tag:blogger.com,1999:blog-76415988363492801992024-03-23T10:11:01.187+00:00Living with Dementia and Comorbidities Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.comBlogger1005125tag:blogger.com,1999:blog-7641598836349280199.post-70408303509454566972021-10-12T16:00:00.002+01:002021-10-12T16:00:51.329+01:00End of the blog <div dir="ltr">After giving it a lot of thought over the last few months, I have decided to finally stop writing this blog now</div><div dir="ltr"><br /></div><div dir="ltr">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.</div><div dir="ltr"><br /></div><div dir="ltr">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. </div><div dir="ltr"><br /></div><div dir="ltr">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. </div><div dir="ltr"><br /></div><div dir="ltr">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 </div><div dir="ltr"><br /></div><div dir="ltr">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.</div><div dir="ltr"><br /></div><div dir="ltr">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.</div><div dir="ltr"><br /></div><div dir="ltr">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.</div><div dir="ltr"><br /></div><div dir="ltr">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 </div><div dir="ltr"><br /></div><div dir="ltr">Shortly I will also be stopping using Twitter, for the same reasons. </div><div dir="ltr"><br /></div><div dir="ltr">But life goes on. Thank you for all of your kind comments over the years.</div><div dir="ltr"><br /></div><div dir="ltr">Best wishes</div><div dir="ltr"><br /></div><div dir="ltr">Ken</div>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com1tag:blogger.com,1999:blog-7641598836349280199.post-70295291792701312021-09-29T08:42:00.000+01:002021-09-29T08:42:41.587+01:00How things change in life<p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">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.</span></p><p><span style="font-family: Arial; font-size: 11pt; white-space: pre;">Being an engineer I got my first mobile phone and computer in the 1990s, and was forced into a life that, </span><span style="font-family: Arial; font-size: 11pt; white-space: pre;">I found very hard to do without formal without training or support in computers. </span></p><p><span style="font-family: Arial; font-size: 11pt; white-space: pre;">The mobile was used as I was on call as an engineer 24 hours a day, and the MS-DOS computer </span></p><p><span style="font-family: Arial; font-size: 11pt; white-space: pre;">was to help me do my reports and estimating, etc through the working day. </span></p><p><span style="font-family: Arial; font-size: 11pt; white-space: pre;">This was a far cry from today’s computers, and a lot slower. </span></p><p><span style="font-family: Arial; font-size: 11pt; white-space: pre;">However today we have moved on to things like online meetings, like zoom, something I now struggle </span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">to cope with it. </span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">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. </span></p><p></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">Coupled with hearing problems, I struggle to cope with different toned voices </span></p><div><span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;"><br /></span></div>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-34122083004919911212021-09-16T10:08:00.001+01:002021-09-16T10:08:59.450+01:00Quiet Life<p><span style="font-family: arial; font-size: 11px;">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.</span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><span style="font-family: arial;"><br /></span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;">This is a place where I want to stay, and not go home, I guess because I feel safe and free to enjoy myself.</span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><span style="font-family: arial;"><br /></span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;">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.</span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;"><br /></span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;">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 </span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;"><br /></span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;">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. </span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><span style="font-family: arial;"><br /></span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;">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.</span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;"><br /></span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><span style="font-family: arial;">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.</span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><span style="font-family: arial;"><br /></span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;">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 </span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;"><br /></span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;">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</span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;"><br /></span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;">I confess that this suits me fine because I can do odd DIY jobs when I feel up to it.</span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;"><br /></span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;">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. </span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;"><br /></span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><br /></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;"> </span></p><p style="font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: arial;">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.</span></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;">courtesy of speech notes which helps me to speak and write things down </p>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-25604282179371652082021-08-24T21:03:00.002+01:002021-08-24T21:03:15.653+01:00Research into Lewy Body <p> <span face="Lato, sans-serif" style="background-color: white; color: #2b8ece; font-size: 50.24px; letter-spacing: -0.002em; text-align: center;">Research summary report: </span></p><p><span face="Lato, sans-serif" style="background-color: white; color: #2b8ece; font-size: 50.24px; letter-spacing: -0.002em; text-align: center;">Multimodal Imaging in </span><span face="Lato, sans-serif" style="background-color: white; color: #2b8ece; font-size: 50.24px; letter-spacing: -0.002em; text-align: center;">Lewy Body Disorders</span></p><header class="entry-header" style="background-color: white; box-sizing: border-box; color: #1a1a1a; font-family: Lato, sans-serif; font-size: 16px;"><p class="p-meta" style="box-sizing: border-box; font-size: 20px; line-height: 1; margin: 11.1094px 0px 0px; opacity: 0.35; text-align: center;"><span style="box-sizing: border-box; display: inline-block; margin: 0px 19.4375px;"><time class="entry-date" datetime="2021-07-19T16:36:43+01:00" style="box-sizing: border-box;">July 19, 2021</time></span></p></header><div class="entry-content content" style="background-color: white; box-sizing: border-box; color: #1a1a1a; font-family: Lato, sans-serif; font-size: 16px; margin-top: 33.3281px; padding: 0px 111.141px;"><p style="box-sizing: border-box; margin: 0px 0px 1.313em;">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.</p><p style="box-sizing: border-box; margin: 0px 0px 1.313em;">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.</p><p style="box-sizing: border-box; margin: 0px 0px 1.313em;">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.</p><p style="box-sizing: border-box; margin: 0px 0px 1.313em;"><strong style="box-sizing: border-box;"><u style="box-sizing: border-box;">Progress report – MEG Dementia with Lewy Bodies, University of Cambridge</u></strong></p><p style="box-sizing: border-box; margin: 0px 0px 1.313em;"><em style="box-sizing: border-box;">Overall progress towards the goal of the award and key achievements</em></p><p style="box-sizing: border-box; margin: 0px 0px 1.313em;">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.</p><p style="box-sizing: border-box; margin: 0px 0px 1.313em;">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.</p><p style="box-sizing: border-box; margin: 0px 0px 1.313em;">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.</p><p style="box-sizing: border-box; margin: 0px 0px 1.313em;">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.</p><p style="box-sizing: border-box; margin: 0px 0px 1.313em;"><em style="box-sizing: border-box;">Issues that have limited the progress</em></p><p style="box-sizing: border-box; margin: 0px 0px 1.313em;">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.</p><p style="box-sizing: border-box; margin: 0px 0px 1.313em;">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.</p><p style="box-sizing: border-box; margin: 0px 0px 1.313em;">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.</p><p style="box-sizing: border-box; margin: 0px 0px 1.313em;">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.</p><p style="box-sizing: border-box; margin: 0px 0px 1.313em;">(Date 27 May 2021)</p><p style="box-sizing: border-box; margin: 0px 0px 1.313em;">Li Su, PhD</p><p style="box-sizing: border-box; margin: 0px 0px 1.313em;">Professor of Neuroimaging, University of Sheffield<br style="box-sizing: border-box;" />ARUK Senior Research Fellow, University of Cambridge</p><p style="box-sizing: border-box; margin: 0px;"> </p></div>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-59200475939642101942021-08-15T18:28:00.003+01:002021-08-15T18:28:59.610+01:00Lord help me with this illness<p> Lord help me with this illness</p>
