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

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 

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.

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.