Part 1: January 2016 (aged 66)
I have no recollection whatsoever of the initial stages of contracting encephalitis, nor the early stages of my diagnosis and treatment. Therefore, the first part of ‘my story’ has been compiled from the experiences of my family and friends, together with my medical team.
The first sign that there was something wrong with me occurred early in January 2016: I use my computer on a daily basis and one morning woke up to find I could not remember the passwords I use each day to log on.
Later that day, I accompanied my wife, Carol, to a friend’s house then onward to the local library. At the library, I met my friend David, a councillor for the local church, who became worried about my conversation and phoned my wife to outline his concerns, suggesting an immediate visit to our doctor. My wife’s friend concurred with his concerns following our morning visit. Carol phoned the local medical centre and we attended the following day where my doctor arranged for an appointment at the city hospital with a consultant who immediately organised an MRI scan, the results of which proved negative.
A fortnight later, Carol and I took our two grandsons to the Seabird Centre at Dunbar, where I looked after Ethan (5) and Carol looked after after Jack (2). Apparently I was making nonsensical comments during our trip, and being worried, Carol phoned our son Ross to come over to get his impressions as she didn’t want me to drive the children home. Ross agreed that I was very confused, acting frantic and delusional, uttering irrelevant things, and noticed I was experiencing an involuntary spasm of the mouth whilst talking and had a very bright red face. Ethan also told his Dad ‘Grandad does not sound like Grandad’. To emphasise the point, Ethan had drawn a picture of me with my head on upside down – very perceptive of him.
An ambulance was called, and I was taken to our local hospital, where I was kept in overnight for observation. This hospital does not have a neurological department, and therefore was unable to carry out related tests, advising my wife that I would need transferred to the city hospital for further investigation. However, as nothing untoward was found, I decided I was wasting everybody’s time and discharged myself the following day.
At this point in time I was going in and out of periods of being lucid and then delusional.
Carol was becoming confused as to whether I was seriously ill or not, and phoned our daughter, Juli-Anna, who arrived at the hospital prior to my discharge papers being completed. During Juli-Anna’s visit, I was acting out of character, and was convinced that my iPad had been replaced with somebody else’s in the ward, even though it had a picture of me with Ethan as the wallpaper screen. Juli-Anna raised her concerns with the doctors that Dad was very unwell and she was uncomfortable with the decision to go home. However, this was over-ruled as I had discharged myself. I was told I was unable to drive; however, I dismissed this advice from the hospital which caused more concern for Carol and Juli-Anna.
On returning home, I became delusional again and was unable to recognise objects in my own home. The decision was made to call for an ambulance. However, by the time of its arrival, I had returned to a lucid state and did not feel it was necessary to go back to hospital. Being uncomfortable with this, Juli-Anna decided to stay overnight and at 3 am awoke to raised voices because I had woken up in a state of panic not knowing where I was and could not recognise myself in the mirror (a frightening experience). Another ambulance was called, and on this occasion, the paramedics immediately decided to send me to a different hospital.
On admission, I waited some time to be seen and again appeared lucid, solving numerous Sudoku puzzles whilst waiting. Carol and Juli-Anna stayed with me the entire time, and Juli-Anna would ask each hour if I knew why I was in hospital. My response was the same on each occasion – I couldn’t recall why I was there. When I eventually was admitted to a ward, I had six seizures in the hospital bed, the last of which was witnessed by Carol and Juli-Anna. As I did not regain consciousness, I was immediately transferred to the intensive care unit where I was put into a medically induced coma to protect the brain.
My family were told that I was very seriously ill and that I could emerge from the coma in a vegetative state.
I was then transferred to a different city hospital where the major neurological centre is situated, and a number of tests were undertaken to reach a diagnosis of encephalitis. Four days later when Carol, Juli-Anna and my daughter-in-law Fiona were visiting, the consultant said ‘I don’t often get to say this but I have good news for you – Dave has woken up and is communicating’. He was delighted to receive three huge hugs from the girls.
The consultant suspected that I had auto-immune encephalitis and proceeded with treatment on this basis, whilst sending numerous samples to laboratories for analysis to confirm his theory. It took some seven months before he finally got confirmation that it was auto-immune encephalitis. The final analysis was that I had encephalitis, together with swine flu, and also pulmonary embolisms, which had caused the seizures. All three are potentially life-threatening.
Juli-Anna is very much like me, and decided from the outset that she would be the point of contact for the family, and that she wanted daily updates, which she would share with the rest of the family and friends. Juli-Anna can be very demanding, and some of the staff thought she was a doctor – she pushed for on-going tests to reach a diagnosis and the consultant would regularly call her to review my progress and ask if certain behaviours I was exhibiting were normal.
I spent five days in the intensive care unit, where I continued acting erratically and appeared very hot, four in the high-dependency unit, and a further four weeks in the neurological ward in a room on my own due to the influenza. Throughout my stay in the specialist neurological ward, my family would visit twice daily to monitor my progress. I underwent continued tests during this time, and while I was showing signs of improvement, I was still exhibiting strange behaviour such as appearing wide-eyed, hyper and on occasion forgetting that I had been given dinner the evening before.
On one evening visit, Juli-Anna noticed the mouth spasms had returned, and raised her concerns with the head nurse. In the early hours of the morning, I called Juli-Anna on her mobile talking erratically, hallucinating and convinced the nurses were trying to do me harm. A few hours later, I had a number of seizures in the ward and the intensive care team were called to assess whether I needed to go back into intensive care. Thankfully, I regained consciousness and spent the remainder of the day asleep being monitored by a nurse sitting outside my room 24/7 for my own safety.
My treatment by the NHS was outstanding and I cannot thank them enough for taking great care of me.
Anger is an issue for sufferers of encephalitis and unfortunately there was an episode of me attacking a nurse early in my treatment, due to a hallucination I was experiencing. I have no knowledge of the incident but am mortified that I could do such a thing. The consultant said it was not unusual for this type of illness. During my time in hospital, I tried to keep fit by regular brisk walks up and down the ward corridor, five laps, five times a day, approximately two miles, all the time accompanied by a nurse, desperately trying to keep up with me. The doctors told me this was very unusual for someone with my condition.
In the early days in hospital, I didn’t want to see any of my friends, although many wished to see me. Eventually, I thought it was not fair on them and agreed to visits. I can clearly recall the delight on the faces of the first three friends when they individually saw me. All three had viewed Encephalitis International’s website, thoroughly read the material, and were worried about what to expect. Their reactions where almost the same, such as ‘Thank God, you look and sound like your old self’.