End of the blog

After giving it a lot of thought over the last few months, I have decided to finally stop writing this blog now

This is for a few reasons, but first and foremost I am struggling to put my thoughts into writing,  without saying the wrong thing and sounding rude or aggressive.

I know I am getting very tired these days, and struggling to think clearly, but I guess this is a build up of medical problems  which are starting to make life very difficult. 

However I was starting to  think of closing the blog down in January and then in June,  because of my problems of putting my thoughts into words. 

I have re-used a few old blogs over the last  few months, in the hope of getting myself motivated, but realised that it's not going to work 

I have enjoyed doing this over the years, but I have lost total  interest,  but will let the blog run as it may help others.

I vaguely remember the fact this blog was  started by mistake, but it's been a journey, which I never expected, and lead to many new friends over the last few years.

My wife and I looked at the blog the other month,  and realised that it's been read by nearly 360-000 people in 120 countries,  which was quite an achievement, and one I am pleased with.

It's hard to accept that this post took nearly 6 months to write properly and get ready to send off, but that's life 

Shortly I will also be stopping using Twitter, for the same reasons. 

But life goes on. Thank you for all of your kind comments over the years.

Best wishes

Ken

How things change in life

Over the years technology has changed how we live, and as someone who was late in joining this type of thing,  I struggle to cope in ways I would never have considered.

Being an engineer I got my first mobile phone and computer in the 1990s, and was forced into a life that, I found very hard to do without formal without training or support in computers.

The mobile was used as I was on call as an engineer 24 hours a day, and the MS-DOS computer 

was to help me do my reports and estimating, etc through the working day. 

This was a far cry from today’s computers, and a lot slower. 

However today we have moved on to things like online meetings, like zoom, something I now struggle 

to cope with it.

Seeing different faces in front of me these days fills me with terror, even though my wife says I used to speak to big audience in conferences etc. This is why I struggle to cope with things like zoom, as I see so many faces and cannot remember who is who, or who is talking. 

Coupled with hearing problems, I struggle to cope with different toned voices 

Quiet Life

We have had a static caravan for a few years in Barnard Castle, and to me, it’s my own little bit of peace and quiet, somewhere, where I can relax away from home, away from the stress.

This is a place where I want to stay, and not go home, I guess because I feel safe and free to enjoy myself.

Even if I stay overnight on my own, I feel quite safe,  because I hear tawny, and barn owls during the night if I wake up, so I don’t feel lonely, however, we have found that I sleep better here than I do at home, which must prove something.

There is a small industrial unit nearby where they restore old vintage cars, so I find this very interesting to see, as I always loved working on cars in the days when it was possible to take an engine apart and rebuild it. Watching these people restore a vintage vehicle is amazing and something I never expected to see in my life 

I have also started to do wildlife photography again while I am here, but with this illness, it’s difficult at times to work out what is real and what is not actually there. There are times I could swear that I had seen something, but know it was not there, because the brain is playing horrible tricks on me. 

This in turn causes problems in judging distances etc and judging things like door frames, but I have found life so much easier at this caravan because of the stand-out colours, which is brilliant during the day but does not work at night when it’s dark.

My only concern these days is remembering to slow down, otherwise, I get dizzy when I stand up, and as I keep bumping into things its not too good.

But I am starting to feel as if I have found my ideal place in life, and that helps me feel so comfortable and relaxed, rather than being on edge at home 

We have no internet there so we rely on our mobile phones for contact with our family and friends etc, but this suits me fine as I can use the internet through my phone as and when needed. My medical appointments etc are made via the mobile phone, and our doctors contact me on the mobile, so it provides a little bit of freedom away from everyday life at home

I confess that this suits me fine because I can do odd DIY jobs when I feel up to it.

Although this is on the outskirts of a market town, I always feel as if we are out in the country and that’s something I enjoy about this. 

 

However, it will soon be time to close up the caravan for the winter months and I am not looking forward to that, but I guess all good things must come to an end, even though I sleep better out here than I do at home.

courtesy of speech notes which helps me to speak and write things down 

Research into Lewy Body

 Research summary report: 

Multimodal Imaging in Lewy Body Disorders

July 19, 2021

We have received the following report from the University of Cambridge, which summarises the progress made following the award of a Lewy Body Society grant in 2015.

