Hello, well it’s been just over three years since I was diagnosed with this awful disease and if I am very honest it doesn’t get any easier. When I was first diagnosed I started to research it, and the general opinion was it takes (Very roughly) between eight and twelve years before the end arrives. I am now three years in and on that count I should have between six to nine years left.
Now that may seem an age to some but when you consider its only a blink of an eye to me, since I was diagnosed, it`s not that long at all. And please let’s not forget this is a terminal disease, even though I have yet to hear it described that way by the NHS which has always puzzled me and always will!!!
So, here I am three years down the line and wondering what’s coming next. I have been through the stages of throwing my toys out of the pram and shouting why me and I have also hovered on the edge of the precipice regarding middle to late stage dementia before I was very luckily prescribed Ebixa which brought me back from the brink. But I really believe that being on that brink and hearing from my “ANGEL” Elaine what my behaviour was like has made me who I am today.
It’s like being given a second chance of life and one I don’t intend to waste!!! People often ask me what drives me and lights my passion about raising awareness so much, and apart from the obvious answer my wife and family, it’s because I firmly believe I am back from the “Brink” to make a difference and by doing what I do I will hopefully not only help people at the moment but people in the future.
But as I always make perfectly clear. My tablets Ebixa is NOT A CURE!!! It’s just staves off the inevitable unless they find a cure, and please don’t think I am capable of living a normal life at the moment because I am most certainly not. My tablets are good, but not that good!!LOL
I cannot tie my shoelaces anymore; I cannot fix a tie or put my belt on. I seem to miss my mouth when eating quite a lot. I have some trouble holding my knife and fork and especially in the right hands. I only realised yesterday that I had forgotten how to photocopy, and for the first time today no matter how hard I tried I couldn’t remember my great grandson’s name. I am absolutely devastated at that and hope and pray it was just a blip.
When I am in front of the camera’s or at the memory cafe I seem like the most confident person you have ever met, but when the “FOG” comes down in front of my eyes I am just a frightened little boy who is petrified of the future. When I am sat at home, staring into space in a Catatonic trance and my mind is imagining allsorts its takes such great strength from Elaine to bring me back to the land of the living.
And at night times which are always the worst and I have started to dread, is when I am screaming out in sheer terror and thrashing about as if the devil himself is in the bedroom with me!! As I sit there with head in hands in the darkness, bewildered not knowing exactly where I am, trying to make sense of everything as Elaine puts her comforting arms around me and tries to calm me down,
THIS IS THE SIDE OF DEMENTIA PEOPLE NEVER SEE!!
This is what my friends and most of my family don’t see and this is what I have to carry around with me every day of my life, this is what I call “HIDDEN DEMENTIA”
This is the side of this EVIL disease that most close families/ carers and loved ones have to put up with every single day and yet to the general public most of the time all seems well. Without a doubt this is the most conniving, deceitful and underhand disease that exists and I really do think that people should know what they don’t see.
I really hope you don’t mind me sharing this with all of you but I think it’s so important not to ignore the true facts of this terrible disease and to make sure that sometimes, even though all seems well on the surface, somewhere deep in my mind lurks the most evil disease that mankind has ever seen just waiting it’s time to take over me completely and win the war that’s going on between us.
BUT GUESS WHAT!!!!!
IT’S NOT GOING TOO!!!!!!
Best wishes, Norrms, Elaine “MY ANGEL” and family xxxxxxxxxx