Sunday, 18 September 2016

'The Summer sun is fading....... the year grows old.' From Forever Autumn, War of the Worlds by Jeff Wayne.

As I progress my little challenge and enter into the final stretch and the twilight of the 2016 I finally picked up 'Life After Encephalitis: A Narrative Approach' by Dr Ava Easton. I really didnt know what to expect with this, after all I have witnessed and experienced at first hand the devastating effects of the illness on someone, my belated wife Celia and the acquired brain injury that follows along with the damage it leaves in its wake to family members.

There are some really good descriptions of the illness ( being the main source), but here was a narrative of the illness that all could understand.  Be they medical professionals or the average person in the street.  The book explains the illness, how it works in creating havoc in the brain and then after the acute phase leaves a injury that we can not see directly, but see the effects of it all to clear for all to witness.

The book also helps to explain, why there seems to be this almost insistence to narrate the condition by those who have suffered from it.  I have done so - on a blog for when I did London Marathon, and numerous times  to various people.  Ava explains that due to the condition not being known and the aftermath of it, there is this need to explain it.  What has happened to the suffer in the acute phase, how the resulting brain injury leaves them changed and the how around them have suffered due to those changes,

Both of those areas are worthy of the book on its own (or more research?), but the real emotion, the real power of the book is the narratives themselves from the families and those who have suffered backed up by the medical people in the know.  Each of the narratives show how the illness seems to start off as small changes, a cold and only as time goes on do matters really come to the head.  Each of the suffers who survived, with the help of family members, piece together the pieces of the illness, of the person they were and the person they are now.  How the brain injuries radically changes them, the personality within them.  All these backed up by those who love them and support them through the illness.  Of course, as I know, the illness does situations were the suffer s post illness brain injuries are such that it comes too much for them and they are sadly taken from us.

The base condition maybe the same: encephalitis, but the cause in nearly all of them was different, how the illness developed was different and thus the resulting brain injury was different thus each condition described was unique.  There were elements in them that I could see with Celia's case, but once again hers was a unique case and to me, thats the scary part.

I read these narratives one at a time, as thats all I could do before the emotion of them took over.  They are the heart and sole of the book, the power of love and strength of the families to come through extremely trying circumstances.  I think Ava has allowed each narrative to speak on its own volume, and credit to her for that.

If people want to know about encephalitis, then they should ready this, it is as simple as that.

Ways to buy:



Friday, 26 August 2016

Summers End, Autumn Start

Ok, it is still summer technically, but as we come to the end of the month and look to September it means the start of Autumn, cooler weather and back to school.

For starters, I have started to read Ava Easton's book 'Life after Encephalitis' and the importance that it raises the importance for people to tell their stories of what happened to the, how they coped and manage with the after effects.  Some of the key points within it reminded me of my experiences.  Why is there such a strong need for people to be vocal about the illness?  Ava discusses this, and it is something I meet with every time I discuss the illness - a clear lack of understanding the illness with the vast majority of people never heard of the illness.  Together with it is the misconception by some within the medical field to see it as simply an acute illness.  This is something that Celia and I had to deal with.  Once it is diagnosed as encephalitis, Celia was administered with some anti-viral drugs, given a few days rest and discharged back home.  There was little from the staff to offer support or direction, just sent home for us to deal with.

But this is the issue with encephalitis, the issues and problems only begin post acute illness.  The brain has been damaged, Acquired Brain Injury, leaving the person with a vast array of issues: personality changes, mood swings, depression, anger, frustration, limited mental abilities - a combination or all or a few.  There is no one simple statement to say 'it is this.....'  Each and every person is unique and thus the issues they deal with are unique.  So the issues that Celia and I had to face will be vastly different from anybody else.

I suspect, it is a combination of the unique issues that people deal with, the lack of knowledge of the illness and the management of the illness that drives  many to put pen to paper (or face the PC) to write down what they have done.  How they have coped.  How families have coped and seen what has happened to their loved ones.

It is something I can relate to.

Meanwhile, the 8th Half has been completed and mid Sept presents the 9th.  Thus I am 2/3rds of my way through this challenge.

Tuesday, 9 August 2016

Proud Dad :)

As we enter the month of August and I look back to July and event No7: the Rugby Half Marathon, it means that I now over half way through the '12 in 12' Challenge.  The 7th Event was a tough course in very warm conditions and a full report can be found here:.

July also saw me complete the 2nd of my Training Modules to allow me to become a Support Volunteer for the Society with a good positive feed back on the latest task.  The third and final module will be completed in the next week or so, then wait and see if  I pass and can start some more positive work.

Away from my own activities, I have to say I am pretty proud, as all parents are of their children, of my daughter.  Over the Summer she is taking part in the National Citizen Service - a 4 week programme about team building, meeting new people and working towards a volunteer/charity based initiative  Her group decided to try an raise awareness and some money for 2 charities.  The first is a local charity to help raise money that allows families with a child who has special needs to have a holiday.  The second charity is that for the Encephalitis Society, an idea plant and promoted by my daughter, Zoe.  This was her own idea and all I did was to pass on details of contacts at the Society (sorry Phillippa).  Go to say really proud of her :).

