternated between Taranaki and Waikato like never before. If I left it too late to leave Hamilton I would stay over at my brother’s home – otherwise it was a day trip. My sister would do the same coming from Waiuku in the other direction. After those weeks passed, they started weaning Mum from the Ventilator and she began the process of eating, talking and walking again. All had to be learnt like a child, and I could see that everything took immense effort and concentration on her behalf.

Mum was moved to the wards and her slow recuperation process began in earnest.

During that time it was my 40th birthday, and when my husband asked what I wanted, I had no hesitation in saying “the weekend in Hamilton”. We all (two children and my husband and I) packed and went to Hamilton for a couple of night. My sister in particular made those few days very special by taking the time to bake a cake, and arriving at the hospital with grape juice, glasses etc. etc.

Some weeks later came the big move back to Ward 19 in Taranaki. (Why they have since closed that ward remains a mystery to me – my Mother would not have achieved the level of mobility and have the quality of life that she enjoys today without the intense and dedicated physios and nurses that ran that ward.) Some six months later Mum came home. What a day. No one could have been more pleased than my Mother, but the rest of us were a pretty close second.

Today, Mum suffers some degree of disability with her legs when walking and I know suffers somewhat with pain in her feet, ankles and legs - this interfers with her sleep pattern quite a lot. It would be rare for Mum to mention these things to anyone. She has been through more than you would wish on your worst enemy, and has endured. I know I am a stronger and more compassionate person for what she has had to experience.

There is no one quite like your Mum. May God bless her.

Peg
2003