Tuesday, 21 November 2017

Information pack for diagnosis of dementia

The other day I found this old 2006 blog about the information pack we were given, after my diagnosis of Lewy Body Dementia in County Durham, in 2005 

It was done as a way of helping newly diagnosed people negotiate the system.

Information pack for those newly diagnosed as having Dementia

This pack was produced by our local branch of the Alzheimer's Society, with help of our local County Durham Dementia hospital.

The pack contents were:-

Information about Lewy Body Dementia, including symptoms and complications etc.

Information about the medication I was being put on

Information about the local groups within our local Alzheimer's  Society branch, including Carers Support, Dementia Cafes,  and Discussion Groups for those living with dementia etc.

Phone numbers of our local branch staff

Direct phone number of my hospital  consultant, for emergency.

Phone numbers of the Dementia Hospital staff, including an emergency 24 hour number, which got the carer direct to an on call doctor or nurse at the hospital.

List of local services within our town,  including social services etc.

List of activities to help us to remain active 

Sadly, as this was a local pack, it had to be stopped because the Alzheimer's Society Central Office, objected, and said it could not be used as it was not a national project.

What a pity they did not think of getting it rolled out around the country, because it was so useful to everyone being diagnosed at that time.

One thing that would have been very useful at the time, was a wallet sized card stating, that I had Lewy Body Dementia, and contact details of my doctor and family, along with my medication etc.

One of these, "I have Dementia" cards was later produced by the Alzheimer's Society's  "Living with Dementia Working Group"

This was such a handy pack to be given after your diagnosis, because the support services were there at the time, and we knew where to go for help.

I found this to be a brilliant idea, as did many carers and people with  dementia


Monday, 20 November 2017

What would you do to stop Alzheimers

The other day some one asked this question on social media 


If you thought you were going to get an illness like  Alzheimer's disease, or Dementia  what would you do, or would you want to know what was coming.

I guess many like myself would be utterly terrified of the thought of getting one of these illnesses, but in all honesty, there really is nothing we can do to stop it.



I thought my life was coming to an end, when I was given the diagnosis of early onset Lewy body dementia, but my wife and daughter had other ideas, and without their support I would surely have given in altogether

This was before my second diagnosis  after we had moved  home, after losing my job. 

It was then we found out that my original notes had been lost by the first hospital

So I had to be diagnosed all over again, but after this diagnosis was confirmed again, I got more support and help than the original hospital had given me

I was told there and then to "REMAIN ACTIVE " and not to think of what was around the corner, and it helped me.

But my daughter was a biologist and had read about this problem at University, and she kept me going

I was then given this advice by the consultant. 

If a hobby or job you have done for years, and you find that it can not be done on one day, leave it and try it on another day

If it fails on the second day, leave it and try on a third day 

If it fails on the third day, leave well alone, and go on to try something new, otherwise you will end up being stressed and depressed, at losing the ability to do something

This will have a knock on effect on your family and friends

This was good advice and helped me to move on. 

Sadly this consultant left, to spend her time climbing the Himalayan mountains. I guess it was more relaxing than working for the NHS

But this lady was a real professional who wanted to help her patients


I do think people need more support after a diagnosis of dementia or Alzheimer's, because there is little or no  support  these days, it's still a post code lottery

It's my own opinion that there should be dedicated dementia nurses, at the diagnosis, who can then go on to support a person and guide them through their problems. 

There also needs to be more support for our carers, because they have to start from scratch, without any help from social services

What is more, they are saving the country hundreds of millions of pounds a year, with little thanks from the Government. 

A carers role is 24 hours a day, 7 days a week, trying to protect us from coming to harm, and in many cases, without rest themselves.  

Along with this we should be getting more information about our illness at the diagnosis, as I did. 

This allows us the time to take the diagnosis on board in our own time.

This information should also be kept up to date, because there are too many websites these days, which are out of date, and much of the information differs from other websites.


While the news media are full of ideas these days, on how to stop us getting these illnesses, I do wonder where they get these ideas from, or whether its just a way of grabbing headlines and selling their rubbish newspapers 

At the end of the day, if the specialists really knew what was causing these illnesses, or how to stop them, they would be highlighting this themselves

A few years ago, I was discussing Lewy Body dementia with a friend of mine, who has since died. 

We had both had Lewy Body Dementia, and had both worked on live electrical installations over the years, and we wondered if that was the cause, because its not exactly healthy working on live high voltage cables. 