There are some very positive outcomes, such as an improved understanding of imaging biomarkers in people living with Lewy body dementia, the recruitment of people living with LBD to take part in other studies, and supporting the career development of researchers who are focused on LBD research.  This will hopefully support further research and findings in future, which will improve the lives of people living with LBD and their carers.

We are very grateful to the team at the University of Cambridge for providing this update, and look forward to hearing further updates as the study progresses. We must also say thank you to all the supporters and fundraisers who help to fund our research programme.  Although the studies can often take a number of years to produce results, this work shows that your donations are making a real difference.

Progress report – MEG Dementia with Lewy Bodies, University of Cambridge

Overall progress towards the goal of the award and key achievements

The first goal of this study (known as Multimodal Imaging in Lewy Body Disorders or MILOS study) was to discover novel imaging biomarkers for Dementia with Lewy bodies (DLB) using multimodal imaging (MEG and MRI). The second goal was to correlate clinical symptoms such as cognitive fluctuations with different imaging measures. The originally planned sample size was 48, in which 24 subjects with clinically diagnosed probable DLB and 24 similarly aged healthy controls as a comparator group, who will undergo full clinical, neuropsychiatric and cognitive assessment, MRI, and MEG scans. To date, we have recruited 47 participants, in which 30 have completed baseline tests including brain scans and blood sampling, 25 completed one-year follow-up and 7 completed 2-year follow-up.

IWe have done a preliminary analysis of the imaging data and found promising results. For example, there are notable decreases in the ‘stability’ of the brain waves and processing speed (reaction time) during simple object recognition tasks in patients with DLB compared with healthy controls. This seems to be consistent with their clinical phenotypes such as cognitive fluctuations.

Between 2015 and 2017, we have received three substantial competitive funding awards for related research with a total value of nearly £476,000. At the same time novel imaging methods have emerged, so we have decided to expand the study with additional PET brain scans. With PET, we have investigated changes in amyloid load (a key pathology associated with Alzheimer’s disease). We found a trend towards increased amyloid load in subcortical and brain stem areas in DLB.

Finally, the additional funding has supported two post-doctoral researchers who have assisted patient recruitment, testing and data analysis. During the period of this study, three PhD students joined the team supported by external studentships. It is also notable that the awardee of this grant has been offered a full professorship from University of Sheffield in 2020. This grant was the first major award the awardee has received thus played a vital role in this achievement.

Issues that have limited the progress

The first issue that has limited the progress was the speed at which we can recruit suitable patients with DLB. This is because DLB is a much rarer disease compared with AD and it progresses faster too. Our research project requires the participants to perform several simple but nonetheless active tasks on computer. So, there is only a narrow window of time for the patients to participate when their cognitive impairment is still relatively mild.

We have improved the recruitment of these milder DLB patients by better engaging with the public via newsletters, public event and social media. We have also increased the number of patient recruiters including additional post docs and PhD students, and an ARUK funded DLB coordinator in Cambridge. We have also linked up with other researchers in Cambridge working on DLB related projects in order to share sources of patients.

Finally, the study was paused during the Covid pandemic. Both patient recruitment and testing had to be suspended for approximately 12 months. However, we used the time to concentrate on data analysis and writing up reports. As soon as face to face research could restart, we have continued the recruitment. As mentioned previously, to date, we have recruited a total of 47 participants out of the target of 48. With the additional funding from the other sources, we will complete the final part of the recruitment shortly.

In the coming years, we will actively work on the data collected from this study for publications and disseminate the results in conferences and via other channels while completing all the patient follow-up.

(Date 27 May 2021)

Li Su, PhD

Professor of Neuroimaging, University of Sheffield
ARUK Senior Research Fellow, University of Cambridge

 

Lord help me with this illness

 Lord help me with this illness

I want to be as I was, but cannot turn the clock back

To understand what is happening to me,

To a time when I was in control over what I did and said

I know I have dementia and my life has changed

I feel that I am not in control of my life anymore

Nor am I am the same person, that I was before

I cannot do the things that I did before, or they are more difficult to do,

I do not sleep as I did before and feel refreshed

My dreams are not happy but things of terror from which there is no escape

I am not the same father or husband and that is sad

I may have done and said things which are hurtful

I know that many of the bad things I do are a mistake

But it does not help when it happens

Give me the courage to fight this and not to give in

As that would be too easy, and there is too much I wish to do

Some days can be awful, and some as normal as possible

Some, times I just want to sleep, and that would be too easy

But I know that I would not sleep at night

Trying to pray is becoming harder, as I can never find the right words

Or I cannot remember the words to the Lords Prayer

Lewy Body dementia and seeing things

 As a person with a form of Lewy Body Dementia, I often see things which may or may not be there, and this can be very hard to understand let alone explain.

