Monday, 16 October 2017

Graduate nurses and dementia

This week we have another three morning sessions talking to graduate nurses at Northumbria University, about coping with dementia.

I say " we", as my wife makes sure that everything I have written out, makes sense these days, and like it or not we work as a team, because we are both in this together.

I am not capable of noticing mistakes or repeats any more, so she is also my editor and advisor, as well as secretary, driver and arranger.

I am not sure how long this will last, as I have struggled a lot more this year, but I am prepared to give it a go, knowing that If I get stuck or tired, my wife can carry on reading

She did a few years ago at St James Park football ground in Newcastle,  when I was unable to attend a conference I was due to speak at, due to a chest infection. 

This also gives my the opportunity to talk about Lewy Body Dementia, something which many know very little about.

Many people have never heard of this form of Dementia, but knew about the  Robin Williams story, so it's easier to explain things around Robin and one or two other people who have lived with the illness.

However I do feel that these sessions are very important to all going into the NHS, as it prepares them for dealing with problems associated with dementia.

It also helps them to understand more about problems like the very  graphic nightmares,   associated with Lewy Body Dementia etc

We always get lots of questions afterwards, many of which my wife  answers,  as her memory is better than mine.

Along with this I usually get lots of emails from the students asking questions.


Monday, 9 October 2017

Experts in dementia

Over the last few weeks and months I have been left staggered by the so called experts, who know what causes dementia and Alzheimer's.

Last week I heard a very heated discussion among a coach party  about how aluminium causes Alzheimer's.
But does it.

If that's the cause, why is it that everyone who used aluminium pots and pans in the 1950 1960s,  did not go on to develop Alzheimer's.

I do feel that the media are feeding people's brains with this sort of unfounded rubbish, just to sell their papers etc.

I do think that it's time newspapers were stopped from writing lies about illnesses, because they are only making things worse for those living with the illness

Quite a few years ago I met someone who was to become an old friend.   He was also dignosed as having Lewy Body Dementia,  and we spent many hours discussing some of the media speculation.

Along with this we spent time discussing our jobs at the time, both  of which had involved working on live high voltage electrical distribution boards.

We both wondered if this had in some way caused our problems,   because there is so much unknown about the effects of working on live electricity, apart from electrocution, if you make the slightest mistake

In my office we also had a base station for two way radios, which other people carried around the college, and I used to get horrendous headaches at times.

This was put down to the radio frequency,  and the fact that the walls were lined with some think membrane.

So little is known about these two way radios etc, and it's like mobile phones.

I understood that the government hid a report on the dangers of using mobile phones when I was working,  and this in made much worse when you are on a busy street,  where there are lots of Chinese people etc.

You never see one of these people with a mobile phone stuck to their ears, it's always in front of them well away from their ears.

So do these people know more about the effects of mobile phones on our brains than we do, or are they more cautious than we are in this country.

However dementia has been around a lot longer than Aluminium pans or mobile phones, so I guess no one has the answers to these questions

Which ever way it goes, we are all going to die with something, so why don't the media leave us all alone, unless they have real medical evidence.




Sunday, 8 October 2017

Week in Scotland

On Monday we travelled to Symington just outside Biggar on the Scottish Borders,  and stayed at the Tinto Hotel.

This was a coach trip from the North East and took in many interesting places.

The journey up was long and tiring as we travelled up via the West Coast, so we were all pleased to get settled into the hotel for the night

The next day we travelled to Rosslyn Chapel, which is a small but beautiful chapel with a lot of history and was founded in 1446 by Sir William Clair.

The chapel was never completed because Sir William died, but what was built, was really beautiful and ornate.

Photography is not allowed inside and to be honest I could understand why.

I don't in all honesty think anyone could photograph this lovely chapel and do it any justice.

This chapel was covered in stone carvings, and it was difficult to take them all in.
When we consider that these stone carvers could not read or write etc, it's hard to understand how they could work out and  plan all of this stunning work.

As someone who used to love wood carving as a hobby, I found this chapel to be stunning and beyond belief.
It used to take me a long time to draw and plan carvings, yet these people  created all if this stunning work without the education  etc, we have these days.

After a short talk about it's history, we were allowed to wander round to take in its history.

I confess that these days with chest problems,  I struggle when the air is dry and feels full of stone, so I went outside to look around.

The chapel was briefly mentioned in the book and film By Dan Brown in  "The Da Vinci Code", and this in turn made the chapel known to millions of people around the world.

