Zombies Are Real

Well, this shows how bad my memory is getting, I did start writing about my condition earlier than I thought. I just discovered the following on my computer and it is dated 2014. I have had this thing longer than I realised.

Zombies Are Real

Yes, zombies really do exist and I’m not talking about the fictional brain eating kind but the very sad cases of people affected by degenerative brain disorders who basically go through a kind of living death before their bodies actually expire.

My father was one of their number and if my recent brain scan is anything to go by, I will also become one if I live long enough.

No one noticed the early onset of Alzheimer’s in my father but looking back later, it was easy to see some of the signs that things were starting to go wrong.

My father always loved reading but at one point he stopped. No one is really sure when but it just happened. This, like many other changes, crept up on him and the progress of the condition was slow enough for everyone to miss the early warning signs.

It is doubtful if anything could have been done even if we had noticed what was going on but when the axe finally fell and the diagnosis was made, it was a great shock.

Since my father suffered and finally died from Alzheimer’s, I knew I was at increased risk of developing the condition myself.

The first warning sign I noticed was an inability to type some words correctly. Simple words like ‘the’ often came out as ‘teh’ and it became so rampant that it seemed as though my brain had been re-wired and could not help making the same mistake over and over again.

Other words gradually joined the list and it became obvious that something was wrong. A brain scan in early 2014 confirmed what I feared, my brain was showing advanced signs of ‘shrinkage’.

At the age of 53 I had to start considering what kind of long term future I was likely to have.

By the time my father was diagnosed, he had deteriorated so far that he never really understood his condition. He was frustrated that he could not think straight and he knew that things were not right but he was not lucid enough to grasp the enormity of his diagnosis.

From the time he was diagnosed to the time he died was less than 4 years and he died at the age of 84.

From what my doctor has told me, the condition can set in earlier for following generations, so I have to expect that 84 is pretty much unattainable for me.

Unlike may father I am still reasonably cognisant of my likely prognosis and I have the unfortunate ‘luck’ of being fully aware of what is likely to happen to me.

My mind has always been fairly sharp. I am a long way from being a genius but working as a computer programmer for much of my life taught me to focus on tasks and think rationally about things.

This focus and concentration are slowly slipping away and from month to month I can sense the difference in me.

Any kind of stress has a most unpleasant effect on me as my mind instantly turns to mud and I am unable to think clearly.

My typing ability is diminishing too and I find that after I finish a paragraph, I go back to check it and find several words are complete gibberish.

My eyesight, which has always been bad, means that I type while looking at the keyboard and I can usually tell if I make a ‘typo’ or two. This isn’t the same as thinking I have not made a mistake and going back to find several incomprehensible words that need correcting.

I have decided to track the course of what happens to me via this journal. I will assume that the entries here will track my deterioration to the point where I am no longer able to make entries.

This is my very first entry dated November 3rd 2014.

Wow, just wow! I was astonished when I found and read this. If I couldn’t even remember writing this then I have to suppose that things are worse than even I have given them credit for….

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Less Of Me

I wrote the following after being inspired by Glen Campbell and his struggle with Alzheimer’s and after hearing his song, ‘I’m not going to miss you’.

Less of me

Day by day there’s less of me
than on the day before
I’m not quite what I used to be
I’m fading more and more

And one day soon there’ll come a time
when I don’t know your name
This journey is an uphill climb
but there’s no one to blame

So when I’m here but somehow gone
I hope you’ll hold my hand
and in your heart you’ll dwell upon
the times that were so grand

Look back at all the fun we had
those times that made us high
Don’t let me leaving make you sad
Don’t let it make you cry

For when I’m lost behind my eyes
and I look but I can’t see
Think back when there were clearer skies
when I was still just me

Use our love to keep you strong
Just hold me close and sigh
I’m by your side where I belong
I’ll love you ’till I die

25/03/2016

March 8th 2017

Although I don’t call myself an ‘author’, as most of what I write has never been officially published, I am a prolific writer.

I have written a number of books and I maintain websites that involve a lot of writing.

One aspect of this that I used to enjoy a great deal was writing bush ballads. I have quite a collection. (For anyone who is interested you can see some at : http://www.wanowandthen.com/Ballads/index.html

I am not sure if my condition has anything to do with my lack of motivation but I have noticed that I have gradually stopped writing ballads.

At one time inspiration would come from nowhere and in a few minutes a complete piece of work would develop.

I used to joke that I was ‘channeling’ Henry Lawson.

I am yet to experience the panic of not knowing where I am, or not recognising someone I know and love. I know that will probably happen eventually as I can feel this ‘thing’ getting a firmer grip on me week by week.

There are times when thinking feels like wading through a pool of molasses.

Any kind of stress completely freaks me out. My mind just shuts down and will not work.

I’m not afraid of what is happening but I am very FRUSTRATED!

