Medical Bloopers

I read this article when I was at the last Balance clinic in Chester le Streeet General Hospital Durham. It was in a newsletter written by the North Durham Parkinson's Society.

Yes I know that this is a serious topic  but, I keep looking at this and it keeps me laughing,

Sign of the Times

Recently I took the decision to step back, and retire from doing presentations and talks, because of ongoing medical  problems.

This was not taken lightly, because as well as talking about Lewy Body Dementia etc, I got quite a lot out of it, and met many new friends on the way. 

But over the last few months, I knew that things were changing and that included my health, so after  talking to my wife, it was decided that I should retire, and try to take things easy, while I try to get my back, hip and gait sorted out.

The Orthopedic consultant said that I was walking with a very odd gait, and wanted to work out what is causing it, as it could be related to either my brain or spine.

My walking has got a lot worse, and find it difficult to sit properly, or stand upright  for any length of time, so I guess I realised it was time to change things, before I caused an accident

My daughter is a biologist, so she is often involved in any decisions we make like this, because she understands things better than I do.

I am blessed to have such a lovely wife "Janice",  and Daughter "Claire", along with our son "Mark", who helps us out, as and when needed.

I am so very proud of my family and Grandchildren, and would be lost without them all

Mark is also  training to do the Great North Run, and if successful the London Marathon, something I knew nothing about until recently, when I understood a post on face book

I say this because these days, I read something and don't always understand it, or get the true meaning, but that's all down to my brain 

It feels odd that I am struggling to walk far, yet Mark is running in marathons?

However I am very proud to have such a wonderful family, including 5 wonderful Grandchildren, who could ask for more.

During this time I have been honoured to be an Ambassador with the Lewy Body Society, who are doing a wonderful job raising awareness, and the profile of this illness within the UK, while also helping those living with this illness and their carers. 

This is a small charity, which does not have the vast resources available to the larger charities, but I do believe that they do a better job, because they focus only on Lewy Body Dementia, and are backed up by high profile people within the medical profession. 

While I am cutting back, I will still do what I can to promote the Lewy Body Society, because it feels like a big part of my family.

I am not sure whether I will carry on with this blog, because it's taken nearly three weeks to write this blog post.

Over the years this blog has been read by over 267-000 people, something I am very proud of, even though it all started as a complete mistake, but it helped to keep my brain active, so that must prove something 

Ken

  

Meaning of Hope

When I was undergoing my first diagnosis in Oxford, and was still working, I never let my religious beliefs go.

I suppose I was hoping that my religion would keep me going, and would save me from whatever was coming.

At this time most, clergy prayed for those who were sick, or dying, and it was generally accepted, because these people were usually seriously ill, either at home in bed or in hospital. 

However, I remember reading notes in my Office diary the other day, that I was at an Evening Service in Oxford and was staggered to hear the priest praying for me.

My wife said that I looked at her in disbelief, and perhaps shock, wondering why I was being prayed for, when I was in church.

I now understand that it is quite common, to pray for everyone who is ill these days, but I confess this did not help me at the time, and left me feeling very confused 

Originally, I had started going to this evening service because it was very quiet compared to the normal Sunday service, and easier to cope with  

At this stage I had forgotten how to say the Lord’s Prayer, and it took a lot of demanding work to bring it all back.

We eventually moved back to my family home in the North East, and we decided to return to my old church where we had been married and where I had been in the choir for over ten years.  

I then realised that the words I had learnt again, were totally different to those being said at the service.

After going to a second service where they sang the Lord’s Prayer, I decided enough was enough, simply because I don't cope with constant changes.

By this stage, I simply could not read words and sing at the same time. 

I then found that the Church leaders were not interested in people with memory problems, because we were told that if I was not happy I should attend the 8 am service on a Sunday morning. 

While I struggle to cope with my religious beliefs these days, I can understand why people turn to turn back to religion, to keep them going, and I guess to help them understand meaning of life.

I guess it also gives them” Hope", that small word with a big meaning.

Hope can bring meaning into a person's life, and help them to face challenging times without despair.