There had been a lot of speculation in the media about high voltage cables and  other illnesses like leukaemia.

But I am sure if there had been anything in this, we would have known by then,

 However If you are going to get one of these illnesses there isn't much you can do to stop it, but by remaining active, it has been proved you can keep going for a lot longer

As one Professor in Neurology in the Northeast once said, we either "Use our Brain or Lose it". 

I have always remember that and it helps me to fight on, and I have no intention of giving in and stopping yet, because life is to short

However I do feel that's it's very important to get as much as you can out of life, and not think about what you have lost or are missing. 
It's about our pets, Families, and Grandchildren etc, and if you focus on them it takes your mind off your own problems

I know that it's not a bed of roses living with dementia, but with help and support from others, you have to make the most of a bad situation. 

I am only too glad that I have voice activated software and spell check on my computer, and this allows me to carry on writing my blog.

I am sure that I would have given in by now, if it were not for these two tools, because I can say the words but have little idea how to spell most if them these days. 


Saturday, 18 November 2017

Dementia and hobbies

Many people give everything up after a diagnosis of dementia, and simply give up the will to fight on.

 But others keep going with the it hobbies for as long as they can, while some even learn to do other hobbies, or even  learn a different language, which is good.

Over the years many of my hobbys have been given up, either because I forgot how to do them, or they became too dangerous to do any more.

As far as art is concerned I don't seem to be able to draw properly anymore, which is upsetting.

When I was an engineer I could go and look at a job of work, then I would sketch it out, and measure it up, knowing that I could work from the sketches etc.  These days it's all gone and trying to sketch things is very hit and miss.

However I do still fight to hang on to using my computer and my camera, and although I can't always remember the settings, I am still determined to hang in a long as I can

Other people have other hobbies, which vary quite a lot.

I know someone who now carves walking sticks as a hobby, and that is amazing to hear about.

I used to love wood carving, but these days, with lack of coordination, I am a liability when it comes to using sharp tools etc, so it's something that was stopped, although I still have my tools. But no doubt these will be sold off before  I do any damage to myself

Others go walking with groups, or meet other friends in pubs etc, where they have a good time.

I do feel that it's up to us all to keep fighting for as long as we can, because the thought of giving up is a step too far.

Some people like singing for the brain these days. However although I was in a church choir for over 10 years, I no longer sing these days, because I cannot get out of my boots as far as my voice is concerned, so I would rather doing something that I can still enjoy doing.

I no longer swim because of coordination problems, because these days, when I move my arms while swimming, my mouth opens and I end up swallowing more water than enough, so this was stopped.

However it's good to hear about groups for people with dementia etc, these days because people really need to remain active and mix with others where ever possible. 

I admit that these days I struggle due to my memory,  Osteoarthritis in my  knee and hip joints, as well as my breathing problems.

But I still carry on at my own pace and that's important to me, as well as my family 

Photography keeps my brain active and allows me to take photographs of landscapes and wildlife, and to me that's very important.

When I am out taking photographs, people always stop and speak, so I am never alone. It's amazing how many times a photographer has come up and spoken to me, and perhaps told me where to get photographs of different things. 

Yes I can have bad days when I don't remember the camera settings, but it's not the end of the world.,

These days I stick to automatic settings most of the time, because I struggle to remember the manual settings, and while it's upsetting to lose that part of the hobby, I do feel that it's not the end of the world. 

The fact that I enjoy going out with my camera, and enjoy myself is all that matters. 

I think everyone should be encouraged to remain active and mix with others while they can still do it.
.


Wednesday, 15 November 2017

What happened in my brain

I was enjoying my job of 28 years, as an engineer until my brain went pear shaped, and these changes were and still are terrifying at times

It all started when I realised that I could no longer write things out properly,  and kept changing from small case to capitals, without realising what I was doing. It was becoming a nightmare to use a pen.

I also struggled to write my signature, because I get so far through, and then forget what is coming next.

My hand writing was not something that I was proud of, but these days, I just won't fill any forms in or sign anything unless I have too.

I feel so embarrassed, and shocked at how bad it's got now.

There are times when it looks like a spider has done it, I have no control over a pen anymore, but I believe this is down to my tremor at times.

But it's not just my writing which has changed.

I sometimes have trouble typing because of my tremors, and go onto the wrong key,

However this all started at work too, and people were asking questions about why I had this tremor, because it was obvious at lunch time when I tried to use a knife and fork.

