Friday, 24 January 2025
Technology and Modern day life
Thursday, 16 January 2025
Music and dementia
Although music can be calming for those living with Dementia, over the last few weeks, i have struggled to cope with some of the music i love most of the time
I don't know if this is linked to my chest infection probem or not but its weired how things have changed, and upsetting in other ways.
Someone suggested that it could be to do with the rhythm of the music at the time, but its odd how these things keep changing
Thursday, 9 January 2025
eyesight problems in dementia 2
Sunday, 29 December 2024
Eyesight problems and dementia
Having dementia is very hard to cope with at times, but adding other problems on makes life so much harder to cope with
Over the last few months i have had eyelid problems possibly linked to an infection, but it did not seem to go away for long. But i have now been given stringer antibiotic cream to use on it, in the hope that this can move on.
Then a few weeks ago i started seeing floaters in one eye, which is causing havoc, as i could not work out what was going on.
i had to give up reading because these things were bouncing around my eye causing a big distraction
These were things like large rings, sometimes spider webbed type things, and it is a nightmare to cope with. Sometimes these things look like large strangle shaped air bubbles or squares, occasionally spiders webs
After seeing our local eye speciialist, he said they were spectacular objects to look at under his machine, amazing thimgs inc, including harp like objects and web like objects, and large rings
Although they may be spectacular to him, they are a nightmare to me, as they only way out of it is to close one eye and try to stay out of bright lights.
Once or twice i have seen what looked like a spider in the corner of the eye, and after trying to remove it i realised that its all part of the floaters, as there is no real spider on my face
It all ads to a distressing situation, which i have to wait until it disappears on its own
Friday, 25 October 2024
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
Wednesday, 23 October 2024
Music and Dementia
Music has always been used as a way of relaxing or enjoying ourselves, as it can have an active effect on our brains.
When I was studying at college our lecturer always said try listening to music in the background, as it helps us relax and also allows us to to in more information.
I confess that in my teenage years, I was getting into classical music, and thought Mozart was very relaxing, but my father who was a Church Warden as well as being a miner thought I was a little odd, listening to this sort of music. However, after a few years, it grew in him and he too found classical music relaxing.
Since my brain went haywire with Dementia I have found certain types of music can have the wrong effect, especially if it is going fast, I think it is called fast tempo, or something like that.
This is because fast music does things to my brain, especially if I cannot sleep and then I listen to my IPod touch, which is loaded with all types of music, some relaxing and some lively.
I found that some music that I enjoy during the day has the wrong effect during the night, and can make the brain overactive and cause nightmares etc.
However, I do feel that music can have a very relaxing impact on those with any firm of Neurological illness as it's quite calming and lets you relax providing it's the right sort of music
Many years ago I was in Church Choir for a few years, but now I can't sing at all although I enjoy listening to choirs singing
Sunday, 6 October 2024
Lack of Services for those living with dementia
Many people in County Durham are saying that their are a total lack of services for those living with Dementia and their carers, where years ago there were lots of things going on under the Alzheimer's Society.
It seems that a lot of these local services have disappeared now, and as someone said the other day all local calls seem to be diverted to London, rather than being dealt with locally, even the old Society Office is boarded up
In years gone by the local office had ran lots of services for those living with the illness, and their carers but now they are left to find a smaller locally based charity for support and help, otherwise they are left in their own without support
This is so sad as the Alzhimers Society claims to be their to help and support all going through this journey lining with dementia in the UK, or caring for those living with the illness.
There are not many charities in this area supporting thise with the illness, something which is a vital service, one which could help people to live a more active and better life while going through this journey
Thank you for the voice activated software, which allowed me to carry in writing this as and when I can
Wednesday, 2 October 2024
Time for survival for Carers etc
Thursday, 26 September 2024
Alive and still active
A recent advert from the Alzheimers Society telling us that people with dementia supposedly keep dying
over and over again, is in many peoples views insulting and so negative
This is because it is well known that if you remain active, you live well with the illness.
In the words of my Consultant, if you cannot do something one day, leave it till the next day, if you cannot do it then, try again on the third day. If that fails forget it and move on, otherwise I would get depressed and that would only make things worse
Yes we may lose the ability to do certain things that were easy in the past, but thats not the end of it. I lost many hobbys because they became dangerous, and although that was upsetting, i did not die?
I often wonder who writes these adverts especially this one, because its done more harm than enough and has upset quite a lot of people because its so negative
I guess if you dont have the support of family and good friends, you may feel upset and isolated, but that again is not dying
Many years ago as one of the Alzheimers Societies Ambassadors, along with another Ambassador Peter Ashley were asked to help write a booklet on Lewy Body Dementia, which then got printed.
