Sunday, 22 February 2015
Sunday 22nd February is World Encephalitis Day
As I have said previously, Ava came along to Derby and attended a meeting with a Consultant and a member of staff from the CEO's office after I raised concerns about the lack of information being passed onto myself. One of the outcomes from this was that Celia would be referred to the National Neurological Hospital in London, one the top hospitals that deals with Neurological conditions in the world, a positive move.
After a few weeks of waiting, Celia was finally moved to the Hospital and I made arrangements for me to take a day off work to go and see her and to meet up with the Doctors there. Off to went on the train to London and walked the shortish way. Finally found the ward were Celia was admitted and a Doctor came to talk to me. They explained I couldnt actually see her that day as she was sedated, something they had to do as she was not settling for the MRI scan they wanted to undertake. The Doctor also explained they had taken fluid samples from the lumbar region for further analysis and they had also requested the samples from her biopsy. The samples may offer some insight, but die to the age (abt 3yrs old) they might not be able to offer all the answers, This just seemed more of the same, but i hoped the specialty of the hospital would provide a better analysis methods and this some diagnosis. The doctor asked me to recount Celias initially illness and how she was over the period time. They did apologies in what seemed a wasted journey for me (in not being able to see her), but they did appreciate the information I was able to pass onto them. Any diagnosis would be passed onto her consultant in due course.
Some weeks later, I had to attend an appointment with her consultant in Derby to pass on feedback from her visit. Firstly, there was nothing they could say as a concrete diagnosis in terms of her current condition other than 'Non Descriptive Dementia'. This was mainly based upon the diagnosis from the psychological assessments resulting from encephalitis. However, from the tests the National did conduct, an area of interest was the T-Cell count in her spinal fluid relating the measles virus. It was higher than a normal persons level who had suffered from measles (a count of 2 per 100,000 compared to 0.1 per 100,000). This was interesting as the measles virus can cause a form of encephalitis called 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.
So, it is a possibility that Celia suffered from SSPE or Hashimotos Encepalopathy (HE). Both are rare & chronic neurological conditions. I think, and it is my 'non-medical' thoughts that 1 lead to the other. Celia may well suffered from a variation of SSPE initially, but with the weakened brain capacity it lead to the usual activity of her thyroid gland and thus the HE. As I say, I no Doctor and certainly no neuroscientist, it is my thoughts only.
If you need more information about encephalitis, click on the jigsaw pieces at the top of this page, it will take you to the homepage of the Encephalitis Society.
For the support that the society has offered to both Celia and myself - as well as many countless others, I am running in the London Marathon this year to riase much needed funds so they can carry on with the work. Please, if you can, donate some money by clicking on the picture of myself, near the top again. It will take you to my fund raising page.
Marathon Training Update:
63days to go, or 9 weeks. Last week is what I call cut back weel. A week where the training is a little easier to help the stress on the body. Also managed to fit in a trip to the physio to have a sports massage to help the muscles. This week, back to normal with a total of 30miles for the week with the LR of 15 today. The next 6 weeks will be make or break as the mileage will ramp up.
Sunday, 8 February 2015
It is very hard to say which period was the most stressful or difficult as there were so many. I think looking back now, the period 3-4yrs post illness was a very challenging year for all of us. It was during this time that Celia's mental abilities dropped quickly and the tasks she could do before hand became more tricky for her, including making a cup of tea or getting dressed. Thus I would have to help her on many days. Her ability to care for our daughter was also being an issue and this came to a head when, after a number of incidents, it was recommended that she shouldnt have 1-1 contact with our daughter anymore. Thus she was at home on her own now, and I suspect this would not have helped her at all and probably led to an increase in her depression. (she wasnt diagnosed with it, but reading about it is fairly common with the illness). All this led to her re-admittance to hospital (which I mentioned on the previous blog). 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 Celias Mental decline and how much she had gone down. I can remember then 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 randon. 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 :) ).
Ava (again - my 'knight in Shinning Armour') offered to visit the care home to ensure that it was suitable or if I had any concerns about it - wonderful stuff. Althou I never asked her to visit it, it is the thought that counts and I am sure she would have done so if I had asked.
If anyone is reading this and thinking....'oh shit, thats what encephalitis is like', please remember this is what I saw and experienced with my wife. I am sure, if my memory serves me right, that at several times Ava said she couldnt remember a case like Celia's. In terms of the lack of diagnosis and the steep downward, almost dementia like, curve down hill. Her case was unique, and I am sure that many cases are.
If you have read this and would like to support the Encephalitis Society so they can support others (like Celia and myself), then please click on this link and donate to my fund raising page. I am running the London Marathon to aid the Society and the worth they do.
Speaking of the said event, it si only 76 days away - 11 weeks. Training has gone well, hitting a total of 153 miles and a long run this weekend of 17miles. Just hope it will get a warmer soon, felt the cold today.
All this training is for the Marathon for the charity - so, please sponsor me!