A couple of months ago I wrote this article, and have decided to revisit it because it has caused so much upset by its misuse by the press.
I like everyone else with this illness read press articles and assume that they are correct, but its only later that the truth comes out
However from what I understand it was a piece of research to see whether it was feasible and in fact cost effective to do dementia screening and what the implications would be.
I read this article and wondered what the Doctor was trying to say, and I confess that at the time, I thought that he was wrong to say it.
But on refection, I am not sure whether this is all factual or whether its all down to the press writing their own version of events.
I am more inclined to wait to see what the Research Doctor has said, rather than believe the press, because as we all know the press always write things to suite themselves, true or not.
In many cases a dramatic headline does a lot of damage, especially when its been taken out of context
But as someone with Lewy Body Dementia, I know that we may all show signs of dementia in one form or another when we get diagnosed , but as I understand it there are many illness which mimic the illness, and until we get further into it we don't really know whether our diagnosis was right first time.
I think I understand that many people have been diagnosed at an early stage, and this could lead to accusation's of misdiagnosis, if it was done in a hurry as screening could be.
I say that because cancer screening is not perfect, as we are always hearing of problems in the news.
When we consider that there are going to be many thousands more being diagnosed in the future, in fact the facts state the figures will rocket over the next few years, so we need to look for better ways of finding cures etc.
I have had two diagnosis-es of Lew Body dementia, but to be honest I am not convinced, I know that there is something very wrong, and get very agitated when I cannot do the things that I have done for many years, and I can not always remember what I am trying to write or say
My life is not what it used to be and things change on a weekly basis.
But as one consultant said, the only way to make sure is at the point of death, when the brain can be removed and looked at.
I found out later that this had been totally fabricated by the press to publish the wrong information.
But in all honesty, until we get a better way of treating the illness, what is the point of screening people in the masses as it only prolongs the agony, and not everyone can cope with the diagnosis of dementia.
But we all need more research of one form or another, so that those following in the future have a much better chance of survival and if possible a cure.
Many people can not cope with the results of the diagnosis and many simply don't want to know, whether because they are frightened of the term dementia, or they simply refuse to accept that their is anything wrong with them.
But whether we like it or not research has a big part to play in dementia, and we must do all we can to play our parts in this as people with dementia.
Its only my opinion and I may well be wrong myself, but I live in hope that a new treatment may come soon for those who follow behind, but I know that without the researchers doing their job like this, we will never get anywhere.
I know that eventually screening for dementia will be quite common, and we will look back and wonder what all of the fuss was about in the first place, so lets all get behind the research people and give them all the help we can, whether the press like it or not.
We owe it to those who are coming behind us in the future.