Dementia and Comorbidities

I knew that there were similarities between Lewy Body Dementia and Parkinsons, but I have only just realised how close they are linked

People with Dementia and memory problems struggle with other problems,  but it's not always taken on board

Over the years I have struggled to get my words out when I am in a group of people, or in a meeting, and thinking of the answers to topics fast enough, is something  I was good at in the past, but these days I struggle.

This can occasionally  lead to me getting frustrated and agitated at times,  because i cannot get the words out, or think or the correct words, when i need to,  and sometimes the conversation changes so fast that it's a waste of time.

This means that fast moving conversations and topics can be very hard to keep up at times, because you think of questions but are not allowed to interrupt until it's too late, by which time it's all forgotten

I understand that this is all because it takes my brain longer to process things and  to get my thoughts together these days, and consider my answers.

This usually means that by the time I am ready to speak the topic has moved on,  and this in turn can lead to agitation which can be embarrassing and upsetting.

Yet when I am giving a talk or presentation in a large room with lots of people, it does not seem to bother me.

I guess that's because there is only one person talking at the time

I noticed this a few years ago, but thought it was just my memory playing up at the time

This was discussed on friday at a balance clinic which deals with Lewy Body Dementia and Parkinsons

It seems that my planning is not as good as it used to be, and this also means it takes me longer to work out normal things these days

After being shown a Parkinsons Disease fact sheet it all started to make sense to me, because it seems that it's part of the illness.

There are times when the tone of my voice changes and that can be frustrating especially when you use technology to assist you in doing tasks like computer work.

I had also realised over the last few years that my voice changes from day, and sometimes every hour, and this in turn causes problems when using voice activated software on my computer.

One day it recognises my voice and works, while the next time it does not recognise my voice and does not work

Parkinsons

If you have Parkinson's, you may find you have some problems with your speech.

People with Parkinson's may find that they have problems with different kinds of speech and communication, including facial expressions, writing and finding the right words to express their views

For example, your speech may be slurred, your voice hoarse, unsteady, or quieter than it used to be.

You may find it hard to control how quickly you speak or you may find it difficult to start talking.

People with Parkinson's may find their voice sounds monotonous.

These problems can make everyday activities difficult, such as talking to friends difficult

This is something I found a few years ago after listening to a recording of my voice. It had changed a lot since I was working and I could not believe that it was my voice I was listening too, and felt like deleting it all

Taking the lead in conversations may e challenging at times

Taking the lead in a conversation or presentation can be very challenging at times, but I have learnt to write things down in advance, so that I dont get confused or Lose the plot, 

Dementia and the Church of England

Over the years I have been amazed at the lack of interest, the church of England has in people with dementia, memory problems or parkinsons etc,

Many people grew up as members of the Church of England etc, and now feel like outsiders, because they are largely neglected by the church these days

I had started going to church from a very early age,  then joined the Church Choir at the age of 8, and carried on going, until my memory went haywire

However as a person who grew up in a Church of England family,   I find it staggering these days,  that the church has so little time, or respect for people with memory problems etc.

Yet these people,  are usually the ones who try to attend church regularly, and pay into the church plate every week.

Yes many Churches have had dementia friends events,  but as a person who is religious, I know that is as far as it goes

We are tolerated, but not accepted in most churches.

I have spoken at many events about this subject,  but in all honestly I don't feel that the church thinks enough about people with these nuerological illnesses.

Many of the  clergy I  have seen at events, dislike comments against the  Church of England, but if they cannot take on board constructive criticism, then to me they are in the wrong Job.

We all grew up with the fact, that no matter what our religious views or beliefs were, we were all equals in this life

There are thousands of us around the UK and the world, living with an illness that we have no control over

We are  just as religious as those who attend church every Sunday, but these days many like myself have simply given up the will to go, because of the constant changes in services and lack of respect

I once wrote the Bishop of Durham,  explaining my problems with the changes of service, coupled with the fact that I sometimes struggle with very graphic nightmares during the night.

I then explained the fact that I don't really go into a deep sleep until around 4-5 am. After this sort of night,  I am not what could be called a morning person, because it takes me time to get my brain into gear.

He promptly wrote back telling me to get up and go to an 8am service on a Sunday mornings,  where they run the old forms of service.

So had he read the letter correctly?, or simply ignored the problems I and others face with this illness.

