Sunday, 10 September 2017

Rough period

Since my last chest infection, I have struggled to get on with life the way I was used to doing.

I don't  understand these changes, which are harder to cope with.

Although I understand that there is depression in both Lewy Body Dementia and Parkinson's, which I understand are very similar, I have never really  quite understood it.

Like everyone else I get a little down at times, but I think this week I hit the bottom and found it difficult, to get clear of it.

When this happens I usually go for a long walk, or as far as I can walk these days, which is not far compared to years ago when I could walk 15 - 20 miles a day.

These days I  am lucky it I can manage 3- 4 miles with my hip and chest problems, but I know that it's exercise

When you struggle to cope with stress and agitation, as I have found recently it's difficult to get on with a normal  life.

Trying to find the right words when talking to people, can be a hazard times, something  which many people don't understand, but I guess that's life and we have to find ways of coping with it.

I have at times found myself staring into the distance unable to think clearly, and this can't be good.

Sometimes it feels as if I have hit a brick wall, because I can't think what I want to say, even to my wife, and that is very hard.

It's not that I don't want to talk, the words just don't come to my brain

However I have noticed some days when my brain has not been connected to my mouth, as the wrong things come out, or come out in the wrong order  and that's embarrassing.

I spent an odd day on my own at our caravan, and coped quite well, because I knew where everything was, so just pottered around relaxing  and enjoying walks around Barnard Castle which is lovely.

The only problems came at meal times when I had to work hard to plan things out.

I guess the reason I like this area, is because of its gorgeous countryside and everyone speaks even if you don't know them at all

While I don't always cope well on my own, I find the caravan to be relaxing because it's smaller than our house and I know where most things are.

As well as that, the air is a lot cleaner in Barnard Castle, than it is around home so it helps my breathing problems.

I guess some of my problems could be due to lack of sleep.

Although I can drift off during the day when my eyelids get too heavy to stay open,  which is an odd feeling, then wake up after half an hour or an hour feeling totally refreshed

I confess that I have never had this feeling until recently,  where you feel as if your eyelids are being pulled down and even fighting it can be a waste of time.

During the night is totally different, due to the bad dreams and nightmares, and waking up with a cramp in my right leg and foot.

I have never suffered from cramps like this before, but they can be frustrating.

So I suppose a few good nights sleep may well help, if I am lucky

However after this week I have a vague idea about what depression is, and it's something that I need to watch, because I don't want it to get worse or so bad that I can't handle it.

Tuesday, 29 August 2017

Problems with antibiotics

Many of us have conditions where we need antibiotics, and some need more than others due to recurring chest  infections

I confess that I hate these things, but due to recurring chest infections I end up with more than a lot of other people

As well as having Lewy Body Dementia, I have Bilateral Bronchiectasis and Emphysema along with a life long bug in my lungs "Heamophilis Influenza "which does not seem to go away, meaning I am prone to chest infections.

(All of this is a mouthful to remember, but it's all added to a phone app for called,   "ICE" In case of emergencies" which has my medical condition written down including medication.

However many Doctors don't tell you the problems you could face,  if you are in a similar position, and need to take these drugs in a regular basis.

It took a new  part time family doctor who also worked in s hospital,  to explain, that when you are taking these antibiotics for the likes of chest infections, you  need to take extra precautions, because some of these can have an effect on your skin etc

This doctor wondered why I was having so many chest infections, and spent his own time going through my notes, and found that all if my chest infections were linked directly to one deeply rooted bug in my lungs.

I was told to keep my head covered, and to try to keep the sun off my face as much as possible, because I will burn much  faster than I would without taking antibiotics

Wear sun glasses to protect my eyes

Keep my arms covered as much as possible

Most of this causes total havoc at present with the weather in the UK, because you never know what the weather is going to be like. With this in mind you may end up carrying a lot of extra things around with you, and you have to consider what may happen

The other day we went out on a dark cloudy day expecting rain most  of the day, so I did not take my sun cap is sun glasses, and guess what, the weather changed the sun came out and it got hot.

All of which proves that in this country you simply cannot believe the weather forecasters

I hope I get this next piece right

Take Bio live yoghurt everyday, when you take antibiotics, because antibiotics kill off natural bacteria living within your stomach. The live Bio Youghurt contains live bacteria which allow your stomach to work normally.

Although many of us use sun creams, which to me are all the same, we need to be using strong sun creams which may cost more money, but it's certainly well worth it for you own protection.

The problem with all of this is, that when you have memory problems, it's difficult to take all of this on board, while also remembering what to take and when.

I am always forgetting to take Bio Youghurt, or totally forget to put the sun cream on before I go out.

Not every doctor tells people to protect themselves from  Antibiotics, because many don't understand the problems caused.

Quite a lot of doctors don't understand chest infections, as I found to my horror over the years.

Especially one who said that I just had a common cold, but told me to send a sputum test straight in for tests. Three days later I was told that there was an urgent  prescription waiting for me, with antibiotics for two weeks?

