Thursday, 20 February 2014

How life has changed

They took aspirin, ate blue cheese, bread and dripping, raw egg products, loads of bacon and processed meat, tuna from a can, and didn't get tested for diabetes or cervical cancer.

Then after that trauma, our baby cots were covered with bright coloured lead-based paints.


We had no childproof lids on medicine bottles, doors or cabinets and when we rode our bikes, we had no helmets or shoes, not to mention, the risks we took hitchhiking.

As children, we would ride in cars with no seat belts or air bags.

We drank water from the garden hose and NOT from a bottle.


Take away food was limited to fish and chips, no pizza shops, McDonalds , KFC, Subway or Nandos.

Even though all the shops closed at 6.00pm and didn't open on a Sunday, somehow we didn't starve to death!

We shared one soft drink with four friends, from one bottle and NO ONE actually died from this.


We could collect old drink bottles and cash them in at the corner store and buy Toffees, Gobstoppers and Bubble Gum.

We ate cupcakes, white bread and real butter, milk from the cow, and drank soft drinks with sugar in it, but we weren't overweight because......

WE WERE ALWAYS OUTSIDE PLAYING!!

We would leave home in the morning and play all day, as long as we were back when the streetlights came on.

No one was able to reach us all day. And we were O..K.

We would spend hours building our go-carts out of old prams and then ride down the hill, only to find out we forgot the brakes. We built tree houses and dens and played in river beds with matchbox cars.


We did not have Playstations, Nintendo Wii , X-boxes, no video games at all, no 999 channels on SKY , no video/DVD films, or colour TV, no mobile phones, no personal computers, no Internet or Internet chat rooms..........WE HAD FRIENDS and we went outside and found them!

We fell out of trees, got cut, broke bones and teeth and there were no
Lawsuits from these accidents.

Only girls had pierced ears!

We ate worms and mud pies made from dirt, and the worms did not live in us forever.

You could only buy Easter Eggs and Hot Cross Buns at Easter time....

We were given air guns and catapults for our 10th birthdays,

We rode bikes or walked to a friend's house and knocked on the door or rang the bell, or just yelled for them!


Mum didn't have to go to work to help dad make ends meet because we didn't need to keep up with the Jones's!

Not everyone made the rugby/football/cricket/netball team. Those who didn't had to learn to deal with disappointment. Imagine that!! Getting into the team was based on

MERIT


Our teachers used to hit us with canes and gym shoes and throw the blackboard rubber at us if they thought we weren't concentrating ..


We can string sentences together and spell and have proper conversations because of a good, solid three R's education.


Our parents would tell us to ask a stranger to help us cross the road.


The idea of a parent bailing us out if we broke the law was unheard of.

They actually sided with the law!


Our parents didn't invent stupid names for their kids like 'Kiora' and 'Blade' and 'Ridge' and 'Vanilla'

We had freedom, failure, success and responsibility, and we learned
HOW TO DEAL WITH IT ALL !


And YOU are one of them!

CONGRATULATIONS!
You might want to share this with others who have had the luck to grow up as kids, before the lawyers and the government regulated our lives for our own good.

And while you are at it, forward it to your kids so they will know how brave their parents were.


PS -The big type is because your eyes are not too good at your age anymore.

Tuesday, 18 February 2014

Too old to get lifesaving drugs


Too old to get lifesaving drugs: Anger at plan to deny elderly treatment if you've had a 'fair innings'

Patients who have had a ‘fair innings’ could be denied life-saving drugs under proposed health reforms.

The plans would mean experts taking into account whether there is a ‘wider societal benefit’ to giving a patient crucial medicines.

The NHS rationing body, Nice, fears the Department of Health proposals could see younger people deemed a higher priority for drug treatments because they have more years ahead of them – potentially contributing more to the economy – than the elderly.

Controversial: The NHS rationing body, Nice, fears the Department of Health proposals could see younger people deemed a higher priority for drug treatments (file picture)

Doctors, MPs and campaigners last night condemned the plans as ‘barking mad’.

The move will also fuel fears that the elderly are receiving a worse deal from the health service than the young.

Cancer charities have already warned that ‘cruel restrictions’ mean older patients have been denied medical treatment, regardless of a proper assessment of their fitness levels and how likely they could benefit from treatment.