<p align="center" style="margin-bottom: 0.35cm;">I want to be as I
was, but cannot turn the clock back</p>
<p align="center" style="margin-bottom: 0.35cm;">To understand what is
happening to me,</p>
<p align="center" style="margin-bottom: 0.35cm;">To a time when I was
in control over what I did and said</p>
<p align="center" style="margin-bottom: 0.35cm;">I know I have
dementia and my life has changed</p>
<p align="center" style="margin-bottom: 0.35cm;">I feel that I am not
in control of my life anymore</p>
<p align="center" style="margin-bottom: 0.35cm;">Nor am I am the same
person, that I was before</p>
<p align="center" style="margin-bottom: 0.35cm;">I cannot do the
things that I did before, or they are more difficult to do,</p>
<p align="center" style="margin-bottom: 0.35cm;">I do not sleep as I
did before and feel refreshed</p>
<p align="center" style="margin-bottom: 0.35cm;"><a name="_GoBack"></a>
My dreams are not happy but things of terror from which there is no
escape</p>
<p align="center" style="margin-bottom: 0.35cm;">I am not the same
father or husband and that is sad</p>
<p align="center" style="margin-bottom: 0.35cm;">I may have done and
said things which are hurtful</p>
<p align="center" style="margin-bottom: 0.35cm;">I know that many of
the bad things I do are a mistake</p>
<p align="center" style="margin-bottom: 0.35cm;">But it does not help
when it happens</p>
<p align="center" style="margin-bottom: 0.35cm;">Give me the courage
to fight this and not to give in</p>
<p align="center" style="margin-bottom: 0.35cm;">As that would be too
easy, and there is too much I wish to do</p>
<p align="center" style="margin-bottom: 0.35cm;">Some days can be
awful, and some as normal as possible</p>
<p align="center" style="margin-bottom: 0.35cm;">Some, times I just
want to sleep, and that would be too easy</p>
<p align="center" style="margin-bottom: 0.35cm;">But I know that I
would not sleep at night</p>
<p align="center" style="margin-bottom: 0.35cm;">Trying to pray is
becoming harder, as I can never find the right words</p>
<p align="center" style="margin-bottom: 0.35cm;">Or I cannot remember
the words to the Lords Prayer</p>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-86437368518320152252021-07-24T08:16:00.000+01:002021-07-24T08:16:02.047+01:00Lewy Body dementia and seeing things<p> <span face=""PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif" style="background-color: white; color: #303030; font-size: 20px; white-space: pre-wrap;">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. </span></p><p><span face=""PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif" style="background-color: white; color: #303030; font-size: 20px; white-space: pre-wrap;">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. </span></p><p><span face=""PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif" style="background-color: white; color: #303030; font-size: 20px; white-space: pre-wrap;">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.</span></p><p><span face=""PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif" style="background-color: white; color: #303030; font-size: 20px; white-space: pre-wrap;">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. </span></p><p><span face=""PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif" style="background-color: white; color: #303030; font-size: 20px; white-space: pre-wrap;">However life can be difficult at times trying to work out whether something is real, or if my brain is playing tricks with me. </span></p><p><span style="color: #303030;"><span style="background-color: white; caret-color: rgb(48, 48, 48); font-size: 20px; white-space: pre-wrap;">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. </span></span></p><p><span style="color: #303030;"><span style="background-color: white; caret-color: rgb(48, 48, 48); font-size: 20px; white-space: pre-wrap;">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.</span></span></p><p><span style="color: #303030;"><span style="background-color: white; caret-color: rgb(48, 48, 48); font-size: 20px; white-space: pre-wrap;">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. </span></span></p><p><span style="color: #303030;"><span style="background-color: white; caret-color: rgb(48, 48, 48); font-size: 20px; white-space: pre-wrap;">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.</span></span></p><p><span style="color: #303030;"><span style="background-color: white; caret-color: rgb(48, 48, 48); font-size: 20px; white-space: pre-wrap;">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.</span></span></p><p><span style="color: #303030;"><span style="background-color: white; caret-color: rgb(48, 48, 48); font-size: 20px; white-space: pre-wrap;"><br /></span></span></p>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-80463346162853071162021-07-17T15:32:00.000+01:002021-07-17T15:32:53.680+01:00Dentists and Dementia<p><span style="font-family: "Helvetica Neue"; font-size: 11px;">Dental treatment in dementia</span></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;">Recently I got involved in research into what dental treatment people want after a diagnosis of dementia, something I confess I had never considered </p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;">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.</p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;">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</p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;">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</p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;">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.</p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;">My medical history and medications are all listed in his computer screen, which he always checks before the treatment starts.</p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;">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.</p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;">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.</p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;">Some people are needle phobic, and some like me struggle when people get close up, in front of my face.</p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;">I confess that I don’t want expensive treatment, and never have done, and this is always taken on board.</p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;">Recently I had to have a tooth removed as the fillings kept coming out, even though different types of fillings were tried.</p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;">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.</p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 13.1px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;">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. </p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;">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 </p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;">Some have even tried to get me to have expensive crowns, when I simply don’t want them </p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;">I believe that dentists should ask a patient for their thoughts before going ahead with expensive treatment.</p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"><br /></p><p style="font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal; margin: 0px;"> Ask rather than assume you know best </p>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-10191224379451650472021-07-06T14:39:00.000+01:002021-07-06T14:39:45.650+01:00Do researchers understand Lewy Body Nightmares<p> I got involved with research into sleep problems in dementia recently, thinking that it may involve Lewy body dementia too.</p><p>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.</p><p>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. </p><p>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.</p><p>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. </p><p>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.</p><p>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. </p><p>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.</p><p>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. </p>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-85490329541915645452021-06-30T09:33:00.001+01:002021-06-30T09:33:43.632+01:00Technology” where will it end”<p> 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.