Tuesday, 15 July 2014

Blogging and dementia


 
Before I was diagnosed with this illness I had been a University College Engineer and was used to monitoring all of the College boilers and plant on one computer. While doing the other tasks such as reports, budgets,estimating and planning of maintenance on the other. 



Now this was all starting to slide away, and it was a struggle to hang on to working on my computer, but I was determined that I was going to hang on to this for as long as possible

 

After the diagnosis I lost my job, and it was decided that we should move back to the family home in the North East, where we could start again, but that was not as easy as we expected, because with in the three months since my diagnosis Oxford Hospitals had lost my notes, and after waiting for around 6 months, it was decided that I should undergo all of the tests again to confirm the diagnosis

 

When I was finally diagnosed as having early onset Lewy Body Dementia, in Durham, my consultant told me to sit down and write my life story as a way of allowing others like any future grandchildren the chance of learning more about who I was and where I came from, as much of my early life was unknown.

 

During another part of the process which concerned my very graphic nightmares and dreams, I was told to keep a diary, and write down what happened, to see if it bore any relation to normal life

 

After starting my life story I decided to keep an online diary, not really thinking of what I was letting myself in to, because I had lost so much control over the computer since the illness started.

 

So after a while I found this free blog and got on with writing about my life and then my illness, gradually taking in things like the problems with graphic nightmares etc.

 

At this stage I confess to being naïve enough not to think that anyone would be looking at it let alone reading it. But then life with dementia was and is something which is still alien to my life as an engineer, and I don’t always recognise the obvious things in life these days, which can be very annoying and distressing at times.

 

Over a period of around two years I would write the occasional blog and never think about it, until one day when I saw something which I had never noticed before, and that was a button saying “Audience”

 

I looked at that wondering what on earth it could be, and got the shock of my life when the audience was revealed. It was being read around the world by thousands of people,

 

A few weeks later I spotted another button saying comments. At first I thought it was where I could write comments, and ignored it. However for some reason unknown to me I went back later and pressed that button, where I found pages of comments, from people.

 

That nearly stopped me from doing any more as this came as a total shock to the system.

 

When I read some of the comments, I was totally amazed at the fact that my attempt at blogging was in fact helping others to come to terms with their diagnosis, because they had been having problems and had no answers.

 

To be very honest I found this very humbling to read some of these comments, because I had never set out to help anyone but myself

However this inspired me and became a little addictive at times as I kept looking at the screen to see who was watching me and where they were, so to speak.

 

I have been questioned at times about my spelling and grammar, but do these people who question us really think that I am doing this for fun.

 

Yes we all make mistakes and it hurts when we don’t see them, but that’s dementia. How many people in this room do e-mails etc. and forget to do a spell check?

 

I have received many e-mails from professionals over the years, and some of the mistakes, made me wonder, if they really cared

 

I used to be very proud of my spelling and grammar, so when things like this start to slide it leaves you wondering whether to give up all together. 

Luckily for me I was advised to ignore these people because they had no idea of the problems I face on a daily basis, and I would advise others to do the same.

I have been contacted by three or four Universities around the world, for permission to use the Blog as a Teaching tool. This I found to be very humbling, as I never set out to do this, but if this is helping to train people doing degrees or other courses in Dementia, then so be it.

 

So why do we blog? and is there a need for it when you have an illness like dementia

 

I think that we must remember that doctors and consultants cannot tell us everything about dementia, because there are so many variations of the illness, so it’s a case of finding your own way where you can, and if possible writing something like a blog which can help others following you.  

 

Recently I have noticed that there are many blogs about dementia, many written by carers and many others written by people living with one or other form the illness.

 

I don’t think I had read one which is negative in any way, but then my idea of what is negative may be different to someone else’s

 

I think we are all trying to prove that we are not going to lie down and surrender to this illness while we can still think and push the keys on the keys board

I confess the key board is hard at times, and when this happens the voice activated software takes over, but that’s a last resort.

 

All of these are vastly different using different ideas and technics.

I have struggled recently due to recurring chest infections which left me feeling that I was losing interest in everything around me. So I have not done a lot over the last year apart from posting articles concerning dementia both national and local, but hopefully this will change soon

 

Two years ago we were badly flooded at home and had to move into a flat for 6 months, a period I don’t remember much about, but it got very difficult to cope with.


During the November I decided to try to tidy up the blog, but somewhere along the line I pressed the wrong button, and deleted the whole blog. I contacted Google at the time to see if they could help but go not helpful answer so I felt stuck.


My wife told me that there were two ways of dealing with this, either let it go, or as everything was written in word before being posted on the blog, I could start all over again. I had got quite a lot out of doing this blog so I started all over again.

 

Since restarting this blog on 11/11/2014 our wedding anniversary, I have now reached over 61-000 readers in 106 countries, something I find to be truly amazing   

 

  Useful information about blogging

  • it is a very useful communication tool with others
  •  it is my memory bank, of problems I struggled with
  •  it helps immensely with managing some of the symptoms of dementia, as writing it down sometimes helps us to understand what is happening
  • it helps to keep my brain active and working
  •  it helps us to be creative
  •  I have met many new and wonderful friends, who share similar problems whether they are living with dementia or are caring for someone with the illness
  •  it gives me a focus on the days I feel lost to the symptoms of dementia, and gives me a good reason to try to stay focused
  •  I have many friends now from all around the world
  •  it has connected me with students and Universities all over the world, along with, centres for dementia degrees and courses
  • it has helped define me beyond the diagnosis of dementia
  •  It helps occasionally to inspire others with the illness
  • it has helped me receive and accept criticism more easily
  •  it has sometimes helped to improve my writing
  •  it gives me something to do when I am home alone, when my wife is out or busy
  •  It helps to educate others
  •  it reduces the stigma, discrimination, and isolation
  •  and provides me with meaningful and fun-filled engagement

Overall it makes us a better person and helps us to help others in all parts of the world, and language is no barrier thanks to google where we have translations.

Because as we write or problems down we are not only helping ourselves, but also helping many others who do not have the support that we do.

 

There are a few pitfalls of blogging, the biggest for me having been some comments I have had seemed particularly mean, maybe not intended to be hurtful, but hurtful none the less.

But I have learnt to read them and then delete the negative ones, because other people tend to fight back when they see bad comments.

 What I write is my opinion, and at no time do I every declare it to be a ‘fact’. Nor do I ever say that we are all the same, because that would be wrong

 

 

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