The Unknown

 

We all go through life worrying about what may be happening or what may happen in the future, and that is normal, but those who are ill struggle with fears of a different nature and that is the fear of the unknown in our futures.

Many struggle with family relationships, or the dread of future examinations, or perhaps hospital appointments, they are all natural and yet all totally different, as they are approached in different ways.

As someone with an illness which the doctors assume is dementia related or to give it its full term Lewy Body Dementia, I find thinking about the future fills me with total dread and fear. In my case it’s the thought that I may loose control over my dignity. I also dread the fact that I may well forget my family members.

Since I was diagnosed at an early stage, it gave me time to sort myself out, so that there is not too much left for my wife and family to do when things go pear shaped.

It also gave me time to look back at what I had achieved, and sort out any lose ends, which there always is when we think about it, but I am starting to be more positive as life moves on.

Although life goes on as normal many days,  there are some days when we just can not settle or indeed say we are happy about doing normal things, this is because the short term memory causes all sorts of problems.

I am not as active as I used to be, and don’t do as many public talks, but instead I am enjoying taking things easy and enjoying my life and family while it’s still possible. I don’t write as many articles for my blog anymore these days, but that is because I struggle to find something to write about and put it into words. Sometimes writing an article can take a couple of days, where it only took an hour or so when I started.

I now put articles from the press on the blog, as they are very interesting and I hope that they will inspire others around the world to follow suit and set up more projects for those who have this illness. I think this also helps these groups with publicity in other parts of the world.

The blog also keeps me occupied, as there is now a constant stream of e-mails from people around the world who find the articles interesting. Until three weeks ago I did not know these existed, as they were all going into a spam file which is not always visible, and when you have this illness you don’t always see the obvious.

So it’s all getting very interesting doing this blog, rather than trailing around the country talking, every day of the week. I still do talks, but these days I am more selective, about who much I do and when, and this allows me to pace myself so I don’t get too tired.

I am more at peace than I ever was and more relaxed these days, and for some reason I am not frightened of dying, but I suppose that is because I will have no control over that when it happens. It was something that used to fill me with fear, but not anymore.

 

missing messages

I would just like to say a big thank you for all your messages sent recently and apologise as most of them had disappeared into a spam box which is only visible on certain pages of the blog.

I only found this section yesterday and was shocked to see so much in it.

As there were over 45 messages there is no way I can answer everyone so please bear with me.

I have been struggling with my Lewy Body Dementia anyway, and then when this Meniere's type illness started it through my completely, however I am feeling much better today and looking forward to a few days holiday next week in Inverness.


I will try to answer some comments all being well, when I come back again

Many thanks

Ken

Dementia and Art

Claire’s putting people in the picture on dementia
8:47am Friday 15th March 2013 in News




AN art project aimed at bringing greater understanding of dementia has been launched at the Royal Bolton Hospital.

Award-winning artist Claire Tindale spent two days a week for three months at the hospital, funded by the Arts Council, to create a series of thought-provoking photographs.
She talked to staff, patients and relatives on three complex care wards to help understand the journey patients with dementia often make from home to residential care.

Her work, which is displayed on the hospital’s first floor corridor between C and B Block, has now been unveiled.




The photographs show tiny models including a medical records trolley, a commode and a walking frame, which are each cradled in a pair of hands.

Three of the models are on show across the wards involved in the project.

Ms Tindale said: "The images are symbolic of the vulnerability of people with dementia and the responsibility of those people who care for them.
"The idea came to me from my discussions with staff, patients and families at the hospital and I’d like to thank them all for their interest and support." Her previous work on dementia includes images of doll’s house furniture showing an empty lounge in a home for older people, a design of forget-me-not wallpaper with gaps in the pattern, and her award-winning photograph album "Memory Loss" with captions but no photographs.




Bolton NHS Foundation Trust says it is committed to understanding and caring for people with dementia and supporting their families.

The unveiling comes just days after an event involving more than 150 health professionals to mark the start of making Bolton a dementia-friendly town.

In Bolton, 1,601 people have been diagnosed with dementia while an estimated 3,026 dementia sufferers have not been diagnosed.

Pat Graham, the Trust’s lead on dementia, said: "It is important we are all attuned to the needs of people with dementia and their families.

"Claire’s work on the wards preparing for the final artworks was enlightening in itself in her discussions about dementia with patients, families and staff."

