Peter Scott's Encounter with GBS

Written during his recovery

During the week of the 17th May 1996 I had a bout of what turned out to be campylobactor pylori (food poisoning). By Monday 20th I had recovered and was feeling great. That night my GP rang to confirm what I had and to tell me to call and get another prescription as what I had been taking would not cure me.

When I woke on Tuesday I had pins and needles in my left arm which I put down to sleeping on it. Later in the morning I bent over to pick a book up off the floor and landed on my face – I didn’t think too much about this, putting it down to being off-balance. For some reason I decided to go and get the prescription instead of waiting till lunchtime. As it wasn’t far I walked, and I remember asking the nurse to get the doctor to ring me as I wasn’t happy about the way my legs were working. She said I had better come back when the doctor was free. On getting back to the office I promptly fell up the door steps. A couple of hours later I saw the doctor who sent me home with instructions to ring him if I got worse or had trouble breathing. By this stage I couldn’t lift the garage door up. On getting my wife to help me up to go to bed, my legs gave way and we both fell to the floor. I managed with the help of a neighbour to get into bed.

On waking the next morning I was paralysed from the waist down and had limited movement in my arms. I was admitted to hospital where the initial diagnosis was GBS. I later found that my GP had contacted A&E to tell them to expect me overnight with what he suspected was GBS. From A&E I was sent to ICU by which time I was completely paralysed from the neck down. I remained in ICU for 19 days where I had the usual tests, i.e. lumbar puncture, electric currents, to check for the amount of nerve damage etc. I also had 11 plasmapheresis treatments and when my face started to get paralysed I had gamma globulin treatment. Luckily, my face came right in about 4 days. Although my breathing became very laboured I didn’t need to be ventilated but I was very close.

I spent 19 days in ICU fully conscious, 3 days in HDU and 10 days in a general ward before ending up in the rehabilitation unit where I stayed for a little over 4 months. When I first arrived in rehab I was still paralysed from the neck down. Gradually movement started to come back to my trunk, then my shoulders, arms and to the odd finger. By October I could take a few steps in the swimming pool but couldn’t stand on dry land.

Mid November I was discharged and went home to live. This was quite a challenge as I still had very little movement in the majority of my body. I needed a hospital bed, air mattress (where the air is circulated to stop you getting pressure points), an “A” framed hoist (to be lifted in/out of the wheelchair, a battery driven wheelchair, a manual wheelchair, and various other bits and pieces. We had to knock out a wall of the house to create a wet area shower/toilet and also had to build a ramp for access.

The end of January marked a milestone in that I took my first step on dry land, supported by 4 physios and a ‘gutter’ walking frame. Now I can walk 250 meters with no assistance other than a low walking frame. It isn’t quick and I have to watch out for uneven ground and wind, but it is progress.

My hands are still a problem. The tip of my right thumb will touch the tip of the index finger with the other fingers on both hands bending about 90 degrees at the first joint, but very little movement at the tip or knuckle. This restricts what I can do, and is very frustrating.

I come in to the rehab unit five days a week and spend 3 hours building up my muscle strength doing such things as using the computer, making items out of wood and physical exercise. Learning to stand/walk again after having done these functions for nearly 60 years has been frustrating and very exhausting. Because I was inactive for so long the amount of muscle wastage has been great and this is taking a long time to rebuild, hence the slow recovery progress.

Because of the severity of my affliction I have been told that it could be 3–5 years before I know what permanent damage has been done. So, it is on with the daily routine of exercise in the hope that I can speed up my recovery

In March 2005 Peter wrote a follow-up to his GBS encounter for us:

The aftermath of Guillain Barré syndrome. 9 years down the track.

It is coming up 9 years (in May) since I got ‘struck down’ by what to me, my family and friends was then an unheard of condition called Guillain Barré syndrome.

5 years ago Jenny published my story in the newsletter at which time I was managing to walk slowly with the aid of a walking frame.

So what has happened over the last 4 years? Well, I progressed from the walking frame to a walking stick and then to ‘going solo’ without any support. On a good day and without strong winds and rough ground I can walk for about 2 hours but definitely not as quick as I did before GBS. I have to watch the ground in front of me so walk ‘head down’ most of the time but still fall over from time to time, which shakes me up for a while (forgetting about the grazes and bruises to my knees). However it is far better than being stuck in a wheelchair.

My hands have not made noticeable progress over the last 4 years. Movement is very restricted and there are many things that are outside my scope. Things like using a hammer, or carving meat etc. However teeth do come in handy to assist in some things (doing up my watch strap for example).

I can drive (even managed to cope with the Italians, French and the left hand drive car in Europe in 2003) which gives me freedom to go about my work and everyday life without restrictions.

It was surprising at the groups first annual conference (2003) to meet so many who had had GBS, and to find everyone’s story about their experiences leading up to and with GBS were never the same. Some had pain – others didn’t, some took a long time to be diagnosed while others like me had it spotted very quickly. The same with the final outcome, some made a complete recovery whilst others were left with some residual weakness. Probably the only consensus was that fatigue seems to be an on-going symptom. It may not be a factor all the time but it definitely hits you from time to time. It is something you have to learn to live with and know how to manage wit when it strikes.

So after 9 years life continues and I just have to adapt to work around the residual damage that GBS has done to my body. The main thing (no matter how hard) is to stay positive and that there is always someone worse off than you are.