All about Guillain-Barré syndrome: Peter's story!

Farm Assistant, now Agricultural Sales Assistant
Fell ill 11/1992 - wrote this 8/1999

When I fell ill in 1992, I was working on my brother's farm in Denmark as a Farm Assistant.

The first symptom I experienced was pain in my left leg, pain that moved upwards to my back. It grew worse, moved higher and higher up, until I could no longer walk or stand - I could barely walk when supported. I could not urinate normally.
The more paralysed I became, the less pain I felt.

Hospitalisation
During the evening I was hospitalised in Holstebro hospital (22 Nov. 1992), where a spinal tap was performed, and it hurt like mad. During my entire stay in the Intensive Care Unit (ICU), 4-5 spinal taps were performed on me, but after the first one, I was given medication that put me to sleep under the procedure.

Ventilator necessary due to paralysis
Less than a week elapsed from the time I felt the first symptoms in my legs and to when I was hooked up to a ventilator with severe paralysis.
I was treated with plasmaphoresis 5-6 times. My condition worsened, and most of my nerves appeared to be affected with the exception of those that controlled my heart and intestines. I could not move at all.

One night my heart began to malfunction, but luckily my condition began to improve shortly after this: The hospital personnel looking after me noted that I moved my jaw while my teeth were being brushed, this was on the 15th December.

Because of the long period of inactivity during which I was hooked up to the ventilator, I had several bouts of pneumonia, and they were a major nuisance. I was unhooked from the ventilator after 4 months, but my lungs collapsed, and so I was hooked back up to it again. Getting free of it again was a struggle.
Falling asleep meant that I stopped breathing - breathing was not an automatic thing any more, now I had to consciously remember to breathe! All in all, I was hooked up to the ventilator for 6 months (november - may).

In the beginning, the hospital personnel had to hold my eyes open, when I needed to see something, as I could not move my eyelids. I could not hear very much either, but suddenly my hearing returned. During the illness, my sense of taste was affected. Orange juice was the only drink I could drink, and I drak huge amounts of OJ while I was hospitalised!!

I cannot remember what occurred during a period of 1½ months while I was hooked up to the ventilator, and when I became alert again, I also began experiencing a lot of pain. This took the form of an uncomfortable burning sensation if somebody touched me. I was given a lot of morphine to help ease the pain, and had terrible nightmares for a couple of months.

Physiotherapy
During the period that I was in the ICU, I was content to just lie there. Luckily for me, the personnel were tough on me. They forced me to gradually leave the respirator and begin to exercise. I had so little energi that I could not imagine being able to do anything else but just lie in my bed, but I had not given up, so their support was a big help.

A physiotherapist came to my bedside and trained with me during the first 10 months, after this I began going to physiotherapy and also began hydrotherapy, and for a short period, ergotherapy.

During the entire period of my illness, the health care personnel were very good about explaining the syndrome to me, telling me what they were about to do to me, and why, and I was always given an honest answer when I asked them a question. So I feel that I was well informed about my syndrome, Guillain-Barré or polyradiculitis, as it is also known in Scandinavia.

I had a lot of visitors, which was great. I was also visited by Flemming, an ex-GBS patient. He had spent 3 months hooked to a ventilator, and meeting him was fantastic in terms of hope and support. But one has to be ready for such visits, and forcing me to meet him before then would not have achieved much.

Home again!
After a year and eight days, I was sent home from Holstebro Centralsygehus in a wheelchair. I was so weak that I couldn't slice a boiled egg. My wife (now my ex-wife) took leave of absence for 9 months and took care of me, but I required help for a few more months, to take care of my personal hygiene and grooming needs.

After 4 years, I gradually became partially reliant on the wheelchair, and could now get along using a walker or two crutches. I can walk, but not very far without my arthoses for foot-drop. Without them, I had to get around in the wheelchair.

My condition now
I have begun working again, this time as a Sales Assistant in the agro business. I can walk a little without the foot supports, but am otherwise extremely reliant on the wheelchair, walker and walking sticks, although I am confident enough to be able to manage without the sticks at home. My progress has been stable but extremely slow, and even after 7 years I am still making progress. My coordination is still a problem, as well as my sense of balance, while my endurance is practically zero as compared to what it was before I got GBS.

The reason for my getting GBS has never been found, and for some reason I was asked if I had been around dead animals before the symptoms began to appear.

This illness has taught me to look one year ahead at a time, to be able to see progress in small things and to rejoice over this. Psychologically, things have been pretty good, as I've been able to see small signs of progress all along, and have not experienced relapses.

Its now 9 years since I became ill, and I'm still not quite mobile yet. But when I think back to what my condition has been, I feel I am lucky to have achieved so much. I have not seen much progress since I wrote my story a year ago, although my sense of balance seems a little better, and I have a little more strength.

I continue to see my physiotherapist for rehab training, and go for checkups at the neurological dept of the hospital at which I was treated, once a year. Both the neurologist and the physiotherapist are positive, and as long as they remain optimistic, I won't give up.

People have asked me how I can keep cheerful after an illness that took away all the plans and dreams I had for my future. Both the family and career I dreamed of since I was a kid have been destroyed. I never doubted that I wanted to become a farmer, but now I will never be that. However, instead of crying over something that will never be, I am positive over having become a sales assistant in an agribusiness. And I am able to help my brother till the fields of his farm, and get to enjoy being close to farming in this way.

I have learned to cope with my daily life. Shopping is now done in small portions instead of in one go, because I cannot carry much at once. I have also learned how to get around, have found out where there is parking available for physically-challenged people, and doors that open instead of having to be pushed. I can almost manage all the household chores, but a helper comes in once a fortnight.

I applied for a subsidy that would enable me to buy a car, specially fitted out for a physically-challenged driver, and I received it. The car has automatic gears (unusual in europe), which is actually the only aid that I require. Having the car has given me enormous freedom of movement, and allows me to have a job. In fact, if I didn't have the car, I think I would have suffered psychologically - freedom is the best thing about being a human. I have been very lucky - the municipal council governing the area I live in has been generous and allowed me all the aids I require.

There is an important thing to remember: You must remember to talk about your problems. I have been open with my family and friends, but have also been careful about not talking only about my illness. I have visited the physiotherapy school in my area several times, and it is a great help to be able to talk about the course of the illness. I am very honest about my experiences, both good and bad, and it helps both the students and me a great deal.

Don't stay at home too much, accept invitations to go out. When I was in a wheelchair, I found it difficult to get around and kept wondering if doors would be wide enough or if there were stairs ... I cried a lot each time before leaving the house, but I always showed up when I accepted invitations, and found that where there is a will, there is a way.

Before I was taken ill, I was a cheerful boy, and I am that still, despite having experienced a dreadful illness that destroyed my life completely. I try to see the positive in things, in life, and am so very proud of the fact that my rehabilitation has progressed to the extent that I can cope, physically and psychologically.

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