Sir Andrew Dillon, the head of the National Institute for Health and Care Excellence, said he was concerned about the new rules and feared they would lead to older patients being penalised in a ‘hard-nosed’ and ‘crude’ economic approach.

The reforms, which are being consulted on, would see new drugs assessed for the first time based partly on whether they would benefit society as a whole – not just the patient.

For example, a drug that helped people to live longer in an expensive care home, or on welfare, might have a ‘negative’ social value not outweighed by the benefit to the individual, because such patients take more from society than they can put back.

Sir Andrew said: ‘There are lots of people who adopt the fair-innings approach: “You’ve had 70 years of life – you’ve got to accept society is going to bias its investments in younger people.” There are people who subscribe to that, but it’s not something we feel comfortable with.’

He said an initial assessment by Nice suggested that accounting for ‘wider societal benefit’ would inevitably tilt funding away from the old because younger patients had more to gain from treatment and more to give back.

He added: ‘We’re really concerned that we don’t send out a message that we value life less when you’re 70 than when you’re 20.’

CiarĂ¡n Devane, chief executive of Macmillan Cancer Support, said: ‘The UK has some of the worst cancer survival rates in Europe and they are especially bad for older people. Macmillan strongly recommends against any action which could make this worse. The Nice board is right to reject the Department of Health’s proposal.’

Penny Mordaunt, Tory MP and co-chairman of the all-party parliamentary group on ageing and older people, said any new rules on societal benefit would be ‘absolutely wrong’.
‘Age shouldn’t come into it,’ she said. ‘It’s about you as an individual and what drugs work for you. You cannot decide from someone’s age, their ability to benefit from treatment. It’s about them as an individual.’

QUALITY OF LIFE VERSUS THE COST

Under the current system, Nice determines the cost of a new treatment by working out how much it improves and extends a person’s life compared to existing treatments.

It uses a formula known as ‘quality adjusted life year’ or QALY.

One QALY equals one year of perfect health, or two years of 50 per cent perfect health or four years of 25 per cent perfect health.

Generally, if the cost per QALY is below £20,000, the treatment is deemed cost effective and approved.

If it falls between £20,000 and £30,000, Nice needs ‘persuasion’ to give it the go-ahead.

If the cost is more than £30,000, the drug is not normally approved.

Andrew Percy, a Tory member of the health select committee, said: ‘I am sure that [restricting drugs to older people] is not the intention of the rules. If it is, it would be barking mad. Clearly people who have paid into the NHS should receive the support they need through their entire lives, including in retirement.’Ros Altmann, a former adviser to the Treasury on older people, said it was ‘very frightening’ that such a model was being considered.

‘It is quite Orwellian that it is being said that if you’re no longer fit for work, you aren’t owed anything by society,’ she said.

‘It is wrong to say older people do not contribute to society. They do so much voluntarily for their local community and for their families through free childcare for grandchildren. All this saves us billions of pounds.’

Leading prostate cancer specialist Professor Jonathan Waxman said Nice was an organisation ‘not fit for purpose’.
He added: ‘Nice has been the main brake on the availability of cancer drugs during the last decade and caused considerable distress and deaths based on an opaque and unscientific evaluation system.

‘We need transparency about how these decisions are made.’

A spokesman for the Department of Health said changing the rules would ensure good value for money – without penalising the elderly.

He added: ‘That’s why we have asked Nice to look at the way drugs are assessed so that patients can get the treatments they need at the best value for the NHS.
‘The allegation that older people will miss out is absolutely not true.’

 

After reading this I am left feeling sick that any Government could even consider this, especially when they claim to be squeaky clean and are still fiddling expenses

 

There are many ways of raising money, including making sure that everyone in this country pays their tax’s, or should we say pays them to the treasury in the UK,  something the Tories have refused to do, yet it would raise billions of pounds.

  

Like so many other people I will never ever vote for this shower ever again, when I look at them carefully they are no better that the mafia.

Last night they showed a selection of medication on Television including Exelon, something I take for dementia with lewy bodies

  

Sunday, 16 February 2014

Dementia Charities

There has been a lot of discussion over the Internet about the role of Dementia charities, and who is best  to cover our problems. Some of this is starting to get very political and in some cases annoying



I guess before going any further I do think that there is a lot of politics involved in this subject, and if you are not careful you could be dragged into something you don't want.



