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
Hello - I just found your blog - it is refreshing as most sites are written from the caregiver's perspective. My father was diagnosed with Lewy Body dementia when he was 57, so I know the curse of this disease. I am 45 and have some serious concerns about my own health. It started with a couple of falls and forgetfulness and syncope a couple of years ago. Now the puzzle pieces seem to be fitting together very quickly. I have lost two jobs related to "not being the right fit" I now have what I would describe as confusion, have had a sharp decline in my executive functioning, scheduling , planning, finance etc. I once was at the top of my game, a nurse , a navy wife who managed a job, and two children and finances during deployments. I become overwhelmed by noise, crowds and decision making. I had neuro testing which revealed I was above average intelligence with no deficits - however, the same PHD reported that my father was faking it after his neuro testing.
ReplyDeleteThis month I began to have swallowing issues and it seems as though I am now dealing with restless legs - a dx I thought was "not really an illness". Seems real to me now - My apologies to any patients of mine who had restless legs.
I havent read too much of your blog- what were the early symptoms that you experienced?