The Faces of Guillan Barre 2017: Day 30- Adrian

Tuesday, May 30, 2017 0 Comments

2013 will go down as a year of great sadness and great blessing. After a routine visit to the doctor in late January, a blood test indicated that my blood sugar level was very high and I also had high Cholesterol levels. Then followed eight weeks of a new diet regime during which I lost one and half stone.

Summer 2012 : April 2013 : March 2014

At the beginning of March I had a stomach upset which did not seem to clear – a stool sample returned that it was not a virus, but it continued. My Father died on Sunday 24th March – about the time I would have been going to Hong Kong for a friend’s wedding which I had previously cancelled! I never got to my father’s funeral.

That same day I had a strange tingling in my fingers and over the following days I gradually lost the use of my legs. I continued to go to work for a couple of days with increased difficulty.

On the Wednesday I visited Accident and Emergency in Salisbury – they did a few tests and then sent me home saying that if the symptoms persisted that I should contact my doctor.

During that night, my legs were very painful and by the next day my legs were useless and I could not get out of bed. The doctor visited me at home on Thursday 28th March, took one look and said that he thought that I had GuillainBarre Syndrome which is a rare disease of the auto-immune system.
He had only seen it once before in a patient.
I was taken to hospital by ambulance and tests proved his diagnosis. I was immediately given a course of IVIG. By Sunday 31st March I was taken to surgery because I needed ventilating and later that week a tracheotomy was performed because the condition had taken out my lungs. The condition was particularly aggressive and continued to my mouth and eyes – the doctors told my wife that they thought that I would never walk again. I don’t remember much after that – the IVIG did not work so I was given Plasma Exchange.

My first real recollection in Radnor Intensive Care Unit was that of the doctor telling me that my lungs were putting air into the ventilator. This was late April by then, and there is no denying that before that, I had been very ill. Communication was initially by winking an eye or shrugging a shoulder but later progressed to a chart with letters on it and I had to spell out the words indicating by whatever means each letter.

I did have many dreams when I was in my comatose state – I wrote them down as soon as I had use of my hands – but that is another story. I still get flashbacks now, all these years later.

But I was getting better. My lungs started working again and I was gradually weaned off the ventilator until there was no need for the tracheotomy – this was removed mid-May. Suddenly there were no tubes attached to me accept for the catheter, and I had my voice back!

I was no longer being fed through my nose but progressed to more solid food.

When I transferred to Winterslow Ward on 23rd May I could sit up and balance on the edge of the bed for a short while, I had limited use of my right (dominant) hand and I could digest normal food: I was incontinent and could not feed myself but I could just about reach the television touch screen!

Winterslow was a ward dedicated to the older patient and I was the youngest there – I was in a side room because I also had MRSA which could not be cleared by medication. I think that was the main reason why I was sent home as soon as possible.

Slowly through June and July, my body began to come back to life. My left hand followed my right hand and I could use my smartphone again and a computer keyboard! Then I could lift my left foot slightly off the ground. Soon there was no need for an overbed hoist for wheelchair transfers and a “Cricket” was used, and just as I was getting used to that, I was introduced to the Gutter Frame.
When I left hospital to return home on 30th July I had progressed from the parallel bars, could walk short distances with the support of the Gutter frame, my catheter was gone and I was continent.

Learning to write again

I weighed 10 stone and none of my clothes fitted me anymore! The first meal I had when I got home was Chicken Burger and chips from the local take-a-way!
The weather that summer was lovely – a friend made a ramp for the front door and I spent many days in my wheelchair on the patio.
The practice nurse visited not long after I got home and I was shucking peanuts on the patio table – “not much wrong with your dexterity” she said.
I had a hospital bed in the dining room and a rehab care package. Carers visited three times a day.

Eight weeks (24th September) after leaving hospital and nearly six months after the onset of my illness, my rehab care package successfully ended; I was walking with the aid of a Zimmer Frame, doing exercises that the Physio’s had set me, standing at the kitchen worktop and transferring easily to the downstairs WC (such luxury). I transferred from a wheelchair to a car for the first time on 26th August when we went to the Rustic Fayre at Verwood.

One of my achievements was when I stood up for the coffin of a dear friend at our chapel on 13th September – although the backs of my legs were supported by the wheelchair I was at least standing.

The Zimmer Frame was replaced with a Roma Rollator on 25th September.
I climbed the stairs on 1st October and started using Elbow Crutches on 28th October.
I walked into the Intensive Care Follow-Up Clinic on 8th November on Elbow Crutches.
I was already planning my return to work – maybe the end of October!
It did not happen – my doctor would not allow it!

The hospital bed was returned during November and I began sleeping upstairs again – in a newly decorated bedroom. We now had our dining room back again!
I was still having visits from the Physios, but this stopped at Christmas.
I returned to work as a QA Inspector on crutches in January 2014 – all I needed was eyes and hands and they worked fine! It was a phased return and I was fulltime again by April – the first anniversary of my illness. The company doctor visited to check on my working conditions.

Back at work

I have nothing but praise for my employer – my wife had received a letter at the beginning saying, “we are family and you will be supported as long as it takes for your recovery”

March 2015 in the New Forest

That was nearly four years ago – how am I now?
The illness has only left me with drop foot on my left foot which is corrected by an ankle support with a strap that attaches to my laces. My toes are permanently fuzzy.
I am not in pain and do not suffer from fatigue. I do not take any medication for my condition.

Initially for a year and a half I had to rely on friends to transport me around. I received my driving licence back in April 2015 and now drive an automatic.

It was a good feeling taking my wheelchair back in my car.

I progressed from crutches to one crutch, then a pair of walking sticks and then one stick. For a period, last year (2016), I did not use a stick at all, but after a couple of falls I take a stick with me just in case!

I remain reasonably active. I do not think that I will ever be able to walk like I used to. I walk on my own now because I can set my own pace. In 2016, I began to do longer walks – a five-mile walk over the Mendips and Trooping the Colour in London (which entailed a lot of walking).

I started flying again this year (2017) with a long trip to New Zealand. Having a stick was very useful when boarding the plane, but I did not ask for assistance in getting to the gates.
While in New Zealand I climbed a few “hills”.
Returning via Hong Kong I could spend time with the friends I should have been seeing in March 2013.

March 2017 on Mount Maunganui

I don’t think that I had specialist doctors or rehab but the care that I received was certainly professional – I have only seen my doctor once since 2013.

I am still unsure what triggered it – seems strange that it started the day my father died!

I put my recovery down to a gracious loving God – behind me I
have had a praying church and friends. I have had wonderful hospital care and prompt treatment that halted and reversed the paralysis. There have been concerned friends and work colleagues.
My wife calls me stubborn – I usually do it myself and will not ask for help! Some would say that I have a positive attitude.

I retire in June and would like to be able to help those who are suffering from this dreadful condition.

Adrian King
April 2017