March 6th 2017

I am starting to put dates on these entries in an effort to track the progress of my condition.

I know things are gradually getting worse as I lose the ability to properly type more and more words. Words ending in ‘in’ I now automatically add a ‘g’ to so ‘within’ becomes ‘withing’.

I even forgot that I was intending to update this document and it took a few minutes for me to recover the thought.

Then I had to find this document <sigh> this gets very frustrating.

I have thoughts in my mind that I want to put down but by the time I have finished typing the first paragraph, the original thoughts are gone.

The people around me seem to either be in denial about my condition or they really don’t see it as being as bad as I feel it is.

Perhaps it is because I can still hold a normal conversation on most topics, it is really only the short term memory problem that exposes what is really happening inside my head.

That is often passed off as; ‘We all get like that at times’.

My eyes have had a bit of a set back with a torn retina in my right eye. I have had laser surgery and hopefully it won’t detach now but I am left with a bunch of ‘floaties’ (good technical word that) in my eye that are very annoying when I read the computer screen.

Physically I am pretty much buggered but I see no reason to try and improve. I know exercise will help me lose weight but why should I bother. What is the point of having a healthy body and an empty mind?

Basically I hope that a heart attack gets me before I completely lose my ability to reason.

It might seem as though I have given up but in general I am just getting on with life and doing what I can for as long as I am able.

There is no cure for this and if I don’t die of something else first, i know what my fate will be, after all, I saw it happen to my father.

It isn’t all doom and gloom though. I can’t do paid work but I am still trying to do as much as I can with my main website (www.wanowandthen.com). I can’t just sit and do nothing so this keeps me occupied and helps keep my mind turning over.

 

December 29th 2016

I first noticed I had a problem when I started typing words incorrectly.

It wasn’t simply a ‘typo’ but it became a ‘programmed’ way of typing a word. The first word I had this problem with was a very simple one; the word ‘the’. I started typing it as ‘teh’ and the error became fixed anytime I was typing fast and concentrating on getting a sentence written and my mind got ahead of my fingers.

I could see there was a problem once I went back and read what I had written but at the time I was typing, it just didn’t register.

I had a brain scan and was told what I already knew, my brain was showing signs of deterioration. My father died from Alzheimer’s so it wasn’t that much of a shock to discover that I was also showing signs but instead of being in my 70s or 80s I was in my 50’s. It was early onset.

The problem with ‘the’ spread to other words and I found myself adding letters that I did not intend to add.

Gradually my short-term memory got worse and worse to the point where now, a simple thought can come into my head and completely displace what I was about to do.

This becomes very frustrating as I know there was something I was about to do, some task I had to undertake, but a second’s distraction wipes it from my mind.

My eyesight (that has always been horrible) is also suffering and my depth perception is now very poor. I am now clumsy and knock things over all the time.

I was never the most patient person but now my temper gets the better of me and I am inclined to deliberately destroy things that irritate me.

One thing that is pretty well guaranteed  to set me off is someone telling me I should have remembered something.

I am not doing this for fun! I am not doing it to annoy other people, I am forgetting because I CANNOT REMEMBER!

I find it very insensitive and incredibly irritation to be told I should have remembered something when ‘blind Freddy’ could see that I simply cannot do it any longer.

People dealing with dementia sufferers need to be made aware that this is a real source of tension and trauma for the sufferer.

(I have underlined the words above because coming back and reading the sentence again, I can see the problem. I know the grammar is wrong and at one time I would have never typed irritation instead of irritating.) – Argh! it took me three (make that FOUR) attempts just to get this correction right!

Early Onset Dementia – My Story

I knew there was something wrong with my brain and had a brain scan. I was told that there were signs of early degeneration and to be honest it was no surprise.

Unfortunately I haven’t kept track of exactly when this all started but I think it was a couple of years ago. I knew there was something wrong with my brain and had a brain scan. I was told that there were signs of early degeneration and to be honest it was no surprise.

My father died from the effects of Alzheimer’s disease so I was able to spot some problems with the way I was handling various tasks and I knew that it was likely that I had something similar.

Some weeks back I decided to keep track of what is happening to me. Initially it was just for my own benefit but today I decided to create a blog in the hope that it may help others suffering from a similar disorder.

So firstly a little about me.

I was born in England in 1960. My family moved to Australia in 1966, returned to England for three years and then came back to Australia permanently in 1972.

I married in 1981 and became a computer programmer.

In 1997 my wife and I got fed up with the 9 to 5 grind and took off on a working holiday of Australia. We intended to be gone for about a year but 11 years later we were still on the road.

In 2010 our circumstances changed and we had to return to suburbia and settle down.

I currently run a number of websites and other resources in the internet and am in a battle against time to complete a upgrade to my main website.

I started writing about my condition on December 29th 2016 and the posts that follow will track what happens to me until I am no longer able to write.