This is apparently something which happens quite often especially at conferences or meetings, usually well away from other people, who would fight back on our behalf.
Like many others, I have heard people say that I don't look or act like a person with this illness, and yet what are we supposed to look like.
Do these people want me to wear a tattoo on my brow saying I have the illness?
When I have been out shopping with my wife, people have often asked her how I am, leading my wife to answer, "ask him yourself" he is there in front of you, and he can speak.
This is simply because of the common mis conception, that once you have any form of dementia, you are unable to play an active role in society, and can no longer speak.
Many people still think of dementia being age related, something we know is very wrong, as there are well over 16-000 people who have the illness under the age of 65.
Some of this is caused by charities, who still show photographs of elderly people and very few, if any younger people
Another comment I have had throw at me, after explaining that I have Lewy body dementia is this.
What in earth is that, and how did you catch it?
This is all down to lack of education.
People think that there is only one form of dementia and that is senile dementia , while others think that Alzheimer's is nothing to do with dementia.
People still assume that people with dementia are all the same, yet here again we know that this is far from right. A common remark is, you have seen one person with dementia, you know it all as we are all the same.
There may well be around 10 types of dementia, but within that there are well over 120 variations, so no two people are the same. We are all individuals on individual journeys with vastly different symptoms and problems.
One thing hurled at people with dementia is, you cannot have this illness because you should have deterriated by now.
Here again they think we are all the same and should have deterriated, very soon after the diagnosis.
The answer to this is quite simply. Many of us were told to fight to remain active after the diagnosis, both bodily and brain wise.
As a consultant once told me. You either use it or you lose it.
That has kept me going, as I spend most nights doing games to keep myself active, even after I have been active at home. As my wife often says, I never sit still very long.
Yes I have lost the ability to do many things since my diagnosis, but if I lose one thing I try something else.
Losing control over your life is not nice but we have to fight on if only for our loved ones.
It's now time to stop these horrible remarks and start to educate people, and prove these people wrong