I have worked with the Alzheimer's Society and the Lewy Body Society, where I am honoured to be an Ambassador.



The Alzheimer's Society in the UK like other charities claim to cover all forms of the illness, but its up to the person with the illness as to what they want and no one else can tell them what to do.



But I personally feel that if you want to get all of the information concerning "your own form" of the illness, you should then seek out a charity which covers, and which is totally dedicated to that form of the illness.


I say this because they are usually backed up by professionals in that one field, people who are doing research into that form of the illness and nothing else.



In the case of the Lewy Body Society the information is backed up and supported by professors in Lewy Body Dementia, people who are the leads in this research, so nothing can ever beat this.



These people are better positioned to give the correct advise and the whole picture  



when I look at literature about Lewy Body Dementia, each charity tells us different things, and not all are accurate, which is very sad, because, when I was diagnosed I looked everywhere for advice and was staggered at the different advice given out, much of which had not at that time been updated.



However the advice is only about certain types of illness, and not everyone is covered.


There is also a danger that if you enter a chat room on the wrong website, you may be given the wrong advice, by someone with a different form of dementia, or from a carer who has looked after a person with a different form of dementia



I remember early on being told to get a second opinion, by a carer who knew nothing about my form of the illness, something that was distressing and wrong.



But please remember that each country has different ideas and treatments.



The reason for this is that dementia is a vast and complicated illness. There may be around 10 types of dementia, but there are over 120 variations, so no matter what we do, we will never find information which covers all forms of the illness, simply because no two people have the same symptoms and problems.



Some forms of the illness also get combined which makes life even more complicated

This is why I started this blog in the first place, because I was told to write down my problems, so that it could be followed, and better understood.



Many people have contacted me over the last few years, saying that I have mentioned problems that they or someone close had struggled with, and yet they were never told about it by the professionals or charities.



The answer I guess is simple, everyone takes the shortest possible route, and cover only certain subjects.


One problem that many charities will not cover is the graphic nightmares we struggle with in certain forms of dementia, and the answer is that they don't wish to frighten anyone.



But if you are not told about it,  it can have the wrong effect on the person.



I had discussed my problems with my consultant in the first place, so I knew all about these graphic nightmares, but many people are not told about them, and simply think that they are going mad.



My advice would be to find a charity which covers your own form of the illness first, in your own country if possible, and get the advice you need and then if you want to look at other charities.

I am not being political, or telling people what they should or should not do, but simply telling people what I would do if I was diagnosed today.



Each charity has its own ideas and these are my own ideas from my experience only, and I still work with any dementia charity which asks me, because its very important that we raise the profile of dementia.



I must also point out that when I was diagnosed the Alzheimer's Society were very helpful to us, and got me going in a role of travelling around the UK talking about living well with dementia, and I will be eternally grateful, to them for everything they have done and will continue to support them while I can.



Many small local branches will ensure that all local  information is kept up to date. So never forget your local branches whoever they are run by



Sometimes smaller charities are better places if you want someone to help, with local information and support, and sometime's they are more friendly as they are more hands on, but its all down to the person and what they want from the charity.



Many years ago the Alzheimer's Society used to have local branches in most towns, now they have nearly all gone, and many are simply locality offices for the staff.



I found local office much better for support and help, but as we know life changes as do large charities

Friday, 14 February 2014

Blog Comments

I would just like to answer a few comments, I have received over the last few days

This blog is mine although it is free care of Google.



Even though I have Lewy Body Dementia, it was a lot of hard work at first as I had no help or support.



It is owned by Goggle and I have no control over any photographs which do not download when viewing. I suppose most of the software I downloaded at the start was and still is Google produced, so perhaps I can download it through this software, but it may not be visible to others



Although I have this illness I am not in control of my brain and therefore thee are times when I forget to do things like spell checks, and I do apologise for that, but I do checks when I remember.



I try to do my best when I write things to make them understandable and easy to read, but this also depends on my brain which changes a lot on a daily basis, so please try to understand there are no deliberate mistakes.



There are also many dementia websites for information, along with quite a few where there are chat rooms or discussion rooms, but I do not know them all and would not wish to offend any group by not writing them down here.



If anyone wants information about Lewy Body Dementia, there are two dedicated large websites covering this illness.