After this we travelled to Edinburgh where my wife and I went to Hollyrood House or Palace as it's often known by.

This too was amazing to see, and we intend to go back when we have more time.

The following day we went for a drive around Loch  Lomond and the Trossachs taking in the stunning views.

I have always loved  this area and have spent many holidays here, as well as having our honeymoon around Stirling and Perth.

On our final day we travelled to Dumfries House, a very large stately home which was saved by The Prince of Wales and a group of trustees when the owner died, and it was going to be sold off.

This was a lovely house, and although we did not have a lot of time there, it was well worth a visit.

From here we travelled to Ayr for lunch and sightseeing before heading back to the hotel

After this we arrived back home again on Friday afternoon, feeling very tired.

We met quite a lot of interesting people in our coach party, and in some ways it was sad when it ended, but it was a taster for future visits.

Scotland is such a beautiful place, and I could happily stay there, because the scenery is so stunning, and always changing.

Saturday, 30 September 2017

Lovely Summer

I found this blog post sitting in the saved box, where I had forgotten all about it, so I thought I would post it before it was forgotten or lost altogether



Apart from my chest and memory problems etc, we had a lovely summer, although most of this was through staying at our static caravan in Barnard Castle where the air is much cleaner that at home

I find it relaxing here and most of the people around the town are very friendly.

During this time I enjoyed lots of short walks around the town and River side, where there is so much to see.



                                      The old castle walls

                                                  Galgate
                                                  Looking up the River Tees

                                    Looking down towards the main shops and market place


One day we went on the Settle to Carlisle railway which has only recently opened again after the landslide







We also went on a coach tip to see the Great Yorkshire show at Harrogate. This day was very hot, and I got tired very quickly, so I never took any photographs

This was a lovely day as it reminded my of the local County Shows we used to go to as children, however I don't think that they were on this scale

I used to be a Special Constable with Durham Police force before I got married, and worked at many of these events


On another day we went to Wolsingham show in the Wear Valley.
Here we saw lots of farming equipment and animals, along with Alpacas which was a novelty.

There were a lot of old machinery and cars on display to which brought back many memories





















Thursday, 28 September 2017

Good day all round

Today has been a lot more positive than expected.

We had to go to a funeral first thing,  after which we got the express bus to Newcastle and had my phone checked in the Virgin mobile shop.

We were told all was well, and my balance was alright. So after all of the worrying I had not lost my data,  it was the way my brain had been interpreting the data application.

But it was all explained to us both, so that my wife could keep me straight.
Having said that, my wife is not well up with technology and struggles herself at times, but we muddle through as best we can

The staff there seemed to be more focused on the public, and when I explained my illness problems, the young man seemed to step up a gear

I can commend the Virgin Mobile staff in Newcastle for being so kind and supportive

After this we went for a curry, before doing some shopping, and then got the express back home again

It seems that after last week's total hell, I have turned the corner, and most things are fitting into place again

I confess that I was terrified at the way things were going last week,  but I am more positive now

Wednesday, 27 September 2017

What an awful week

I have enjoyed my holidays resting In  Barnard castle, but this last week  the wheels really came off

Everything has gone totally wrong, because I have been unable to work things out, or remember what I had just been told

I know that I have been very agitated,  but did not really take on board everything else, like the change in mood and personality which my wife said she noticed.

I confess that I don't understand these changes, and don't always realise things like this when they happen

This was on top of asking the same questions over and over again without knowing about it, and also forgetting my medication, all of which is distressing

This morning I tried to put my porridge into the fridge, then went into the, living room with the milk, which should have gone in to the fridge.
This has happened a few times in the past

On Monday I changed my mobile phone contract to virgin mobile,  after   months of problems with 3 mobile
Then after getting home things came off the rails, and I lost a lot of my data, due to not being able to get my head into gear.

Virgin  had changed my contacts onto my new phone,  but my apps were still on my old phone and I could not work out how to swap them over.

In years gone by,  this would have been very easy to swap things over, now it's becoming frightening

Then on Thursday my new phone died, so I had to take it back to the shop again where they checked it and then changed it.

I realised that I was losing control of my technology side of things, and this hit me hard, because I have been battling to hang onto it.

I could not blame virgin for my phone  problems, but I knew my brain was not working  things out clearly as in the past, but I need to keep trying.

I think it's all down to my eyesight and brain not working together as you would expect. We all take this for granted until it all stops working as it's supposed to do.

