Hello my name is Norrms Mc Namara and eight years ago at age just 50 yrs old I was diagnosed with the Alzheimer’s type of dementia. I didn’t think it could get any worse than this, after all what’s worse than receiving a diagnosis of what’s considered a terminal disease as there is no cure?
“Being told four years later that you don’t have Alzheimer’s, but you actually have the Lewy Body’s Type dementia “That’s what!”
Being told you have dementia a second time is no easier, in fact it’s even worse in some parts as you have to relive all the emotions all over again. When I was first diagnosed with dementia (Alzheimer’s) I thought I would learn as much about it as I could, well, you don’t go to war without knowing your enemy do you?? Four years later I had to do the same thing all over again, but what became so very clear was that so many people had never even heard of Lewy Body’s Type dementia.
June Brown “AKA” Dot Cotton whose husband also had Lewy body’s described it like this..
“Having Lewy Body’s Type Dementia is like having two disease`s. You HAVE dementia, but you also KNOW you have dementia”
This is because most of the time, especially in early stages, you are quite lucid most of the time and even later on there will be times when you are still lucid and yet you have absolutely no control over your actions sometimes, can you begin to imaging how terrifying that is??.
One of the most frightening things I have found out along the way is how many people I have spoken to who have exactly the same diagnosis as myself, and yet have been
diagnosed with the Alzheimer’s type. I truly believe this will all come out eventually and the true figures will be revealed. It’s also a matter of seriousness as well as Anti-Psychotic drugs, given to those who are diagnosed with Alzheimer’s but who actually have Lewy Body`s can be catastrophic in the extreme, so how did my story unfold four years ago?
I could feel my life ebbing away and I fell into a well of depression and self-doubt, I had always been an outgoing, half full type of person so with the help of family and friends we decided to do something about the lack of awareness, not only of this disease, but of all types of dementia, and so the Global Purple Angel dementia awareness campaign was born less than THREE years ago
In the last 3 years we have managed to recruit over 600 Purple Angel ambassadors worldwide and are now established in over 42 Countries Globally!! The thing is, every one of us, including myself, are volunteers and do not get paid a penny for all we do, so what do we do?
We create Purple Angel dementia friendly communities all over the world, and in fact, in the USA we have created Purple Angel Cities, where whole cities come together
and make sure those with dementia and their carers/loved ones live a better quality of life. We have opened “memory cafes all over the world, these are memory cafes with a difference because you do not have to have a diagnosis to attend. We open our doors to anybody, at any age to those who have memory problems and those who drop in just for a little information as well as tea and biscuit’s which are of course ALL FREE including the entrance!! And so much more, please take a look at our website above.
My point is dear friends there can be such a good life after diagnosis, even after TWO diagnoses!! If only you catch this disease early enough, it’s what I have called recognising the “Critical Chain Of events” and by that, I mean noticing subtle differences in people’s behaviour. Dementia is not all about memory loss