Alan's Story The story I am about to tell centres on the aftermath of encephalitis and how it effected my wife, Celia, and I. How I tried to do my best for her, to try and keep some sense of normality as we went through our lives, following her initial period of illness. I do not say that I am right or wrong, but I do say that I did, at that time, what I thought was right. To put some perspective on things I would like to fill in a little bit of background into the state of our lives just prior to her being ill. It was Christmas 1998, and a time of year that should have been a generally happy one, after all who can’t be happy at Christmas? For my wife and I it was going to a good one as she was entering the final few weeks of her pregnancy. It was soon after this that the nightmare started. My wife started to spend longer and longer in bed. Now I thought that she was very tired. After all she was the best part of 37 weeks pregnant so this was nothing really unexpected. What was different thou, was she then started to spend longer and longer up at night time. It was almost as if her clock had moved forward/backwards by 12 hours. Over the next few days her behaviour seems to become stranger – not dangerous, but more uncertain about things. Ask her about dinner – it was all up to me as to what we were going to have, or she would say a sandwich all the time. So the New Year arrived, and with it I had to return to work. The behaviour of my wife had not altered, it was still different, not usual and all this time the worry in me was increasing as to what was going on? I contacted one of the community midwives who had over seen my wife’s pregnancy to go and visit her, to have their input into her state of mind. The midwife rang me back to explain that she had arranged for the GP to visit her and I should make my way home to meet up with the Doctor as well. I arrived home, and shortly after the Doctor arrived and went through the checks that are required, and started to ask a few questions like: what day is it? When did World War Two start/end, and questions such as these. They then told me that they would arrange for a Psychiatrist to visit my wife to assess her, as they thought that something was not right! So we waited and the Psychiatrist arrived and conducted similar tests to the GP, with the same result. He thought that it may be stress related, at a subconscious level, but with the behaviour of her walking around the house at all hours (meaning I was getting no sleep) together with her being on her own a lot, he suggested she should be admitted into the Mother & Baby Unit. This unit deals mainly with new mums who have some issues to deal with, but it is a secure unit on the hospital grounds, thus if she went into labour they can arrange very quickly for her to be transported to the Delivery Unit. So onto the 12th January, and the team looking after her wanted the birth to be induced. They were getting very concerned about her mental health, and until he baby had been born they could only do very limited tests. This was eventually agreed by the Gynaecologist consultant and so preparations were mad for her to be induced. Finally, at 12.22pm on 13th January, a little baby girl was born to a proud new Dad, who was also deeply worried and concerned about his wife! So, there we are: a lady who has given birth to a baby girl but is not with it, a new Dad worried about his wife but with the joy of a new child. I would like to highlight that my wife at no time showed any of the normal signs or symptoms of encephalitis; fever, headaches, and other flu like symptoms. She was happy, especially when you talked to her about the baby, but it was just her behaviour and strange ways of doing things that got me all worried to be begin with. After the birth of the little one, the Doctor looking after my wife planned for her to have a few days rest, and then consult with the Neurology department to co-ordinate the next stage in assessments and testing. The tests she had to undertake included: blood tests (can’t remember all the things they were looking for), EEG, Lumbar Puncture (for spinal fluid), co-ordination test and MRI/CT scans. After a about 2 weeks of all these I was called into the Doctors room to be told that, from the MRI scans, there is something affecting the frontal lobe. It is seen clearly on the scan. What it is, we do not know, but we are quite sure that it is not a tumour. Great news! The plan was for her to remain in the Mother & Baby unit for another 6-8 weeks. During which time they will be able to assess her as she recovers from whatever and the pregnancy. After that, they would undertake more scans, and then plan the next course of action. So more waiting! After 8 weeks of waiting, the second MRI scan was undertaken and then another meeting with one of the Doctors. The news from the scan was: the shadow was still present, but it had moved slightly (eh?) and they wanted more investigations with the specialist Neurological Team at the Queens Medical Centre (QMC), in Nottingham. This is the largest hospital in the east Midlands and has the specialist unit that was required. A move forward I thought. The downside to this would be that I would have to take Zoe home, and make arrangements for her care while I was at work. All this was passed onto me one day, and then two days later my wife was going to be moved. Nice communication and planning!! I made arrangements for Zoe’s care, so now my timetable was this: Up, breakfast, feed Zoe, take Zoe to carers, go to work, pick up Zoe, go to QMC to visit missus, then home, feed & bath Zoe, put her to bed, tea for me then bed. Oh, and I was up at least once during the night to feed Zoe! I wonder why was so tired? My wife on the other hand thought this was great, I mean she was being looked after all, being fed. However, she did want to go home by now, and the tests they were doing were the same as before. Blood, lumbar, EEG and more scans! While the doctors were deciding what to do, they started to allow Celia out for the day, to go home with Zoe