</p><p>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.</p><p>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.</p><p>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.</p><p> 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.</p><p>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.</p><p>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.</p><p>I find all of this technology is going over the top, as it’s going too fast, and many of us cannot cope. </p><p>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.</p><p> Is this another form of discrimination, I do wonder, because it’s causing more and more confusion to those of us with memory issues </p>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-69570528267881366932021-06-14T13:11:00.000+01:002021-06-14T13:11:57.843+01:00Dealing with added bowel problems<p> 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.</p><p>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.</p><p> 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. </p><p>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. </p><p>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. </p><p>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. </p><p>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. </p><p>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. </p><p>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. </p><p>This has been a big help and although my diet has totally changed to dairy free, to cut down the cramps and bloating. </p>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-64075001198510130032021-06-12T14:57:00.000+01:002021-06-12T14:57:08.996+01:00Dementia and hobby's <p> Many people give everything up after a diagnosis of dementia, and simply give up the will to fight on.</p>
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<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;"> 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.</span></div>
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<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">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.</span></div>
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<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">As far as art is concerned I don't seem to be able to draw properly anymore, which is upsetting.</span></div>
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<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">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.</span></div>
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<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;"> </span><span style="color: black; margin: 0px;">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</span></div>
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<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">Other people have other hobbies, which vary quite a lot.</span></div>
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<div style="-webkit-text-stroke-width: 0px; margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">I know someone who now carves walking sticks as a hobby, and that is amazing to hear about.</span></div>
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<div style="margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;"> </span><span style="color: black; margin: 0px;">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<em> </em>I do any damage to myself</span></div>
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<div style="margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">Others go walking with groups or meet other friends in pubs etc, where they have a good time.</span></div>
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<div style="margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">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.</span></div>
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<div style="margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">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.</span></div>
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<div style="margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">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.</span></div>
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<div style="margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">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. </span></div>
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<div style="margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">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. </span></div>
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<div style="margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">But I still carry on at my own pace and that's important to me, as well as my family </span></div>
<div><br /><span style="color: black; margin: 0px;">Photography keeps my brain active and allows me to take photographs of landscapes and wildlife, and to me, that's very important.</span><br /><br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">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. </span></div>
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<div style="margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">Yes, I can have bad days when I don't remember the camera settings, but it's not the end of the world.,</span></div>
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<div style="margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">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. </span></div>
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<div style="margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">The fact that I enjoy going out with my camera, and enjoy myself is all that matters. </span></div>
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<div style="margin-bottom: .0001pt; margin: 0cm;"><span style="color: black; margin: 0px;">I think everyone should be encouraged to remain active and mix with others while they can still do it.</span></div>
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<div>Many people give everything up after a diagnosis of dementia, and simply give up the will to fight on.<br /><br /> 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.<br /><br />As far as art is concerned I don't seem to be able to draw properly anymore, which is upsetting.<br /><br />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.<br /><br />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<br /><br />Other people have other hobbies, which vary quite a lot.<br /><br />I know someone who now carves walking sticks as a hobby, and that is amazing to hear about.</div>
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<div dir="ltr">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<em> </em> I do any damage to myself<br /><br />Others go walking with groups or meet other friends in pubs etc, where they have a good time.<br /><br />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.<br /><br />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.<br />
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<div dir="ltr">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.</div>
<div dir="ltr"> </div>
<div dir="ltr">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. </div>
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<div dir="ltr">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.</div>
<div dir="ltr"> </div>
<div dir="ltr">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.</div>
<div dir="ltr"> </div>
<div dir="ltr">Life moves on </div>
</div>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-28577036290781801472021-04-09T19:14:00.002+01:002021-04-09T19:14:59.306+01:00 Calming music<p dir="ltr">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.</p><p dir="ltr">Although these have been around a long time, it was not my sort of taste, which seems very strange</p><p dir="ltr">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.</p><p dir="ltr">My wife thought it could have been changed in the style or speed of the music, but sometimes it sent me into another nightmare.</p><p dir="ltr">My tastes in food has changed quite a lot, something that I grind very odd</p><p dir="ltr">Before and after we were married, I always liked British food and never touched anything like a curry, whether Chinese, Indian or anything else.</p><p dir="ltr">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.</p><p dir="ltr">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? </p><p dir="ltr">I confess that this was novel but really enjoyed it. It was not a normal breakfast but it was very nice.</p><p dir="ltr">But I simply don't understand how tastes change like this, as it simply does not make any sense at all.</p><p dir="ltr">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. </p><p dir="ltr">Obviously, something has changed dramatically inside the brain to cause this, but I dont know what.</p><p dir="ltr">My coordination has changed quite a lot too, and this causes many problems, so much so that many hobbies have been stopped.