In the end I used to go home, where no one asked about this problem.

This  caused other problems because I found that I was unable to hold a screwdriver steady when doing electrical work, and that was becoming a hazard after 28 years

I then realised that all my electrical training was disappearing, and even my last electrical exam papers looked like something in a foreign language, something I just did not understand.

However not long after this, I noticed other problems which were unexplained, and to this day I dont really understand what's going on in my brain.

I noticed other changes which are strange to say the least, things like my taste in music and food changed quite a lot.
Before and after we were married, I never ate curries of any kind.

I always asked for a steak. These days I can eat curries everyday given the choice,   what is more, the hotter and spicier the better.

Everyone is staggered by this change, especially when it comes to very hot curries or chillies.
When I was younger I grew up with the Beatles etc, and also enjoyed classical music.

These days, although I still like classical music, I also like Freddie Murcury and Queen, Eric Clapton, and many others that I would never have listened to before.

I was never ever political, even though I had mild views about the subject, but these days my views have changed, and this terrifies me, because I always hated politics.

Understanding what I am looking at is horrible these days, because, I sometimes,  misunderstand what I am seeing or reading, and in occasions see the wrong words if I am reading.

It's as if my eyes and brain are no longer linked. But I no longer see obvious things these days, and can spend hours looking for something which is right under my nose, or I simply don't recognise it.
I also sometimes see things which are not there, and that's upsetting at times, but I try to watch to see if it moves before I do anything.

These days trying to plan things,  is a total nightmare, because it takes a long time to work out something, that would have been done in a few moments years ago

I know that I drive my wife mad at times, because I cannot always give her a straight answer,  it takes me longer to think and  work things out in my brain.

I think this is all to do with living with Lewy Body Dementia,  but we may never know until I pop my clogs and my brain is looked at.

I understand  that Parkinson's and Lewy Body Dementia are similar in many ways, but it's still very confusing to live with.

Monday, 13 November 2017

Balancing Act

Like many people, I find that life gets difficult, when you have more than one illness to think about, and this can cause extra problems with medication

Recently I was told that medication which supports us for one illness, can have the wrong effect on another illness which we may have

So in more than one way, medication can be a fine balancing act

I was diagnosed was having a form of Lewy Body Dementia,  something which never made any sense at the time, but I knew there was something wrong, because I was losing control over my job.

At first the doctors had thought it was something to do with  Encephalitis or something like that, because I had been very ill with pneumonia, but then the diagnosis of Lewy Body Dementia came out.

But at the same time I was struggling to cope while working, due to tremors and memory problems, which was hazardous, as I was trained to work on electrical installations  etc, and not the type of work which is easy when a tremor starts

I also had what was thought to be industrial Asthma, although I don't remember any tests being done.  However over the last two years this all changed,  when I finally got a diagnosis of Bronchiectasis and Emphysema

It seems that this all started when I was very ill with whooping cough as a child, and this Bronchiectasis damaged my lungs.

This was made so much worse because of years of working in industry.

After several  chest  infections a year, a new family doctor looked into my medical report and found that all of the chest infections were down to one infection which was deeply rooted in my lungs, and which refuses to go no matter what they throw at it.

I have found that after two weeks of antibiotics, I can be clear for around 8-10 weeks,   and then it all seems to start all over  again which is frustrating.

But during this time I had been told to use my inhalers more often than usual, so i carry one in my coat pocket these days. I also have an emergency pack of antibiotics, which I carry when I go on holiday

I also used a nebuliser to help my breathing and clear my lungs on a morning.

However this has now been  stopped  because one family doctor thought that the nebuliser medication was increasing my tremors.

It's very sad when this happens, but I guess it's all a learning curve, but the fact that the tremors got a lot worse, was enough for me to stop using the nubuliser all together.

The nubuliser had been a great help to me, but on balance the tremors were so bad last month that there really was no option

These tremors can be distressing at times when I can't hold a knife or  fork still at meal times,. 

So I  tend to eat using one hand,  while keeping the other hand out of the way.

Medication also causes problems with the Lewy Body Dementia, because the illness makes you sensitive to certain medications as I have found over the last few years.

I struggle with occassional graphic nightmares etc, and I was given medication to control it, but this caused more problems in the beginning, and had to be cut down to a manageable dose. 