When you lose the ability to work and plan things out, as you have done for years, it starts to become a nightmare.

I think this is the reality of the nightmare of living with Lewy Body Dementia, and everything that goes with this horrible illness

I guess this has all been building up gradually over the summer, because I had problems trying  to think clearly and writing things down, so things like the blog have not happened.

There have been days when I wondered if I was in the real world, or if it's all been down to my brain playing tricks.

Sunday, 10 September 2017

Mobility scotters

Pedestrians are not always protected these days even on public footpaths, because of cyclists and disabled scooter's.

But  I like many other people, think the laws need to be changed to take on the number of people using bicycles and  mobility scooters on public footpaths

I get annoyed when cyclists ride along public footpaths, these days in total disregard to pedestrians.

I was told last year that its illegal to ride a bicycle on a footpath if you don't have a bell, to fitted to warn others using  the footpath, but many simply ignore this law.
What is more, if you try to say something to these people you get a mouthful of abuse.

However I do think that disability scooters need to have bells or horns fitted when used on public footpaths

During the last few days I have seen two mobility scotters travelling  along busy footpaths, dodging other people walking along looking in shops.

I think this sort of thing is now getting worse because these  scooters can travel at high speeds, and when you have problems with stability,  these things are very dangerous, as they don't give you much of a chance to get out of the way.

A few Years ago I wrote to Durham county council about these mobility scooters and was told it was up to the Government to do something.

So I wrote to the "Government department mentioned" and was told that it was up to local government to control these things.

So does anyone care, especially when people are being run over and injured by high speed scotters on footpaths.  The problem with these things is that many of the users are not insured for accidents

I think that they should be regulated, especially on footpaths and even some users agree, because they get fed up of abuse from pedestrians.

I understand that some able bodied people use them, to save them walking everywhere which seems rather odd, especially in this day and age when we hear about people being unhealthy or obese

As one disabled person said the other day, you can always tell if someone really needs these things,  because they usually have walking sticks or cruutches strapped on behind the seat

I have no objection to people using them, but I honestly think they need regulating, and they should be insured for any accidents they cause.

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


Monday, 31 July 2017

The Great War

Many of us had people caught up in the First World War

This was well known as the War to end all wars

My Grandfather was in the Durham Light Infantry, and  had left home to fight for his country

A few years ago my wife and I went on a coach tour, and we were able to visit Ypres and Passchendale where my Grandfather fought alongside his friends etc.

This in many ways explained some of what had happened, but it was so very hard to understand the horrors of this war.

I read my Grandfathers diaries before they were lost in a flood, and they brought tears to my eyes.

He had left school and got an offer of work in the local coal mine where his family lived, but decided to sign up to join the army, to fight for his country, because like others, he felt it to be his duty

A lot of his friends also signed up, because they had been told that they  would see the world, and they were also told that the war would be over before Christmas ?

When I think of this, I wonder just how many young men would do this these days.

He had been injured by shrapnel and was brought home to recuperate before going back again.

When he went back, he heard that many friends had died in the gas attacks, and this left him distressed because he felt he should been there.

On his return he got the offer of work in  the local mine again, but this never lasted along because of his injuries

He had changed from the happy young man, to someone who would spend hours just walking in the countryside, or sitting deep in thought.

I wonder just how many coped with the horrors they had seen in thoughs  few short years.

I guess as a child I knew someone who had hidden nightmares of this horrible war, but he would never ever talk about it.

He was a man who always seemed deep in thought, but he would never talk about this, to either myself or my mother.

He would often take me to local cricket matches in our town, or we would spend hours walking across the countryside.

Looking back , I  wonder if these long walks, were places where he could  listen to wild life and think of the horrors that he had escaped from.

Perhaps it was a way of proving,  that he could walk without being shot at.

I suppose the long  walks and listening to wildlife was a way of reassuring himself that the war was truly over even though his nightmares were still with him

He would often explain what bird made certain noises etc.

But this hid the real man who was still struggling to cope with life, and I guess that wildlife was a life line, and kept him going.

From his diaries I often wondered if he had felt guilty about coming home injured but alive, when he had lost so many friends from his village.

To me he was a giant of  man, and so gentle, but I can never imagine what was going on in his mind.

I miss him a lot.

My wife's Grandfather was also in this war, but we never heard anything about him after signing up, and nothing was ever said

God bless all of those who live with the memories of this horror, and those who lost loved ones.