The Lewy Body Dementia Association in America



Lewy Body Dementia Society. ORG.UK



There are others including the Alzheimer's Society.org.uk   which also hosts a chat room called Talking Point, open 24/7 and covers most of the world

 




Thursday, 13 February 2014

Dementia and co-morbidity problems

Like everyone else with any form of dementia we tend to struggle on learning to live with this illness, but never really take on board the extra problems that come with the illness.



Memory causes so many problems in this illness, yet when we look at the other problems life becomes a bit of a nightmare.



Co morbidity in dementia is not something to be taken lightly or ignored, let until, I was at a meeting the other day, I had not really put everything together. I was looking at certain problems on their own, and only when I had to.



But like many other people my eyes are playing up and changing rapidly sometimes, so its very difficult to read, or see words or item for what they are.



I guess its a form of word blindness, I see the word but these days don't always understand what it means, or is trying to say, and that is very hard to cope with, and can be distressing.



I know that it does not happen all of the time, but when it does it causes a lot of upset, trying to think how to spell a word, or say it, even breaking it down does not help, and trying spell checker does not work, if you cannot get the gist of how a word should be said let alone written.



This also causes problems with the blog, because I get comments about spelling, yet some days everything looks good, its only later when you go back and see words which don't make sense

I sometimes look at words and think they are foreign, yet they are English, its just my brain playing up and not registering what it says or means



If I am copying numbers these days I have to say them out loud, otherwise I say them back to front and that is really embarrassing.



I have had this for years, yet when I had eye tests I have been told that my eyes are fine, nothing wrong? now it seems that some people have noticed that we really do have problems.



For some time I have had problems crossing the roads when busy, as I simply cannot judge just how far the next vehicle is away from me.



This can be serious, and on two occasions, I have been too close to buses coming along the road, and have been saved only by the fact that there was a traffic island which slowed the vehicles down.
This all came to a head in London this week, when I was shouted at by my wife, and ended up being guided across the road, something I really did not want. But when you are nearly run over by two buses, you start to think about just what is going on in your head.



I had this early on in my illness and it came as quite a shock, but it seemed to clear, so I never thought about it again. Or was it that I crossed these same roads when my  brain was having a good day, I simply don't know.



But spacial problems is one of the major things we have to cope with on a daily basis these days and that's not where it ends.



I have walked into many door frames because I missed the door opening completely, and when it comes to escalators or elevators and revolving doors, I simply freeze at times, because judging the right time to step forward is a nightmare. This also causes upset, because those following simply think you are messing around, and are holding them up, they simply do not understand your predicament and possible fear at the time.



Staying upright in shopping malls is another thing which causes problems, as other people these days live in their own world, and try to walk through you or across your path leaving you feeling unstable

Many find their hearing goes, or can go between very acute and very bad depending on the situation.

I have hearing aids to help in noisy situations, but also need to use them turned up when listening to the television or radio.



But on the bad days, a noisy voice or even a bag of crisps being opened, can make life unbearable.

I know that I am certainly not alone with this, and on these days I long for a quiet sunny island with no radio or television or indeed people to upset things.



Many think that this is a part of depression, but its a major part of some dementia's and its difficult to get used to.



We can then look at other co morbidity's life, depression, diabetes, heart, stroke and many other problems and the list goes on all making life with dementia a mine field to live with.



I guess as someone said the other day, when dementia strikes, other bits start to follow in rapid succession..



This subject is something that is fascinating to learn about, because you really learn so much about your life, things that you either ignored at your peril or simply took for granted
 
I suppose that is all bad enough, but when you get a chest infection etc these things get even worse, and no matter what you do life is miserable. 

London Underground and dementia

Yes I have Lewy Body dementia and I have struggled for some time with London Underground, but now this new section of tunnel from Kings Cross station to the underground is something that I cannot cope with at all.



Its certainly not dementia friendly and I doubt if anyone with any neurological illness can cope with it.


It may seem space age, but that's about it



Its not straight and the walls are curved, so its difficult if not possible to stay upright, as you cannot touch the wall without reaching out and losing your balance.



To add to this it is full of idiots who don't know their left from their right, so while trying to walk along the wall, you are pushed out of the way, by these clowns going in the wrong direction, or those who left too late and are in a hurry.