The next we heard of it, was that it had been scrapped because in the view of one of their proof editors,
it was too graphic, because we had mentioned the graphic nightmares which are quite common in this illness.
But the person who objected had no idea about the illness, but rather than discussing it, they had it scrapped
Yet they have the nerve to say people with dementia keep dying again and again
Sunday, 15 September 2024
pneumonia and dementia
When I was working as a university college engineer, as i had electrical experience, but then i became ill,
and was taken to hospital with Pneumonia, something which was hard to cope with
It was at the time thought that i had a form of bacterial pneumonia but the tests were never completed, as the hospital was under a Government revue as doctors had complained about the state of the hospital then it was then closed down as the hospital was unfit for respiratory illness,
However this was the start of things going away from me, as I forgot how to do my electrical training and this hit hard and had me in tears, but that was only the start
Then one day my daughter rang me and i did not know who she was, which was terrifying afterwards, as it was for her as we were very close, and still are
I had previously completed a new examination on the Electrical regulations, but nothing made sense any more.
I used to do estimates for all of the maintenance work in the college, yet I was having to count on my fingers as the calculator didn't make sense anymore
After a few more things went wrong I went to see the university medical department who sent me to see a neurologist for tests
I was sent to see a clinical psychologist who after 5 hours of tests said i was just lazy and not trying, after which my wife hit the roof and we went home where she rang the university medical department doctor who was livid, because she had told me to record all meetings and medical appointments, as my memory was getting worse, but after listening to the recordings she left the room and rang the clinical psychologist for an apology
No one seemed to understand what had happened to my brain or memory and it was very hard, especially when i left for work and forgot where i was going
Eventually I was told i had Alzheimer's, which was then changed to Lewy Body Dementia
Now it seems that researchers have found a link between pneumonia and neurological problems, which may have been the answer because this in turn causes or can cause Dementia as well as other things
From Blogger iPhone clientSunday, 1 September 2024
Dementia Friends
Friday, 16 August 2024
All change
After enjoying holidays in our static caravan, its all come to an end, because its becoming difficult to cope with the changes when i go back home again
It was really nice when we went to our little corner of Barnard Castle to enjoy the changes of scenery, and meeting new people, who were very friendly andalways seemed to have time to stop and speak
However as i said, i have struggled recently to cope with things i used to take in my stride, like cooking, staying on my own for a few days, while enjoying the wildlife and scenery.
listening to the owls during the night was nice becauseit felt as is someone was watching over me
Monday, 29 July 2024
Not a good day
We were invited to a family wedding on Saturday, something in all honestly i really did not want to go to as many don't understand this illness, and some view it as an oddity, something which annoys me.
Plus I have never ever felt part of that side of the family, but we went
However i don't cope with a lot of noise or large numbers of people these ddays so it's a bit difficult to cope with
We then found out that they jumped up and down during the service, while hooping and yelling, something i found a little odd. while waving their arms around, which was unsettling to say the least
Along with this we found to my horror that this was an old ballroom with a double sprung floor, which in turn made me feel totally unstable and slightly seasick.
We did not stay for the reception, because i was drained after a 2 hour service, even though i was sat down most of that time.
When we got home we had a meal, then i fell asleep for 2 hours, and missed talking to our daughter, something i love, because she lives so far away.
i now realise that i will never go to something like that again because of the stress etc.
Sunday, 30 June 2024
Trying to keep active
Even though i was originally diagnosed back in 2003 then again in 2004/5 as the fitst hospital had lost my notes, i have tried my best to remain active in any way i can.
This is not always easy but, its no good just sitting down and doing nothing, as this will just make matters worse
Tuesday, 12 October 2021
End of the blog
Wednesday, 29 September 2021
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
Thursday, 16 September 2021
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
Tuesday, 24 August 2021
Research into Lewy Body
Research summary report:
Multimodal Imaging in Lewy Body Disorders
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
Sunday, 15 August 2021
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
Saturday, 24 July 2021
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.
Technology and Modern day life
When I left school there was very little known about modern technology as we know it today, even the telephone that we have taken for grante...
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Although music can be calming for those living with Dementia, over the last few weeks, i have struggled to cope with some of the music i lov...
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Dementia and Eyesight problems I noticed some time ago, that my eyesight was giving me problems when trying to read and concentrate on t...
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A few weeks ago I wrote about problems processing information, but over the last few days I have noticed other problems, which will have an...