After that I decided that it was a waste of time trying to write to anyone within this establishment, because they were not interested in dementia or people with memory problems.

But I do think that when churches etc,  hold dementia friendly days etc, they should make sure that they have people with the illness there,  if not running it

People with this illness do not gloss over the illness, they say it as is, from their point of view. I know that we are all so very different, but that's life.

This is a vast difference to hearing about dementia from staff or volunteers, because they are not usually living with the illness, where we are

There are hundreds of variations of dementia,  and all are so very different, with different symptoms and problems.

I once heard of a Church of England curate telling people that he thought it was a total waste of time and money,  going into care homes to do services

In his view they all sat there and never took part.

But I do wonder if he realised that many with this illness live in the past, and remember the old forms of service, with old hymns and prayers.

They don't go in for changes to services, with modern songs which are sung over and over.

They need to be assured that services will be a simple and realistic as possible, with no long winded sermons. 

It's just no good expecting people who grew up with old services to learn new services.

It's very upsetting when you grew up "saying" the Lords Prayer, then find that you have to sing it.

When I lost my job because of memory problems,  I also lost the ability to remember the Lords Prayer, and I was devastated, as I had known it off by heart since an early age

I worked at this for months  and then decided to return to church, only to find that the words were totally different, and not only that, but they changed every week, and sometimes sang it.

My wife spoke to the clergyman in charge  but he just said, sorry that's life.

From then on I lost the will to go back.

We are supposed to be living in a Christian Country,  but these days I am having serious doubts about this.

After this we found a book of short church services, in a charity shop. 

This was written for people with dementia etc, and it's ideal, because everything you need is there.

Dementia Tax

After 5 hours I have managed to write this article, about something I find to be disgusting

Over the last few days we have heard all about the Tory Governments "Dementia Tax"

But in all honesty,  I do  think that it's more than a Dementia Tax, it's a tax on all of those who have terminal illness in what ever form it is,  and need care at home

Many people want to die at home these days, and why not.

But if it was not for the savage cuts to Council Budgets, we would not be in this mess in the first place

Social care is now mainly run by Private companies rather than our own council services, so it's going to cost a lot more
They also forget that most of the care at home is done by family members,  with a little support from outside, and that includes the "Government"

There are better ways of cutting costs these days, but for some reason this Government does not want to look carefully at where cuts should be made. 

They are hitting the vulnerable in this country and that is awful, considering we are supposed to be a "Christian Country". 

Dementia like other Nurological illnesses is not self inflicted, therefore we have done nothing to get this illness, yet we are being victimised by the Government 

While social care costs a lot of money, I think the terminally ill  are being held to ransom

My main concern is that some people who are living with Dementia etc, may wish to end their lives, so that their families are not left with huge debt or living with the fear of losing their homes 

While this  tax appears to have been stalled at present,  the Prime Minister says that she is going to look at it again once her Government are back in control after the election, so this must mean that she intends to push it though at any cost at a later date.

I do wonder if this so called Christian Prime Minister has any idea about the terrifying pressure she is adding to those living with Dementia or any other terminal illness now.

Her actions are certainly not the actions of normal  caring Christians, and I do wonder how she can enter a church with a clear mind on Sundays

We now have a general election, and it's up to everyone to vote, to protect the sick and elderly who have done so much for this country

The choice is yours please make your vote  "count"  but please stop this tax on the terminally ill because it's disgusting and very wrong

Manchester

My thoughts and prayers  went out to all caught up in the Manchester bombing the other night.

This sort of thing makes me feel very sick, and it's worse when children were the target, by a set of cowards.

We were away at the time without internet, but I found that the media were acting like a lot of wolves, who had found something and would not let go because it was endless.

I do think the media made things much worse because they kept showing photographs of the dead people, with total disregard to the families and those left  badly injured

I hope that this sort of thing gets sorted out properly,  and we get away from this sort of terror for ever

God bless our NHS staff in all departments including the Ambulance services, because without them we would all be lost

There were many hero's here on the night,  who just got on with things, and never thought about the fact that there  could have been more bombs.

Having said that these people will let not regard themselves as hero's,  they just did what came naturally, and that includes the two homeless men who were sleeping on the streets that night.

I hope that they too get some recognition

Let us hope that this is a lesson to the Government, because its something they must accept and take on board.