Why do these engineers build monstrosities like this without consulting those who have to use it on a daily basis, or those with terminal illness.  Is this the work of the Mayor Boris or Network rail engineers who just do what they think is best without consulting the public.



Before this section was built I could cope without too much trouble, but now you seem to walk miles out of your way in atrocious conditions without support of handrails or guards rails to keep you upright.



This really s a nightmare for people with any form of spacial problems, and possibly a waste of public money, and while I know that things must improve, we can do without this,



Please consult others before building places like this in the future.

Tuesday, 11 February 2014

Flooding in Britain

As someone who has been flooded at home in the last few years, I am staggered by the lack of response from the British Government, who seem hell bent on passing the blame onto the Environment Agency.



This is a very distressing time for all who are effected by these floods, and to be honest these elected politicians are helping no one, and neither are the press, who seem to be having a wonderful time getting in everyone's way.



Whether we like it or not the government has drastically cut the budgets of all government departments over the years, including the environment agency, who according to treasury guidelines can only spend so much money per house hold?, something they are trying now to say is wrong, yet listening to the media these days the money is endless


This is politics at its worst, and lies at best because no one seems to want to  be responsible in Parliament, and the minister responsible is now on sick leave, and the country is left with MP Mr Pickles who seems hell bent on slagging off anyone outside the Government.



The odd thing is that these politicians all know that the budgets have been badly cut to suite the Chancellor, yet they are still trying the blame game. What happened to honest politicians, do they no longer exist.



As a person who knows what it is like to struggle during and after a flood I find these politician's remarks to be totally unacceptable, wrong and unhelpful.



These people should hang their heads in shame, because they have lost control of the situation, now and Mr Cameron has been panicked into doing something 6-8 weeks too late



We are also seeing these flooded areas being flooded by the media showing pictures of empty houses and people in distress, I suppose cheap news all round at the expense of those in distress.



Some of these properties are now at risk of burglaries simply because of media stupidity, so why does the government not step in and clear these idiots away from these floods.



I guess the answer to that yet again is the dear Mr Cameron is dead against media control, so these people can get away with anything they wish, whether we like it or not.



This country is heading into building a new high speed railway line to Birmingham and Manchester, a line which will save at most 20 mins per journey? so is that worth it when the rest of the county is in a total mess. This money should be used to improve the country as a whole, especially when we consider it could be built by outsiders.



Lets us stop blaming everyone else, and get control over this situation, before too many people get hurt by this blame culture.



This could all be to do with global warming, it certainly seems like it, but its time the government got to grips with this.


  



Monday, 10 February 2014

King Lear and Lewy Body Dementia

A very interesting article to read.

King Lear could have been suffering from Lewy Body dementia, the actor Simon Russell Beale has suggested, as he discloses the medical research he undertook before taking on the role.
Russell Beale, who is currently playing Lear in the Sam Mendes-directed production at the National Theatre, said he had studied the form of dementia to help him understand the character.
Speaking at a platform event at the theatre this week (Weds), he said the research had helped inform his performance of a Lear suffering hallucinations, fear, anger and a shaking hand.
“In this one, I thought I bet Shakespeare, being the acute observer of human nature that he is, would have studied old men,” he said. “I thought: I’m going to do a bit of research.”
He added it was the first time he had undertaken such specific medical research for a role, as he called on qualified family members to assist him.
“It was fascinating,” he said. “It was the first time I’ve ever done it.”
He added the illness was not a “blueprint” for the character, but had help inform the way he played his version of Lear, who delivers the line: “I fear I am not in my perfect mind.”
The description of Lewy bodies sufferers experiencing “sudden outbursts of rage” had “seemed to tie to Lear very well”.
According to the Alzheimer’s Society, Lewy bodies accounts for as many as ten per cent of dementia cases, and involves symptoms associated with both Alzheimer’s and Parkinson’s disease.
They can include hallucinations, delusions, sleep disorder, agitation, aggression and mobility problems such as stooping, shuffling and trembling of a limb.
Telegraph reviewer Charles Spencer, who awarded the show four stars, said Russell Beale “movingly captures Lear’s terrified intimations of madness”, with his insanity “often harrowing to watch”.

Poem



A poem published by a dear friend who has MS.


I  read it and thought it matched my thoughts about life in dementia, so nice but realistic and too the point.