Sometimes when I am at home I see huge spiders, running across the floor, at first this was upsetting, and I would lash out with a shoe or slipper, but my coordination is not that brilliant, so I had to stop before I did some damage to the television or something else.

When this started we had a dog which used to lie near my feet, so I learnt to tell if they were real or not, because if he saw a spider he would chase it, But my wife told me that if he did not move, then they were not real.

That was fine until he passed away then it was left to me to decide. These days my wife tells me if there is something there or not, because she watches me looking at something and asks what is wrong.

However life can be difficult at times trying to work out whether something is real, or if my brain is playing tricks with me.

Even outside I have to look more than once to see if something is real, and this can be hard when people are watching me to see what is going on.

The brain is a very complicated thing, when I hear about it, because I never realised that it controls what we see, hear, and smell etc, and this causes problems when I get my eyesight tested.

This is because my eyesight seems to change so much, and where I thought it was just my eyes playing up, I now understand it’s the brain getting the wrong signals, if I got this right.

This also causes other problems these days, because if I an at home and see a bird flying past our windows I tend to duck. These are mainly reflections in the glazed doors inside the house, which make me feel as if the bird is actually inside the house and flying towards me.

Recently this has got worse outside if a bird flys over my head, I still duck because it feels closer than it is in real life.

Dentists and Dementia

Dental treatment in dementia

Recently I got involved in research into what dental treatment people  want after a diagnosis of dementia, something I confess I had never considered 

Over the years I have had some terrible treatment from dentists, and ended up having teeth removed rather than having fillings, after which I completely lost faith in all dentists, as did my daughter who had the same problems.

However over the last few years I have had a couple of very good dentists, one of whom moved away, then our dentists practice closed down after the owner had a serious accident and broke his neck

It seems that a lot of dentists, seem to think that we are not worth bothering with, and that is very sad, because we should be able to choose what treatment we want or need, rather than some other person telling us what would be best for us

Before the lock down I was lucky to find a new brilliant dentist who really seems to care, and explains his  treatment at every step, something I have never had before.

My medical history and medications are all listed in his computer screen, which he always checks before the treatment starts.

This dentist looks at any possible problems, and then discusses possible solutions and costs face to face, while saying what he feels may be the best treatment because of my medical history which is logged down.

So just how do we decide what is best for us if we have a form of dementia. It’s my own personal view that we need to just get things done to make us comfortable.

Some people are needle phobic, and some like me struggle when people get close up, in front of my face.

I confess that I don’t want expensive treatment, and never have done, and this is always taken on board.

Recently I had to have a tooth removed as the fillings kept coming out, even though different types of fillings were tried.

As there was little left of the tooth due to bad treatment in the past it was decided to remove the tooth before it was too late.

During this process the dentist kept stopping to see if I needed a break and to see if I was alright, something I had never come across ever before. 

This is what I call real dental treatment to suit the person living with this illness, not a dentist who is out to get as much money out of us as possible 

Some have even tried to get me to have expensive crowns, when I simply don’t want them 

I believe that dentists should ask a patient for their thoughts before going ahead with expensive treatment.

 Ask rather than assume you know best 

Do researchers understand Lewy Body Nightmares

 I got involved with research into sleep problems in dementia recently,  thinking that it may involve Lewy body dementia too.

However it soon became clear that those asking the questions had no idea about what they were dealing with, and it seemed as if the whole process was set up for those in the later stages of Dementia.

Yet in Lewy body Dementia you are dealing with a different life style as far as sleep patterns go, and a lot of people simply don’t understand this. A few years ago Peter Ashley an old friend and myself, who at the time were both Ambassadors with the Alzheimer’s Society helped to write a booklet about Lewy Body Dementia, and this included the graphic nightmares etc. This was before the Lewy Body Society had got off the ground, or at least I had not heard about it, and it was only later on that Peter told me about it. 