They have to think carefully in the future and put more money into services,  rather than cutting them

I also hope that the the members of parliament stop fighting each other, and stop blaming the Muslims for these horrors, when it's totally  against their religious beliefs to kill others

Since the Brexit vote, this country has become very racist and it's very worrying for all, because most of this was started by Politicians who lied and are continuing to do so now. 

Aging population

I think we all know, that most people are living much longer than they did years ago, but that's because medical treatment is much better these days, as well as the fact that we have much better living  conditions

But its terrible when we hear people like politicians complaining about the aging population and blaming them for adding to,  or causing the Health service problems, and this makes me feel  annoyed

Many of these elderly people have worked extremely hard in their lives,   and have  paid their taxes in full, unlike today where tax can be paid offshore, so that you can keep most of your money away from the government. 

The thought of doing that years ago would have been looked at as fraud, yet these days it's quite common.

But if everyone did this sort of thing there would be very little money to pay for things like the health services etc, and I think we are getting close to that point now, because so few people are paying their fair share of taxes in this country

These days funding is totally wrong,  because some of the wealthy councils in the UK are subsidised by the poorer councils. 

To  me council tax should be spent where it's been raised, and should not be sent off and used in other areas. We have also seen the savage cuts to county council budgets, which in turn hits things like social care

Over the years many councils run  care homes have been allowed to close down, so that they could be run by private companies, this in turn is just another way of hitting the sick and elderly

It's my view that care homes should be provided by the health service and should be open to all.

By doing this we could make sure, that hospitals are not clogged up by people, who should be at home, but don't have the support and backup.

It's my own personal view, that those who have worked and paid their taxes in full, should be looked after properly no matter what age they are.

Whether we like it or not the National Health Service was set up to provide health care for all, no matter what age they were or what illness they had.

If that means the NHS running care homes and social services, then so be it

But please stop blaming the health service problems on the elderly everytime we seem to be running out of money, because it's all down to very bad Governments.

If we look at it carefully the "NHS" is not just doctors surgeries and Hospitals as the Government keep implying, it also covers thousands of people working in big office blocks, with little to do with hospitals, yet these people get big pay rises every year, unlike nurses etc,

The NHS is full of these  quangos of little groups of people,   throwing money around as if it's their own. The problem is that no one has any idea how many Government Quangos are hiding within the NHS, but they are cost many £millions 

These groups were all removed under Maggie Thatcher because they were a waste of public money, yet the last Labour Government under chairman Blair and the Tory Party have brought them all back.

It's these other people within the NHS, who are using and wasting the money meant for hospitals etc.

Over the years it has been quite obvious that Governments in the UK are taking money from one pot and using it for something else, just like the car tax, which I gather is used to paid benefits.

For years the British Governments have lied about the state of the NHS, and have not ring fenced the money, and then allows it to be spent on something else

It we are to look after things like the NHS, then we need to stop wasting money on unless projects like HS2 / Cross Rail etc, and start using the money wisely
It is reported that these two projects are costing the UK nearly £100 Billion

We must remember that the elderly have  hard all of their lives, and as I said paid their taxes in full, and many others have served the country in the armed forces, therfore they should have priority over others who have not paid taxes in full.

However doctors are getting better at diagnosing and treating many illnesses these days, and while that's a good thing, with better treatments etc, come higher costs, especially in hospitals

These days we are seeing more and more cases of self inflicted problems which need hospital care and treatment,  including those who regularly go out and get totally drunk, and then end up needing extra hospital care.

To me these people should be charged, because many of them end up being abusive towards staff and other patients..

So we must look at the problem as a whole and stop blaming the elderly every time for the high costs.

Three Nations Dementia Working Group

Three Nations Dementia Working Group 

Just after Christmas I heard that a new Dementia Working Group was being set within the Alzheimer's Society.

Scotland has had its own Dementia Working group for quite a few years, so it was decided that the members of this group would be drawn from England,  Wales and Northern Ireland.

The thought of doing something positive, and trying to improve the lives of people living with dementia, while removing stumbling blocks like the stigma we see and hear of on a daily basis, spurred me into action.

This group allows us all to work together where our voices can be heard by all within Society 

We have one member from each of the Alzheimer's Societies 12 Regions  

Chris Roberts,  North Wales,    Linda Willis,  and South Wales.

Danny Brown &  Liz Cunningham, Northern Ireland.