Thursday, 27 July 2017

TBI and dementia

Last week I noticed a news topic about Traumatic Brain Injury and Dementia, and posted it on my blog.

This is a topic which has concerned many people over the years, but no one seems to know whether there are any links or not, so I guess the jury is still out on this one

Taken from an old blog

In the late 1970s, I fell around 15 feet and hit my head on the ground, and vaguely remember lying on the ground  thinking that my head had exploded before I passed out.

I don't have a clue as to how long I was out, but somehow managed to get up off the floor and staggered back to the office to see my boss,   and then went home, where my wife took me to the doctors

Later that day, I had the mother of all headaches, and was taken to hospital,  but after a few x-rays, I was sent home.

My wife said that the doctors did not seem too concerned, because she had rushed me in by car rather than calling an ambulance

The hospital that night was also very full, of people waiting to be seen, and these two doctors were rushed off their feet.

However sometime later, I was asked by a different doctor, why I had not been sent for a scan to look for brain injury, but it appears that this never happened

The following day I looked like a panda according to my wife, as I had two enormous black eyes, and a headache which felt as if my head was splitting open.

After contacting the hospital, I was told to take paracetamol.


A few years later I drove through a set of traffic lights, and had no  knowledge of what I had done, which was very distressing because my young  daughter was in the car at the time.

I had driven for two miles, but had no memory of having done this at all, however after speaking to our family doctor, I was then referred to our local neurological hospital and had a lot of tests, after which I was diagnosed as having absence seizures, which caused havoc at work, because of my electrical work etc

I found myself restricted in everything I was allowed to do.


When the Lewy Body Dementia was diagnosed around 10 years later, we were told that there was no sign of me ever having these seizures which came as a shock.

This left me a little concerned, as I could not understand how you could be diagnosed as having something, and then the same hospital department overturned the original diagnosis.

We were told by one doctor, that it could have been the Lewy Body Dementia in its early stages, something that another consultant later over ruled.



Last week

Last week we had some friends staying with us, and this topic raised its head.

I was amazed to hear that this old friend had,  had the same experience years ago, and has had seizures etc which are now controlled, but also has dementia.

Her husband and my wife were talking about the day after each accident, when we had both woken up with huge black eyes?



Although we had not met at the time of our accidents and they were not linked, it was strange to hear this, after all of these years.

I was on medication for two years to control these seizures, and had been told to stop driving etc, and take things very easy, because a bang on the front of the skull could be dangerous.


Whether there is a link between TBI and dementia, we may never know, but only time will tell, but I have heard of many people who had head injuries who went on to get dementia.

These days we are hearing quite a lot about sports personalities like rugby and football players going on to get dementia after head injuries, so I am starting like others to ask if there is a link

     
Coincidence or what?

Monday, 24 July 2017

REM sleep disorder and acting out dreams

REM sleep disorder causes people to act out their dreams

Researchers have a non-invasive diagnostic tool called a liquid biopsy that replaces cutting.




It's a condition that most of us have never heard of, but REM sleep disorder is most common in men who also have Parkinson's disease, or Lewy body dementia.

When most of us sleep, our bodies enter a state of muscle paralysis. People with REM sleep behavior disorder lose that, and are capable of acting out physical activity in their dreams, which can be violent.

Orvis "Rig" Rigsby and his wife, Karen, loved theater and travel.

"He was a theater professor and I was a theater person so for me it was really. There was an immediate connection and we had a similar sense of humor and it was just a lot of fun," Karen said.

But just a few years ago, Rig started showing signs of dementia.

"He had an incident where he got very disoriented and lost in our backyard and that's when we started looking for help from a neurologist," Karen said.

At first, Dr. Ira Goodman thought Rig had Alzheimer's disease.

"And actually I initially referred him for a clinical trial for Alzheimer's disease but right before he entered I changed my mind," said Dr. Goodman.

Instead, Doctor Goodman diagnosed Rig with Lewy body dementia and REM sleep behavior disorder. The condition causes a person to act out violent dreams.

"There have been fractures, there's been subdural hematomas, and as far as spouses or bed partners, there's been reports of up to two-thirds of bed partners being injured during an episode," Dr. Goodman said.

"Sometimes he would just start yelling or sometimes he would start punching around. Sometimes, it was like he flew off the bed," said Karen.

Currently there is no cure. Rig wears a patch that helps ease the symptoms, but keeping a watchful eye is the best defense.

