April
27th, 2016

This
is a special about Blogging and Speaking, prompted by comments, very
kind ones, left for me after various other blog posts but mostly as a
direct reply to those left last time.

The
usual blog about my trials and tribulations and the adventures in CST
land will continue shortly. Ha ha! Me and shortly just do not go
together as I seem to now believe ‘why say 1 word when a paragraph
will do nicely?’

Anyway
as Ronnie Corbett would say ‘but I digress’.

The
purpose of this particular blog is not too just to thank people but
to try and put across my thoughts, feelings, views on blogging and
public speaking i.e. getting the message out there!

Although
I could or maybe even should post a thread about ‘getting the message
out there’ (any ideas on how to would be welcomed), I feel that the
limitations of a thread post do not allow me the free reign to just
talk about these subjects as fully as is required. But first, the
thanks.

A
very big, very honest and heart felt thank you to all of you that
follow me via the blog (I also thank those that follow thread posts
but this is about blogs) and an even bigger thanks to those that find
it in them to put some kind of constructive comments about it. We all
need to be learning from each other and how can I learn to improve
what I write, what I inform about, how I put it across, unless you
tell me what I am doing right and what is wrong or could be better or
different. What is good and what is bad. Maybe that’s a bit much so
just go with ‘not so good’ rather than bad!

As
my condition worsened but before my actual official diagnosis I spent
a long time just watching Talking Point. I had found it because of
going to the Alzheimer’s Society site and clicking around trying to
find information. I had no particular plan and did not know what I
was trying to find as at the time, and still, I had no idea what
questions I needed to ask. I watched, I read and I learnt so much. I
was very scared and upset by so much of what I read but it is the
truth, the reality of this disease, my future and trying to turn away
will not change it. Even after I had been diagnosed and just dumped
out into this strange new world it seemed a long time before I could
muster up enough courage to post. I did not feel it was my place to
be writing here where carers collect together and it seemed from
reading that we, the person with dementia, caused so much pain and
suffering by our actions, our words, our thoughtless and nasty
remarks, that I was actually afraid to say anything and admitting I
have it. Carers have so much to contend with each and every moment of
each and every day with their own nearest and dearest how could I
ever think of adding to that torment by voicing my own selfish
concerns? I had no-one to talk with about what was going on in me and
no clues as to where I could get help or what help. As I had been
diagnosed with early onset, I limited myself to that thread but
avidly read anything and everything carers had to say while all the
time feeling guilty about being a cause of so much pain and anguish.
It seemed and still does seem like everyone knows much more than me
about the disease, what it is, how it goes, what to do, where to go
and I am and always will be truly thankful for that. Where it seemed
to me that a shortage appeared was in the what it feels like from the
inside side. From my side , the PWD side, but I did not know if
anyone wanted that other view as hardly any sufferers appeared to
post with details about their journey and it is not an easy story to
tell.

Having
lost the job I lived for and loved, my driving, most of family,
ability to carry out hobbies (no car), any purpose to each day and
all my confidence, I thought that my very individual journey and so
my story would be just an ego trip and of no interest, not useful, to
anyone. Without knowing how much impact on my life they were having,
the posters on TP picked me up, dusted me down, pointed me in the
right direction, armed me with facts, figures, information, self
confidence and mostly self esteem so that not only could I stare back
at this disease thing and snarl at it but also have a purpose for
each day and a desire to win each and every battle, to fight every
single millimetre on the path even though I know the war will be lost
in the end.

You
brave but foolish peeps liked my posts and told me so but that just
unleashed a beast that wanted to say more than thread posts could
satisfy. I developed a need to do a blog as then I can say anything
in what ever way strikes me as being needed at that moment so I can
better understand tomorrow what I could not get my head around today.
Do it for myself as a journal so that I can use it as a reference
some time later. So many people on the walking groups I attend ask
questions about dementia when they find I can talk to them about it.
Once they get over the hurdle of me looking too well to have
Alzheimer’s and am I sure, they then want to fire questions about it
from both a technical and a ‘feelings’ point of view. Everyone knows
someone fairly close that is effected either with it or by it but
rarely does anyone talk about it. Maybe they are unable, maybe they
are embarrassed, maybe they do not know enough to talk about it,
maybe they are afraid to face the facts, maybe they just want to get
on quietly and be left alone or maybe I have just searched the wrong
internet and the wrong libraries and the wrong book shops to find
where all the first person stuff is hidden!

I
know that I am very lucky and enjoy full support from my dear
friends, colleagues & allies here on Talking Point and from that
comes fantastic recognition for my communication abilities that at
this time remain fairly well intact. This support and encouragement
gives me the strength and hard heartedness to put a blog ‘out there’.
At first the concept of a blog rabbiting on about the mundane things
I go about each day seemed pointless and far too daunting but by
trying to entertain, while staying true to how it is, the acceptance
I got and the great feedback about my meandering story telling style,
kept me at it, on it and wanting to do more. In turn this led me on
to putting the blog out on Tumblr as well and therefore worldwide.
Really scary now. I keep being told it is informative and
instructional as well as a good entertaining read all of which sounds
a bit OTT but then you are my friends and inclined to be nice towards
me. Sometimes it is a struggle to find the right words and I would
like to resort to doing just pictures as they more readily convey
what my head is saying and doing but I have only had to cave in to
that easy option once, so far! So this where we are at now, a word
based TP blog, pictures and words on the Tumblr blog and numerous
posts on specific topics when I can keep up. By keep up I mean that I
am capable of a reply soon after a post has been made. All too often,
and disappointingly becoming more often, I am unable to collect my
thoughts and feelings quickly enough and the post is old by the time
I am ready to post and therefore I do not bother to post and thus
things go unsaid. That is where the blog is better as I can say it
whenever.

As
the months have gone on the views to my thread posts have changed
from an average 100 up to 400 then amazingly to 800 but now the views
are falling again to around 300. Is this because the subject material
is not so good? I don’t believe so. Is it because my way of putting
things has changed? No that is definitely still the same. Is it
because we now have a completely different set of readers? That just
cannot be. So why the fall? Maybe people are just fed up listening to
me rambling on all the time. This seems quite likely but goes against
what friends are posting to me. So what is it? Does it even matter?
Well yes in a way it does. The Blog stats show only a very small
uptake as the best number of views is 20. Tiny when you consider the
post view numbers and/or the number of TP’ers in total. Only close
friends follow which is really great and is very significant. Over
time I have made 10 offers of help to PWD and/or carers and they have
been ignored as only 1 of 10 has been followed up by someone wanting
to talk via email & PM’s to see how we can help each other. Is
help from sufferer not wanted because I do not know enough or do not
understand the lot of a carer? Is it because we all have a very
unique path so there is no point to sharing? It would seem. Now it
does not really matter and I am ok about just helping me but it does
pose a question of ‘what would be the point of doing a book?’ no-one
really wants it so maybe that it why it is not already out there. A
book from the sufferers point of view is not wanted based on the
figures. So my dear dear friends that have tried so hard to massage
my ego (not that it needs it), you will just have to put up with the
blog for as long as I am capable of doing it. When I can no longer
type I will insist that my carer, whoever that poor unfortunate turns
out to be, types up and posts what ever rubbish I mumble out and I
will still expect wonderful comments read back to me. Until that time
I am looking at the possible avenue of local public talks as a way of
reaching a wider audience and getting the message out there. That
does however sound really very scary so will need even more continue
support and encouragement but we will see!!

Thanks
again and love to all and by the way the record number of comments
back about a blog post is currently 4!

Wayne

P.S.
Back to usual type of blog now.