So it's a delicate balancing act when it comes to medications, but luckily most doctors are aware of this problem, although there are  some doctors who don't always check before prescribing medication

However most medications are changed every so often if they don't seem to be working, and this causes extra problems with my memory, because I have to remember what to take and when.

Along with this,  I don't always remember how many times I have used things like inhalers. My brain just does not work remember things like this all of the time and that's distressing.

Thursday, 9 November 2017

Derby Dementia Group

Today I was sent a link to an Independent  Dementia Group In Derby, called the Hardy Group. 

This sounds a really nice group, for people living with Dementia, because it inspires them to remain active, after their diagnosis, when its far too easy to sit back and do nothing.

To me this is everything a Dementia group should be, encouraging people to remain active, and I feel proud and honoured  to know both Dave and Heather Roberts, who put so much time and effort, into running this wonderful group 

However, like everything else these days,  it costs a lot of money to keep these groups going, but I am hoping that we can encourage people in this country to step up and help with the running costs, to a brilliant worthwhile charity.

Far too much money goes into these Larger Dementia charities, who don't provide the real services which are needed these days, so its left to the independent groups, like The Hardy Group to step up and provide these services

The Hardy Group is a small charity supporting people living with dementia in Derby.  We are run entirely by volunteers and our activities are funded through grants, donations and fundraising.  We have been very successful so far in our efforts to fund our activities which allow us to put on social events and monthly day trips for our members.  For many of our members our activities are a lifeline and give them motivation to fight the progression of their condition and gives energy to their carers to keep on going.  For some, attending our events is the only time they get out of the house.
 
We are starting a new fundraising campaign through Virgin Money Giving and would be grateful for whatever you are able to do to advance our cause.  For our campaign to gather momentum we need to spread the word as far and wide as we can so can I please ask you to forward this email onto your friends and relatives to help us raise awareness and hopefully gather some funds along the way.
 
This is the link to our Virgin Money Giving page which will give you some information.
 
 
Our website will also give you an insight into what we do so please find the time to have a look.
 
 
It takes around £15,000 a year to support our 230+ members so any help, however large or small, will always be gratefully received.
 
Remember, all of us at some point in our lives will be touched by dementia, either directly or through someone we know.  With proper support life doesn't have to end when dementia begins.
 

Regards
 
Dave Roberts
Chair
 



The Hardy Group




       

Find out more

Charity details

Registered address
7 Gleneagles Close,Mickleover
Derby,
DE3 9YB
Phone
01332553031
Email us
Visit our website
Charity number
1169563

                           


Homepage


Life doesn't end when dementia begins. Believe it or not, with the right support and stimulation, you can live well with dementia!

members

The Hardy Group is a thriving social group for people living with dementia who wish to stay active through a programme of events and social gatherings. It is made up of people with dementia and current and past carers who through their own experiences support each other along their journey with dementia. The group has a very wide age range from the under 60’s to the over 90’s!


We are run entirely by volunteers most of whom are living with, or have lived with, dementia themselves. Our income comes from grants, donations and fundraising and every penny goes on providing support for our members. It is all about having fun, living life as fully as we can, making new friends and supporting each other in a community built on common challenges and mutual understanding. 

Through our social get -togethers and monthly days out we have created a sense of fun and excitement that helps motivate our members to keep on fighting the progression of symptoms and keep them out of the care system longer.

Social meeting

Social isolation is a major risk with dementia as the stigma of the disease frightens many people away. For some of our members our activities are the only times that they get out the house. Hardly surprising then that our coffee mornings regularly have over 120 attendees and that we need 2 coaches for our days out!


Days out

The mental stimulation and moral support that we provide is crucial. Our members are amongst like-minded friends so that they can be themselves. Nobody will judge them so they can let their hair down and have some fun. We laugh a lot and for a while at least it is possible to feel normal again. Everyone leaves our activities with a smile on their face.



Trustees

Dave Roberts
Chair
Sue Atherton
Secretary
Tony Muldoon
Treasurer
Bernard Crowther
Membership & Activities

Volunteers

Ann Crowther
Angie Soppett
Heather Roberts
Heather Govier
Jean Bailey
Sara Bailey
Carole Wheatley
Dave Harrison
In Memory Of Geoff Atherton, Founder Member. 1944 – 2016



Monday, 6 November 2017

Fireworks

Many people enjoy fireworks,  and when I was younger I enjoyed them.

These days I struggle and get startled very easy, but I guess it's because these things are much louder than they were before, and my brain does not cope with noise the way it used to do.

Recently I wondered how military people coped with these very loud landmines as I believe they are called..

These things seem to shake the house when they go off, and I confess they terrify me at times.

To today I heard that the Chelsea Pensioners were writing to groups running firework displays, asking them to think about people with post traumatic stress, from military action.

While I don't think many people will take any notice, I confess that I cannot really  understand what these people may be going through when they came home injured from war. 

But they must be so mentally scarred, that these noises bring back many unwanted nightmares of war zones.

Trying to  live with the nightmares and horrors of what went on, and trying to rebuild their lives, while others set off these very large fireworks around them..

However it's not just troops, we must also think of or pets and wild animals, along with our elderly and those who are seriously ill with perhaps heart problems.

While no one wants to spoil anyone else's fun, I guess we have to consider others in these  groups, because some of these very loud fireworks  or landmines as they are called can frighten many others

Thursday, 2 November 2017

Inappropriate touching

I hope I got this title spelt correctly, because I struggle with my spelling  these days,  and don't always see obvious mistakes

But over the last week or so we have heard lots about inappropriate touching in the news, as far as parliament is concerned

But this is something that has always worried me since my diagnosis, because when you are living with Lewy Body, or and other form of Dementia, you don't always think of the obvious.

I confess that there are times when you don't think correctly,  and some people don't make allowances for your illness.

What used to be classed as normal years ago has now changed, and in some cases it's become a minefield to deal with.

I was always nervous when it came to the opposite sex, but after seeing the news recently I have started to wonder where this will all end up

I guess those in the news have had little regard towards the opposite sex, and that's been their problem

But I never know how to deal with people these days,  as it takes so long to think things through 

I guess quite a lot of people with dementia are going to get caught out now, simply because they may be trying to be friendly.

What people with dementia class as friendly gestures, may well be taken  the wrong way by people who are able to think clearly, and I guess that carers etc, may well have to think carefully about this especially when it comes to meeting others in meetings or groups.

Tuesday, 31 October 2017

Call centres and Dementia

Over the years many of us have used big companies, when we buy British  products, only to find that they base their call and support centres abroad.

To me it's a nightmare, because half of the time they have very strong accents, and some don't treat the customers with respect

This is a total headache if you have hearing problems, or have problems understanding what they were trying to say.

I honestly don't understand why these companies use countries where their accent is difficult to understand

While it may be cheaper to use foreign labour, it does not help customers, who can't understand foreign accents

I have a virgin mobile phone under my name, and because I was having problems I phoned a call centre for support, only to find that it was in India or somewhere like that.

The noise was horrific, with lots of people talking, and the lady had a very strong accent

I got no where so I ended up going to Newcastle, and went into the virgin shop where a young gentleman managed to sort my problem out .

Thank you Virgin Media Newcastle upon Tyne

Thursday, 26 October 2017

Remembering a lovely friend and mentor

I found a photograph of a dear old friend Peter Ashley,  who sadly passed away last year

Peter is photographed alongside June Brown the Patron of the Lewy Body Society





I met Peter at a conference in Newcastle 2005, and it was called the First UK Convention of People with Dementia. 

Along with Peter were two other old friends, James McKillop from the Scottish Dementia Working Group, and Trevor Jarvis from Doncaster

It was watching and listening to people like these talking,  that got me  involved in dementia projects, such as giving talks, things I would never have done before.

I confess that I struggled after my diagnosis of early onset Lewy Body Dementia,  but Peter, who also had Lewy Body Dementia  took me under his wing  and helped me out quite a lot.

We would meet up at conferences and meetings and have a good talk, as well as the usual laughing fits at times when something was funny.

Peter could be very serious and did not tolerate idiots, but he also had a wicked sense of humour.

However although we were both Engineers when  this illness struck, Peter had the ability to remember a lot of things in great detail, something I was not able to do,  as I need time to process what was being said, before being able to answer a question

Peter was never afraid of standing up to professionals or health service officials, to tell them when they were wrong, or telling them to ask people living with the illness,  rather than making assumptions 

To say that he did not tolerate idiots, was an understatement at times, but his heart was in the right place, and he also had the grace to admit it, when he got things wrong. 

Peter had a favourite saying, something I heard him telling the audience back in 2005  and was, "NOTHING ABOUT US WITHOUT US". The other day I found it in some notes. 

He also had problems with hallucinations at times, and often used to speak about his big green frog, which followed him around, and sometimes sat with him in his study. 

 But I realised that by talking about it, he had come to terms with the fact that his brain was playing tricks on him, and there was nothing he could do about it.

It was his way of coping, and this in turn helped me when I could see things in patterned or marble  flooring. 






Occasionally I would see Peter looking at me with this look, and knew that either I was in trouble, or he was cooking something up, but he was usually deep in thought 

I often thought that he would have made a brilliant Actor or politician.

Sometimes we would spend up to half an hour talking on the telephone,  putting the world to rights, or discussing views to certain subjects. 

It was sad for me to see and hear him changing nearer to the end, and even though we both knew he did have long to live, he never discussed it. 

On a few occasions we had a talk  when it was fairly obvious that he could not really be bothered, because he was so ill, but it kept his mind off what was coming. 

 I was very proud to call him a friend, and a fellow Ambassador for the Lewy Body Society, a charity we both thought the world of.

Even though he is no longer here, I always mention him when I do my talks where ever they may be. 

Peter had a brilliant way of dealing with people, and to me he will always be remembered as a big friend,  and a perfect mentor 




Tuesday, 24 October 2017

Nursing and Dementia

When I did the blog about nurses training and Dementia, I wondered if this had been picked up wrongly, or my writing of it had been done badly

I have nothing but admiration for Northumbria University and it's training of Graduate Nurses, and have been totally amazed at how friendly and polite everyone is. So it's been a total pleasure to be involved with them.

However the results were were from questions my wife asked before we started, and the faces of the students,  when I explained some of  the problems people with this illness face on a daily basis.

If I remember correctly

How many people have been touched by dementia in their families?

How many had heard of Lewy Body Dementia?

How many knew about Robin Williams and his death?

Many seemed to know about his  Parkinson's, but did not seem to link the Lewy Body Dementia to his death and problems

I do feel that after talking about this,  it later became obvious that many people did not recognise the problems he had struggled with, because some seemed to be shocked at the symptoms which appeared in this illness.

I guess many were shocked to hear about Robins death but never looked at why or how he died.

Some possibly heard of Michael J Fox who has Parkinson's and is still active in the Parkinson's field, and this possibly threw them

But I guess that many people including medical staff, don't look at the cause of a person's death, but we're are all different.
I only picked it up due to my links with Lewy Body Dementia, when Robins wife spoke out about it.

But I am now more hopeful that we can raise the profile of Lewy Body Dementia, and get more people supporting us in the future.

Monday, 23 October 2017

Nursing students







After three one hour talks during the last week to graduate nurses at Northumbria University, I confess that I felt very tired by Friday afternoon

I cannot thank my wife enough for her help and support in the writing of these talks, as well as her help during them when I get stuck.

She also makes sure that I get there, and arrive in the right place at the right time.

But at the same time I feel honoured to have been involved in this project, as it gives me time to explain life with a form of lewy Body Dementia.

Many of these people have never heard of this  type of Dementia before, so it's been interesting all round.

I guess that many had heard of Robin Williams death, but had not put the two together as its a rare form of Dementia.

Many knew about Parkinson's,  but never knew that Lewy Body Dementia was similar

However there is only so much that you can cram into a syllabus these days as time is important


I also had some heart warming emails from students who had experienced dementia in their families, but never really understood what was happening to the person they loved so much.

One or two saying that they wished  they had known more about the illness when they had the chance, but never knew what questions to ask, or how to approach them, let alone how they could help

One or two took the Lewy Body Society Cards away, so that they could learn more about the illness, by going onto the website

Many looked shocked when I spoke about the graphic nightmares, and how to approach the person without being injured

Because like it or not, as my wife said on many occasions, if I lashed out in hospital as I have at home, I could end up being  charged with GBH or worse.

But this all proved that we need to promote Lewy Body Dementia, so that more people  understand what it is etc,

I confess that I knew very little about dementia and nothing at all about Lewy Body Dementia when I was originally diagnosed in Durham, but the consultant did her best to explain it all to us.

I understood that she had herself been trained at Newcastle University under Prof Ian McKeith a lead in this form of Dementia.

Let us hope that more people start to learn more about this illness in the future.



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

Information pack for diagnosis of dementia

The other day I found this old 2006 blog about the information pack we were given, after my diagnosis of Lewy Body Dementia in County Durham...