After giving it a lot of thought over the last few months, I have decided to finally stop writing this blog now This is for a few reasons, but first and foremost I am struggling to put my thoughts into writing,  without saying the wrong thing and sounding rude or aggressive. I know I am getting very tired these days, and struggling to think clearly, but I guess this is a build up of medical problems  which are starting to make life very difficult.  However I was starting to  think of closing the blog down in January and then in June,  because of my problems of putti ..read more

Over the years technology has changed how we live, and as someone who was late in joining this type of thing,  I struggle to cope in ways I would never have considered. Being an engineer I got my first mobile phone and computer in the 1990s, and was forced into a life that, I found very hard to do without formal without training or support in computers. The mobile was used as I was on call as an engineer 24 hours a day, and the MS-DOS computer  was to help me do my reports and estimating, etc through the working day.  This was a far cry from today’s computers, and a lot slo ..read more

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 resto ..read more

 Research summary report:  Multimodal Imaging in Lewy Body Disorders July 19, 2021 We have received the following report from the University of Cambridge, which summarises the progress made following the award of a Lewy Body Society grant in 2015. There are some very positive outcomes, such as an improved understanding of imaging biomarkers in people living with Lewy body dementia, the recruitment of people living with LBD to take part in other studies, and supporting the career development of researchers who are focused on LBD research.  This will hopefully support furthe ..read more

 Lord help me with this illness I want to be as I was, but cannot turn the clock back To understand what is happening to me, To a time when I was in control over what I did and said I know I have dementia and my life has changed I feel that I am not in control of my life anymore Nor am I am the same person, that I was before I cannot do the things that I did before, or they are more difficult to do, I do not sleep as I did before and feel refreshed My dreams are not happy but things of terror from which there is no escape I am not the same father or husband and that is sad I may have done ..read more

 As a person with a form of Lewy Body Dementia, I often see things which may or may not be there, and this can be very hard to understand let alone explain. Sometimes when I am at home I see huge spiders, running across the floor, at first this was upsetting, and I would lash out with a shoe or slipper, but my coordination is not that brilliant, so I had to stop before I did some damage to the television or something else. When this started we had a dog which used to lie near my feet, so I learnt to tell if they were real or not, because if he saw a spider he would chase it, But my wife t ..read more

Dental treatment in dementia Recently I got involved in research into what dental treatment people  want after a diagnosis of dementia, something I confess I had never considered  Over the years I have had some terrible treatment from dentists, and ended up having teeth removed rather than having fillings, after which I completely lost faith in all dentists, as did my daughter who had the same problems. However over the last few years I have had a couple of very good dentists, one of whom moved away, then our dentists practice closed down after the owner had a serious accident and ..read more

 I got involved with research into sleep problems in dementia recently,  thinking that it may involve Lewy body dementia too. However it soon became clear that those asking the questions had no idea about what they were dealing with, and it seemed as if the whole process was set up for those in the later stages of Dementia. Yet in Lewy body Dementia you are dealing with a different life style as far as sleep patterns go, and a lot of people simply don’t understand this. A few years ago Peter Ashley an old friend and myself, who at the time were both Ambassadors with the Alzheimer’s S ..read more

 I hear that supermarkets are thinking of doing away with staffed checkouts, and replacing them with automatic checkouts where a machine checks everything for you. What happened to the good old days when you could ask a member of staff about the products, or just have a general chat. I think this is going to hit the elderly, the less abled or people with mental health issues, who possibly need someone to talk to when they get stuck and need support, either in finding or paying for something. I find that this is yet another obstacle in the way of these people, as we already have a push to ..read more

 Over the last year or so, I have had major bowel problems which can lead to me rushing to the toilet at anytime day or night, and sometimes I was too close for comfort. I have had Irritable bowel syndrome and diverticulitis for years now, but this was an added unwanted problem, which meant I was going to the toilet 5 times a day at least, and losing weight.  I guess I was classed as over weight anyway, so I needed to lose some according to the Body mass indicator and one of my doctors, who did not recognise the fact that a bloated stomach did  not necessarily mean I was over we ..read more