"If he's having a bad night I'll still sleep in the bed with him and hold my hand on his shoulder," said Karen.

Dr. Goodman and Karen Rigsby say not to be afraid of getting evaluated if you notice any symptoms.

"I tell everybody, don't waste time, don't waste time, don't wait, don't wait, don't wait. That's all you can say," Karen said.

A national phase three clinical trial is underway for a new drug called Nelotanserin to treat the REM sleep behavior disorder. Klonopin, an anti-anxiety drug, called Clonazepan in the generic form, is most commonly prescribed, but it has side effects. Another option mentioned by mayo clinic, is to take a dietary supplement called melatonin. By the way, Karen says her husband Orvis still loves theatre, movies, music and dance.

If you would like more information, check out the medical breakthroughs on the web at www.ivanhoe.com.

Sunday, 23 July 2017

Nine Lifestyle changes may reduce risk of dementia

Nine lifestyle changes may reduce risk of dementia

Behind the Headlines

Thursday July 20 2017[

Regular exercise may help lower dementia risk
"Nine lifestyle changes can reduce dementia risk," BBC News reports. A major review by The Lancet has identified nine potentially modifiable risk factors linked to dementia.
The risk factors were:
  • low levels of education
  • midlife hearing loss
  • physical inactivity
  • high blood pressure (hypertension)
  • type 2 diabetes
  • obesity
  • smoking
  • depression
  • social isolation
However, it's important to note that even if you add up the percentage risk of all of these factors, they only account for about 35% of the overall risk of getting dementia. This means about 65% of the risk is still due to factors you can't control, such as ageing and family history.
Although not guaranteed to prevent dementia, acting on the risk factors above should improve your physical and mental wellbeing.

What is dementia?

Dementia refers to a group of symptoms associated with the gradual decline of the brain and its abilities. Symptoms include problems with memory loss, language and thinking speed.
The most common cause of dementia is Alzheimer's disease. Vascular dementia is the next most common, followed by dementia with Lewy bodies.
For more information, visit the NHS Choices Dementia Guide.

Where did the review come from?

This review was written by the Lancet Commission on Dementia Prevention, Intervention and Care (LCDPIC). The commission is established by convening experts in the field to consolidate current and emerging evidence on preventing and managing dementia. It generates evidence-based recommendations on how to address risk factors and dementia symptoms. These are presented in this review.
The LCDPIC endeavoured to use the best possible evidence to make the recommendations. However, in cases where the evidence was incomplete, it summarised the balance of the evidence, drawing attention to the strengths and limitations.
The media in general has covered the review responsibly and accurately, with helpful comments from experts in the field.

What does the review say?

The review examines aspects of how better to manage the burden of dementia: the risk factors, interventions for prevention and interventions for treatment.

Risk factors

The LCDPIC discusses the effects of several different risk factors potentially linked to dementia.
The review reported population attributable fractions (PAFs). PAFs are an estimate of the proportion of cases of a certain outcome (in this case, dementia) that could be avoided if exposure to specific risk factors were eliminated – for example, how many lung cancer cases would be prevented if nobody smoked.
Using the available evidence, researchers calculated PAFs for the following risk factors.

Education

Less time in education – specifically, no secondary school education – was responsible for 7.5% of the risk of developing dementia.

Hearing loss

The relationship between hearing loss and the onset of dementia is fairly new. It's thought that hearing loss may add stress to an already vulnerable brain with regard to the changes that occur. Hearing loss may also increase feelings of social isolation. However, it's also possible that old age could have a role to play in this association.
The LCDPIC analysis found that hearing loss could be responsible for 9.1% of the risk of developing dementia.

Exercise and physical activity

A lack of physical activity was shown to be responsible for 2.6% of the risk of dementia onset. Older adults who do not exercise are less likely to maintain higher levels of cognition than those who do engage in physical activity.

Hypertension, type 2 diabetes and obesity

These three risk factors are somewhat interlinked; however, all had PAFs lower than 5%, with hypertension contributing the greatest risk of the three:
  • hypertension – 2%
  • type 2 diabetes – 1.2%
  • obesity – 0.8%

Smoking

Smoking was found to contribute to 5.5% of the risk of dementia onset. This is a combination of smoking being more widespread in older generations, and there being a link between smoking and cardiovascular conditions.