<br />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 </p><p><br /></p>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-5050864455786032522021-04-07T15:01:00.005+01:002021-04-07T15:01:55.022+01:00Interesting post about music and dementia <p> </p><h1 style="font-family: Arial, Helvetica, sans-serif; font-size: 1em; margin: 0px; min-height: 1px; padding: 0px;"><span style="font-size: 1em;">Classical music can help slow down the onset of dementia say researchers after discovering Mozart excerpts enhanced gene activity in patients</span></h1><ul class="mol-bullets-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; margin: 0px; min-height: 1px; padding: 0px;"><li style="list-style: none; margin: 0px; padding: 0px;"><span style="font-size: 1.4em;"><strong>Research saw patients listen to Mozart's violin concert No 3 for 20 minutes</strong></span></li><li style="list-style: none; margin: 0px; padding: 0px;"><span style="font-size: 1.4em;"><strong>The 'musically-experienced' people had enhanced gene activity, it found </strong></span></li><li style="list-style: none; margin: 0px; padding: 0px;"><span style="font-size: 1.4em;"><strong>Music also affected risk gene synuclein-alpha, connected to Parkinson's</strong></span></li></ul><div class="author-section byline-plain" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><br /></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;">Classical music can help slow down the onset of dementia, new research has found.</span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;"><br /></span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;"><br /></span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;"><br /></span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;"><br /></span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;">Scientists discovered that patients who listened to experts of Mozart had enhanced gene activity in the </span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;">brain in areas including memory and learning.</span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;">Meanwhile, the music also affected the activity of a risk gene connected to Parkinson's disease.</span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;"></span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"></div><div class="artSplitter mol-img-group" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; margin: 0px; min-height: 1px; padding: 0px;"><div class="mol-img" style="margin: 0px; min-height: 1px; padding: 0px;"><div class="image-wrap fff-pic" style="cursor: pointer; margin: 0px; min-height: 1px; padding: 0px; position: relative;"><div class="share-pictures-overlay" id="share-pictures-1" style="margin: 0px; min-height: 1px; padding: 0px;"></div><br /></div></div><div class="imageCaption" style="min-height: 1px; padding: 0px;"><br /></div></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;">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.</span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;">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.</span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.52em; line-height: 1.31em;">...</span></div><div class="mol-img-group floatRHS" style="float: right; font-family: Arial, Helvetica, sans-serif; font-size: 10px; margin: 0px 0px 10px 20px; min-height: 1px; padding: 0px; width: 308px;"><div class="mol-img" style="margin: 0px; min-height: 1px; padding: 0px;"><div class="image-wrap fff-pic" style="cursor: pointer; margin: 0px; min-height: 1px; padding: 0px; position: relative;"><img alt="The research involved participants listening to Mozart (pictured) for 20 minutes" class="blkBorder img-share" height="488" id="i-2fbee2d98b6dfe8e" src="http://i.dailymail.co.uk/i/pix/2015/03/15/0C855613000005DC-2995977-The_research_involved_participants_listening_to_Mozart_pictured_-m-6_1426441808965.jpg" style="border: 1px solid rgb(0, 0, 0); margin: 0px; padding: 0px;" width="306" /><br /><div class="share-pictures-overlay" id="share-pictures-2" style="margin: 0px; min-height: 1px; padding: 0px;"></div><div class="overlay-icon mobile-gallery" style="background-color: rgba(0, 0, 0, 0.4); background-position: 0% 50%; background-repeat: no-repeat; border-bottom-left-radius: 3px; border-bottom-right-radius: 3px; border-radius: 3px; border-top-left-radius: 3px; border-top-right-radius: 3px; bottom: 11px; box-sizing: border-box; color: white; display: table; font-family: arial; font-size: 16px; height: 36px; line-height: 34px; margin: 0px; min-height: 1px; padding: 0px; position: absolute; right: 10px;"><div class="mobile-gallery-icon" style="background-attachment: initial; background-clip: initial; background-color: initial; background-origin: initial; background-position: 10px 50%; background-repeat: no-repeat; background-size: 27px; background: url(http://i.dailymail.co.uk/i/furniture/mobile/icon_camera_90x68.png) 10px 50% / 27px no-repeat; box-sizing: content-box; display: table-cell; float: none; height: 20px; margin: 0px; min-height: 1px; padding: 7px 10px 0px; vertical-align: middle; width: 24px;"></div><span style="display: table-cell; padding-right: 10px; padding-top: 2px; vertical-align: middle;">+2</span></div></div></div><div class="clear" style="border: 0px; clear: both; float: none; font-size: 0px; height: 0px; line-height: 0; margin: 0px; min-height: 0px; padding: 0px; width: auto;"></div><div class="imageCaption" style="min-height: 1px; padding: 0px;">The research involved participants listening to Mozart (pictured) for 20 minutes</div></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;">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.</span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;">Meanwhile, the music appeared to down-regulate genes associated with neuro-degeneration, which is the progressive loss of the structure or function of neurons.</span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;">The researchers said several of the up-regulated genes were ones which are responsible for song learning and singing in songbirds.</span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;">This suggests a common evolutionary background of sound perception across different species, they said.</span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;">One of the most affected genes in this area was synuclein-alpha (SNCA), which is also a known risk gene for Parkinson's disease. </span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;">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.'</span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;">He added: 'The effect was only detectable in musically experienced participants, suggesting the importance of familiarity and experience in mediating music-induced effects.'</span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;">Dr Jarvela added that the findingscould give give further insight into the molecular mechanisms underlying music therapy.</span></div><div class="mol-para-with-font" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; min-height: 1px; padding: 0px;"><span style="font-size: 1.2em;">The effects of this are still largely unknown.</span></div><div class="column-content cleared" style="font-family: Arial, Helvetica, sans-serif; font-size: 10px; margin: 25px 0px 10px; min-height: 1px; padding: 0px;"><div class="shareArticles" style="float: left; margin: 0px; min-height: 1px; padding: 0px 10px 0px 0px; width: 232px;"><h3 class="social-links-title" style="border-bottom-color: rgb(0, 0, 0); border-bottom-style: solid; border-bottom-width: 1px; border-bottom: 1px solid rgb(0, 0, 0); font-size: 1.6em; margin: 0px; min-height: 1px; padding: 0px;"></h3></div></div><span face="Arial, Helvetica, sans-serif" style="font-size: 10px;"><br /></span>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-55457038691582236752021-04-01T14:04:00.000+01:002021-04-01T14:04:49.619+01:00Violent nightmares<p> 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.</p>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.<br /><br />I remember the first one I had which I told my consultant about when I saw her at the clinic.<br />It was at this point that I learned that these were all caused by my illness and not medication of any kind.<br /><br /> 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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />However, I understand that people who have this form of dementia struggle with some medications, so they are only used as short trials.<div><br /></div><div><br /></div><div><br /><div><br />I recently had a very bad night which shook me rigid afterward when I looked back at it.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br /> <span style="font-size: 16px;">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</span></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br />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.</div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"> These started a few years ago when I was diagnosed as having a form of Lewy Body Dementia / Parkinsonism. </div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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. </div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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.