After the first publication was released, it was then scrapped by a new editor, who thought it was too graphic and would frighten people, needless to say both Peter and I lost interest, because it was obvious that this person knew nothing about the horrors of this illness. So in future editions the nightmares were removed from the booklet, yet this left many wondering why.

Yet as many people have said, these graphic nightmares are all part of the nightly horrors many people living with this illness have to put up with. 

These can be horrific when they start, and sometimes very hard to break free from. While these are going on it’s possible that the person going through the horror can lash out and cause a lot of damage, as I found to my horror over time. I demolished two bedside lamps along with other things.

It’s worth pointing out that our loved ones can be hurt if they get too close when trying to walk us up, as my wife found out one night, and she ended up with a black eye, something which I found very distressing the next morning.  

While doing this research it was obvious that they wanted me to change my sleep patterns, which included going to bed earlier, but as I always wake up at 6-30: each morning I did not see the sense, and another idea was to go to bed much later, but as my wife pointed out I still get up at the same time, so that means less sleep.

It was pointed out that some days I drop off to sleep straight after lunch for an hour or so, and nothing wakes me up, not even a telephone ringing next to me chair. I have no control over this yet they said it was bad to sleep during the day. But I have no control over this it just happens and can be embarrassing if we have visitors in the house. 

Technology” where will it end”

 I hear that supermarkets are thinking of doing away with staffed checkouts, and replacing them with automatic checkouts where a machine checks everything for you.

What happened to the good old days when you could ask a member of staff about the products, or just have a general chat. I think this is going to hit the elderly, the less abled or people with mental health issues, who possibly need someone to talk to when they get stuck and need support, either in finding or paying for something.

I find that this is yet another obstacle in the way of these people, as we already have a push to have contactless payments everywhere, yet many elderly and people with disabilities may not carry or want to carry credit cards, either because of the problems remembering key codes, or they simply feel unable to use them.

We also have doctors stopping people from seeing them, because they want everything to be done online or on web-chats, like zoom etc, yet here again a lot of people struggle to use computer technology, and how do you explain personal problems over a computer.

 I had an experience of this recently, when my wife was worried about a lump which started to grow on my back during the first lockdown. When she rang the doctors surgery, they sent a link and my wife to photograph the lump and send it back to the doctors via this link. Needless to say it did not work, and after trying a few times, we just gave up and my wife rang up to explain that she is not into technology and could not get it to work.

After this we were given an appoint to to see a nurse practitioner who started the process going. I confess that some of these nurse practitioners are better than some of today’s doctors, but that’s life.

On top of this we are no longer allowed to ask for repeat prescriptions, you are supposed to do this in line yet again, although you can go to your doctors and put the repeat into a letter box to get processed.

I find all of this technology is going over the top, as it’s going too fast, and many of us cannot cope. 

It feels as if we are having everything done by robots these days and it’s becoming frightening for me, but there  are others who may find this too much.

 Is this another form of discrimination, I do wonder, because it’s causing more and more confusion to those of us with memory issues 

Dealing with added bowel problems

 Over the last year or so, I have had major bowel problems which can lead to me rushing to the toilet at anytime day or night, and sometimes I was too close for comfort.

I have had Irritable bowel syndrome and diverticulitis for years now, but this was an added unwanted problem, which meant I was going to the toilet 5 times a day at least, and losing weight.

 I guess I was classed as over weight anyway, so I needed to lose some according to the Body mass indicator and one of my doctors, who did not recognise the fact that a bloated stomach did  not necessarily mean I was over weight, it’s just something that happens when I eat something that disagrees with me. 

He joked that I looked pregnant and refused to accept that I was in pain. The problem was that I have memory problems and find it hard to explain things at times, so I took this as an insult, especially as I had gone in with a suspected chest infection, which he said was nothing more than a cold. 

Strangely after doing a sputum test that afternoon, I left feeling very upset, only to get a phone call a few days later telling me that I needed a course of strong antibiotics for a chest infection. 

However this bowel problem caused me to lose quite a lot of weight, but I could not war a belt to keep my trousers up so I had to resort to wearing bracers, something I never liked. 

After scans X-rays and other tests over Christmas, I eventually got a phone call from the consultant telling me it was not cancer, something I had never even considered, but the rest of the symptoms were ignored until last month when I got another phone call telling me that I had something called microscopic colitis, similar to crohns disease, but this was not explained. 

