Thursday, 16 September 2021

Quiet Life

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

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

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

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

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

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

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

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

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

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

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


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

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

Tuesday, 24 August 2021

Research into Lewy Body

 Research summary report: 

Multimodal Imaging in Lewy Body Disorders

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

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

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

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

Overall progress towards the goal of the award and key achievements

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

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

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

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

Issues that have limited the progress

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

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

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

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

(Date 27 May 2021)

Li Su, PhD

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


Quiet Life

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