</div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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. </div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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.</div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">Having totally demolished two bedside lights and other things, there is now nothing important next to my side of the bed.<br /><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-family: &quot; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-family: &quot; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">After seeing the damage after a bad night, it brings you down to earth a little </div></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-family: &quot; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-family: &quot; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">But I could describe everything in great detail, when I wake up, which is not nice. </div></div><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">I understand that I lash out and kick out, once these things start. </div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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.<br />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.</div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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. </div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">However sometimes, these things start off all over again from where they had stopped, and that is terrifying </div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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.</div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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. </div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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. </div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">My wife said I woke up in a total panic </div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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. </div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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. </div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">Although things are not as bad as they used to be, it's still difficult to understand. </div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">I often wake up in the morning feeling very tired and sometimes ache, I guess because of the lashing out. </div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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 </div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">When this all started, I thought that I was going mad, but I understand that it's all part of the Lewy Body Dementia. </div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div dir="ltr" style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">Perhaps it also accounts for my deep sleeping during the day.</div><div><br /></div><b></b></div>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-45499448025952739632021-03-30T14:55:00.008+01:002021-03-30T14:55:54.381+01:00Very bad nights<p> <span style="font-family: Calibri;">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.</span></p><br /><div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;">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.<o:p></o:p></span></div><br /><div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;">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.<o:p></o:p></span></div><br /><div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;">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. <o:p></o:p></span></div><br /><div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;">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.<o:p></o:p></span></div><br /><div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;">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.</span></div><div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;">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 </span><span style="font-family: Calibri;">woken up and got out of bed? But this was so graphic that it was difficult to understand just what happened.</span></div><div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;">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.</span></div><div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;">I have also found it very hard at times, to work out just what is reality and what is just imagination.</span></div><div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;">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.</span></div><div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;">This must be one of the most distressing illnesses there is, as it's difficult to make a clear cut between reality and fiction. </span><br /><span style="font-family: Calibri;">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. </span><br /><span style="font-family: Calibri;"><br /></span><span style="font-family: Calibri;">In this case, my wife ended up with a black eye, which was very sad and distressing for me.</span><br /><span style="font-family: Calibri;"><br /></span><span style="font-family: Calibri;">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</span><br /><span style="font-family: Calibri;"><br /></span><span style="font-family: Calibri;"><br /></span><span style="font-family: Calibri;"><br /></span><span style="font-family: Calibri;"><br /></span></div><div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;"> </span></div><br /><div class="MsoNormal" style="margin: 0cm 0cm 10pt;"></div><br />Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-70408243694518834382021-03-23T08:14:00.004+00:002021-03-23T08:14:58.888+00:00Hearing loss <p> 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.</p><p>These days I struggle to hear the television, and work out what is being said clearly unless the sound is turned right up. </p><p>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. </p><p>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.</p><p>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. </p><p>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. </p><p>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. </p><p>Electric cars are also a hazard because there is no noise to puck up on.</p><p>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. </p><p>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. </p><p><br /></p><p><br /></p>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-73421953741234660332021-03-13T11:18:00.000+00:002021-03-13T11:18:33.771+00:00Looking forward to the end of the lockdown<p> 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. </p><p>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. </p><p>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. </p><p>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. </p><p>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 </p><p><br /></p>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-89840259282338217592021-02-27T19:25:00.000+00:002021-02-27T19:25:39.568+00:00Dementia and photography <p> <span style="font-size: 16px;">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.</span></p><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">The second is photography, a hobby that I always enjoyed, even before the diagnosis, but now there are problems remembering the settings, etc.</div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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.</div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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,</div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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.</div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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.</div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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.</div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;"><br /></div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSFpUqRuQRwffV-AsEDU1AKnD2mQL1MmYWQgi6yh8t3cBp_6cIChKiP1gnpsdyci8Q64oipM5kHDqwd6XnStn_2ZODeO8RBViC_dbX5eIUMMKMRJax0F46hoCdhK10xc35hSayXAJEyayb/s1600/IMG_3502.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSFpUqRuQRwffV-AsEDU1AKnD2mQL1MmYWQgi6yh8t3cBp_6cIChKiP1gnpsdyci8Q64oipM5kHDqwd6XnStn_2ZODeO8RBViC_dbX5eIUMMKMRJax0F46hoCdhK10xc35hSayXAJEyayb/s320/IMG_3502.JPG" width="320" /></a></div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgljEjwdRDru8ayad417Zn6t3au65Jr12vAbJf6W0Qc5RgbYqoGaSblchLNDVCiUMsh0fNuGM0_GGEEl5haSHBT_3SYQ2n29sBqyZsow9XOOal9NYMiAzvs_6s9W-gdn7yXt9HZfCMJsS1J/s1600/Riverside+Walk+033.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgljEjwdRDru8ayad417Zn6t3au65Jr12vAbJf6W0Qc5RgbYqoGaSblchLNDVCiUMsh0fNuGM0_GGEEl5haSHBT_3SYQ2n29sBqyZsow9XOOal9NYMiAzvs_6s9W-gdn7yXt9HZfCMJsS1J/s320/Riverside+Walk+033.jpg" width="320" /></a></div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;">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.