I was told to go on a large dose of steroids for 8 weeks, then I would be contacted again. He told me to take them all in one dose 9 mg a day, but I was in agony and did not want to eat. 

My wife rang our doctors and they said I had to split the dose to 3 timesaver day, until the consultant came back to them. 

This has been a big help and although my diet has totally changed to dairy free, to cut down the cramps and bloating. 

Dementia and hobby's

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

 

 But others keep going with 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 hobbies have been given up, either because I forgot how to do them, or they became too dangerous to do anymore.

 

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 a 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 be 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, but also have Osteoarthritis, Bronchiectasis and Microscopic Colitis which is causing utter havoc, because of the constant running to the toilet day and night.

 

 

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.

 

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

 But others keep going with 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.

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 a 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. 

 

We have a staic caravan which we use to get away from home for holidays etc, but this year I have loved being there rather than being at home, because i find it more relaxing, just sitting watching the wild birds etc, some of which are very friendly, i guess because its quiet most of the time.

 

The only downturn is the fact that I am getting more agitated these days, but thats life and i guess I am lucky to have got this far.

 

Life moves on 

Calming music

My tastes in music have changed slightly these days, but while I still like classic music, I now find, that I also like things like Freddie Mercury and Queen,, along with Rick Wakeman, and many others that would have been classed as rock or heavy metal.

Although these have been around a long time, it was not my sort of taste, which seems very strange

However, I have noticed that although I loved to listen to classical music during the night if I wake from a graphic nightmare,  I have had to remove some music for my I pod player,  because it was causing more problems when I was asleep.

My wife thought it could have been changed in the style or speed of the music, but sometimes it sent me into another nightmare.

My tastes in food has changed quite a lot, something that I grind very odd

Before and after we were married,  I always liked British food and never touched anything like a curry, whether Chinese,  Indian or anything else.

However these days, I love all types of curry, and what is more, the hotter they are, and the spicier, they are the better. I could eat them all day.

The last time we flew to Turkey we were given lunch going out, and breakfast coming back,  but somehow these got mixed up, and I ended up with a Thia curry for Breakfast? 

I confess that this was novel but really enjoyed it. It was not a normal breakfast but it was very nice.

But I simply don't understand how tastes change like this, as it simply does not make any sense at all.

I now understand how carers get upset, when the person that they are caring for, refuses to eat the same foodstuffs,  that they have eaten for many years. 

Obviously, something has changed dramatically inside the brain to cause this, but I dont know what.

My coordination has changed quite a lot too, and this causes many problems, so much so that many hobbies have been stopped.
Life can be stressful so it’s important to find ways of keeping calm and relaxed, classical music is one way but be careful to listen to the right music and stay clam during the day and night when you are struggling to sleep properly 

Interesting post about music and dementia

 

Classical music can help slow down the onset of dementia say researchers after discovering Mozart excerpts enhanced gene activity in patients

• Research saw patients listen to Mozart's violin concert No 3 for 20 minutes
• The 'musically-experienced' people had enhanced gene activity, it found 
• Music also affected risk gene synuclein-alpha, connected to Parkinson's

Classical music can help slow down the onset of dementia, new research has found.

Scientists discovered that patients who listened to experts of Mozart had enhanced gene activity in the 

brain in areas including memory and learning.

Meanwhile, the music also affected the activity of a risk gene connected to Parkinson's disease.

The Finnish researchers found the changed activity was only present in 'musically-experienced' patients, who listened to music regularly, suggesting the importance of familiarity with music.

For the study, participants were asked to listen to Mozart's violin concert No 3, G-major, K.216, a piece that lasts 20 minutes. The experiment was carried out on both musically experienced and inexperienced participants.

...

+2

The research involved participants listening to Mozart (pictured) for 20 minutes

The study showed that genes were enhanced in those deemed 'musically experienced' in areas such as dopamine secretion, which is when a neurohormone is released in the brain, synaptic neurotransmission, which is how neurons receive information, and learning and memory.

Meanwhile, the music appeared to down-regulate genes associated with neuro-degeneration, which is the progressive loss of the structure or function of neurons.

The researchers said several of the up-regulated genes were ones which are responsible for song learning and singing in songbirds.

