GBS – Life moves on One year from diagnosis

On 1 June 2015, at the age of 68, I was diagnosed with GBS. This followed a bout of food poisoning (campylobacter) a fortnight before. On 30 May I felt some weakness in my legs and by the morning of 1 June I had lost all use of arms, legs and hands. I was hospitalised for three months eventually coming home on September 8, just managing to walk a few steps and little else.

1 June 2016 I wake up this morning and, as most mornings, I stretch my legs and my body; tingling sensations, aches and pains course from my toes to my shoulders.  After the initial discomforting sensations my body settles down again.  I am reluctant to leave the comfort of my bed as I know that immediately I try to stand the challenges of the day stretch before me. However, I brace myself and totter to the bathroom with my walking frame which, in the house, I try only to use first thing in the morning whilst my legs are becoming acclimatized to the upright position. I have managed to develop strategies for washing, shaving, showering and other bathroom activities. These all seem to take significant amounts of time and energy, particularly if I have dropped the soap in the shower, and by the time I start to get dressed I am ready to sit on the side of the bed again. I try to wear clothes that don’t need buttons as these would present significant problems for my hands. It took me a long time to be able to tie my own shoelaces but now that is fairly routine, however occasionally the process of putting on shoes can have its problems. Sometimes I think that the aids that I use have a malevolent life of their own.  I have a particularly tricky shoehorn, which when dropped, decides to bounce right under the bed causing me to grovel on hands and knees to retrieve it. Recovering from hands and knees position is also not easy. I approach the stairs now with only minor trepidation. I am still going downstairs backwards as this seems to be the safest option although I know that I must attempt going down forwards in the very near future. Downstairs I walk without any aid, although even knowing the environment intimately, moving around is not without its dangers. Because the nerves are still growing (I hope!) one or other or both legs might collapse with no notice. This means that concentration levels at all times must be high. I get my own breakfast but this means at least three journeys across the kitchen as I am only able to carry one or two items at a time. This is because of a combination of factors, strength and control of hands, and the need to concentrate specifically on each action.  The brain must force the signals to the relevant parts of the body in order for them to respond effectively.  I seemed to have developed a habit of weetabix, milk and honey as I can manage each of these individual items with little difficulty. I can also make myself a coffee provided I do not fill the kettle too full, so that I can lift it safely. One year on sets me thinking. How would I have managed without the support of my wife, family and friends? Their support has been amazing. What was I doing just over a year ago? For my age I was fairly fit, I could cycle reasonable distances, I could walk with groups of friends, I had only just given up windsurfing because of the time commitment, I had recently being on a motorcycle trip to visit the World War I battlefields and I was planning a motorcycle tour to Scandinavia. (The motorbike had to go on eBay!) I managed the garden, grew vegetables and was a dab hand at the barbecue.  After a layoff of over 50 years I had taken up fishing again, was really enjoying it and starting to teach my grandchildren some of the basics. But most significantly we were travelling rather than just holidaying. Our next big trip was to be New England, Hudson’s Bay Canada and Florida.  All of that finished on 1 June 2015!  It seems now that I can do very little …. but on reflection there is much positivity. In September, soon after coming out of hospital, I thought it would be good for me to go swimming. I have swum since I was about six and considered myself a fairly strong swimmer and not afraid of water.  So with the help of my wife (who has been a fantastic support throughout) we went to the local pool. Fortunately there was a beach area so with the help of the lifeguards and a wheelchair I managed to get into the water.  Clinging to the side I edged my way into enough depth to start swimming. I pushed myself forward intending to do a simple breast stroke width and to my horror, amazement and amusement, I sank straight to the bottom!  I had no muscle memory of how to swim!  I started again from the side practicing some strokes and after a couple of weeks I managed a width underwater, my arms still not being strong enough to raise my head above the water. Eight months on I can now do 20 lengths above the water with a combination of breast and backstroke. Yesterday I managed to climb the ladder out of the pool for the first time (with a little push from behind from my wife) rather than rolling out onto the side like a beached whale! At the end of March I started driving again. The DVLA had never taken my license and while my case was investigated, had continually informed me that I still had a full legal license.  I felt it wise to have some supervised driving in a car with dual controls. A sympathetic instructor took me out for a couple of hours and felt that I was quite competent.  I have treated myself to an automatic car. This has made driving even easier and is becoming enjoyable again.  Being able to get out and about on my own was a significant change to my life, liberating yet challenging. What would the terrain be like at my destination? How would I manage any activities when I got there? So forward planning became essential so that I could prepare myself for whatever I might be doing: shopping, sightseeing, short walks, restaurants, pubs, other people’s houses. When out alone I still use the Delta frame as it provides me with security and enables me to walk greater distances. We have now started going abroad again and tackling the challenges of airports, luggage and unknown terrain. So far with trips to Spain and Greece I have experienced only helpfulness by all airport staff, flight attendants and the general public. I have been swimming in the sea but this does mean that someone has to help me stand after crawling up the beach on hands and knees like some alien emerging from the depths. Boat trips have been challenging, but not impossible with the help of fellow travelers. Not being able to windsurf any more, I have just taken up sailing.  My local sailing club has an Access boat which has been specifically adapted for disabled people. Once I am in it I can sail quite happily until I need to get out! I need a bit of help with this! I have always been a very independent person so the greatest issue with which I have to contend is that of dependency. I need help with most domestic tasks, fishing, gardening, cooking and any activity which demands either strength, dexterity or even carrying things. This is my greatest frustration so I am continuing to explore activities which I might be able to do independently, whilst being enjoyable but also improving skills for normal living. In the near future I am looking at a tricycle instead of bicycle, I am exploring gliding lessons (independence once airborne!) and next summer will look at the possibility of a quad bike rather than a motorbike, manual dexterity permitting. Perhaps June 1 2017 will provide a more interesting reflection.

Gordon Wallace

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