Hope is future orientated and experiencing, and "Hope", provides the strength to cope with painful and stressful events, such as receiving a diagnosis of Dementia

Hope gives a person the will power to think a cure may come along, or medication may improve or stop their illness in its tracks.

Finding "Hope" is a means of coping with this illness, and what is happening in our lives, and Professionals need to be aware, that even when "Hope" is unrealistic people must find their own meaning to life

Although I am struggling to cope with my faith these days, I still have "Hope"

I know that even though I lose the ability to do some things, I "HOPE" to fight on, enjoying my family for a bit longer, and enjoying the hobbies I can still do without assistance.

I know that I will never be able to enjoy my faith in the same way as I used to do, because of the constant changes to services and prayers these days, but as one clergyman said recently, that’s the way things are moving in the Church of England and there is nothing anyone can do about it.

To me it feels as if the religious leaders in this country have turned their backs on those who are ill and struggling with their faith. 

Many clergy say that it's a waste of time performing services in front of those who have memory problems or dementia, because they simply cannot take an active part. If only they took the time to think carefully.

Many grew up with familiar types of service and forms of prayer, and do not cope with constant changes to services etc.  

So, we must all fund our own way, and Hope we can carry on as best we can.

Raby Castle

Recently my wife Daughter and I went for a walk round Raby Castle in County Durham, a favorite place for may in this area, as its a stunning castle, with vast grounds gardens, Deer Herds and Long Horned Cattle roaming around the meadows.


The castle is set within 200 acres of parkland in the heart of the beautiful Durham Dales

We always pass this castle on our way to our static caravan, and in some ways it always feels like home, because back in the 1960s I was there with the Scouts, and on one occasion we stayed somewhere within the castle during one winter, but to be honest I really don't remember where we were no, as so much time has passed

Raby was built by the mighty Nevills in the 14th century and is one of the finest preserved medieval castles

Since 1626 it been home to the current owner, Lord Barnard. The family are proud of their heritage and are passionate about sharing the families, history and collections with visitors

                                  A bedroom believed to be one used by senior staff such as a Butler

There are two different types of deer within the Park, Red Deer and fallow Deer, both herds include descendants of Deer preserved from Norman times

                                    The main gatehouse as seen from the main gardens

The walled garden, which was probably set up to provide herbs and plants needed for medicines, however it was until the mid 18th century that the formal garden was established by Thomas Wright

Isle of Skye

Early this year we had a wonderful holiday, with a church group, which went up to the Isle of Skye

staying over at the White Heather Hotel in Kyleakin.  The Hotel was owned by a lovely couple, Gillian and Craig. who are very pleasant, and go out of their way to make sure that everyone has a wonderful holiday.

We have been there on a few trips, and I can honestly say that we have enjoyed the tour each time we go, because everyone is so very friendly, even though I no longer attend church these days, but everyone makes me feel part of the group, and try to help me whenever they can   

 Some of the rooms look out over the harbour, and I confess that I am totally struck by Scotland, and this area , on the West Coast

 The harbour with the ruins of Caisteal Maol, Kyleakins own castle, which was built in the 1400s, Not much of it is left these days

                                                            Cawdor Castle and Gardens

                                                          Caisteal Maol

                                                 Local fishing boats

                                               The island has its own Heronary

                                  The Skye Bridge which links the island with the main land

                                                          Eilean Donan Castle

                                                 
                                   Sun set over Skye Bridge taken from Kyleakin harbour

                                           The harbour at Kyleakin during the setting sun

                                                   

Dementia and treating us with dignity and respect

Dementia and treating us with the dignity and respect ,that other people take for granted, and expect it from everyone else

Many people think that because they know or have looked someone with dementia, that they understand everything thing about it and know all about its problems.

But this is far from the truth and there are well over 120 variations of this illness, and in each case, the people with the the illness have different symptoms and struggle in different ways to others.

This causes confusion to many people, but as we now know there is nothing straight forward about this illness.

Treat us with the dignity and respect that you would expect from others

By educating and training people to understand the problems people with dementia struggle with on a daily basis, we will then start to see people with dementia being treated with the care and dignity, that you would want from others.