My heart is in my boots,
I can see no reason for looking forward
And plenty for looking back
On how things used to be,
And I don’t even have to wear
My rose-tinted spectacles.
Time may have smoothed the edges
Of my recollection
But the past carries with it an inherent security;
It has stability and no unknowns,
And whereas looking into the future
In former times would have meant
Excitement and promise and adventure,
Now it is a journey
Fraught with uncertainty and doubt.
I am no longer myself,
Merely the product of my life’s circumstances,
I don’t belong to the present any more
Than I belong to the past.
Somewhere between the then and now
I have lost the person I really am.
The future has claimed me
And draws me relentlessly onwards
Towards the person I shall become
But I am afraid that person
Might not be me.

Anne Wilson




Antibiotics and Dementia

I am wondering if antibiotics cause extra problems to those who have dementia, because since I started my last dose of this drug, I have been living in a dark place, where I have been very agitated and annoyed at times, taking it out on anyone who got too close, including my poor wife.



I feel as if my head is a a big vice, and find it hard to concentrate let alone think straight.


I have lost count of the amount of these tablets I have had since early December for chest infections which will not clear, and now I have decided that I cannot take anymore, and will just have to take the consequences if this does not clear by tomorrow lunch time, when this medication ends.



I know that they are there for a very good reason, but I now feel enough is enough, and I will try to carry on without them.



This has been a difficult decision to make, but I do think its the only one I can think of, as I want my life back again, and if the infection comes back I will have to face the consequences later.



I have been warned that if this does not clear I will be sent to hospital, but as my wife knows only too well, I will never allow them to do that as I have a fear of those places now, and there is no way I will give in.



But I have heard today that a dear friend in Scotland has had the same problems as me, and this proves that there is something going on between antibiotics and dementia, and perhaps the doctors have not made the link yet.



I know that doctors don't understand everything about this illness, but some of ours completely ignore my problems at times, as if they know better, then they complain when things do not work.

Why not listen to us first and then try.



Two of our doctors are brilliant and are dementia friendly so to speak, but you cannot guarantee to see the same doctor every time you go these days so there is not continuity.



 I am off to Southwark tomorrow so lets hope the change of air makes a difference

Just have to hope that things improve from now on 

Sunday, 9 February 2014

Dementia and Eyesight problems


Follow up of a previous article
  
After all of the tests were done on my eyes I confess that I am have no more idea about this subject that I had originally.
 

I noticed some time ago, that my eyesight was giving me problems when trying to read and concentrate on things like my blog, but when I got my eyes tested I was told there is nothing wrong.

I know that my brain fluctuates quite regularly during the day, through my Lewy Body Dementia, and I go from being active to not being able to work things out, so I am now wondering whether this has some effect on my eyesight as well as this also fluctuates, and after a while it becomes annoying.
I sometimes get blurred vision and other times I see double. I had double vision problems many years ago and it was corrected, but that was before the Lewy Body dementia started.

I also have word blindness, so I don't always understand words these days, and on other days find it very difficult to spell or think how to spell words, which is very distressing
Understanding numbers now is also distressing especially when it gets to larger numbers, I get very confused.

I confess that I am starting to wonder if the dementia is behind this, especially as it’s intermittent and not there all of the time.
I try to keep myself active but when this starts it causes upset as I cannot do the things I want to do, or cannot see properly to concentrate.
 There is now a lot of research going on into this subject, and I am waiting to see what happens, as many people with dementia, that I know seem to be having problems with eyesight too.
I am convinced that although the double vision was found and corrected, it has left me wondering about the other problems that I have on a daily basis.
I am convinced now that the most of these problems can only be caused by the Lewy Body Dementia, or dementia in general, but I confess that I got so stressed out with the people doing the tests that I lost interest.
I do think that this was because they seemed to have little or no idea about the project they were working on. 
It is so sad because the idea behind this was good, and could possibly have succeeded if those doing the tests had been more helpful and understanding. 
Even the Eye hospital could not say whether dementia can cause problems with the eyes. 
Perhaps sometime  in the future someone will complete these tests and come out with a plausible answer.  