and myself. I could then report back on how she had coped with being at home, especially as she had been out of the house for the best part of three months by now. This was a magical time to be honest, taking the two of them home. Ok, it was only for a few hours but it was a start. While she was at home, my wife knew where everything should have been: the pots & pans, the cupboard for the tins, the fridge, where the bedrooms were, where the toilet was. Now this might not seem important, but it was pleasing that she could remember these things. She also wanted to help around the house: even adventuring as far as making a cuppa! All of these were reported back to the Doctors at the QMC, and they seemed pleased with the feedback. However, they were at a loss from the test results as nothing could be clearly defined. The next stage, they suggested would be a biopsy. Now this in many cases is a very simple operation, but seeing as they wanted to take a bit of her brain, it was not that straight forward biopsy operation. It was a brain operation, so call forward the Neurosurgeon, he seemed to explain it as a very straight forward procedure, which it probably was for him. After the surgery, the Neurosurgeon popped up and informed me that the operation went well, they had cut through the skull in the correct area, and obtained a good sample of tissue. He also commented that the tissue did not look cancerous, and he thought it was inflamed. The tissue was sent down to the path lab for investigation. The results came back the next day as she had suffered from an inflammation of the brain (encephalitis), and they had started to administer some anti-viral drugs. After that, she would be released from hospital. They did suggest that I contact Occupational Health for some help, as it is clear Celia was having a few problems. This is where I have to start to moan and groan about things. Just to be discarded out of hospital without any support services was totally amazing. After all, she had difficulty in dealing with situations, and neurological conditions take time to recover – and even the one does not fully recover. I know I am not medically qualified, but I knew enough that this was going to be a struggle, and help from a number of organisations would be needed. But, nothing was mentioned. I had to speak to Social Services: Nothing they could do! I suspect (and it is my belief only), that they could not actually define her as having problems, as her mental abilities were manageable and marginal. They seemed to forget that we had a three month old baby in the family at that time! Occupational Health did nothing, even thou I phoned them! There was no referral to the Mental Health Trust in the Area. To say we coped, was an understate, we just got by day to day, from varying support from various members of our families. I had to plan, organise everything, and Celia would just join in really, a basic helping hand. She did try and go back to work, but that became a struggle as well for her. It didn’t work out for a number of reasons, and she was made redundant about six months later. Things started to take a turn for the worst at the three year mark (or thereabouts). There was some signs that my wife was finding life difficult at home, on her own with only the little to keep her company. I was out working, and coming in to find things like; Zoe having tea at 6pm, I once found the tumble dryer full of clothes – with washing powder in. The missus thought it was the washing machine. With these type of events happening I called the GP, and between us thought it might be better to get Zoe in Nursery at the local school. This would give the wife a break from having a 3year old running round the house, and it would provide Zoe some constructive play things to do. Arrangements were made, and so once again I had to plan everything out. What time to leave to get to the school, the route and what time to leave to pick Zoe up after the nursery session. Things, as far as I know, where going well, until I had a phone call from the school – about four weeks into term. I was called into a meeting with the head and the nursery teacher. At this meeting it transpired that the Surgery staff had not mentioned the reasons why Zoe was attending the school or any of the medical problems that my wife had faced. I was surprised at this, but from the information I gave to the staff it seemed to make sense. They expressed concern at the way my wife was dealing with Zoe pre & post school, they had also heard concerns from other parents about the behaviour of my wife, and the way she was talking to Zoe. This meeting was far from negative, as the staff at the school seemed to want to help. They arranged for Social Services to visit (again), but this time, seeing as the school was raising the issue then they would have to act. They also said they would play an active role in supporting Zoe as she was behind in some of the expectations (whatever that means). So Social Services visit, from both a child officer and an adult officer. They then spend the next few weeks visiting, talking to me wife and trying decide what to do. After several sessions of assessment, talking to the staff at school and to myself, it was deemed that Celia couldn’t have one-to-one sessions with Zoe any more, as she was struggling. As for my Celia, it was increasingly more and more noticeable that she was struggling with things. Her speech was becoming more difficult. Some of the tasks that she could do earlier were starting to become more difficult – like making a cuppa. I suspect (but not proven) she was depressed either because of the illness in the first place (which is very common), as a result of these task becoming harder for her and now having Zoe effectively taken away from her. She said she understood why, but it still must have hurt her! Nearly four years post the initial illness, I was coming home from work, picked up the little one, and driving back home I saw my wife walking in the street. I stopped and picked her up to find blood all down her face