As I sit here, the day before the London Marathon trying to sort myself out for the great event, I thought, Ive not blogged for a bit, what I do I mention. Looking back I talked a lot about Celia's illness and the various stages she went through. I have to say thou, the casualties to this were not just Celia her self, but indirectly myself and other members of our various families.
I am not perfect, after all no one is perfect in this world we live in. But I made a number of decisions over the time of her illness and subsequently, which might other people would have thought differently. Even now, looking back in the cold light of an April morning and with the added benefit of hindsight I would have made some different ones.
I had information, advice and opinions from everyone firing at me, some very personal based, others just thoughts, some from medical and other related professionals. It was a lot to take on board. If anyone is reading this and thinks what would they do. One piece of advice I would offer is: find someone your trust 100% to talk to. Tell them everything you are feeling and what you have been told, the pros and cons. I am sure they will tell you what they think,but more importantly they will allow you to do what you want without any ill feelings. They will go with you and will not take it personal if you do not follow there advice. For myself, this was my sister. She had her opinions on this and that, but supported me in what I decided (and still does to this day). In many ways, it has made us a better bro n sis!
For myself, in the years when Celia was at home I did pretty much everything: looking after her, our daughter, running the house, shopping, ironing, booking doctors appointments.....the list goes on. It was only after Celia was in hospital did I feel how much all this had taken out on me, and my body just said - ok, enough is enough. Within in a month I was off ill work for a week, that week ended up being 3 months. I only went back to work as I found another job without the same pressures as my previous on, I was suffering from exhaustion, depression and anxiety. Doctors said to me, not surprising really. My road back from the depression wagon was long, and running has helped, it has been the best medicine for myself. I started on a bit of a whim. I remember coming home from hospital with all the paperwork after she had passed away and thought, 'sh** got a funeral to arrange!!' I also didnt want to be in the house at that time with those thoughts. I was driving past an outlet village, popped in, stopped at the Adidas shop and bought a pair of trainers, T shirt and shorts. Got home and went out for a 3mile run. Ok, it was very hard work and suffered, but it gave me air and some time to think. From those 3 miles, I run about 3 times a week, taken part in 6 marathons to date (no7 this weekend) and found it best way to get rid of stress and generate my time.
Saturday 25 April 2015
Tuesday 10 March 2015
The Final Countdown
Sorry for the short delay in updating the blog, did plan evey 2 weeks, bit of a miss, but other family issues to deal with.
So, just to get you all back on track an to summarize Celia, the good lady, fell ill with an unknown cause of encephalitis, during the next 4 years she generally had a downward rollercoaster ride in her mental abilities resulting in some incidents that had her re-assessed. From this it was felt it would be best for both her and myself (& our daughter) if Celia went into care. She was also referred to the National Neurological for tests and from this we were offered an possible insight into the initial illness and subsequent downward spiral. Ether or a combination of SSPE and Hashimotos.
Celia was admitted into a specialist unit that deals with younger people that have emotional and mental issues following a brain injury. She had her own room, staff were pleasant and kept a good eye on her. Over the next few years thou, her physical well being was also starting to be an issue. Her ability to walk was suffering, was becoming more like a shuffle. but they kept her going as long as they could. In the home, they could look after her and react much quicker when issues like this a rose. I remember visiting her at some stage and she was not well, just a cold, but it seemed to devastate her. She was in bed, and looked like a very ill old lady, barely any movement and no response to myself or Zoe as we entered. It was pretty grim to see her. Feedback from the staff also said they were having to feed her more, as he own ability to use the utensils had reduced, and the cook was having to be cut up into small pieces. Soon after this I had one of the regular appointments with her Neurologist and I fed back to him what she looked like and the general well being of her. He then told me that this was the start of the final run for her and to be prepared. I came out of the meeting wen back to work and sat down and just thought. The manager I had at the time was a very understanding man (being a family man at heart) listened to me and sent me home, I was in no mental state to work.
On the 22nd July 2006, some 7 yrs post initial illness, I got that final phone call to say that Celia had passed away following on from complications. She was in hospital undergoing minor surgery to have a feeding back fitted when she got an infection/inflammation in her intestine system. this is bad for a lot of people, but someone who is weak, even with antibiotics, she could not fed it off. A couple of weeks later we (and the rest of the family) said our final farewell to her. I manage to arrange to have her ashes laid at Elvaston Castle in Derby (due to family connections). It has beautiful woodland grounds, and she like it there. Was a place we took Zoe while Celia was still at home, and were Zoe could run, walk and bike - a small time feeling like a family.