Depression

It's possible that depressive symptoms increase dementia risk due to their effect on stress hormones and hippocampal volume. However, it's not clear whether depression is a cause or a symptom of dementia. It was found to be responsible for 4% of the risk of developing dementia.

Lack of social contact

Social isolation is increasingly thought to be a risk factor for dementia as it also increases the risk of hypertension, heart conditions and depression. However, as with depression, it remains unclear whether social isolation is a result of the development of dementia.
It was found to contribute to 2.3% of the risk of developing dementia.

Prevention of dementia

The review highlights that although there are potentially modifiable risk factors for dementia, this does not mean dementia as a condition is preventable or easy to treat. It is evident that there are multiple risk factors contributing to the onset of the disease. However, some interventions that could prevent onset include:
  • Using antihypertensive drugs, such as ACE inhibitors, in people with hypertension.
  • Encouraging people to switch to a Mediterranean diet, which is largely based on vegetables, fruit, nuts, beans, cereal grains, olive oil and fish. This has been proven to improve cardiovascular health, and may help with the symptoms of type 2 diabetes, obesity and hypertension.
  • Encouraging people to meet the recommended physical activity levels for adults. Again, regular exercise may help with the symptoms of type 2 diabetes, obesity and hypertension.
  • Using cognitive interventions, such as cognitive training, which involves a series of tests and tasks to improve memory, attention and reasoning skills. The review points out, however, that the clinical effectiveness of most commercially available brain-training tools and apps is unproven.
  • Encouraging people to become more socially active. This could be by organising social activities – book clubs, for example – for older adults. 
  • Continuing to provide support to smokers who want to quit.
Read more about ways to reduce your dementia risk.

Thursday, 20 July 2017

TBI and Dementia?

TBI and dementia: Link or no link?

Published Published Today

Brain scans
Researchers are using population studies and animal models to investigate how TBIs might lead to progressive neurodegeneration in some patients.


Whether or not traumatic brain injury predisposes individuals to dementia has long been under investigation, and the results of different studies are often conflicting. But evidence is mounting that traumatic brain injury can cause long-term damage to the brain.

Traumatic brain injuries (TBIs) disrupt the normal function of the brain. They occur as a result of a blow or jolt to the head, or an injury that penetrates it, according to the Centers for Disease Control and Prevention (CDC).

In 2013, 2.8 million people in the U.S. sustained TBI, of which approximately 56,000 resulted in death. The age groups most affected by TBI were small children up to the age of 4, teenagers and young adults between 14 and 25 years, and those over 75 years of age. The most common causes of TBI were falls, being struck by an object, and car accidents.

The immediate symptoms can range from headaches and blurry vision to slurred speech and short-term memory problems. TBIs can also have long-term effects on health, with an increased risk of seizures and infections sometimes following.

Research has suggested a link between TBI and several forms of progressive neurodegeneration - such as dementia, Alzheimer's disease, amyotrophic lateral sclerosis (ALS), and Parkinson's disease - but there is conflicting evidence.

Why is it so difficult to find conclusive evidence? And what are the long-term predictions for TBI patients?

The latest findings

Last week, Medical News Today reported on a study by Finnish researchers, which was published in the journal PLOS Medicine. Using the Finnish Care Register for Health Care, the team compared the medical notes of working-age individuals under the age of 65 with mild or moderate to severe TBI, all of whom had subsequently developed dementia, Parkinson's disease, or ALS.

They found a link between moderate to severe TBI and dementia, but no links with Parkinson's disease or ALS were discovered.

Importantly, they found that the incidence rate of dementia in moderate to severe TBI patients was similar to that found in the general population. But dementia occurs mostly in the elderly, highlighting that TBI shifts the risk from old age to working age.

The dataset used in this study was comprehensive; Finland has a tax-funded healthcare system. According to the authors, all acute TBI cases are treated at public hospitals and would therefore have been included in the study.

Yet data were only available for TBI patients who had subsequently been admitted to the hospital with neurodegenerative symptoms. The authors explain that it is possible that other patients with a diagnosis of neurodegeneration may have been missed if they had not been hospitalized at the time.

The results of the Finnish study concurred with data published last year in the Asian Pacific Journal of Public Health. Here, rates of dementia were higher among Taiwanese TBI patients than among those who had not sustained TBI.

Another study, published recently in the Journal of Alzheimer's Disease, failed to establish a link between TBI and Alzheimer's disease.