Ken Clasper,  North East England.     Joy Watson, North West England.

Wendy Mitchell, Yorkshire and Humberside

Shelagh Robinson, West Midlands.     Alex Preston, East Midlands

Peter White,  East England.     Hilary Doxford, South West England

Keith Oliver, South East England.   Dianne Campbell, London

It must be remembered that this is a group of interesting people,  who want to help others, and they are all very friendly to be with 

If anyone in "County Durham or Northumberland" would like to get involved, I would love to hear from them, and I will gladly go to any groups in this area to talk about the Working group, and explain how they can get involved if they are interested

This is a wonderful opportunity and a chance to speak up for everyone with the illness, while  getting together and meeting new friends from around the UK.

As an Ambassador with the Lewy Body Society, I am proud to be working with the Three Nations Dementia Working Group

So why not contact me if you live in this area.

Ken2clasper@gmail.com

I look forward to hearing from people, from the Northumberland and Durham areas, who wish to be involved 

Do Doctors really understand

6 weeks ago I got my final diagnosis of Bilateral Bronchiectasis and Emphysema, and my medication was changed.

The only problem was that the clinic was running one and a half hours late, so there was little time to discuss medication changes.

As well as my normal ventolin and Symbicort 400, I was put on a Spiriva inhaler once a day and mucus capsules which break the stuff free of my lungs each day

When we went to see a family doctor, I felt as if I was wasting my time, as she really did not want to discuss my medication changes because, in her words, the hospital consultant should have done it.

She also got rattled that she was expected to do my prescription, because she said the hospital should have done it.

I asked what order I had to take the extra inhalers, but she did not say, and did not even look them up.

In passing she said that once the new spiriva inhaler and mucus  tablets started working, I would not need to use my ventolin inhaler as much, and in all possibility I should be able to cut it out.

In the end we had a long talk with our local chemist, who was disgusted,  and said that the ventolin was the most important inhaler, because it opened the lungs, and allowed the Spiriva and Symbicort inhaler medication to get right inside the lungs.

I always had two ventolin inhalers, one left at home, and one in my coat pocket where ever I went, but this has now been cut down to one.

Yesterday the weather was heavy and I felt terrible, as if my chest was being crushed by a large belt.

This left me wondering whether to use the ventolin at lunch time as I was originally told, or try to do without it. 

Originally I was told to use the ventolin 4 times a day, when I was struggling, so I guess I need to ask the specialist when I see him next.

I am really looking forward to discussing this with the chest consultant early next month, in the hope of getting somewhere.

Deerness Nature Country Park and Low Force

Last week my wife and I went for a drive up the Tees Valley through Middleton in Teesdale and on up to Deerness Country Park

We have done this on many occasions, but we felt it would be nice to go back again now that its been done up for the Summer

                Looking down on the Tees from a layby heading towards Middleton in Teesdale

Looking towards Middleton in Teesdale, a lovely little market town

                   Deerness Country Park bird feeders, which attract many different birds  

           Stone Sheep, with the inscription "ITS A WONDERFUL PLACE TO WALK" 

                                                     

Two very young calf's  with two cows

         A very curious young Ram

                                                Low Force from the suspension bridge

   Looking down under the suspension bridge

Looking across Low Force

We had a lovely morning out here, and I felt a lot better when we returned.

It had been a very bad day as far as thinking was concerned, but we did this before we packed up to head back home again for a few days  

I had gone through a week when I realised that things were not working as they used to do, and it had taken me a week to sort out a job which would have take a few moments not so long ago

Three Nations Dementia Working Group

Three Nations Dementia Working Group 

Just after Christmas I heard that a new Dementia Working Group was being set within the Alzheimer's Society.

Scotland has had its own Dementia Working group for quite a few years, so it was decided that the members would be drawn from England,  Wales and Northern Ireland.

The thought of doing something positive, and trying to improve the lives of people living with dementia, while removing stumbling blocks like the stigma we see and hear of on a daily basis, spurred me into action.

This group allows us all to work together where our voices can be heard by all within Society 

We have one member from each of the Alzheimer's Societies 12 Regions  

Chris Roberts,  North Wales,    Linda Willis,  and South Wales.

Danny Brown &  Liz Cunningham, Northern Ireland.

Ken Clasper,  North East England.     Joy Watson, North West England.