Celia suffered greatly in the last few years, but with better understanding of encephalitis others will not. With better diagnosis and research, doctors will understand more and more about this illness and be able to provide better care plans for those who suffer. For the general public, being aware that a simple cold virus can lead onto something much more devastating will help save others. Please, if you can, help me by sponsoring me as I run the London Marathon this year for the The Encephalitis Society. To say thank to them in helping me, but also to help others fight this illness, to understand this illness.
SPONSOR ME HERE
So, just to get you all back on track an to summarize Celia, the good lady, fell ill with an unknown cause of encephalitis, during the next 4 years she generally had a downward rollercoaster ride in her mental abilities resulting in some incidents that had her re-assessed. From this it was felt it would be best for both her and myself (& our daughter) if Celia went into care. She was also referred to the National Neurological for tests and from this we were offered an possible insight into the initial illness and subsequent downward spiral. Ether or a combination of SSPE and Hashimotos.
Celia was admitted into a specialist unit that deals with younger people that have emotional and mental issues following a brain injury. She had her own room, staff were pleasant and kept a good eye on her. Over the next few years thou, her physical well being was also starting to be an issue. Her ability to walk was suffering, was becoming more like a shuffle. but they kept her going as long as they could. In the home, they could look after her and react much quicker when issues like this a rose. I remember visiting her at some stage and she was not well, just a cold, but it seemed to devastate her. She was in bed, and looked like a very ill old lady, barely any movement and no response to myself or Zoe as we entered. It was pretty grim to see her. Feedback from the staff also said they were having to feed her more, as he own ability to use the utensils had reduced, and the cook was having to be cut up into small pieces. Soon after this I had one of the regular appointments with her Neurologist and I fed back to him what she looked like and the general well being of her. He then told me that this was the start of the final run for her and to be prepared. I came out of the meeting wen back to work and sat down and just thought. The manager I had at the time was a very understanding man (being a family man at heart) listened to me and sent me home, I was in no mental state to work.
On the 22nd July 2006, some 7 yrs post initial illness, I got that final phone call to say that Celia had passed away following on from complications. She was in hospital undergoing minor surgery to have a feeding back fitted when she got an infection/inflammation in her intestine system. this is bad for a lot of people, but someone who is weak, even with antibiotics, she could not fed it off. A couple of weeks later we (and the rest of the family) said our final farewell to her. I manage to arrange to have her ashes laid at Elvaston Castle in Derby (due to family connections). It has beautiful woodland grounds, and she like it there. Was a place we took Zoe while Celia was still at home, and were Zoe could run, walk and bike - a small time feeling like a family.
Celia suffered greatly in the last few years, but with better understanding of encephalitis others will not. With better diagnosis and research, doctors will understand more and more about this illness and be able to provide better care plans for those who suffer. For the general public, being aware that a simple cold virus can lead onto something much more devastating will help save others. Please, if you can, help me by sponsoring me as I run the London Marathon this year for the The Encephalitis Society. To say thank to them in helping me, but also to help others fight this illness, to understand this illness.
SPONSOR ME HERE
Sunday 22 February 2015
An Answer, of sorts.....
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
Difficult Times
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!
Ta
Sunday 25 January 2015
Charity Support and Winter Running
13 Weeks to go.......its creeping up is the London Marathon, to sponsor me to raise money for the Encephalitis Society click here!
Charity Support
We all know the big charities and a very good idea of the work they do. But what about the smaller charities, what do they do? How can they help people? I hope here to offer once insight into the support they do and it is something I very much appreciated at the time. My wife suffered some 3yrs post illness a downward decline in her mental abilities putting more stress on myself. This period was really bad for all of us, as none of knew what was happening or why. My wife's capabilities finally required her to be reassessed in both her neurological and psychological areas and was eventually re-admitted into hospital as a result on these on going assessments.What I found then was the lack of information that was forthcoming from the various medical staff. Very little was passed onto myself and I only gathered up mutterings from the nursing staff. I felt I was left out of the loop regarding my wife's assessment and everyone we knew was asking me what was going on, and of course I had no answers.
I think it was a combination of frustration, desperation and anger that I contacted the CEO of the Trust to complain about the lack of information that I was getting (or not getting). A meeting was arranged with a member of the CEOs staff and one of the Consultants. I was also in contact with the society as well to try and get more info about what else I can do and I mentioned about this meeting that I had arranged. Ava kindly volunteered to attend the meeting with me. She arranged to come to Derby and I met her the night before and we discussed at some length my wife's full case. The next day we went to the meeting were I aired my views and the Consultant replied. At various points and at the end, Ava added with her thoughts. This was great to hear. Someone who has a good understanding of this condition and the possible/various options in terms of diagnosis replying to a Consultant. It seemed to be 'fighting fire with fire'. From this meeting, Celia was referred to the National Neurological for further assessment, a re-assessment with the neuro-psychologist who first assessed her 2yrs precious and a commitment to keep myself better informed. For me, to have Ava give up hr time in meeting with myself as well as attending the main meeting was something I can only say a very big thank you to her for. It felt for myself, here is someone who is on my side and will fight for a better understanding of what Celia is going through, and thus hopefully for myself to help plan what to do.