Please don’t patronize us by asking a question and then trying to answer it. Give us the chance to think of the answer, as in many cases we need time to process the information before giving you the answer.

Look at the person and not the dementia.

Remember that many get flustered because unlike you, they simply cannot come straight out with the answer, and if things go wrong we sometimes come out with the wrong words, and that leads to accusations of aggressive behavior and being rude.

I have heard this on many occasions, which makes me think that the accusers really do not have a clue about the basics of this illness.

Treat the person as you would have done before the dementia, we may have an illness, but in many ways we are the same as you, we are all human.

Try to speak clearly, carefully, slowly, and where possible face to face, so that we stand a chance of understanding what you are trying to say.

Please don’t assume that you know all the answers about dementia and what it is like to live with it, but ask us, the people living with Dementia, and we will tell you what our problems are.

Remember that people with strong accents, asking questions can be difficult to understand when you have this illness. As someone who grew up in the North East I now struggle with the accent these days, so if it is difficult for me, think what it is like for others.

Try to speak in a calm voice and not get agitated otherwise it makes those with the illness react in the same way.

Do not discuss our problems with anyone else while we are there as that is hurtful and disrespectful, we have ears and a tongue, and so we can answer back ourselves.

We all develop routines that help us to get through each day, so please don't stop us doing this.

Problems with word press blog

The other day I was notified the my Word press blog would not be allowed any further access to Facebook.

I can only assume that Facebook has done this in its crackdown on fake news etc.

But I am not going to take this any further, as I simply don't understand what is going on, and to be honest about this sort of thing, if you try to contact people to complain they never take any notice

I found this out years ago when I had a bad day and managed to delete my Blog on Google.

I tried to explain to Google what had happened, and explained my circumstances, about memory and dementia, but they refused to take any notice. They simply asked for a credit card number, even though I did not like them or use them

Luckily for me most of the blog pages had been created and saved on Word, so I could start again


I have had to go back to my google blog, and hope that this does not get blocked

I simply don't understand why Facebook has done this while Twitter has no objections. 

New Help Line for People living with Lewy Body Dementia

Charity partnership on nurse-led helpline for Lewy body dementia

23 July, 2018

By Steve FordEditor

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·         Comment

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Two charities are today launching a new collaboration to provide a helpline for those affected by Lewy body dementia, which will be run by specialist nurses.

The Lewy Body Society and Dementia UK have set up a new partnership to offer expert advice and information through the latter’s existing Admiral Nurse Dementia Helpline.

“It is essential that people living with Lewy body dementia and their carers have access to expert advice and information”

Jacqueline Cannon

The helpline, which is run by Dementia UK for anyone with a question or concern about dementia, is staffed seven days a week by specialist dementia nurses and is free to call.

Lewy body dementia is the second most common form of age-related neurodegenerative dementia. It is thought that around 130,000 people in the UK are living with it.

From today, when anyone affected by Lewy body dementia who calls the Lewy Body Society will be directed to the Admiral Nurse Dementia Helpline for advice and support.

Jacqueline Cannon, chief executive of the Lewy Body Society, said: “It is essential that people living with Lewy body dementia and their carers have access to expert advice and information, to help them understand the disease and how to live with it.

“Rather than duplicating and providing this service ourselves, we are delighted to partner with Dementia UK and signpost people affected by Lewy body dementia to the excellent Admiral Nurse Dementia Helpline,” she said.

She added: “This allows us to focus our efforts on our core objectives of funding research into the diagnosis and treatment of Lewy body dementia, and raising awareness of the disease.”

Paul Edwards, director of clinical services at Dementia UK, said: “This is a valuable partnership in which the Lewy Body Society is able to concentrate its efforts on research into this particular type of dementia, while Dementia UK’s Admiral Nurses can provide the compassionate and knowledgeable support and advice that families affected by dementia need.”

·         The Admiral Nurse Dementia Helpline is available on 0800 888 6678 and is open Monday to Friday 9am-9pm and weekends 9am-5pm.