This suggests a common evolutionary background of sound perception across different species, they said.

One of the most affected genes in this area was synuclein-alpha (SNCA), which is also a known risk gene for Parkinson's disease. 

Study leader Doctor Irma Jarvela, of Helsinki University, said: 'The up-regulation of several genes that are known to be responsible for song learning and singing in songbirds suggest a shared evolutionary background of sound perception between vocalizing birds and humans.'

He added: 'The effect was only detectable in musically experienced participants, suggesting the importance of familiarity and experience in mediating music-induced effects.'

Dr Jarvela added that the findingscould give give further insight into the molecular mechanisms underlying music therapy.

The effects of this are still largely unknown.

Violent nightmares

 Since before just before I was formally diagnosed as having Early-onset Lewy Body Dementia, I have struggled with very bad dreams and in some cases nightmares.

These things have little or no direct link to normal life that I know of, and they are very frightening, and sometimes difficult to break free from.

I remember the first one I had which I told my consultant about when I saw her at the clinic.
It was at this point that I learned that these were all caused by my illness and not medication of any kind.

 On some occasions, I have got out of bed and gone to a different room simply to break the cycle or at least try to.

I say that because when we wake up from these horrors as I call them, its difficult to decide the difference between the nightmare and reality. I have at times resorted to doing things like hitting the wall so that I know I am awake, but then that leads to sore hands the next morning.

Sometimes after doing something like watching television for half an hour, I have returned to bed only to find the whole process start again from the point it stopped. That is also very sad as I get out of bed feeling very tired and stressed.

When I have these really bad horrors during the night, I can usually remember the whole thing in great detail for at least two days afterward, and I have written about these before, as a way of trying to find out what is causing it all to happen.

I often wonder why it is people having these don't end up having a heart attack as they are so bad, perhaps they do and it's not looked into as to why it happened.

I was once given medication, which was supposed to control it all, but found it got so bad that this had to be stopped altogether, because I simply could not wake up, and in the end tried to climb out of a bedroom window to get away from this bad horror. Luckily for me, the windows were locked, because I was in a hotel and our room was on the third floor.

However, I understand that people who have this form of dementia struggle with some medications, so they are only used as short trials.

I recently had a very bad night which shook me rigid afterward when I looked back at it.

It had been a very bad night and I can remember getting out of bed on two or three occasions, and sat in the room next door until I felt safe to return to bed. However each time I returned to bed the same horror started all over again.

Eventually, I did wake up and went to have a cup of tea, at which point it dawned on me, that I had never actually left the bed during the night, I had only dreamt I had, which accounted for the nightmares going on so long.

I was then so shocked about this that the next night, I did not want to go to bed, because I kept thinking, what if I thought I had woken up and had gone to the toilet?  The embarrassment would have been too much for me.  So these days I live in fear of these nights, and what may or may not happen.

On some occasions I do get up and go downstairs to write things for my blog, just to try to concentrate on something for a while, but I am nervous about waking someone else up, so I don't do it every night.

 Like many people who are living with Parkinson's/ Lewy Body dementia problems, I suffer from nightly horrors and very graphic nightmares which can be very stressful

Last year my consultant put me on a new drug, which it was hoped would help cut down these horrors, and for a while, it worked, but over the last few weeks, it has started all over again.

 These started a few years ago when I was diagnosed as having a form of Lewy Body Dementia / Parkinsonism.  

The problem is that you act these graphic nightmares out, and can remember them in great detail during the next day, something which is quite frightening. 

Nurses in hospitals etc are told to speak quietly and touch the person going through these, in the hope of bringing them out of this, but as I pointed out to graduate nurses while giving a presentation last year, this can be highly dangerous to anyone trying to help.

My wife has found out at times, that is hazardous, because she can become part of the nightmare, and then get hurt in the process, and she has a good idea what it's like, as she has become part of this when she gets too close. 

My wife tried this one night and ended up with a nasty black eye and bruises after one nightly horror show, and that was upsetting for me, as well as for her.

Having totally demolished two bedside lights and other things, there is now nothing important next to my side of the bed.

After seeing the damage after a bad night, it brings you down to earth a little 

But I could describe everything in great detail, when I wake up,  which is not nice. 

I understand that  I lash out and kick out, once these things start. 