Blog interest

When I do these blogs I often wonder if the people reading them have dementia or if its people like researchers or carers who are looking.
Its truly amazing how many people in vastly different countries read this, and I often think it would be nice to hear from those reading it to see why they are here and whether they find it interesting and helpful.                                                                                                                                                                                 If anyone has anything they would like to contribute to this blog they are more than welcome and it would be good to hear what happens in many other countries, or in deed mention any problems which other people with dementia have.                                                                                                         Please feel free to contact me.

Changes in health

I found out on Monday that it is quite possible that I have Meniere's Disease, as well as Lewy Body Dementia after a battery of tests at our Doctors Surgery by an ENT Specialist and his team.

This was quite a shock, but it explains some of the problems that we had put down to the Lewy Body dementia.

I had been seen by three different doctors who all had different ideas as to the cause of my problems and then eventually another doctor who was on duty, said that I needed to see the specialist as there was something wrong.

My wife had asked him if the problems were linked to the Dementia and he said definitely not.

I had been struggling with falls, and the feeling of walking on an enormous mattress, when I was walking down the street, along with hearing difficulties and tinnitus, and everything was starting to get me down as I could not sleep properly due to the noise in my ears.

After spending last week end in bed so that I did not fall over, I was a little unsure as to what the specialist would say, but after tests with three different people including another hearing test, it was amazing just how delicately it was done with care and respect.

After this I now have to slow down a little and take things easy, until the medication starts to work properly. 

Ripon dementia charity celebrates first year in style

Well done to this group as they are showing us what is important in the dementia field, and proving that there is more to this illness than being an information outlet like many front line charities in Dementia

Ripon dementia charity celebrates first year in style

Jacqui Springay, Richard Clarke, Jill Clarke and Barry Springay. (1303012AM7)

Published on Sunday 10 March 2013 08:46

Ripon-based charity Dementia Forward has celebrated its first anniversary in style with a black-tie ball at Rudding Park Hotel in Harrogate.

Sir Graham Hall was among 140 guests at the event, held to celebrate the charity’s first year of supporting people living with dementia in Ripon and Harrogate. Dementia Forward’s chief executive Jill Quinn said: “The ball was a great success and I’d like to thank everyone who attended the event and donated so generously.”
Guests at the anniversary ball were treated to a night of food and entertainment, with live music and a four-course dinner.
Local young entertainers who performed at the event included musician Scott Quinn, magician James Orr, pianist Amy Dodds, soprano Esme Varley, baritone Ben Lindley and four students from St John Fisher Catholic High School in Harrogate, the jazz quartet Cosmic Rays. Live music for the later stages of the event was provided by local band, The Nightjars.
And a James Bond-themed raffle draw created some sparkle to the evening, with one winner taking home a pair of diamond earrings worth £1,550 – donated jointly by Harrogate jewellers Ogden and an anonymous benefactor.
“In particular, I’d like to thank those who donated raffles prizes, performed on the night, or helped with the event organisation,” said Ms Quinn.
“Events like this help us to raise funds to continue supporting people with dementia and their families. But holding events also helps us to raise awareness of the ever-growing need for support, with more 3,000 people having been diagnosed with dementia in Ripon and Harrogate. This has been an incredibly successful first year for us, but there’s a lot of work still to be done.”
lFor more information, telephone 01765 601224 or email information@dementiaforward.org.uk

3p pill cuts dementia risk by half

What wonderful news, when you read things like this. It gives hope to many in year to come

A BLOOD pressure pill which is taken by tens of thousands of patients could be the key to beating Alzheimer’s disease.

By: Jo Willey

Published: Wed, March 6, 2013

3Comments

Progression of dementia can be slowed if drugs are taken immediately

British scientists believe the 3p a day tablet could slow progression of the disease and even combat devastating memory loss.

Experts at the University of Bristol hope the drug losartan will be so effective that high blood pressure patients could routinely be given it to protect long-term against Alzheimer’s.

The university’s Dr Pat Kehoe is launching a ground-breaking four-year £2million UK trial.

He said: “Without wishing to get ahead of ourselves, the beauty of this drug, if it is found to work as we expect, is that it is already available and is cheap.”

Previous research has found that people on losartan for high blood pressure also appeared to be significantly protected against dementia – in fact, it is thought to slash the risk by as much as 50 per cent.

Now the scientists hope to test the drug on dementia sufferers. They believe losartan could slow down Alzheimer’s by improving blood flow in the brain and altering chemical pathways that cause brain cell damage, brain shrinkage and memory problems.

The losartan clinical trial will be hosted by North Bristol NHS Trust and led by academics from Bristol, Cambridge and Queen’s Belfast univer­sities.