The authors compared 706 U.S. seniors with and without TBI and found that cognitive decline in participants was not affected by having experienced TBI. But in this study, TBI was self-reported by the study participants rather than assessed in their medical notes, meaning that data may not have been accurate.

A systematic review published earlier this year in Annals of Physical & Rehabilitation Medicine struggled to find a meaningful connection between TBI and Alzheimer's disease.

The review included 18 studies, but the authors were unable to classify TBI by severity. By grouping mild and moderate to severe TBI into the same category, it may not have been possible to establish a connection between TBI and Alzheimer's disease.

Other studies, however, have found clear links between TBI and Alzheimer's disease and Parkinson's disease.



TBI, neurodegeneration link supported

In an Alzheimer's disease patient cohort, those with histories of moderate to severe TBI began to experience symptoms and received their diagnosis by an average of 2.5 years earlier than non-TBI patients, according to a recent study published in the journal The Clinical Neuropsychologist. But again, TBI was self-reported in this study.
A paper published last year in JAMA Neurology found that while there was no link between TBI and dementia or Alzheimer's disease, there was a connection with Parkinson's disease.
Some of the study participants had consented to brain autopsies after their death. Both mild and moderate to severe TBI patients showed signs of Lewy bodies, a hallmark of Parkinson's disease, in their brains, while moderate to severe TBI patients also had signs of cerebral microinfarcts.
Importantly, while study participants were aged 65 and over, a third of mild and nearly half of moderate to severe TBI patients were age 25 years or younger when they sustained their TBI. This demonstrates that TBI could have long-term neurodegenerative effects.
The problem with this type of study is that they mostly rely on measures of association. This means that researchers establish whether or not there is a link between TBI and neurodegeneration in a particular study population based on the data they are using.
However, it is not possible to establish cause and effect in these studies, meaning that there could be other biological mechanisms involved in causing neurodegeneration in these patients.
To study what happens in the brain after TBI, researchers turn to animals. Here, the events following TBI are beginning to be unraveled.

How can TBI cause neurodegeneration?

A recent article in Reviews in the Neurosciences summarized what is known, to date, about the neurological damage following TBI.
The initial injury damages blood vessels, neurons, and other cell types. As a secondary effect, neurons become overstimulated, resulting in oxidative stress and cell death. Water metabolism is also affected, causing swelling in the brain.
The blood-brain barrier, which is normally impenetrable to most substances, becomes disrupted, allowing immune cells to infiltrate the damaged brain.
The combination of oxidative damage, neuroinflammation, edema, and damaged blood flow can cause significant and long-term damage to the brain.
Using a mouse model of brain injury, a recent study published in The Journal of Neuroscience set out to investigate the long-term effects of TBI in more detail.
Damage to the regions surrounding the injury site was immediate. Crucially, long-term damage was observed in distant regions in the brain and was attributed to chronic neuroinflammation.
In a mouse model of Alzheimer's disease, long-term effects were also observed after TBI in a study reported in Neuroscience Letters. Interestingly, there were no immediate differences in the brains of aged mice that had experienced TBI and those that had not.
Both injured and uninjured mice developed senile plaques, a hallmark of Alzheimer's disease, at the same rate for the first week of the study. However, at 28 days after the TBI, significantly more plaques were present in the mice. This was accompanied by impaired spatial learning.
The researchers interpreted this to mean that TBI accelerates Alzheimer's disease symptoms.
For patients who have experienced TBI, what do these data mean?



The need for long-term monitoring

While it is possible to study the cellular events that follow TBI in model systems, it is more difficult to confidently apply these results to human patients.
Many studies point to long-term effects of TBI on the brains of animals and humans, but the extent of the damage and the precise implications remain unclear.
Regardless of their results, what most studies agree on is the need for long-term monitoring for TBI patients, especially those who have experienced moderate to severe TBI. There is also a call for more accurate diagnostic criteria that would allow physicians to spot the onset of TBI-associated neurodegeneration earlier.
This would enable physicians to closely monitor patients and start treatments or interventions early on, with the aim of slowing the progression of cognitive decline.
It is clear that more studies are needed, specifically those that investigate cause and effect and that can link the results to large-scale, accurate population data.
It is also important to remember that not all of those who have sustained TBI will definitely go on to develop progressive neurodegeneration.
In the Finnish study, 1.6 percent of those with a history of mild TBI went on to develop dementia. Even though those with moderate to severe TBI were 90 percent more likely to receive a dementia diagnosis, this still only equates to a rate of 3.5 percent.
While there is strong evidence to suggest a risk of long-term damage to the brain after sustaining TBI, questions remain on why some patients go on to develop progressive neurodegeneration and how many are likely to be affected.

