Guillain Barre Syndrome – my experiences.

By

David Russell

Page 7

So the day came. I was transferred to ward 5b, the same ward I had been admitted to a month before, almost in the same bed in observation. The shock was immediate. Suddenly I did not have the sole attention of my own personal nurse. Now I had to compete. At first I felt uncomfortable and apprehensive. The transition from the total dependency I had in Intensive Care back to my normal self was on track, but there were some anxious moments. I had almost rid myself of the dependency of Suction. But almost is not complete, and a couple of times in the first nights, when I needed attention, I had some difficulty in summoning a nurse. A buzzer cable was found and the problem was resolved.

Shortly after arriving in ward 5b a new physiotherapist came to take me for a walk. Up until now I had always had two, one either side of me, supporting me. Now I was helped to my feet, guided into the corridor, and with the physiotherapist holding onto the back of my clothes, I walked unaided for the first time. It wasn’t far and I was unsteady and soon tired but this was a major boost to my confidence. Her following visits built on this until one day I ventured across the ward on my own. Five or six steps, hanging onto walls and beds, but I was doing it myself. I also started to be taken down to the gym for physiotherapy and exercise. I had a program of static cycling, steps ups, wall press ups and weight pulling. It was all designed to improve my upper body strength, in particular my arms. The illness had weakened my upper torso much more than I realised. I began to look forward to the daily visits and decided to push myself to my own targets. I know I was pushing myself, to the consternation of all around me who thought I was pushing too hard. But I kept telling them that if I didn’t push no one else would. I had this determination that I would do whatever it took to get better quickly. I was not interested in comparisons with other previous sufferers. I was not concerned with reports that the previous woman sufferer had taken 6 months just to walk. I felt that I could improve daily. I must have appeared very arrogant.

Each day was being marked off the calendar.

The next thing I wanted to do was to tackle the stairs. Being on the 5^th floor meant that I could walk to the lift, go down one floor, then walk slowly back up. This was quite painful and I was very shaky but I repeated the cycle as many times as I could, doing a little bit more each day.

I was still breathing through the hole in my chest, the Trachea. I had a ‘T’ section pipe over it (Swedish Nose) and I could block the air passage inwards and try to suck air down through my mouth and throat into my lungs. Similarly, once I had air in my lungs I could try to force air past my vocal chord. After a bit of practice I managed it. It wasn’t a voice, more a sort of rasping sound. But I could use this sound to form some single syllable words. At least I thought the sound was close to words. Each breath was limited to one word sound. I had to repeat it several times for even Ann to understand. It wasn’t speech, but it was better than nothing. My writing was also improving, assisted by a piece of tape over the lens of my left spectacle. This helped alleviate the effect of double vision by using one eye only.

I had a visit from the Dietician. I wanted to get onto real food. She made it very clear that to have the ENG removed I would have to demonstrate that I could maintain my weight, whilst on reduced rations, and not get dehydrated. This meant one bottle of yuk a day, instead of two, a bottle of water the same way (down the pipe), supplemented by whatever solids or liquids I could stuff down my constricted throat. It sounded easy but there was a problem. How do you swallow? Quite simply my throat muscles had forgotten how to. I tried with saliva. Mixed success!  It took quite a while before I managed to coax something down and into my stomach, without choking. We are all born with a reflexive action that closes the windpipe entry to the lungs whenever food or liquid is swallowed. If we did not have this automatic ability we would choke every time we swallowed. I had simply lost this ability. I had no choice but to teach myself how. The dietician had supplied a tin of thickening powder. This was to be mixed into water, juice or even tea. The purpose was to help me develop a swallow. It produced a drink with the consistency of wall paper paste. Imagine tea, coffee, blackcurrant drink, all reduced to wallpaper paste. Not very appetizing!! Needless to say it was not a success. I really did try, and sometimes even succeeded a few times, but it was absolutely disgusting. If nothing else It reinforced my resolve to concentrate on real, solid, or more accurately semi-solid, food. I developed a liking for porridge. Hospital breakfasts generally get a bad press, but I have to speak from my limited experience. Cork University Hospital porridge is great. It was something I could swallow without choking. It had lots of carbohydrates and therefore energy. I started to look forward to it each morning and I took to asking for two helpings each morning. This raised a few eyebrows amongst the staff I’m sure.