Firstly, may I introduce myself, Les Maskell, from Nambour in Queensland, married to Jennifer, have three adult children as well as Guillain-Barre Syndrome!
Secondly, can I thank you for the latest literature, which I found waiting for me upon my return from a couple of weeks in Tasmania, and all the information regarding the Association, as well as 'sharing an interesting story' which I would now like to do.
Having read various versions and other peoples experiences who have suffered this most disabling disease, and how it has affected their lives, I can certainly speak from first hand experience the way it treated mine!
In most instances, it seems to come out of the blue, with very little warning, but with devastating result if not acted upon immediately, in fact, in my own case, I believe that because of the speed of my diagnosis and subsequent hospitalisation, I am able to use my computer once again to tell my story!
I had noticed that I was becoming unsteady on my feet, and especially when I stood in front of a mirror in my bathroom to shave, when I would actually gradually fall forward so that my nose would touch the mirror! I think I put this down to light headedness, or perhaps a slight case of Vertigo, however, a couple of days later, whilst waiting for the traffic lights to change at the pedestrian crossing, I felt decidedly 'wobbly' - and as the lights changed to green, and I proceeded across, when I reached the middle, the lights then changed to red once again, and because there was a line of traffic waiting to go, I tried to walk a bit faster, but instead of increasing my pace, both of my legs folded, ( just like if you are standing someplace, and somebody creeps up behind you and quickly hits you with their open hand at the rear of your knees) and down I went!
The poor guy who was in front of the cars actually thought he had hit me with his vehicle, and he jumped out to assist me in getting up, and although I was able to get to the other side of the road with his help, I knew there was something terribly wrong with me, and by the following day, I had difficulty getting out of bed, and had to ask my wife to drive me to the local Doctor, who suspected that I may have G.B.S. – or which sounded a whole lot better, a viral disease!
I was advised to seek specialist treatment, and immediately went to Brisbane (Aspley) to see the Neurologist who confirmed the Doctors diagnosis. Upon returning home, I firstly looked up on the internet, what exactly ‘G.B.S.’ was, and to my dismay found that not a lot was known by the medical profession, regarding the source of the disease, or, indeed the treatment required to get rid of it, and when I turned the computer off, I really wished I had not even turned it on in the first place.
I soon found myself in the Nambour General Hospital, where, apart from being given fifteen litres of a liquid Intravenously, which I was told would hopefully coat my now exposed nerve endings, plus two kidney biopsies, (unfortunately, the first one was not good enough) and I was hospitalized for the following three weeks, until I was transferred to Eden Rehabilitation Centre at Cooroy, in almost a completely useless state, unable to use my feet and legs or my arms and hands at all.
As soon as I arrived there, I made a dramatic entrance because I actually slipped off the bed, due to the slippery surface of the bedspread, however, no harm was done, and the staff soon picked me up again, ( but now with bedrails in place) and I guess I wondered what was next!
I didn’t have to wait very long though because although the bedrails were up, I managed to slither down to the end of the bed where there was a gap between the rails and the end of the bed, - just enough to allow me to fall out of bed once more, much to the horror of the nurse who heard the thump of me landing on the floor. She thought I had managed to climb over the top of the rails somehow, and gave me a lecture on the damage I could do if I had crashed through the large glass sliding doors which were about a couple of feet away from my bed, but luckily, once again no damage as done, and I was lifted back to bed. During this time, I was taking a variety of pills and medication, and these were being very closely monitored by the medical staff, who were just marvelous, although I felt some were unaware of the serious condition I was in, because they treated me as if I was quite healthy, (looked O.K. so why would’nt they) however, it was when I graduated to a wheelchair I found a new interest in some staff members, which was to continue as the weeks passed by, and I managed to move on to a rollator to get about, and then a four wheel walker, which seemed to be so unstable after using the former equipment, however, although I can still hear the Physio’s shouting out “Stand up straight Les!” “Take smaller steps Les”.
I was actually walking once again, and quite frankly, I didn’t give a stuff what they said, I was simply so happy that I could do anything at all!
To get to this stage was no easy matter, and apart from medication that changed from time to time, the daily physical excersise, as well as the occupational therapy sessions, gradually increased my strength, and I found I was able to do small things for myself, such as holding a cup without dropping it, or undoing my watchband, or doing up buttons, even to the stage where I was able to shower myself once again, and not having to be supervised by anybody! My wife Jennifer, was just marvelous throughout all this, and apart from visiting me every day, she would take me out in the car whenever possible as I recovered.
Earlier in 2008, she had purchased a couple of tickets for us to go and see Andre Rieu when he arrived in Brisbane with his wonderful orchestra, and of course, it was around July that I became ill. When I was hospitalized, I thought, ‘well this is one thing I am going to miss’ and just three weeks, before I left the Rehabilitation Centre, I was hobbling around on my wheely walker, and on the day of my discharge, I decided that I would discard it and use a walking stick instead. Many people said I would most likely fall over, but I didn’t, not once! We did go to Brisbane, we did see the show, and now I’m so happy to say, I don’t even use a walking stick.
Although I may be slow, and there are still some things I cannot do, I’m getting there, and I hope that ‘My Story’ will encourage other members of the Association to not only be positive as an aid to their recovery, but also to be able to look forward to better times ahead!
Les Maskell May 2009