Sunday, 13 August 2017

Guidelines to halt dementia

When I read the guidelines for stopping or halting dementia the other week, I was left feeling as if something wrong, some where along the line

It's taken me nearly two weeks to think this through, because I was unsure whether I had read and understood  it properly, but now I am ready to comment

Before this all started I was very active and walked quite a lot during each day, on top of doing my job.

I found a note the other day in an old diary, where I walked or cycled  around 10 miles each day, sometimes 15 miles to and from work, yet a doctor giving me a medical examination, said that this was not being active enough.

I dare say many doctors don't walk that far each day.

My brain was kept active, because as a college engineer, I was always busy if I remember correctly, either planning, estimating, or doing something else which kept the brain active.  I was on call for breakdowns, and when I got home we were usually found in our allotment garden,  growing vegetables etc.

Like thousands of other people, I don't understand or see how I got this illness.
How can you go from being active, as well as running two budgets, doing estimating etc, to counting on my fingers?

Like many other people, living with this illness, we can't get the answers to these questions

No one really knows what causes dementia, but there are many people who think that they can tell us how to remain free from ever getting dementia? Including many in the media.

But if that is the case, why is it that thousands of people in the UK alone, are diagnosed with this horrible illness every year.

These comments in the news a few weeks ago, upset quite a lot of people living with this cruel illness, because it's fairly obvious that those writing these comments, neither had a lot of experience in dementia, nor are they living with it.

Looking at this the other day, one  person I knew, commented that after reading these notes, it made it sound as if most of us had been lazy or inactive all of our lives, and rather unhealthy?

There was also a comment about why, "the large dementia charities"did not pick up on these silly guidelines

As one person with dementia said one day. Any fool can write guideliness about an illness, but unless that are living with that particular illness, they don't really have the experience to write about it.

It's a bit like health and safety regulations.  If you have not been trained to do a certain job, you can't possibly write out the regulations?

I confess that after reading the guidlines I felt exactly the same.

Dementia has been around many years, yet our grand parents ended up with it, even though they never stopped working, from early morning until last thing at night.

Many of these people never drank alcohol etc, either,  and had busy lifestyles.

So I do wonder why "so called" experts tell us that by being well educated, keeping active  and eating well,  stops you getting this terrible illness.

It's not so very long ago that we were told that our grand parents ate lots of foods which were unhealthy?

Yet when you look around these days, it leaves a lot to be desired seeing all of the  wall to wall fast foods etc consumed every day.

I have even heard of academics etc ending up with the illness, so no matter what sort of lifestyle you have, you are capable of getting this illness.

So let us hope that in future people think carefully before writing things like this.

I also hope that the media stop using "this illness" as a way of selling their newspapers etc.

Monday, 7 August 2017

Eyesight changes

Over the years I have had many problems with my eyes, yet the Eye specialists don't seem to recognise what is going on.
Many don't seem to understand neurological illnesses,  like Parkinsons/ Lewy Body Dementia etc, all of which it seems can cause eyesight problems
I never really  understood whether my problems were down to the eyes alone, or whether the brain and eyes were not working together.
As someone said the other day, the brain recieves messages from the eyes etc, so it's down to how the brain uses these messages.
I guess that's why I sometimes look at a road sign, shop sign, something in a book, or on television, and say the wrong place or word.
I wonder if its all down to my brain is telling me the wrong thing. This is very disturbing at times, although I try  to laugh it off,  but it can be serious
In some ways this explains my problems with moving staircases and marble floors etc, because the brain is getting the wrong messages, or is changing the messages it receives.
Things like blurred or double vision can be disturbing, but it seems that they are part of Dementia and Parkinson's etc, including Lewy Body Dementia.
The Eye specialists always seem to do one thing, and that is to fit your glasses with prisms to correct the double vision, because they don't realise that the problem is nuerological, and can be intermittent.
I have had prisms fitted to my glasses before, but had them removed because my problems are intermittent, and after a while I get a pain in the eyes.
Besides which, this glasses with prisms cost a lot more than normal glasses, so it gets very expensive when you have more than one pair of glasses
Yes it's difficult, but I prefer to shut one eye, and then open it later when the problem clears.
Things usually go haywire when I am too close to something or someone, then I see double
I often joke about which "wife" I am going to kiss, knowing full well who it is, but I am seeing double.
However I wonder just how many specialists consider the fact, that we don't always remember things that happened
But people , in a myself can't always remember when something started, or how long it went on for, or stopped, so we cannot always tell a specialist what they need to know
It's no good telling people to write notes, because it's not always possible to remember to do this
So when it comes to eye tests etc, we cannot always describe things as they happen, as well as we are expected to, because of our inability to remember things clearly
In many ways it's a double edged sword, because your brain, eyesight and memory are working against each other
This in turn has an effect on your abilities to plan things out carefully each day,
Even though I have had this on and off for 10 years, I get round it by closing one eye, and this works. Prisms only make matters worse because the double vision is not permanent.
There has been a lot of discussion about eyesight problems in people with dementia, but it appears that the problem is worse than the authorities seem to think.
Our eyes are important to us all, but when things are not recognised on a daily basis in makes life very difficult.