There seems to be no reason for these, as many of them bare no links to reality, and that makes life hard to work out.
Last year my consultant gave me a trial of some medication, in the hope that it would help, which it did for a while then the horrors started all over again a few weeks ago.

After a nightmare, if I am lucky enough to wake up on my own, I usually get up, and either sit in the bathroom or go downstairs for a while, if I am not feeling wobbly. 

However sometimes,  these things start off all over again from where they had stopped, and that is terrifying 

I think part of the problem is that when I  wake up, I cannot tell the difference between the nightmare or reality, and it seems to take a while to settle down.

A few years ago after a flood-damaged our home we were moved into a small flat, and one night I had the worst night I had ever had. 

I was convinced that I had woken up from a nightmare and had gone into the sitting room, had a cup of tea, and had then gone to the toilet. This happened three times, then I eventually woke up and realized that it was all part of the nightmare. 

My wife said I woke up in a total  panic 

Although there was no damage at all, this shook me rigid because I was convinced that I had been up three times, and had gone to the toilet. 

I confess that I am absolutely terrified of ever being sent into a hospital, because I have no control over what happens during these nights, and the last thing I want is to be charged with assaulting a nurse or anyone else, while I am going through a night like this. 

Although things are not as bad as they used to be, it's still difficult to understand. 

I often wake up in the morning feeling very tired and sometimes ache, I guess because of the lashing out. 

While it's difficult for me it must be worse for my wife, because it means that she must keep her distance while trying to wake me up 

When this all started, I thought that I was going mad,  but I understand that it's all part of the Lewy Body Dementia. 

Perhaps it also accounts for my deep sleeping during the day.

Very bad nights

 I have often had horrendous nightmares which are very vivid many of which can be described in great detail long after waking up. I have also wanted to get out of bed during the night to visit the bathroom, and have never been very sure that I actually got out of bed until I hit the wall in the bathroom to make sure I am there.

Sometimes if I wake from the vivid nightmares, I get out of bed and sit in a chair, but these sometimes start all over again when I go back to bed.

One night it all came to a head when I tried to escape from the nightmare by climbing out of the bedroom window, but my wife woke up just in time, as we were in a hotel and on the third floor. I suppose the lucky part of that night was the fact that the window would only open about 3 inches, and it’s was the sound of me trying to force it that woke my wife up.

On another night I was standing in the corner trying to get away from the horror, and as explained before I could describe it all to my wife when I settled down later in the day. 

This is all very distressing when it happens and there are times when I really don’t want to either go to bed or go to sleep because it sometimes terrifies me of what may become.

I know that it’s all part of my illness, but to be honest it still does not help.  There is a medication that helps but mine was reduced as I just could not wake up at all and that was disastrous for me.

On one such event, I remember thinking that I had got out of bed on three occasions, and each time I went back to sleep the same nightmare started again. It was only when I finally woke up that I realised, that this was the first time I had woken up, and the rest of the time I only dreamt, that I had woken up and got out of bed? But this was so graphic that it was difficult to understand just what happened.

This worries me as I wonder how many people have heart attacks during these dreams which are so nasty you simply can not break free of them.

I have also found it very hard at times, to work out just what is reality and what is just imagination.

I often find myself in a toilet during the day or night and end up hitting the wall, to make sure I am where my brain tells me I am. This often ends up with me having a very sore hand the next day.

This must be one of the most distressing illnesses there is, as it's difficult to make a clear cut between reality and fiction. 
Many people have said on occasions, that when someone is having a very bad night, the carer should sit close and speak to the person. This is something both my wife and I will tell you is not a good idea, as you then become part of that bad dream and can end up being hurt. 

In this case, my wife ended up with a black eye, which was very sad and distressing for me.

This comes back to the point where at nights it is very difficult to separate the horrible dreams from reality, We all dream at night, but in the morning the detail can be very sketchy, but since my diagnosis, or just before it started I have been able to remember the worst nightmares in great detail, and occasionally write them down in the hope that they have some bearing on life, but in reality, there is nothing at all, as these things have no bearing at all on my life or family they are totally weird

  

Hearing loss

 I struggle with hearing loss, which could be linked to life working in places which were noisy and there was no protective equipment in the early days.

These days I struggle to hear the television, and work out what is being said clearly unless the sound is turned right up. 