I know that my eyes change quite a lot and this causes a lot of stress, even with the new spectacles, but I guess that's all down to trying to live with a brain disease 





But it must be remembered that there are many variations of dementia, and not everyone may struggle with eyesight problems. We will just have to wait to see what happens





As with all illnesses, we need to know about problems like this, not because I am angry at having the illness, but because the more information we have the easier life will be, to cope with in the long run 

Friday, 7 February 2014

Dementia and photography


After a very good sleep last night, in fact my first in over a month, I got up and decided to get my head into gear, and for once a topic came to my head, so here we go



Photography is a wonderful hobby for everyone these days,  but its also a lovely hobby for people with memory problems and dementia.



I  have many friends living with various forms of dementia, and quite a lot of them love this hobby because photography allows them to express themselves in a different way, and its very interesting looking at some of their photos as they all seem to see things in different ways.



A few years ago, I was close to giving up the hobby because, I was seeing too many professional photographs, and I knew that they left me for dead.



But a good friend in Scotland James McKillop, told me to carry on and ignore the rest.



He went on to tell me, that we see things differently to other people, and therefore our pictures are sometimes unique.



He then went on to have his own exhibition in Scotland, and I was very proud for him, perhaps not as proud as he was himself, but all the same very proud that someone with dementia could have his own photographic exhibition.



What is more his photographs were wonderful.



Yet when you look around there are few if any courses available for those who have this illness, simply I think because many people assume wrongly, that when you get this illness you are incapable of doing anything.



I know that there are days when I cannot work the settings out, so a short course would be extremely difficult to cope with, but it would be nice if someone out in the big wide world could put together a resource pack which would help those wanting to do this as a hobby.



I have noticed that some magazines are doing things like small skills cards with some settings on, and that is a good step forward as they act as a prompt when you badly need it. Perhaps someone selling these in complete sets would make like much easier



There are many short courses out in the world for carers, but when you have this illness you are largely ignored, or the course is written for people with perfect memories, unlike us where we have short term memory lose.


I can get used to something, and then the next moment its gone in to the distant, and that can be upsetting, but we just have to keep pushing forward and hope.



I do feel that sometimes a short graphic course or a small pocket sized hand book would be ideal, as it could be taken with you and used when the wheels come off.



I know that some people out there with this illness, think some of this is patronizing, but we must remember that all dementia's are vastly different and no two people are the same with the same problems.



People sometimes ask why we don't stick to automatic settings on cameras. The short answer is that we, like everyone else, all try to push the boundaries even with this illness, so manual settings becomes fun to attempt, and in this time of digital cameras, you can delete your mistakes of which there are many, each time you go out.



We hardly get a rapid response if we see something flying towards us unless its a good day, but if it works we really do get a eureka moment, and you look at this with total pride and astonishment, but along with that you get many failures.


I have had this watching swans taking off and landing, and you feel full of pride, even if you got the settings wrong at the time



But its all good fun, and while you can do it, you are keeping your brain active.



I have found that I get very tired some days when I go for a walk round the riverside park, but I have noticed that if I find a nice wall or something to sit on, and just wait things like swans and ducks come and sit down by me.



This only happens on the quiet days, but the thrill and enjoyment is amazing, because you are allowed into the animals private world, and can take photos without worrying them or being worried about swans getting too close.



 I admit that I get worried at times when these large birds get close, but that's all down to my spacial awareness, but between us we are getting better, and in some way I feel accepted by them on these quiet days. Its amazing if a swan gets close enough and allows you to touch it, it gives a true feeling of peace and nothing can ever replace that.



I have seen king fishers down there but I am not fast enough to photograph them, nor do I have a large enough lens, but its still s thrill to try.



So please encourage people with dementia to do this as a hobby, or perhaps get a local photographer involved to see if they can inspire new people to get involved with this wonderful hobby.


  

Thursday, 6 February 2014

Flooding

Looking at the news these days I feel very upset for those who are under threat of flooding in the South West of England.



Having suffered from flooding two years ago, we suffered a lot of upset and distress, and we had to move out of our home for 6 months while it was rebuilt. A lot of this has disappeared from memory now, which is one of the positive things, if I can say that for memory problems.



We had around 30 inches of water in the house for around 6 hours, after which we were left with a sea of mud and sludge.



When I look at television and see the homes in the South West, I do wonder how they cope with this as its gone on since Christmas, and there seems to be no end in sight.



How many people in this are have problems like dementia, and are struggling to cope. It must be bad enough when you are fit and active, but if you have an illness it will be devastating.