</div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;"><br /></div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKS2Md4OjqtP-GPMf8V_CfsWnIAdliohYoz89h8nSXG7JDG6IU2W2DnouNoXsyQjTCoOz-fp3tobgs8kot6Wx56v-98O2x1DWEGd390cQV_0HtZBPXxCvHSRyjIQ6HuJfto9xNiHEVBO7C/s1600/IMG_2979.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKS2Md4OjqtP-GPMf8V_CfsWnIAdliohYoz89h8nSXG7JDG6IU2W2DnouNoXsyQjTCoOz-fp3tobgs8kot6Wx56v-98O2x1DWEGd390cQV_0HtZBPXxCvHSRyjIQ6HuJfto9xNiHEVBO7C/s320/IMG_2979.JPG" width="320" /></a></div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix0GppHu5ySbYvRTUEPx5P0QP7KhvMeRl_6l1G4-ZcU6i5zGN5E0Jp-H9ieE7_Q06onbwrYDAySYU4Ywpzt28WtyGuFmKKBEhDqDr-6NdhWbGJNwkMiy0MUah_oTLqb7jWHC_2p6pCilJn/s1600/wildlife+059_edited-2.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="232" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix0GppHu5ySbYvRTUEPx5P0QP7KhvMeRl_6l1G4-ZcU6i5zGN5E0Jp-H9ieE7_Q06onbwrYDAySYU4Ywpzt28WtyGuFmKKBEhDqDr-6NdhWbGJNwkMiy0MUah_oTLqb7jWHC_2p6pCilJn/s320/wildlife+059_edited-2.jpg" width="320" /></a></div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;"><br /></div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;">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</div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;"><br /></div><div style="-webkit-text-stroke-width: 0px; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px;"><br /></div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;">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.</div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;"><br /></div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;">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.</div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;"><br /></div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;">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</div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;"><br /></div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;">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.</div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;"><br /></div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;">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.</div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;"><br /></div><div class="separator" style="-webkit-text-stroke-width: 0px; clear: both; font-size: 16px; font-variant-east-asian: normal; font-variant-numeric: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; margin: 0px; text-align: center;"><br /></div><b></b>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-91678016446343861012021-02-26T12:24:00.000+00:002021-02-26T12:24:26.951+00:00Dementia and hobbies<p> <span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">Many people have hobbies to keep them going, but like me many hobby’s are left behind, either because we cannot remember how to do them, or they become too difficult and unsafe to keep up. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">I used to love wood turning until it became too dangerous to carry on doing. Even with the emergency stop buttons, I simply tried to stop the machine in other ways, often ending up with injuries. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">So my son took it apart to stop me using it. It was sad, but I realised that it was needed to stop me hurting myself badly </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">During this time I used to love photography, a relaxing hobby, and something I really enjoyed doing. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">However this became difficult when I started to forget the settings. I always loved the manual settings, but realised that I had to forget that and move to automatic settings. Been that can be hard on the wrong day, but that’s life. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">On the odd days I would carry a camera around with me, but would just not be able to set it up, this would lead to me getting upset and depressed, but I knew the next day, things my be different and they may work, so it was a case of trying to keep going. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">A friend of mine was the same, and got close to giving up but was advised to try an exhibition. This was set up for him and the response was amazing. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">The reason being that people with dementia look at topics in different ways to professionals, who need everything in the correct place. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">This proved a point to me so I carried on. It’s my view that we all look for different things in a photograph, and it’s down to your own view, and no one else’s. I guess it’s a bit like art, some people like traditional art, while others like modern art etc. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;"> A few years ago I was at a dementia meeting, and a local artist came in with some pictures which were very modern. I vaguely remember looking and thinking something like, what on earth is that. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">After a while people started looking at them and then commenting about them, things like I can see a door or window. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">After looking again I too could see these things, so I guess it’s what your eyes can see in everything. Never judge a book by its cover comes to mind. </span></p>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-48821222085566396922021-02-21T15:40:00.000+00:002021-02-21T15:40:39.097+00:00Sign of the times<p> Recently I took the decision to step back, and retire from doing presentations and talks, because of ongoing medical problems. </p><p>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.</p><p> 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. </p><p>The Orthopaedic 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. </p><p>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 </p><p>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. </p><p> 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 facebook 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. </p><p>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. </p><p>During this time I have been honoured to be an Ambassador with the Lewy Body Society, which 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.</p><p> 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. </p><p>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. </p><p>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 342- 300 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 </p><p><br /></p><p> Ken</p>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-85947807398285022532021-02-18T09:22:00.000+00:002021-02-18T09:22:45.905+00:00Trying times<p> <span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">As we are all aware, things are difficult at present with this corona virus going around, but we have to try to remain active, which can be difficult when you are told to stay at home and not go out. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">I got to the stage where my legs were giving way, so my wife suggested that we went out early, so we could get round our local park which is 500 yards away. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">But that is difficult at times because of runners and cyclists who will not keep their distance from everyone else. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">These people are all young 20-30 year olds who don’t seem to care about anyone else. Many of these people spread out across the footpath, and will not move to allow you to pass. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">I have a walking stick, for my balance, but they even ignore this, and barge through. In the first lockdown in March people seemed to have more respect, but that seems to have gone out of the window now, but I guess this is because we have a Prime Minister, who does not have a clue, and seems to be ignoring the scientists. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">However we changed our routes and things went well until the snow and ice arrived, so we had to stay in. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">I do have exercises which I got for my pulmonary rehabilitation, and these are still done at home, along with my exercise bike. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">The bike may at times be slow work, but it all helps to keep my legs going, which has to be a good thing. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">Trying to stay fit and active also helps keep my brain going, and although it’s difficult at times, it does help. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">It would be so easy to sit down and give up, but I have a strong willed wife, and daughter who rings up and keeps me on my toes. </span></p><p><span style="background-color: white; color: #303030; font-family: "PT Sans", -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen, Ubuntu, Cantarell, "Fira Sans", "Droid Sans", "Helvetica Neue", sans-serif; font-size: 20px; white-space: pre-wrap;">As a Biologist she understands the body etc and will not let me give up. </span></p>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-60330877199686170512021-02-13T12:29:00.001+00:002021-03-03T12:06:29.788+00:00Are our carers looked after by this Government<span face=""Open Sans", "Helvetica Neue", Helvetica, Arial, sans-serif" style="caret-color: rgb(35, 35, 35); color: #232323; font-size: 16px;">Over the years carers of people with any illness, especially dementia, have had a raw deal from the British Government, and many people say that carers are being left to get on with their role, with out any support or care from social services or officials within the Government </span><div><span face="Open Sans, Helvetica Neue, Helvetica, Arial, sans-serif" style="color: #232323;"><span style="caret-color: rgb(35, 35, 35);"><br /></span></span></div><div><span face="Open Sans, Helvetica Neue, Helvetica, Arial, sans-serif" style="color: #232323;"><span style="caret-color: rgb(35, 35, 35);">This is something that we all think is wrong because carers are doing an unpaid job which they did not sign up for, neither were they given any training. Caring does not stop when the carers allowance stops, it carry’s on until the person with the illness either goes into a care home or dies.</span></span></div><div><br /></div><div><span face="Open Sans, Helvetica Neue, Helvetica, Arial, sans-serif" style="color: #232323;"><span style="caret-color: rgb(35, 35, 35);">Having said that, once you reach the age of 65 the carers allowance stops, so what is wrong with this Government, or any other Government who stops supporting carers at this age, apart from the obvious fact that they simply don’t care about anyone but themselves. </span></span></div><div><span face="Open Sans, Helvetica Neue, Helvetica, Arial, sans-serif" style="color: #232323;"><span style="caret-color: rgb(35, 35, 35);"><br /></span></span></div><div><span face="Open Sans, Helvetica Neue, Helvetica, Arial, sans-serif" style="color: #232323;"><span style="caret-color: rgb(35, 35, 35);">This also has a knock on effect with the Corona Virus vaccination where those who are not on allowances or benefits, do not get the vaccination until much later, yet we have to stay at home while they do the shopping. </span></span></div><div><span face="Open Sans, Helvetica Neue, Helvetica, Arial, sans-serif" style="color: #232323;"><span style="caret-color: rgb(35, 35, 35);"><br /></span></span></div><div><span face="Open Sans, Helvetica Neue, Helvetica, Arial, sans-serif" style="color: #232323;"><span style="caret-color: rgb(35, 35, 35);">It appears that family doctors are ignoring the carers over 65, because here again they don’t care less. But these people support us 24 hours of the day, and have to do their own shopping. Because we simply cannot rely on supermarkets delivering food which is well inside its sell by date.</span></span></div><div><span face="Open Sans, Helvetica Neue, Helvetica, Arial, sans-serif" style="color: #232323;"><span style="caret-color: rgb(35, 35, 35);"><br /></span></span></div><div><span face="Open Sans, Helvetica Neue, Helvetica, Arial, sans-serif" style="color: #232323;"><span style="caret-color: rgb(35, 35, 35);">I say this because, these shops send out food which is out of date or lasts two days before it’s out of date. This proves that these company’s in the U.K. simply don’t care about those who need to stay at home, as long as they get the money.</span></span></div><div><span face="Open Sans, Helvetica Neue, Helvetica, Arial, sans-serif" style="color: #232323;"><span style="caret-color: rgb(35, 35, 35);"><br /></span></span></div><div><span face="Open Sans, Helvetica Neue, Helvetica, Arial, sans-serif" style="color: #232323;"><span style="caret-color: rgb(35, 35, 35);">It’s amazing to think that these carers save this Government millions of pounds a year, yet they treat them with utter contempt </span></span></div><div><div><p style="-webkit-text-size-adjust: 100%; box-sizing: border-box; caret-color: rgb(35, 35, 35); color: #232323; font-family: "Open Sans", "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 16px; line-height: 1.5625rem; margin-bottom: 1.5625rem; text-size-adjust: 100%;">Carers are our rock, and without their constant support and care we would be in real trouble, and that would have extra costs all round. </p><p style="-webkit-text-size-adjust: 100%; box-sizing: border-box; caret-color: rgb(35, 35, 35); color: #232323; font-family: "Open Sans", "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 16px; line-height: 1.5625rem; margin-bottom: 1.5625rem; text-size-adjust: 100%;"><br /></p><p style="-webkit-text-size-adjust: 100%; box-sizing: border-box; caret-color: rgb(35, 35, 35); color: #232323; font-family: "Open Sans", "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 16px; line-height: 1.5625rem; margin-bottom: 1.5625rem; text-size-adjust: 100%;"><br /></p></div></div>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-11443243570757373902021-02-08T09:36:00.000+00:002021-02-08T09:36:01.621+00:00Repurposed drug enters clinical trials for Lewy Body dementia<div class="t-news__date-block" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; background-color: white; box-sizing: border-box; color: #000045; font-family: Nunito, sans-serif; font-size: 18px; outline: none !important; padding: 3.2em 0px; text-align: center;"><div class="b-container" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; margin-left: auto; margin-right: auto; max-width: 1050px; outline: none !important; padding-left: 0px; padding-right: 0px;"><div class="b-content-container__center-aligned" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; margin-left: auto; margin-right: auto; max-width: 38em; outline: none !important;"><div class="field field--name-field-date-created field--type-datetime field--label-hidden field__item" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; outline: none !important;"><span style="color: #01011c; font-size: 1.61111em; font-weight: 700;">Researchers in the US have launched a clinical trial to test a drug with the potential to slow the progression of</span><span style="color: #01011c; font-size: 1.61111em; font-weight: 700;"> </span><a href="https://www.parkinsons.org.uk/information-and-support/dementia" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; background-color: transparent; border-bottom: 1px solid rgb(0, 0, 69); box-sizing: border-box; color: #000045; font-size: 1.61111em; font-weight: 700; margin: 0px; outline: none !important; padding: 0px 0.2em; position: relative; text-decoration-line: none; transition: background-color 300ms ease-in-out 0s;">Lewy body dementia</a><span style="color: #01011c; font-size: 1.61111em; font-weight: 700;">.</span></div></div></div></div><div class="t-news__content" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; background-color: white; box-sizing: border-box; color: #01011c; font-family: Nunito, sans-serif; font-size: 18px; outline: none !important;"><div class="a-row " style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; outline: none !important; padding-bottom: 1.6em; padding-top: 1.6em;"><div class="m-slice-long-text m-slice-long-text__type-default" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; outline: none !important; padding-left: 0.8em; padding-right: 0.8em;"><div class="b-content-container" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; margin-left: auto; margin-right: auto; max-width: 38em; outline: none !important;"><div class="m-slice-long-text__inner" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; outline: none !important;"><div class="m-slice-long-text__content" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; outline: none !important;"><div class="a-wysiwyg-text a-wysiwyg-text__theme-white" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; outline: none !important; padding: 0.4em 0px;"><div class="b-content-container" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; margin-left: auto; margin-right: auto; max-width: 38em; outline: none !important;"><div class="a-wysiwyg-text__content" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; outline: none !important;"><div class="clearfix text-formatted field field--name-field-slice-text field--type-text-long field--label-hidden field__item" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; margin: 0px; outline: none !important;"><p style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; margin: 0px 0px 1em; max-width: 38em; outline: none !important;">The drug treatment, bosutinib, is currently used to treat a type of blood cancer called chronic myeloid leukaemia, but is now being <a href="https://medium.com/parkinsons-uk/trials-to-treatments-repurposed-drugs-ce76082e7330" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; background-color: transparent; border-bottom: 1px solid rgb(0, 0, 69); box-sizing: border-box; color: #000045; margin: 0px; outline: none !important; padding: 0px 0.2em; position: relative; text-decoration-line: none; transition: background-color 300ms ease-in-out 0s;">repurposed</a> in this new phase II, placebo-controlled trial. 