Ontop of this I have tinnitus which drives me mad at times, because it can be high pitched whistles, or sounds like bells ringing and other times it sounds like a loud humming noise as if I was next to a big motor. 

This usually gets worse when I remove my hearing aids, at bedtime etc, but it can also be picked up during the day while I am wearing my hearing aids, and this is distracting.

In busy rooms it becomes difficult to work out what someone is saying, even if they are right in front of me, because I pick up a lot of background noise. 

This is one thing which annoyed me about the  television at times, because they sometimes play a lot of music, which can be louder than the people talking. 

Another problem these days is the hazard of electric scooters and pushbikes riding on footpaths, because we don’t hear them until they are right on top of us. Many simply won’t have a bell because it’s not manly to have a bell on your bike. But these people simply don’t care about anyone but them selves. 

Electric cars are also a hazard because there is no noise to puck up on.

To many like myself even a simple footpath is an accident waiting to happen when it comes to all of these things. When I was working it was illegal to cycle on a footpath, but now it’s the done thing. 

Like many people I would love to get rid of background noise, but I do wonder what this would do as far as electric vehicles etc would do, would it be more hazardous, or would my hearing pick up these noises a lot better. 

Looking forward to the end of the lockdown

 I for one am looking forward to the end of the lockdown as it’s starting to become very stressful. My wife encouraged me to go for walks on a morning because my legs were giving up, and I needed to walk. 

However things like going to hospital etc add extra problems, which really drive me mad. This is because I wear glasses and hearing aids, and trying to remove a face mask, without pulling these off is becoming a nightmare. I have come close to losing my hearing aids and dropping my glasses, simply because I cannot workout how to do it all safely. 

Once the mask is on, it seems to get tangled up with both hearing aids and glasses, so they all come off in one go. When my wife is around she helps me, but there are times when she is not allowed to be with me, and then the fun starts. 

These things are expensive, as I was told my hearing aids would cost around £2000,00 if I lost them, which is frightening to think about. My glasses cost around £200.00 to buy which is bad enough. But I guess I am not alone in worrying about losing or breaking these things when removing a face mask. 

So I will be please when this is all over, although I understand we could be living with this virus for a long time yet 

Dementia and photography

 I one main hobby which I really enjoy these days, and that is photography something which gives me a lot of satisfaction, on good and bad days as it is so relaxing, to look at without doing much.

The second is photography, a hobby that I always enjoyed, even before the diagnosis, but now there are problems remembering the settings, etc.

The pleasure I get from this hobby is quite something, and yes things can and will go wrong but with digital photography, life is sometimes that bit easier, as the bad pictures can be removed rather than expensive processing only to find the photographs failed to come out or are blurred.

I have tried a few things to try to remember the settings, but I always get somewhere and either can not remember them or can not find the paper with them on. This gets distressing, but I have to fight this as I get so much out of the hobby that I can not give up,

I have a few friends who also have dementia, who are very keen photographers and they seem to have similar problems, so I am not alone.

I love taking pictures of wildlife, but as will all small things whether it is wildlife or children they never stay in the same place for very long, so patience has to be used, or you need somewhere comfortable to sit.

These days with the help of assistive technology things are slightly easier, because once I have got myself set up with the camera tripod and my remote camera switch, I can sit back and wait.

This photograph was taken early in the morning down at our local park, and it was a great thrill getting close to this bird which is normally shy, but there was no one else around at the time.

Being able to catch this otter was a wonderful experience to me as it was a very cold and damp day out in a boat, but it worked and is my pride and joy. I took this when we were on holiday in Scotland

Wildlife photography is very relaxing because it means that you have to sit still and be patient, and it can very thrilling when the shot comes outright.

I could not get very close with the shots above so I had to use a cheap zoom lens, but I did enjoy the pictures when I loaded them onto my computer.

There are many photography books, but none for those with this illness, so it's a case of trial and error, and I guess that many professionals don't think that people like me are worth helping. It's up to us to change that and prove them wrong because we are still active even though our memories and brains are doing their own thing

Of cause, we must always remember, that any pictures of people taken can never be shown on the Internet without permission, otherwise we can risk prosecution, whether we have this illness or not.

Recently I found that I had lost a lot of control when trying to use manual settings, and although that is upsetting, I can still use the automatic settings.