I really do wonder what is going on. I do understand that a lot of this could be to do with global warming, and some of these areas are places reclaimed from the sea over the centuries, so is the sea claiming it all back again, if so lots of places around the UK will soon be starting to disappear.

Its a little bit frightening to me, but I suppose I am well away from the sea.


I gather some of this could be stopped by having large holding areas in the hills, but will the government do this, or will they simply sit back and ignore this problem.



They seem hell bent on spending billions of pounds on a train line From London to Birmingham and Manchester, something which makes little or no sense when its going to save around 20 minuets on a train journey to London.


They already have a brand new track linking these areas, so surely putting faster trains on this track would be more economical, that would leave more money for projects which were needed like flood defences, around the UK in general



I know that the country is in a mess, but wasting money on this HS2 is unneeded and wrong when other things are needed, and are yet ignored by a bunch of politicians who don't live in the real world.
I do think we need a government run by normal people and not a bunch of millionaire's many of whom went to Eton, and think they know everything.



Its fairly obvious that these people have no idea what its like to struggle, even though they claim otherwise.


Back again

Its been a very long haul with constant chest problems since early December, and I am no where near to getting clear of them yet.


I am now back on another long dose of antibiotics, in the hope that this will clear the problem up once and for all, but its left me feeling very tired and low, because of the trouble breathing and the constant coughing up of mucus by the bucket load.



When I wake up each morning, I feel as if I have a bag of cement on my chest, and it takes time to clear this so that I can breath again.



Over the last few weeks I confess that I lost total interest in all of my hobbies including my blog, and this in turn has hit my ability to think and work things out.



I have been warned  that I will be a hospital inpatient if this does not clear, and I confess to being terrified of that now, I simply don't want to go there. I now have a fear of hospitals and simply don't wish to go there, because those places and dementia don't go together anymore.



It could well be as one doctor put it, that my lungs are in a mess from years of industrial poisons, from asbestos dust, wood dust, along with other stuff which was inhaled over the years without thinking about it.


Health and safety is far better now that it was in the 1960-70s, and when you see that hazards you worked with in that time its quiet frightening, but that's all water under the bridge so to speak, and what's gone can not be put right now. Some hazards were well known about others were not until it was too late for many.



However I did get asthma from wood dust,  and I understand that this could also be my asthma going into the next stage, and that is something which has not been fully explained yet, but no doubt that will come in the next few weeks if this does not clear as expected.



Many years ago I was a smoker, until I was given an unholy talking to by our then Welsh GP, who said that I would not live to see our children grow up if I did not stop. This was because I had bronchitis for the second time in 6 months.


 At that time I was also working on large oil fired boilers, doing all of the servicing and cleaning.  That night I walked out of the flat and threw the cigarettes in the boiler and never touched one ever again.



These days doctors do not speak to you like that any more, which is a great pity, because the world would be healthier place if they did, we would not have the vast numbers of obese people, nor would people be still smoking wrecking their lives along with other peoples lives with passive smoking.


But that's life as we know it and these days no one likes being told what to do even though its common sense.



I suppose that main problem these days especially in the UK, is that each time you go to the doctors you tend to see a different doctor, who has different ideas of what is wrong and what is needed, there is no continuity anymore. If you ask to see a certain doctor, you are frowned on, yet as one said its the only way to keep continuity these days.



Like all illnesses these days, I do feel that if a doctor does not understand what is going on, they should refer you to someone who does understand, so that support and help can be given rather than dragging it out so that things get worse.


When you have dementia and get other problems like this, life becomes very hard, sometimes distressing and difficult to get yourself inspired let alone do anything to help yourself.



You cannot think straight, and sometimes becomes very distressed, and then take it out on loved ones, which hurts even more.


I no longer have or feel religious, I feel as if its all sliding away, as everything which I held so dear, means little or nothing these days.

Carers struggle at times seeing this and I gather my wife has been upset in church  and places like that, simply because, she can see the damage being done to me, while the doctors simply sit back and don't want to do anything.



We have now at least found a doctor who is genuine and helpful, but it remains to be seen, how long this will last as I am not positive any more, I confess to be losing the will to fight, and that is something I don't like admitting to, but I know that its true now.



I can only hope that this year improves after this start.

     

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