At a time when we should have been excited about the forthcoming arrival of our first child it was all put on hold, as I noticed that Celia's behavior and thinking changed. She got lethargic and decision making was slowed. Initially, we just put it down to being 36-37 weeks pregnant however it was very soon this was not the case after a visit from her midwife. Very soon the GP was called, I was called home and an on-call psychiatrist visited the house. Celia was admitted into hospital, but at that time not a lot of information was forthcoming. A couple f days later, I was informed by the medical staff that they did not think it was a 'mental' issue, but something neurological and they would consult with a neurologist, after the bay was born. They couldn't do alot while she was pregnant. Anyway, Zoe appeared a few days later and after a period of rest under went test inc a MRI. I was told that there was a shadow on her frontal lobe, but it didn't look like a tumour. More rest, more test and then she was referred to the specialist neurological unit in the Queens Medical Centre in Nottingham who concluded the same, but they also did a biopsy and it was only at this point was I told that she was suffering from encephalitis and would be discharged in a few days!!
We survived as a little family unit for a couple of years, but Celia started to have a few issues. She struggled more and more with day to day issues, she struggled to engage with certain tasks and her ability to communicate was slowly beginning to go. We were on our own at that time, with no support from the various agencies. Things started to gather a pace with issues relating to Zoe and her nursery, but after I met with them they were gobsmacked at what had gone on before with her illness, and with hindsight, the lack of support. from here things went forward for us. we had care workers come in to help us, it allowed me time and things settled. But Celia was stil slowly going down hill. Once again, I am writing this some 13years after the events and can say she was in a 'dementia like progression', however the big difference was that this was also spotted by the care team who worked with us.
Celia had a few incidents, so much that she had to be readmitted into hospital, as the doctors didnt know what was going on. During her time at the hospital she was moved into the care of the psychiatric team for assessment from their point of view. In addition this was a secure ward (as she had all ready wondered from her original ward - even thou I told them she would), and the staff would able to full assess her in all manner of daily care and routines. It was more relaxed have a common room with a tv and a kitchen all in situ.
I was asked to attend another meeting with members of the staff to discuss her care and duly turned up. At this meeting was a whole gaggle of people from Community Care, Social Services, Psychology, Psychiatric as well as Neurology - oh and little me. Very scary meeting to attend. It was here that I was informed of Celia's mental decline and how much she had gone down. I can remember them telling me, they set up a task for her to make a ham sandwich. Well, she ate the bread, then ham and then put her fingers in the butter and then ate that. Another test that she did was where she had to plot her way round a piece of paper - going from letters to numbers in ascending order - so A to 1, to B, 2, C, 3 and so on. I know she did this a few years ago as part of her original psychological testing and got ok - upto about letter K, but this time she got on D and then moved to any letter/number at random. Not good :(. The overview of all the senior members of staff was to recommend her to go into permanent care. So I was, being ask to place my wife into care (for her own welfare) at the age of 37 on my part and she would have been abt 35. I said yes - at the end of the day I also had to think about my own welfare/health and that of our daughters. It was something that I thought I wouldnt have to make - certainly not at our age, and one more for my parents. That was a difficult day for me, as then I had to go and speak to all members of the family (inc our daughter) to tell them the news. Zoe would have been about 4 at that time. I was told they would look for a special unit that deals with brain injury trauma for the younger persons and one as close to where we lived (for visitation :) ).
Other than the initial diagnosis of encephalitis some 4 years earlier - I had been given no indication of the possible turn of events. No idea of what was the root cause (other than a viral inflammation of the brain). I think, I am trying to say, that a lack of information and research form the Doctors created this air of uncertainty at how Celia's life would pan out. There was no reassessment - both on a neurological and psychological level - if there was no constant monitoring/assessment going on - how can changes be detected? The whole situation was reactionary to someone who had suffered a brain injury? And I suspect my frustration finally got to me as I complained to the Local Heath Authority. From this meeting, Celia was finally referred to that National Neurological for assessment. From this I was finally given some indicators of the illnesss. Celia's T-cell count (in her lumbar fluid) relating to the measles virus was higher than normal - and the this virus leads to a condidion of Subacute Sclerosing Panencephalitis (or SSPE) and it is a known chronic form. Coupled with her mental and slowly diminishing physical abilities, it showed a possibility of her initial illness some 3yrs previous. The tissue samples from the biopsy showed nothing to back this up thou. However, they couldn't say with any high degree of confirmation as the T-cell count for someone who has suffered with SSPE is about 10 per 100,00, so Celias count was much lower. She was in a bit on 'no mans land'. The second area of interest the National referred to was the inconsistent activity of her thyroid and her iodine levels. This may lead to an auto-immune condition called Hashimoto's Encephalopathy which relates in the body producing high levels of anti-thyroid antibodies. Once again, this may be factor with Celia's condition, but they couldnt say for certain or with any great conviction that this was the cause of her illness, as they were dealing with historical tissue and data samples, but it is a possibility.
Why was this important? If this had been done at the time of illness - ok, it might not have saved her from the dementia like state, but I (and the families) would have been better prepared for the decline. It would have been easier to explain things to people and various agencies earlier, so support would be ready and be more proactive, rather than as I said reactive. Labels, as I was informed by a doctor - dont change the outcome, but they change they way - we - the family and the out world away fro the medics, to how we react and understand situations.
Celia was placed in care home 4 years after her initial illness as she needed virtual 24hr care - she couldnt look after herself. Over the next 3 years, she continued on a down spiral that saw her lose mobility and speech. In July 2006 she passed away following an infection in her gut, they were trying to secure a feeding tube to her, as she had lost the ability to eat on her - all of this from the brain degenerating over the years. May she rest in peace.
As I say, this situation is unique and will not show how all cases of encephalitis will be treated and how they will develop over time.
This year is 10 years since Celia passed away - and 10 years since I started running. So, I am running 12 1/2 marathons in 12 months to raise awareness of the condition and the Encephalitis Society - the work it does and hopefully show that progress is being made in the way we treat and diagnose this condition.