My wife and daughter have said that they know when an infection is brewing because my attitude torally changes, and I become aggressive.

So the next time you are given antibiotics ask your doctor about the precautions you need to take.

Monday, 21 August 2017

Does driving need a review

During the last few weeks I have been staggered by the number of totally unfit people who are out driving on our roads, and no one stops them

With this in mind I have brought back this old blog because do feel that it's time that the laws are changed..

Over the years people with neurological illnesses have been stopped from driving, because they were thought to be a hazard to others.

Rightly or wrongly whichever way you look at this, I do feel that these people were victimised because of their illness, while others were allowed to carry on regardless.

Having looked around these days, it is fairly obvious to many that the laws need changing, because there are many people driving, who are unfit to do so.

In this day of free bus passes for the disabled and elderly, I do feel that the law needs tightening up to remove others from the road, and not simply pick on those with nuerological  illnesses.

I have seen many people getting into or out of a car, when it's fairly obvious that they are struggling to stand up let alone walk safely.
These people have usually been the drivers too which is hard to accept.

The number of people using two crutches etc, to stagger along a footpath, who then get into a car and drive off.

People especially elderly who get out of a drivers seat, in town centres looking totally confused, possibly because of memory problems etc.

I have seen quite a lot driving with neck collars on, when it's against the law these days to drive like this, more over, you are not insured, because you don't have full use of your neck.

Years ago I had a problem with a trapped nerve in my neck, and the hospital sent me to another hospital for traction.

Nothing was said at the first hospital, because I had walked there,

But the ward sister at the second hospital told me off, because I had driven there as my wife was looking after the children, and the bus service there was very bad.

In her words, "you are not insured if you have an accident ".
Yet since then I have seen many people driving with these collars on their necks, including bus drivers.

However I do wonder why there is not a mandatory medical test for all drivers from a certain age, to ensure that they are safe to drive.

It's been suggested a few times that this should be automatic at the age of 70, yet this causes a lot of heated debates amongst those of that age,  many of who ignore the fact that their responses or eyesight etc,  is not as good as it should be.

Many county council's in the UK,  run driving assessment schemes which cost £20, a small amount to have your driving tested to ensure that you are still fine to drive.

Before this is picked up wrongly I am not saying that everyone over 70 is unfit to drive, because many clearly are, but there are others who are not fit to drive.

I personally think that the family doctors and motor insurance companies should work together, and sort this out before too many people are killed.

While I no longer drive, some drivers terrify me these days, because it's obvious that many are totally unfit to be on the roads, yet nothing is being done to sort this mess out.

I was in a country village the other day, and saw two elderly drivers go past the bus stop, both hanging tightly onto the steering wheel and peering over the top, eyes nearly closed as if they could not see clearly?

It alway sounds as if it's someone else's problem, and not the medical profession or the legal profession.

It's time to stop banning people with nuerological illnesses from driving while others who may be more dangerous are allowed to carry on regardless.

I do feel that these regulations are hit and miss, a bit like a post code lottery,  and they should be standardised, so that we are all on a level playing field

Sunday, 20 August 2017

Maintaining Routines

Over the years many people have told us to set up and run a routine to get us through the day.

But like other people, I know that this is easier said than  done,  on some days.

I was originally told to set up a routine, after my diagnosis in  County Durham.

This idea is that it makes life so much easier, getting things done during each day.

However as i have found out on many occassions, it only takes a small distraction at the wrong time, and then things go haywire

I have used the same system over the years, yet things still go wrong, especially if you are in a different environment or if you have visitors

I have tried having settings on my mobile phone for my tablets,  but this again relys on you being in the right place at the right time.

I have been distracted on many occasions, and this can be frustrating if you have forgotten to take your tablets in time etc.

However there are other times that it can be embarrassing.

I was once getting shaved when something happed. Later that morning my wife said she looked at my face,  and saw that I had shaved one side of my face, and not the  other ?

Luckily for me I dont have a dark beard to it was not so obvious

There have been many occasions when I heard my phone alarm go off, but was not ready for my tablets,  or I was still eating etc.   So I say I will take them shortly, only to come back later and find my tablets still in the box untouched

This even happens when I have the tablet box in my pocket.

I have on many occasions got out of bed after a bad night, and the routine has gone out of the window.

It does not take a lot to throw things out of gear like this, just a slight distraction either a noise like a door bell or telephone, to someone asking you something.

I guess one way would be to set up a reminder on my phone, but reminders sometimes get in my nerves at times, especially if you are eating and you get a text etc.

I then find that I turn off the sounds and then things go completely wrong. 

While reminders are good to keep us going, there are times when they are impossible to stick to, and that is more frustrating at times.

But having a routine is very important, because it allows us to have that extra bit of freedom,  without needing support from others all day

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


Rough period

Since my last chest infection, I have struggled to get on with life the way I was used to doing. I don't  understand these changes, whi...