Guillain Barre Syndrome – my experiences.

By

David Russell

Page 11

I still had double vision. I would wake up each morning and look up at the lampshade hanging from the ceiling. I tried to convince myself that the two images were getting closer each day. I also had some numbness to my upper lip, I could not bare my teeth, and my skull felt strange when washing my hair. My hands, too, felt odd. A sort of loss of sensitivity. On the other hand my fitness was improving each day though I still did not feel capable of jumping or running properly. I sort of waddled across the road if a car came. I knew I had some way to go to regain my previous level of fitness. I had told everyone that my criterion, for recovery, was to be able to run up the stairs in our house. This was something I had always done, scaling a flight of stairs in three or four jumps. I did not feel able to attempt it yet. I’m equally sure everybody thought I was mad.

It was at this time that I resolved to write this account. The internet had been a source of information to the whole of my family while I was in hospital. Now that I was able, I also started trawling for any snippets that might be useful. Most of the sites dealt with the treatment. A lot suggested that recovery would be slow and lengthy. I found very few positive accounts, where relatives of sufferers could have sought some comfort. It had dawned on me, whilst I was in hospital, that it was far worse for close relatives and family, than for the actual sufferer, me. I had been dosed up to the gills with drugs while my worried family frantically searched for knowledge on my condition.  This account might help someone understand and, more importantly, realise that the condition is recoverable, and that the speed of recovery can sometimes be swift.

It was whilst trawling the internet for information that I stumbled across the lovely health products site. The principal of this company has also suffered at the hands of Miller Fisher Syndrome, twice! Even more significant is that the company markets a product known as Shark Liver Oil. It comes in huge capsules that, at first sight, do not look like they should be taken orally. I have to say I was sceptical about the claims being made. However, on the basis that it was a natural product, and could not do me any harm, I ordered some. I still had double vision when I first started taking them. The double vision cleared up about 3 weeks afterwards. I am no doctor, or scientist, and I cannot say that Shark Liver Oil was the only factor in me recovering my normal vision so quickly, but, for what it is worth, I believe it definitely helped. I mentioned this to a professor Van der Loren, a consultant neurologist. He agreed with my thoughts, that it could do no harm, and might do good. I think a big whole problem with Guillain Barre Syndrome and Miller Fisher, is that there is not much knowledge available on any effective treatment to speed recovery. Anyway, I happily endorse and recommend the product to any future sufferers. It works for me.

One day, about 3 weeks after arriving back in England, I woke to find my sight back to normal. The double vision had gone. Now I could try driving a car again.  My first attempts, on my own, were a bit scary. I should have waited. I quickly realised that my reactions were not back to normal, and I adjusted my driving accordingly. I allowed a lot more time to stop and manoeuvre. My sense of perspective was also suffering, no doubt due to the weeks of double vision and the sticking plaster, as much as anything else. Slowly, though, over the next month or two all of the symptoms faded away.  Except, that is, for the loss of sensitivity in my hands. I am now writing this, almost a year after I was admitted to hospital, and I still have days when my touch is less than definite. In my case this loss of sensitivity is confined to the finger tips. It is much better. I don’t drop things, frequently, like I used to, but every now and then when I touch something it feels strange. It reminds me of the first sensation I had, when I was being brought out of the drugged stupor, in Intensive Care. I remember my hands being flat at my side and I felt the bed beneath me. It felt like plastic sheeting, not linen, plastic! I remember thinking; ‘why have they put me on plastic bed linen? Is it because I wet the bed?’. The only other change is with my sense of smell, and of course taste. Over the past year my taste for wine and beer, and Guinness in particular, has been re-developed, and it is back to normal. I can now delight in full bodied Claret, and the Guinness tastes very good. I worked at it. My improved sense of smell proved temporary. It evaporated, if that is the word, soon after arriving back in England. I had a couple of bad head colds that left me with lingering nasal congestion, and this blocked condition prevented me smelling anything. Being without a sense of smell is something I got used to. It became a source of amusement to Ann, especially when passing a farmyard in the car. I suppose, in that way, it was a bonus for me. Still, I didn't realise just how much I had lost until a week after Christmas 2002. I woke up one morning and suddenly smelt wood. We were living in a timber frame house, and we burned wood in a wood burning stove, so it shouldn't have been strange. It was a heady sweet smell, reminiscent of childhood fires in the woods. It was captivating. Since then my sense of smell has come back with a vengeance. It has been a delight. I know it is boring, boring, but you don't know what you are missing until you haven't got it

So how do I feel? It is a year since my sudden admission to Cork University Hospital. We have finished the house, the garden awaits. I personally feel so very lucky. Lucky, in the sense that my condition was diagnosed accurately and quickly. Lucky to be the right place at the right time, to get the accurate, and quick diagnosis, that I believe made the difference. Lucky to have the Doctors and skilled staff of Cork University Hospital available to look after me. Every day feels precious. We are now living in our new house, in Ireland. It is peaceful and quiet, and is everything we wished for. I am determined to enjoy it, and the rest of my life, but this time putting quality before quantity.

One last thing. If you want to try the Shark Oil Capsules that I mention above click here. to go to their site.