Wednesday, 26 March 2014

People with dementia and Research Projects



The last 10 years of my life are a complete blur, which is horrifying, because vast chunks are missing, gone forever.



I have tried to recreate this page from diaries and notes on my blog, as most of the information is no longer in my memory



I was diagnosed as having early onset Lewy Body Dementia at the age of 56, something which came as quite a shock, both to myself and my wife and family



I had been a University College Engineer for 28 years, working on Electrical equipment, while also doing two large budgets, running the health and safety side of the department, along with all maintenance estimates



When this illness started I thought I was simply going mad, because nothing made sense at all.

I lost the ability to understand which electrical cables were which, and the colours made no sense.



This was horrifying, and then I lost the ability to understand my estimates.



I tried in desperation to go over my last electrical examination papers, but it seemed as if it was all in a foreign language and simply did not make any sense at all. This let me at times to sit and cry my eyes out, simply because it made no sense at all.



Our local GP was happy to say that I was simply depressed, something that I knew was wrong, and this was proved later by the University medical department



At this time I don't think I was the easiest person to work with or for, and people had complained that I was becoming moody, something which the doctor later explained.



She said that as I was losing control, and unable to fathom my life out, others were beginning to think that I was taking it out on them



My family life was also in a mess as my wife and the two Children could not understand what was happening. I was not their Dad or Husband, no longer the person they had lived with for so long



Then the diagnosis came and I lost my job, and that was the end of something I had enjoyed doing for 28 years.



After my diagnosis I was a volunteer with the Alzheimer's Society in County Durham, and from here I became a media spokesman for them in the Local and National Press.



I don't really remember how it happened as it’s all a blur, but I believe that I was invited to speak at a DeNDRoN conference in Newcastle, and later on we met Terry McGrath, and then my wife and I then got involved as PPI members.



After this I decided that I was going to get involved in research if I could, so that I could help those who follow in the future



I am still struggling and feel lost at times, when I don't understand what I am reading, or don't understand the words on bad days. Even worse now I am struggling to cope with the computer.

I can no longer write properly with a pen, so the computer is handy for writing things like my blog and presentations.



But I am also now struggling with my grammar and spelling, and that is awful to me as I was always very proud of being able to spell correctly and very proud of my standard of grammar.

If I lose this I will just have to give up the blog and other things I enjoy so much, but I am desperate to carry on doing something, whether that is giving more presentations written by my wife and I.

I simply don't know.



I admit that I enjoy this, and it would be sad if it stopped, as I always hoped to give a presentation abroad before I stopped all together, but I now think this is impossible because of the cost of travel insurance, but it's not the end of the world.



But that's life and I now have to accept whatever comes my way whether I like it or not



The rest as they say is history, although it does not feel like my own.



However being part of the DeNDRoN Patient Public Involvement scheme, I do feel the people with dementia, should try to get involved with research projects. It may not be doing trials in medication etc., but can involve looking at research papers to see if the project is worth doing. In this we work with professionals who assist us and explain any problems we may have



There is a need for everyone who has any form of dementia, and who can so, to get involved in research. I say this because without research we will never find the answers to all of the problems we see in Dementia today.



We cannot hope to get good quality research, unless we the people with the illness help, it may well not help us in the long run, but it will help others who follow us in the future and that is very important



We need to explain the problems we struggle with on a daily basis, so that these people can know what to look for.



By helping the researchers we are helping ourselves, and gaining a sense of achievement in doing this

I have been a member of DeNDRoNs, Patient Public Involvement panel for a few years and can honestly say that I have enjoyed it. As well as being involved in research we also spend time looking at future research projects.



There are many research projects into Neurological illness and most are run by DeNDRoN, The Dementias and Neurodegenerative Diseases Research Network, which is UK based although my own research was done by the North East Regional network.



DeNDRoN have regional newsletter which can be read at the following address.



www.dendron.nihr.ac.uk.northeast



Please consider the fact that this research is very important to all, as you are helping others who follow us in the future



Have a look at what we are doing and if you are interested, and live near one of our centres, then why not register with us.



It’s not all work it’s very interesting and you meet new friends





If you are thinking about it, THEN GO FOR IT



DeNDRoN NEEDS YOU

 

REM sleep disorder and acting out dreams

REM sleep disorder causes people to act out their dreams Researchers have a non-invasive diagnostic tool called a liquid biop...