I am proud to be an Ambassador and Dementia Advocate with the Lewy Body Society .
I was diagnosed as having Early Onset Lewy Body Dementia, and I am now learning to live a new life doing things to help others with the illness.
I am also honoured to be a member of Dementia Alliance International.
In my spare time I try to hang on my photography hobby, which works on the good days.
Diagnosis of Dementia
Diagnosis of dementia like many other illnesses, can be a very traumatic experience, for anyone to cope with, and if there is no support afterwards, life can become very difficult, and that is why I am so pleased the things have moved on.
Many people find, that after the diagnosis they are left to fend for themselves, and must fight for support, not just at the consultation, but also in their community, and that is very wrong in this modern society.
So much depends on the consultant, and how much information they discuss with you, because many people are given their diagnosis, and are then left to find her own way, including finding out more about illness and how to cope with it.
Its usually well after seeing the consultant that the questions arise, by which time it's too late to get help.
This leads to more problems, if you go onto the internet, you are told different things on different websites, many of which are not kept up to date, and you are then left wondering who or what to believe.
Some people use social media to keep up to date with certain illnesses, but like Lewy Body Dementia, there are no UK based groups, as most are American, and their health and social care systems are different
After my 2nd diagnosis in County Durham, my new consultant told us about the illness, " Lewy Body Dementia ", along with the medication, and then told told us to go to the nearest Alzheimer's Society branch, where we could get extra support and advice needed to carry on with life.
The consultant also gave me this piece of advice, (You either Use it, or Lose it), meaning that by remaining active, it helps to keep the brain active.
I was also told to write my life story, as a way of remaining active.
It was recommended that I started at the diagnosis, and then worked back over, as and when memories came back, now this practice is widespread.
However as with all things, a diagnosis of dementia is a postcode lottery, and not everyone has the benefit of a good consultant, coupled with good support services.
I do feel that services are being stretched these days due to financial cuts, are too many local authorities and charities are not providing the services for people with dementia, like the services we used to see.
Many simply run a service which is broad based, thinking that one topic covers everyone, but no matter what you do, you can never help people to remain active by using this method, because we all expect different things.
Some people like singing while others don't like to sing. Some people like Dementia Cafes while others don't, because they find them to be overwhelming.
Coupled with this, there are so many variations of dementia, and people with one type of dementia, may feel more at home in a different group.
Like people with Lewy Body Dementia sometimes attend a Parkinson's Group, because the illnesses are similar, and they run different services
As I said, we are all so very different, and want to do different things with our time
A common myth in dementia, is that if you've seen one person with this, you then you know and understand everything there is to know about it, but just how long can this be, because we are all individuals with different problems and symptoms
Having said that, I found that the Church of England did little in our area to help people with dementia, and this was very hard for me to accept, having attended church on a regular basis all of my life.
It was as if those with dementia were a hindrance, something I find disgusting and hard to accept.
I think that we must encourage people to do everything they can to remain active, whether that means joining groups, where you can discuss your problems with others in the same position, of finding other activities which help you to remain active
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