Monday, 17 July 2017

Right to die with dignity

People on television are discussing the rights and wrongs of ending life when you have a terminal illness.

While I am not in this position, of living with a terminal illness, I do in all honesty think that there is far too much red tape connected with this along with far too many so called gooders getting involved

If someone has something like motor neuron disease or rapid form of cancer etc, and there bodies are failing, I don't understand why they should not be allowed to die with dignity, rather than fighting to the bitter end.

In all honesty, we would be prosecuted if we allowed an animal to suffer in similar conditions, yet humans are expected to carry on struggling.

I do feel that the guidelines stop unnecessary premature deaths, yet many people think it's wrong to stop fighting an illness.

I know that there are Christian groups linked with stopping people from dying early when they have had enough, and to be honest it's time they allowed people to make up their own minds.

Many of us have set up guidelines for the end of our lives, and I see nothing wrong with that at all because it was discussed between my wife and I.

To be honest there is no way that I want to be left living in a cabbage state, and if it came to it, I may want to look at alternatives if the chips were down

So let us hope that common sense steps in and people can die with the dignity they deserve

Saturday, 15 July 2017

Depression in Dementia etc

A lot has been written over the last few months about depression, yet it seems to appear in many illnesses like Parkinson and Dementia, to name only two.

Many doctors don't look at the cause of the depression, and simply want to issue sedatives etc, "but is this the real  answer.".
Surely they should be looking for the true cause, rather than using drugs,

I know that there are times now when my brain goes,  and I am no longer able to think or plan things as I was used to, and this is upsetting, because it's very hard to accept or understand.

I have often been accused of frowning these days, yet there are times when  I  have no real  idea when I am smiling, unless I can look into a mirror.
Facial expressions don't mean a lot to me anymore.

It's not easy when you are not I control of these things,  and sometimes it's embarrassing.

Things like reading and understanding letters and documents can be an experience, because I don't always understand what I am reading or seeing.

I often misunderstand what people are saying these days, and this in turn causes upset,  until it's all explained properly. But I think this is my brain working things out wrongly

This causes mistrust between people, but unless you to have been there you would never understand it.

These days it takes me longer to work to things out, or try to carry on doing  normal things, and have to resort to items such as voice activated software on my computer, so that I can write my blogs etc.

But I guess over the years we have all said, that we feel totally depressed, but it's only when things go wrong and you cannot workout how to correct them.

It's a phrase which can cause a lot of trouble these days, especially if you say it to the wrong person, like an uncaring doctor

When I was first aware that things were going wrong, and had not been diagnosed with Lewy Body Dementia, all I got from the family doctors was that it was depression

Yet the job I was in, there was not enough time to get depressed, as I worked 24 hours a day doing breakdowns.

Yes it was hectic from what I can remember, but it was a job I loved.

I did not always get a full nights sleep, but my employers always said, that when the chips were down, I stepped up a gear to get the breakdowns or power failures sorted out.

Perhaps other people would have simply become stressed or depressed,  but I enjoyed my life, until I could not do my Job anymore.

I guess that because I could not remember how to do estimates and electrical work anymore,  and ended up counting on my fingers, which was distressing

But in this case who wouldn't be depressed, it was because I was losing control over my brain and thought that I was going mad.

I do feel that life has been turned on it's head, in more ways  than one, and things are no longer what they seem, and this causes me at times to feel depressed, but as with memory problems etc, I have to fight it for my families sake.

But I do feel that we need more support for depression or the symptoms of this illness to stop it getting any worse

I don't remember in all honesty hearing about so many suicides as we have these days, but if we are honest there is not the support out there, that we should have.
We also have Government who don't care about anyone but themselves and that does not help.

Let us hope that in the future we get more support for those in need, before it's too late.

While I openly admit to getting depressed at times, I do have ways of trying to deal with it, and turn things around.

Yes it's to do with losing control over my brain, but that's life and I have to hang on to that and help others wherever I can.

I realise that I am starting to lose control of my photography quite a lot these days,  but I will just have to find something else to do and be positive

I have my family and grandchildren and they are more important to me.

Graduate nurses and dementia

This week we have another three morning sessions talking to graduate nurses at Northumbria University, about coping with dementia. I say &q...