I am honored to be a recipient of messages from Norm McNamara, a man that I have never met but whose messages from Britain I anxiously await each morning. He is one of the great Alzheimer's missionaries who, once diagnosed, embarked on a quest to find a cure for himself and all the victims of this and future generations. In his most recent message he tells what it feels like to be bombarded by grandchildren's questions, the chaos of a home filled with family on holidays, the fear of losing precious memories and the blessed understanding of his wife and caregiver. Please share this with anyone who you believe might benefit.
Message from Norm McNamara: "I wrote this on Boxing day and i hope it goes some little way of explaining how someone with the diagnosis of Early onset Alzheimers feels on such special days, hope it helps, best wishes, Norrms and family xxxxxxxxxxx
Alzheimer`s On Christmas Day
I have nine grandchildren, two of which live in Australia, one who still lives in the north of England, and six who were in the same front room as me on Christmas day. Can you imagine how hard it is sitting there watching your grandchildren, both young and old run riot, when you know that there is such a good chance you are going to forget all of these happy faces? I have absolutely no memory of last Christmas so being sat there wondering how long it would be before I forget this one was one of the most emotional times I have ever sat through.
The sheer enormity of the situation runs through your bones like shockwaves!! I sat there, trying to smile through complete anguish whilst trying to answer a million questions at once from my darling little ones. It was grandad this? