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.

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.

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.

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.

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

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

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.