and without her glasses. All she could tell me was that she had fell!! Other events that followed included her walking out of hospital and all the way home (a good four mile walk), and then finally I came home to find her collapsed on the floor in a state of complete confusion. On the phone to the GP, they came (the surgery was/is only five min walk away), and they called for an ambulance! I had to keep an eye on her, keep her still etc! Oh, and got my neighbour to look after Zoe again. They admitted her, and wanted to run a few tests (:-S). A couple of days later, they said that her heart was beating a little fast and caused her to have a small faint. They wanted to send her home. I said no!!! I explained she needed a full assessment of her needs and abilities, explained the ‘walk home’, the fall, the inability to look after herself etc. I passed on the needs of Social Services and the GP and they finally gave in! They took her in.I have to say, this was the lowest point for me. I didn’t know what was going on, all the services just didn’t seem to care for her, we had no knowledge of the what caused the inflammation in the first place. It was a week before Xmas (and her birthday). Had a little girl to deal with. I think I can safely say I was at my wits end! It transpired that what had caused my wife to collapse was due to her consuming half bottle of whisky (and it was my Glanmorangie). Seriously though, it begs a question - could she differ between an alcoholic drink and a glass of apple juice. After all, that was also in the cupboard along with the whisky. I have mainly talked about how the illness affected my wife, but I think I had better talk about me for a little while. Basically for 4 years, I was looking after Celia, bringing up Zoe on my own and holding a full time job. I cannot really say what occurred at work over those 4 years but I do remember one day when everyone wanted me to do something, I thought I have had enough!! Called my GP for an appointment and went to see them. They commented it was nice to see me, for me rather than my wife! My GP and I talked for a while about me, and things and they thought – yep I needed a pick me up, and time out for me! I was off sick for three months after that. While I was off sick I had to go to an important meeting with a number of people regarding my wife’s needs & care. At this meeting was a consultant psychiatrist, member of staff from the neurological team, psychology, community support workers and a few more. At this meeting I was informed of all the various tests they had done, and the out of the tests. They clearly showed a significant deterioration of her mental abilities, and her ability to look after herself. To the extent that it is clearly dangerous for her to be left on her own. She now had dementia like signs and symptoms. She needed 24 hour care (the Docs saw that there were now problems with her sleep patterns). Thus I had to make a decision: let her come home – with support put it will increase the strain on me and for Zoe to see her mum continually decline, or authorise her to go into a care home that will be able to provide all her needs. I opted for the second. During her time in the care home, she continued in a downward spiral, with reduced ability to move, her speech limited to very short sentences. She was finally referred to the National Neurological for further assessment to try and offer some answers to why this level of deterioration had occurred. Finally, we might have some answers, but sadly, as is the case, we only had partial answers. They indicated that she had suffered from a rare form of Encephalitis called Subacute sclerosing panencephalitis (SSPE) which occurs from the measles virus. Her antibody count in the spinal fluid was higher than normal, but not as high if some had suffered from SSPE. They also expressed interest in the activity of her thyroid and the inconsistent levels of hormones, and she could have suffered from Hashimoto's Encephalopathy. Sadly, her fight with the condition finally came to an end in 2006 when she suffered from inflammation of the intestine – as a result of her continual decline. So, where does my involvement with the Society start? I think it was back in about 2000/1 and I was searching on web for anything about the condition when I came across the Society, and found my way to a meeting in York. It was here that I realised we are not the only family in this place, of a rare neurological condition. It was also interesting to hear the variations of the illness and the various effects that each have had to face. A little later, when I had real issues with the medical profession and their inability to communicate, I called upon help from the society and Dr Ava Easton kindly came down to Derby to help me. We met up and I talked to Ava about Celia and the situation we faced, and I think even she was amazed at the lack of care we faced. At the meeting with Celia’s Consultant and Rep from the CEO Office, Ava was brilliant in fighting fire with fire – asking them questions as to why they decided to do certain things. It is something I am grateful of Ava for. I remember coming home from the hospital after Celia had passed away thinking, I have a funeral to arrange, but didn’t want to sit in the house. I drove into a sport shop, and walked out with T shirt, shorts and running shoes and went out for a run. Three miles, and I struggled – but I felt better mentally after it (Zoe was away with my sister at this time). Thus I started to run once a week, then twice – and haven’t stopped since. In 2008, I ran a 10K for the Society, a Half Marathon and finally my first marathon (in Edinburgh) in 2009 – all for the Society. More recently, 2015, I ran the London Marathon as part of the ‘Dream Team’ and even last year did my own personal challenge of running 12 Half Marathons in 12 months (2016 – my 50th, 10 years since Celia passed away and 10 years of running). My support does not stop – I am a Volunteer Support Worker now and…. whatever Philippa & Co asks me to do (within reason!!).