Posts

Bad nights return again

 After a light dose of medication, the nightly horrors of graphic nightmares  I struggled with for a few years,   seemed to stop, and I thought that I had got rid of them. But these things have returned again, and it's becoming stressful. These started a few years ago when I was diagnosed as having a form of Lewy Body Dementia / Parkinsonism.  The problem being that you act these graphic nightmares out, and can remember them in great detail during the next day. Nurses 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. As 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. 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

Processing Information in Dementia

 Life can be very difficult at times when you are trying to process or understand what is happening around you. I stopped going to meetings etc, because it took so long to understand and process, what was being said, and by the time I understood what had been said, it was too late to answer. The same thing happens when I'm outside and I meet friends or colleagues, and sometimes misunderstand what they have said. This can be embarrassing or can cause problems, because they may think that I am being rude. Many friends and colleagues accept that I have an illness, and take me as I am, and if I make a mistake, they don't take offense, but not everyone is as understanding these days, and far too many take it the wrong way without thinking or taking onboard my problems. This is not intended, it's just a fact of life these days, and although upsetting, I have to accept it and move, on hoping that they understood my problem. However it's not just the sp

Dementia and our spiritual needs

  Dementia and the spiritual needs of the person with the illness When I was first approached to do this talk, I had looked at the title quite a few times, as it is a subject which to me is very difficult to put into words, especially when you are living with dementia. For inspiration I  looked on the internet to try to get some answers to a subject which, in some cases causes a lot of upset. However I must point out that this is my own version of what this topic means, and it should never be assumed that everyone else is the same. There are over 120 variations of this illness, and no two people are the same. We are all individuals, on individual journeys, and therefore each person’s spirituality is totally different. But here we go and I hope I get it right. Spirituality, leads to a purpose in life, in the things we value, and what is more, gives us all “Hope” as without it we would be lost It’s not tied to any religious belief or tradition, although culture and beliefs can play a par

REM and sleep disorders

Sleep disorder linked to Parkinson's Thursday 29 July 2010 “Kicking and lashing out while asleep could mean you’re more likely to develop dementia or Parkinson’s disease,” reported the  Daily Mail  . It said a study has found a link between a sleep disorder and a higher risk of certain types of dementia up to 50 years later. The study looked at people diagnosed with one of several related neurological conditions and analysed their history of a severe form of REM sleep behaviour disorder (RBD), a condition in which people can act out recurrent dreams and move excessively while asleep. The study was not designed to look at the strength of the link between RBD and dementias, as patients in the study were selected because they were known to have had both of these conditions. Therefore, it is not possible to say from this study whether restless sleep is a predictor of future dementia as is implied in the newspaper headline. More research into whether RBD could be an early sign of the br

Difficult times

Trying to stay positive through this virus has been very hard, even though i have my wife  to look after me. I know that I  have hit the bottom  a few times, and its not easy trying to cope.  I guess its because I feel like a caged bird and don't know how to cope  with everything that's going on around me, because its all so very different, so its not in my comfort zone.  But having said that, the government  keep changing the rules every week, and no one seems to understand what they are doing. I do think that people with dementia are being ignored and left to find their own way, which is totally different to the  last session. When we last had quarantine quide lines where everyone knew what they were allowed to do , and what not to do, it was so different, but slightly helpful.  People living with any form of dementia, have no guide book to work from, so when your brain does its own thing, and  its a case of trial and error. As I have said before, I feel as if I am no longer

Not in control

Over the last few months I confess I have not felt myself, I do feel as if someone else is controlling my brain and life.  It's a bit frightening, but I have been to some dark places recently, and have struggled to sort myself out.  My wife thinks the virus has made everyone feel a bit depressed these days and it's this making things worse. Whether it is true or not, I just don't understand, but these days I feel totally on edge and not in control of my life.  I know that wearing a face mask is causing a lot of upset, as I get my glasses and hearing aids tangled up, but also to my brain i guess the mask is something which should not be there.  I feel more confused and struggling to cope, especially when it comes to wearing a face mask when I go out, and this is causing more stress, but I guess I have have to accept this and move on although it's not easy.  However one of the most difficult things, is trying to work out and remember what the date and day are, as it's

Problems thinking

Over the last months  I confess that l am struggling to get my brain into gear, but I think since my last chest infection dragged on a long time, its hit me harder. This can lead to many different problems, from trying to understand clearly what is happening and what is being  Covid has become a nightmare to me due to my memory problems and walking etc. My foot drop is getting worse these days, and I am starting to find walking a bit if a problem although I try to push myself too far.  As well as this wearing a face mask has also become a nightmare, as my brain is telling me its a foreign object which must be go rid of. This in turn is adding breathing problems with me bilateral bronchiectasis and Emphysema.  I tried to go out without the mask but got so much abuse I had to try to wear it again.  These days of having to wear a mask is causing extra problems for me and I guess many others too.  When I remove my mask usually end up removing my glasses and hearing aids too, as they have a