Tuesday, 1 August 2017

Life changes at the diagnosis

I know they say you should never look back to things you have lost, but there are times when I feel it's not a bad thing,  because you understand the important things you have still got left in your life

However I still don't understand fully how I got to this stage.



I had been an engineer for 28 years running the maintenance department etc, along with two large budgets, as well as doing  estimating, and electrical work.

Then things went off the rails so to speak.

When things started to change during my diagnosis,  I had no idea how long it would last, or what would change in my life.

The answer to the first question was given by my consultant in County Durham,  "How long is a piece of string".

In other words, as my wife explained to me later, until we know, the correct type of illness, and how long the illness is going to take to  progress, we cannot tell.

We were also given a sheet of paper, with possible symptoms and problems which I could be faced with, but I guess nothing prepares you for the challenges faced after a diagnosis like this.

Nor can you imagine the changes which you could be faced with, but I guess this is because at this stage, you have already started your journey and don't really understand what may or may not come your way.

At this stage my daughter was expecting, but I had no idea whether I would see my grandchildren grow up or get to know them.

I  am now  blessed with 5 lovely grandchildren from my son's family and my daughter's family, which is a blessing on it's own, and I have to hang onto that as a positive.

Children can brighten your day up, although the noise can be hard to cope with if they get excited

However while I realised that  I could no longer remember how to do my Job as an engineer, like  electrical work or do estimates, I never expected other things to disappear from my memory.

How can you go from running two large commercial budgets, and estimates, to counting on your fingers?

I can look at something many times, and yet never see the obvious and that is hard to accept. How can you keep missing things which are so  obvious and under your nose?

I think the worst part early on, was realising that things were not always as they should be, but I also think it was realising that I am no longer in control if my life.

It sometimes feels as if my brain has a life of its own, and I am no longer in control of things.

But I suppose our brains are in control, and without them working properly,   we would be useless, but this does not always help

Realising that I am always making mistakes,  which would have embarrassed or annoyed me years ago, yet I can't do anything about this.

There are days when things like big numbers, and words , don't mean a thing to me anymore, and it's hard to work out why I don't remember them anymore
Yes there are days when I see a number and realise what it means, but these days are running out, or seem to be

Its very hard,  when things work one moment, and the next moment things are total rubbish 
I know that things change quite a lot with  this illness, so I can't always plan what I want to do a few days in advance,

Trying to read a book can be a mine field, because these days I simply don't understand some words any more, so I have to skip them.
But then I hardly remember what I  have read away way,  whether this is a good thing or not, I am not sure.
It has positives because I can read some books again and again, but still don't remember the story


So it's my good times when I will attempt to write anything, or use social media, but these days are running out, due to mistakes that I don't always see when writing.


I dread going out at times because I often say the wrong things and that can be distressing, because it's usually the opposite to what I  meant to say.
This often causes upsetting times with my wife at home, when it comes out wrong, but I dread to think what other people may think.

My grandchildren seem to make allowances these days, although I  think they understand that I make mistakes, as part of the illness. 
There are times when it worries me, just in case I say the wrong things in front of them

Understanding everything that's going on around me at times can be distressing, because I quite often misunderstand what is going, on or what has been said

I get annoyed at the television, then my wife explains that I picked it all up the wrong way.

This also happens in conversations, when I misunderstand what has been said, and then answer wrongly

Marble floors can be a total hazard on a bad day because I see things that are not there.
I know that it was all explained to me a few years ago, but it does not help  when your brain tells you something else.

I guess it's all down to the brains view of what it's seeing, which could be totally wrong in all reality.

Things like moving staircases can also be a hazard, because I am never sure when to get on, and if I stand in the wrong place when going down,  I end up being pushed by the rising treads.

All this adds to the pressure to get things right, and in turn adds to the agitation


Guidelines to halt dementia

When I read the guidelines for stopping or halting dementia the other week, I was left feeling as if something wrong, some where along the l...