30 people with Lewy body dementia will be recruited to the study, happening at Georgetown University Medical Center in Washington DC, US.</p><p style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; margin: 0px 0px 1em; max-width: 38em; outline: none !important;"></p><h2 style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; color: #000045; font-size: 2em; font-weight: normal; line-height: 1.3em; margin-bottom: 0.5em; margin-top: 0px; outline: none !important;">The connection between Lewy body dementia and Parkinson's</h2><p style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; margin: 0px 0px 1em; max-width: 38em; outline: none !important;">Lewy body dementia is the second most common type of dementia (after Alzheimer's) and is estimated to affect more than 100,000 people in the UK. As with Parkinson's, <a href="https://medium.com/parkinsons-uk/dementia-and-parkinsons-ask-the-expert-a1c836eebc9d" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; background-color: transparent; border-bottom: 1px solid rgb(0, 0, 69); box-sizing: border-box; color: #000045; margin: 0px; outline: none !important; padding: 0px 0.2em; position: relative; text-decoration-line: none; transition: background-color 300ms ease-in-out 0s;">Lewy body dementia is linked to the presence of Lewy bodies - small clumps of protein (mainly alpha-synuclein) </a>that form within brain cells.</p><p style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; margin: 0px 0px 1em; max-width: 38em; outline: none !important;">Lewy body dementia and Parkinson's share similar symptoms but differ in how common and severe these symptoms are. For example, people with Lewy body dementia don't always experience the motor symptoms associated with Parkinson's. But for both conditions, it's hoped that targeting alpha-synuclein clumping will help to slow, or maybe even stop, progression.</p><h2 style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; color: #000045; font-size: 2em; font-weight: normal; line-height: 1.3em; margin-bottom: 0.5em; margin-top: 0px; outline: none !important;">Potential benefits of cancer treatments</h2><p style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; margin: 0px 0px 1em; max-width: 38em; outline: none !important;">Certain cancer treatments have attracted interest in recent years. <a href="https://www.parkinsons.org.uk/news/phase-ii-clinical-trial-cancer-drug-announced" style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; background-color: #00adf0; border-bottom: 1px solid rgb(0, 0, 69); box-sizing: border-box; color: #000045; margin: 0px; outline: 0px; padding: 0px 0.2em; position: relative; text-decoration-line: none; transition: background-color 300ms ease-in-out 0s;">In 2017, the leukaemia drug, nilotinib, entered a year-long phase II trial in people with Parkinson's</a> after early research suggested it could reduce the levels of alpha-synuclein. And similar to nilotinib, bosutinib is believed to work by targeting the protein clumps that form in the brain, restoring dopamine levels, and reducing inflammation.</p><p style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; margin: 0px 0px 1em; max-width: 38em; outline: none !important;">Dr Lynn Duffy, Senior Scientific Copy Writer at Parkinson's UK said:</p><p style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; margin: 0px 0px 1em; max-width: 38em; outline: none !important;">"This new trial will be the first time that bosutinib has been tested in either Lewy body dementia or Parkinson's. The researchers will mainly be focusing on the safety of the drug, as well as looking at whether the treatment can change the levels of alpha-synuclein and dopamine in the blood and spinal fluid of the volunteers.</p><p style="-webkit-tap-highlight-color: rgba(255, 255, 255, 0) !important; box-sizing: border-box; margin: 0px; max-width: 38em; outline: none !important;">"There are currently no disease-modifying treatments available for these conditions. Trials such as this are vital if we are to find drugs that could help the many people across the world living with Lewy body dementia or Parkinson's. We'll be keeping a close eye on progress and reporting any developments."</p></div></div></div></div></div></div></div></div></div></div>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-15351374122748726822021-02-02T11:22:00.001+00:002021-02-02T11:22:28.425+00:00Learning to live with this virus<p> Thanks to Speech notes, for allowing my to do this blog.</p><p>It’s been very hard trying to change my life with this horrible virus, and it’s starting to get more difficult thanks to all of the idiots, who will not keep a safe distance from everyone else. The first lockdown made people think and be more caring about others, but this time round, it feels as if no one cares. </p><p>Seeing all of the reports of full hospitals through the virus and all of the deaths, I would have thought that people would have started to realise just how bad things have become, but it appears that many simply don’t care, it’s as if everyone else will catch the virus, “but not them”.</p><p>There is also a rise in illegal raves and party’s which involve hundreds of people, who simply don’t want to conform with regulation, but I think this is because we don’t have enough police in this country and the fines are far too low. The Isle of Man arrested people like this and put them in prison and now they are free of the virus, yet we seem unable to listen to the scientists here who wanted the borders closed, and longer lock downs,</p><p>I had my vaccination on Saturday, although my wife is not getting hers for a few weeks or so. It’s a start, but I guess it’s going to be the summer at least before we see any improvements to this horror we are living through.</p><p>However W have the most incompetent Government in the U.K., where they refused to close our borders thereby allowing people to bring the South African variant of the virus, ad this is now causing extra problems. We had enough problem when people in early twenty’s etc, decided to do there own thing and ignore the rules, so they were spreading the virus around the country. </p><p>We are also seeing a rise in people denying that there is a corona virus in this country, and a rise in hatred being spread by far right organisations.</p><p>I don’t understand anyone saying that the virus doesn’t exist, because there have been so many deaths through it. But I think this country turned nasty during the Brexit elections, with racism, and the nastiness has continued, so it’s carrying on with the virus. </p><p>It’s time for the Government to man up and change this country back to where it was 10 years ago, stop the racist people from causing problems etc, then we might all get our lives back again.</p>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0tag:blogger.com,1999:blog-7641598836349280199.post-21290488109219276952021-01-25T13:20:00.002+00:002021-01-25T13:20:56.584+00:00Trying to control my emmosions<p> I have noticed over the last year or more, that I am becoming more bad tempered, perhaps some would say moody. </p><p>This is happening more and more, and I am terrified of becoming violent in the process. Even my daughter has picked this up over the telephone, and I am getting to the stage where I am frightened of upsetting her, or anyone else. </p><p>So much so that I told my wife that I don’t want to be involved with telephone calls any more, in case I say something which will cause trouble. </p><p>This has been going on long before this virus, and usually happened when a chest infection was brewing, but I just don’t understand why it’s happening now. I think my wife is frightened to tell the doctors, in case I get put in a care home etc. </p><p>While I can understand this, I think I would just give up if I was in a care home, because it’s not in my own zone. </p><p>I think a lot of this is caused by the restrictions caused by COVID, and the fact that out local park is overrun by people driving here from other places, so they can run etc, but they are not keeping their distance from others. </p><p>Coupled with this I am struggling to cope with a face mask, and struggle to understand what people are saying when they are wearing a mask. Along with this I cannot wear my hearing aids, because when I remove my mask it brings my hearing aids out, as well as my glasses.</p><p>Perhaps to many people this is nothing, but when your brain does it’s own thing, life becomes very difficult, I guess because we are out of our comfort zone.</p><p>I have also been struggling with bowel problems since early October, and this is causing extra stress going to the toilet 4-5 times a day, and sometimes during the night, not knowing if I will get there in time.</p><p>I am having tests, but found that since i came off dairy products life has become more bearable. However the consultant seems to have other ideas, and unlike our doctor who seems pleased that we have worked something out, I feel the consultant will be less forgiving. </p><p>Only time will tell</p><p><br /></p><p><br /></p>Living well with Lewy Body dementia/Parkinsons and Comorbiditieshttp://www.blogger.com/profile/06521672291947694295noreply@blogger.com0