Saturday, 25 June 2016

11 out of 12

11 events have either been completed or entered in.  Latest 2 events added to the lost are: Leicester 1/2 Marathon in October - the last of the big city events and the Beacon Hill Trail Half - an off road event that is challenging.

With this event, I have to say a big thank you to Jack Rabbit Events for giving me a free entry into this event.  It is very much appreciated guys.

As for the Society, after all, it is for them I am doing this, the latest set of training modules have been released and thus I have started on them, hopefully will complete it by mid July.  From then - I think I will wait and see what Philippa (Opps Manager) and Co would like me do.  Maybe, even a second Module?

Saturday, 18 June 2016

Catch up time...

Been a few weeks since I last posted, so time to catch up.

15th May was event No5 - Chester Half, coming only 3 weeks after Stratford and 3 weeks before the June event.  This one I had to take steady.  Luck for me thou I ran it with a friend, so it kept me out of mischief, and finished in a very steady (and nice round number of) 2.02.02.

A week later I was back on the road, as I ran with my club, Hermitage Harriers, in a 7mile league race.  A very technical & underlating course left its mark as I finished the race, but them started to limb back to the car due to discomfort in my right ankle.  Next day, rang my physio, who managed to sneak me in who proceeded to prod and poke my ankle.  I had orders, to rest for a few days, then take it easy at Ramathon (Derby Half).

SO, on to the Ramathon, and did I listen to my physio - for all of 0.1miles.  The other 13 I ran it as I would normal.  A good steady pace, which resulted in a seasons best of 1.45.37.  More details in the race info section.

It is also sad to report, that while I was running in the final section, I saw a man who had a number of people around him, clearly attempting CPR on him.  It is sad to say that Peter Osbourne had later passed away.  A runner from Barrow Runners, a club who I see often in the Derby/Leics area.  My thoughts are with his family.

Saturday, 23 April 2016

Busy Month of April

The month of April is for me generally a busy month.  Easter, my sisters birthday and mine to boot.  

However, in the wider world of the Society it has also been a busy month.

The first great event was the publication of ‘Life after Encephalitis’ by the Society’s own CEO: Dr Ava Easton.

 ‘Life After Encephalitis provides a unique insight into the experiences of those affected by encephalitis, sharing the rich, perceptive, and often powerful, narratives of survivors and family members. It shows how listening to patient and family narratives can help us to understand how they make sense of what has happened to them, and also help professionals better understand and engage with them in practice. The book will also be useful for considering narratives associated with brain injuries from other causes, for example traumatic brain injury. Life After Encephalitis will appeal to a wide range of people: professionals working in neurology and rehabilitation, and also to and survivors of encephalitis, their families, and carers.’  

I think some are still available via the Society, click here.

The second bit of news relates to one of the Society’s Ambassadors, Aliki Chrysochou who has released her first album ‘Reflections’, and it is available via iTunes, Amazon and Goggle play.

The third bit of Society news has been the lunch of the new Team Encephalitis Volunteers….yeah!!!  I had a lovely phone call with Philly Chapman about the scheme and the training modules that I would have to undertake.  Just lasy week, sure enough I had an email through linking the courses and Mod1: Understanding Volunteers.  Covers basic information on the role (inc all the usual boring stuff: H&S), and a few documents for me to download and read through.  Just about finished it, and hopefully I will be allowed access to the 2nd Module soon.  This is all part of the new scheme that the Society is running, with the aim of increasing the work the Society does in arising awareness and support.  I am mad keen on this having over the last few years raised money and now wish to move onto a little more of a proactive role.

Finally, a mention to Jon Ainley a member of staff at the Society's HQ who is riding a bike from HQ in Malton, Yorks to Abergavenny, Wales - some 270miles.  Info and sponsorship details found here: Jons Big Bike Ride

Sunday, 20 March 2016

Looking back and forwards......

As I write this, I think back to last week where I was running round the Silverstone GP Circuit.  As a sports fan it is inspiring to be at the home of the British GP and a circuit that has history.

As I say I am running to pay back a little of the support that the wonderful people at the Encephalitis Society as they aim to raise awareness of the illness, but more than that they help people and the families who have suffered to understand the illness and what they can do.  It is something that I had to deal with in trying to help my wife with, but without the initial help. It is something that the Society is very active in, providing information about the illness.  On the website they offer information for both adults and children who have suffered.

Last month saw ‘World Encephalitis Society Day’  which had a active digital competition with the aim of raising awareness of the illness.  Some of these were really impressive, far better than my effort.  In the short film category the winning film highlighted many of the issues that I saw with my late wife, as Hasamotos was one of the forms that the medical people thought she may have suffered from.  Really good, but look at the others as well please, and I think, off the top of the head, some of these will be shown.

As we move forward and look to Easter and then into April, the work continues for the Society and the new Support Scheme.  In this the volunteers offer help in 3 areas: Support – with the aim to provide support for families who have suffered, Awareness – to help the core staff to continue to raise awareness which may include delivering information and talks.  Finally, Information – to be part of the review service, read books and other resources on the illness and to provide resources as well.  I have, for some strange reason signed up for all 3, but waiting to hear which of the 3 roles (if I am accepted) I will follow through with the training.  Still very exciting.

Just one more thing to say, Happy Easter to all, and role on into April – the month of my birthday and the Stratford ½ Marathon as well.