Well, I am just entering my sixth year after being diagnosed with Dementia and as you know the average years of expectancy is around twelve so I have made it to the half way mark at least!! As you know I hate the word “Journey” so I won’t say that, but what I will say is I am so pleased I have seen the way things have changed in the last six years and changed for the better. Please make no mistake my friends, these are exciting times within the Dementia world and they continue to get better and will do with your/our help, which brings me onto my next point.
When I was first diagnosed I was diagnosed with Alzheimer’s Type Disease and it wasn’t until a couple of years ago I was re diagnosed with Lewy Body`s Type dementia (hence why my three books have the word “Alzheimer’s” in the title but please don’t let that stop you purchasing them, proceeds will go to this year’s dementia charity
So, how did this re diagnosis come about? It was all because I was becoming increasingly worse and beginning to hallucinate and hear things, as well as the night terrors becoming nightly!! We went to our local memory clinic and I was reassessed. A different set of questions were asked and I was so lucky in the fact that the new consultant here in Torquay was a leader in Lewy Body’s Disease. Because of the new diagnosis my medication was added to, and things started to settle down, and still are, to a certain degree. There again, if you asked Elaine my wife, my “Angel” and full time carer she says I have been getting steadily worse over the last few months!
The most worrying thing that came out of this was I found out that some of the Anti Psychotics (I am so against most of these I might add) that are given to people with dementia can actually be VERY HARMFUL to those with Lewy Body’s type Dementia!!! So my question is this?
“How many more people have been Miss diagnosed with Alzheimer’s when it’s actually Lewy Body’s Type dementia? And how many people are being given these Anti Psychotics when they could become so harmful??”
I have spoken to so many people who have a diagnosis of Alzheimer’s but also show a lot of symptoms I myself show? I know the truth of the matter is you cannot be 100% certain of any Dementia unless its looked at via Autopsy, which is too late then, but I do believe more that stringent tests would go such a long way into helping so many people. A different approach needs to be taken by those in the medical field. Sometimes (Not always) it’s just TOO easy for Drs and consultants to generalize the Disease and class most of it as Alzheimer’s when it may be the opposite? You would be so surprised how many people still think that Dementia and Alzheimer’s are different Diseases!!
As for myself, if one can feel “Lucky” with this terminal illness, I do, because I was diagnosed quite quickly and then re diagnosed whilst I still have the ability to understand most things. Some are not so lucky! So please, if you have any doubts what so ever about the diagnosis you or a person you know has had, please ask for a second opinion, it could make ALL the difference between to the person who might have this awful disease, and with the right medication the quality of life could be improved so much.
As for me, fingers crossed I am still writing things like this and much more in Six years to come!!
Best wishes, Norrms and family xxxxxxxxxxxxxxxx
