As an Ambassador for the Lewy Body Dementia Society, I will be going back next week to Northumbria University to talk to Graduate Nurses.
It's been a while since I did this due to recurring chest infections and problems with diagnosis, but now that things are sorted out again, it will be good to start again, however I am not sure how long it will last.
I realised that last time I was giving a talk, that I was struggling to breathe so it's going to be a case of waiting and see.
The reason for the talks, is to get these graduate nurses to understand that people with dementia are normal people, it's just our brains don't always work the way they used to do.
Yes we have our own individual problems, and sometimes get agitated when we are unsure of what is happening, or when we are out of our comfort zone.
But if we are treated with respect, we usually get along well.
I always say that everyone should treat others with the same respect, that they would expect from others around them, and nothing less.
Respect costs nothing, and it's something many of us grew up with, and therefore we expect it from others.
Nurses like everyone else in the medical profession get very little training in dementia, so this is one way of explaining things to them over the one hour sessions.
Yes there are many negatives about this illness, as with other illnesses, but I don't always go there, because it gets distressing thinking of all of the things I have lost, like my job, and hobbies which have become too dangerous to do.
I prefer to talk about how we all want to live as well as possible, with this horrible illness.
Health professionals have very busy lives these days, so if they get an understanding of this and other illnesses, it may well help them in the future
One thing they must understand is, that not everyone with dementia is the same.
There are over 300 variations of dementia, and therefore no two people are the same.
We are all individuals with , individual problems and symptoms.
However this is a chance for me to explain about my Lewy Body Dementia Diagnosis.
Because Lewy Body Dementia is totally different from other types of Dementia, due to the fact that people sometimes have hallucinations.
We also have very graphic nightmares, which can be acted out, making it difficult at times to separate the nightmares from reality.
Many of us have other problems too, and this has to be remembered. I have balance problems, along with Chronic Lung problems, and this has a knock on effect on our lives.
Dementia is not easy to diagnose, but the same goes for other illnesses.
When I consider that I was ill with chest problems as a child, but it's taken up till last year, to find out why I was having recurring chest infections.
Over the years it was simply put down as working in industry or asthma, then they find out its much worse.
I guess the same goes with dementia, because many doctors use different terms or names for an illness, and that in turn causes confusion and stress to us and our families
Many people assume that once you get a diagnosis of dementia, your days are numbered,
However, it's a well known fact that there are many people around the world, who have been living with the illness for over 20 years after their diagnosis
It all, depends on the type and treatment given, along with the support you are given by the consultants
So don't think that because you have seen one person with this illness, that we are all the same, because that is totally wrong