All in memory of Celia.....(and a wee baby Zoe)
Winter Running
Marathon training is not easy. For myself it is a 17 week programme - that's about 1/5th of the year dedicated to 1 run. At this time of year to go out in the evenings (or mornings) when its is dark and very cold is not nice. At times, seems a better idea to stay in with a cup of coffee, but no - training must go on. However, there are road races that do occur and last weekend (19th Jan) I had hoped to run a 1/2 marathon in Cheshire. Several reasons, based in a village where I went to school, a good race organised by a small club. on the morning it was a lovely cold, crisp misty morning and off I went to the race HQ. Meet some old friends, said hello and waited. Got told that the start had been delayed to due a number of places the ice had not quite cleared. So, a bit more waiting about. Then we got the sad news that the race had to be cancelled on recommendations of the Police. It was fine for us runners, but the concern was cars and how they would go on the ice, esp with abt 2000 runners on the road. These things happen and safety does come first. Head back to my sisters, where I promptly change and then go out for a run around hers - so all was not lost.
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| Cheshire on the weekend 18th Jan - lovely |
Summary
So far, 4 weeks total of 93.6miles, ave of 23.6miles, kept up the 4 runs a week and only abt 4miles behind the target (due to race cancellation), Thats the base training done, keeping going through the dark & the cold. The mileage will creep up from now on.
Sunday 11 January 2015
15 weeks and counting......
It 15weeks to the Virgin London Marathon, one of the greatest sporting events in the World. An event that seems to capture the hearts, minds and bodies of the UK. While it may not be my first marathon (that's was Edinburgh 2008) it is my first London Marathon. I said many years ago that I would not do any more charity runs except (I) A marathon in my 50th year and somewhere a bit different, or (II) London - well it is London, and this year, on my 49th birthday (so very close to the 50 lol).
Why run for the this charity? This is a very personal thing for myself and my daughter. My wife suffered from this illness some16yrs ago, yes at the time she was pregnant. So a time that should have been great joy was a time of stress and worry for very different reasons. Celia's mental behaviour at that time altered, became strange, reasoning and logic went out of the window. A lot of this was put down to stress being 36weeks pregnant. After some assessments, I was told it wasn't a mental issue and would be referred to a neurologist, but until the baby was born, they couldn't do a lot. 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!!
A couple of years later as I balanced various issues, I finally found a charity that offered some support. I booked and attended a conference/meeting session in York (chance to get away as well to a beautiful city) and it while at this meeting that I met/saw the full scale of encephalitis and the aftermath it plays. At this small meeting I saw that we weren't clearly not the only family who have suffered from this illness and luckily met one of the speakers who explained in 2mins, more about my wifes potential issues than any Doctor or psychologist had in the previous 2 years. In many ways presented a great relief to myself.
This is only a brief and small into why this charity has helped me, and why I wish to help them. I will add more incoming weeks about our we suffered, how the charity helped (esp Ava) and what they do.
Please, if you can donate, do so here: Fundraising Page
Charity Page
Why run for the this charity? This is a very personal thing for myself and my daughter. My wife suffered from this illness some16yrs ago, yes at the time she was pregnant. So a time that should have been great joy was a time of stress and worry for very different reasons. Celia's mental behaviour at that time altered, became strange, reasoning and logic went out of the window. A lot of this was put down to stress being 36weeks pregnant. After some assessments, I was told it wasn't a mental issue and would be referred to a neurologist, but until the baby was born, they couldn't do a lot. 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!!
A couple of years later as I balanced various issues, I finally found a charity that offered some support. I booked and attended a conference/meeting session in York (chance to get away as well to a beautiful city) and it while at this meeting that I met/saw the full scale of encephalitis and the aftermath it plays. At this small meeting I saw that we weren't clearly not the only family who have suffered from this illness and luckily met one of the speakers who explained in 2mins, more about my wifes potential issues than any Doctor or psychologist had in the previous 2 years. In many ways presented a great relief to myself.
This is only a brief and small into why this charity has helped me, and why I wish to help them. I will add more incoming weeks about our we suffered, how the charity helped (esp Ava) and what they do.
Please, if you can donate, do so here: Fundraising Page
Charity Page
Tuesday 16 December 2014
18 weeks and counting
Yep, just over 18 weeks and counting before I ambark on another marathon. Yes I know running a marathon for me ain't new, but this is the big one, this is the London marathon. April 26th, starting at Greenwich and then finishing on the mall. So, will try and do a weekly blog about it all, summarise the training and the charity I am raising money for.
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