Dr Kehoe, joint group head of the Dementia Research Group at Bristol, said: “Existing Alzheimer’s treatments only temporarily treat specific imbalances in the brain but there is no cure.

“The trial, which involves dementia research centres in at least 10 cities in the UK, should provide the first real evidence of losartan’s potential benefit.”

Dr Pat Kehoe, launching the trial

The ultimate test of any potential new treatment strategy is success in clinical trials, so it is encouraging to see this trial getting underway.

Dr Simon Ridley

Speaking about losartan he said: “People who have high blood pressure could be prescribed this much earlier in life when we know some of the early changes of Alzheimer’s can occur but cannot easily detect because the memory problems haven’t manifested.”

Earlier studies have shown that reduced brain blood flow is a common and early feature in Alzheimer’s and contributes to memory failure.

Losartan, and related drugs working in a similar way, have been found to block a naturally occurring chemical called angiotensin II which prevents the release of vital memory chemicals in the brain.

The new trial will use brain imaging on an estimated 230 patients to measure if losartan helps to reduce brain shrinkage that is strongly linked with reduced memory function and discover if the drug improves memory and quality of life.

With one in three Britons over 65 known to be likely to develop the degenerative brain disorder, the fight to find an effective treatment is becoming ever more urgent.

Dr Simon Ridley, head of research at Alzheimer’s Research UK, said: “The ultimate test of any potential new treatment strategy is success in clinical trials, so it is encouraging to see this trial getting underway.

“Alzheimer’s Research UK funded some early research into this area and we are very interested to see whether the findings from these studies will translate into patient benefits.”

Alzheimer’s is the cause of more than half of the cases of dementia that affects approximately 800,000 people in the UK.

Progression of the disease can be slowed if drugs are taken immediately there are signs of mental impairment.

Early drug treatment can delay the onset of the more severe symptoms, such as communication problems, loss of memory and mood swings.

The same risk factors for heart disease in middle age – such as smoking and high blood pressure – also accelerate the decline of brain function.

Around 60,000 people take losartan in the UK each year to lower high blood pressure.

Healthcare Innovation Expo

Department of Health to build ‘Dementia Village’ at Healthcare Innovation Expo

4 March, 2013

The Department of Health (DH) is hosting a major dementia event at the Healthcare Innovation Expo at ExCeL London on 13 and 14 of March 2013. A dedicated area of the exhibition hall will be devoted to a ‘Dementia Village’ to showcase good practice and innovation in dementia care, dementia friendly communities and research.
The village will contain a main stage for speakers, a village green and bandstand with leisure and entertainment activities to get involved in, and a house demonstrating ways that we can support people with dementia and their carers to live well.
There will be a school hosting workshops and sessions enabling people to become Dementia Friends. A high street will house a number of organisations taking innovative approaches to helping people living with dementia, and a cinema will show dementia-related films. Trevor’s Garden will provide a quiet space for delegates and information on the potential benefits of dementia friendly gardens. This is an artist’s impression of what the village will look like:
Healthcare Innovation Expo is the largest healthcare innovation event in Europe. The main objective of the expo is to encourage the spread of innovations that have a significant impact on improving the quality of patient care and productivity in the UK. There will be a wide range of exhibitors, including DH and many of the new NHS organisations such as the NHS Commissioning Board. There will be a comprehensive seminar programme with more than 100 seminars to choose from. Up to 10,000 delegates are expected to attend over 2 days.

Good nights sleep

I had a good nights sleep last night after a brute of a night the night before when I had three bad nightmares one after the other, and felt totally drained all day.

I have not had a night like this for some time, although I have had the occasional bad night, but nothing compared to Friday night when I just wanted it all to end once and for all.

It is hard to explain these nights and I often wonder how Trainee Nurses are able to take on board what its like to live like this let alone qualified staff.

Sadly on Friday my wife was sleeping like a log and did not hear me when I needed help as she was so tired, but she was desperately sorry the next morning, when I told her all about it.

I try to get away from bed when I wake up from these as, I don't want it to start all over again as it does some times, and I don't want to upset me wife as she finds it very hard to understand whet is going on, especially when they get violent.

There must be some reason for these things to happen, but when they have no bearing on life or at least real life, I just can not take it on board.

I finally went to sleep around 5am and was up at about 7-15 am, but I suppose I was pleased to be up and away from bed by then.

Last night I did not really want to go to bed let alone sleep, but I did and it was fine.
How I never end up with something like a heart attach during these I will never understand.