Wendy Mitchell, Yorkshire and Humberside

Shelagh Robinson, West Midlands.     Alex Preston, East Midlands

Peter White,  East England.     Hilary Doxford, South West England

Keith Oliver, South East England.   Dianne Campbell, London

It must be remembered that this is a group of interesting people,  who want to help others, and they are all very friendly to be with 

If anyone in the North East of England would like to get involved, I would love to hear from them, and I will gladly go to any groups in this area to talk about the Working group, and explain how they can get involved if they are interested

This is a wonderful opportunity and a chance to speak up for everyone with the illness, while  getting together and meeting new friends from around the UK.

So why not contact me if you live in this area.

Ken2clasper@gmail.com

I look forward to hearing from people, from the Northumberland and Durham areas, who wish to be involved 

Big Issue?

The other day it was suggested by my wife,  that I read a book called "For the love of Bob", by James Bowen.

This then lead on to me reading a second book in the series called "Bob No Ordinary Cat" by the same author

This was a real life story of someone who fell on very hard times in his life,  and was adopted by a cat who he called Bob

While reading this story,  I really got to understand a little about the lives of some of the people  we see on the streets every day selling the Big Issue.

These people are largely ignored in many cases as drop outs, but they are real people with real stories to tell.

These days many of these people  seem  to be immigrants trying to find their way in society, however there are still lots of people, who may well have lost everything in their lives, and are fighting desperately to get some sort of regime and routine back.

Unless you have been in this position, I don't suppose you would ever give them a second thought

I confess that I was a little naive until I started to read this book, and then found it hard to put it down, because it was compulsive reading.

I knew very little about the "Big Issue",  although I have probably read about it in the past, and then its disappeared from my memory like many other things.

But the idea of giving people a role in their lives, providing they are willing to work at it,  is amazing, and I will never look at these sellers again in the same way.

We all deserve a second chance although many never get this.

But reading about how Bob the cat, adopted and supported James was truly amazing.

We had a cat and two dogs over the years, and I was always amazed at how they could detect when you are feeling ill or having a bad day. 

Animals have this amazing ability to understand human feelings, and I guess that is why they are used to support people who are ill, or have long term medical issues.

They always say that a cat picks it's owner, because it's a very independent animal, and I belive that.

I also understand that it's a very intelligent animal and resourceful, and won't allow you into their private space unless they trust and respect you.

They say Men should not cry, but I confess I failed when I read these books, because of the emotion that these books bring.

It's been a pleasure to learn about "The Big Issue" and how other people cope with their difficulties.

Its also amazing how something as small as a cat,, can change things around

It's not my type of book by any means, but it's light and has a lovely story behind it.

Thank you James and Bob

Trying to do the impossible

Even though I was an engineer for 28 years, and could turn my hands to doing most jobs in my early life, things are now vastly different

These days, I usually find that a job that would have taken a short while to plan and do,  can take hours or days to sort out I my brain

I know it's because my brain is failing, but it does not help

When I was at the nuerological department the last time, they said my planning skills are slower that they should be, and that's distressing after having a very active life as an engineer, and being able to sort oroblems out as I was going.

But it's to be expected,  and it explains why it takes so long to write a blog out these days. 

It does not help when I look at things at times, and don't always recognise them as I used to do.

When you look at something that would have been classed as a simple job years ago,  it's now  become a major headache and that has a knock on effect of causing extea stress.

Recently I tried to alter a cupboard, and it took nearly a week to get planned so that I could do it.
Then I realised that I was doing it all the wrong way, by then it had taken quite a while to do.

This sort of thing has an effect on everything I do these days, it's no longer a case of getting up and doing the job as it used to be.

If I cannot sort it out, we pay someone else to do the work rather than making a mess.

I never thought that I would ever get to this position, because I could take on most jobs without giving it a second thought

I guess that I am not alone with this, but it does not help.

Its not easy writing things out, and then not reallly understanding or seeing the obvious later when it matters.

It now takes days to understand and write out things, that I would have done in a few moments. Considering that I used to write reports this is now very hard to accept
But with the use of voice activated software it's made things a little easier, although I find talking to a computer to be very confusing

On social media I have repeated myself so many times that I think it's getting close to the time where I just have to give up, because I don't always see the repeats until it is too late.

That on its own is distressing

For some reason I feel as if my brain is totally doing its own thing at times.

I know that there are people in a worse position than I am so I have to be grateful