Richard's Story

I had just started a new job at the beginning of 2008 and was looking forward to our holiday on the island of Fuerteventura at the end of January. About a week before we were due to travel I contracted sickness and diarrhoea and as the winter vomiting bug was prevalent at that time assumed that is what I had. I was sufficiently recovered to fly and the holiday began on Wednesday 30th January. The following day we went out for an early evening stroll which unusually tired me out. I put this down to the fact that I had hardly eaten for nearly a week. We just relaxed during the Friday as I was still feeling a bit lethargic and then made ourselves ready to go out for our evening meal. At this point my wife remarked that one of my eyes appeared to be centrally fixed even if I turned my head. A bit unusual but I thought no more of it. During the meal my coordination seemed to go a little but again I didn’t think anything of that either. On our way back to the room a ball flew out of some tennis courts and I couldn’t catch it which was a bit unusual as I am a keen sportsman. I didn’t put all these things together and slept on it. When I woke on the Saturday morning I had no energy, my eye was still not working and I felt terrible. At Lunchtime my wife called out the local Spanish doctor to see me. He examined me carefully and he knew something was wrong but he clearly didn’t know what. I was advised to go to the local Hospital which I did with a piece of paper and some Spanish notes. I then collapsed into a wheel chair before I was assessed by the doctors. On Saturday evening I was admitted and stayed for a week. During this time I was checked for every disease known to man and beast, I had an MRI scan, a lumber punch and countless blood tests all to no avail. By Thursday I was very weak, hardly able to see or talk, confined to bed and finding it very difficult to eat solid food. Luckily the surgeon was in contact with the John Radcliffe Hospital in Oxford (England), which is the best neurosurgery hospital in the country. Between them they figured out that I probably had Bickerstaff’s encephalitis and I needed to be in England sooner rather than later. I was flown home on Saturday by special air ambulance and taken straight to the John Radcliffe Hospital to start my road to recovery. I was later told that if I had spent a few more days in Fuerteventura I would probably not be here now.

On arrival at the John Radcliffe I was assessed again and it was determined I probably had Miller Fisher as well as Bickerstaff’s encephalitis. As my condition was pretty serious I was put on a drip and given a feeding tube, as I was struggling to swallow. This involved sniffing a tube up my nose then swallowing it; a thoroughly unpleasant experience given my condition. I then had to be x-rayed to ensure it was in my stomach. I then had to endure another lumber punch before I could be settled for the night. By now I had no control over my body, I was unable to sit or stand or even move up or down the bed. I couldn’t even reach for the bell to call the nurse. I had to have my blood pressure and a lung function test every six hours day and night. I was then given the only treatment for the condition IVIG for a period of 5 days to rebalance the antibodies. Over the course of the treatment my condition stayed about the same; I couldn’t do anything for myself and I had to be lifted out of bed using a hoist just to sit in a wheelchair. I still had the feeding tube which was keeping me alive. After about 10 days the tube was removed and I was allowed to eat soft food so that I didn’t choke on anything solid. I had lost nearly 20kg (3 stone) in weight since I was admitted to Hospital so I was also drinking 4 high calorie milk shakes a day. I was looked after by 3 physiotherapists who gradually managed to fire my body back to life bearing in mind I found it nearly impossible to even sit up unaided. We started with the basics like sitting up, reaching for things and eventually standing up. I also had to learn to write again. It was strange to be given a pen and not be able to write, something I had been doing since I was probably 4 years old. My brain knew how to write, so did my hand but the signal wasn’t getting through. After about 5 weeks of intense physiotherapy I could stand with the aid of a frame and I could just about manoeuvre myself out of bed to my wheelchair unaided. I was then allowed home for a night, the first time in about 6 weeks. I was still in a wheelchair as my legs were still not strong enough or working properly so it was a testing time at home both mentally and physically. I was allowed home the following week as well and again it was difficult because I felt I was a burden on my wife and family. A day or so after my home visit I managed to walk for the first time although I was being held very tightly by 2 of the physiotherapists but at least it was a start and I knew that I would make a reasonable recovery as I had achieved 1 of my goals. It was then decided that I should be moved to the Oxford Centre for Enablement to continue my recovery as they are a specialist rehabilitation centre.

On arrival at the OCE I was still in a wheelchair, unable to walk but able to do a few things for myself. I was assessed by the senior nurse and asked what my aim was. Bearing in mind I still couldn’t walk I said “I want to be out of here by the end of April.” It was the 25th of March and she looked at me as if I was from Mars…. After more assessments I was allocated another physiotherapist called Jo. She worked tirelessly with me, sometimes having to reign me in and slow me down in my quest for fitness. I had a structured programme which involved gym work, physiotherapy, occupational therapy and swimming. Finally on April 10th I took my first unaided steps in 10 weeks and I knew I would soon be able to go home. Over the next 3 weeks I mastered stair climbing, cooking and most of the routine things I had previously been able to do. My walking improved from a sort of stagger to nearly (but not quite) normal and I was told I would be discharged as an inpatient on Friday 2nd May. I nearly made my goal of April 30th but that was a Wednesday and they only discharged on a Friday so I guess I did prove the nurse wrong in a way. Because of Jo’s connections I started to attend a specialist gym to fully regain my strength and fitness and my life back. I worked out 3 times a week for nearly a year and then once a week for another 5 months.

Looking back now over 3 years since I was ill there are 2 people other than my family that I owe my recovery to. Jo got me to a level of fitness to be able to leave the Hospital and she also introduced me to Andy the gym master who oversaw my push for full fitness. Without these 2 wonderful people helping me my life could be so much different now. Saying that, I haven’t made a complete and full recovery. I still suffer from perceived head sweats, pins and needles in my left foot and lower left leg, stiffness and aches through my whole body and my vision is not perfect, but it could have been so much worse. I can still do all of the things I used to do before I was ill, some of them just a little slower. I even go out running at least once a week, usually about 5 to 6 miles so it’s not all bad.

As it turned out I had contracted food poisoning and not the winter vomiting bug as I thought I had. After all the tests it turned out to be the Campylo-bacter strain which is very unpleasant. So when all is said and done it was something I ate that caused me all these problems.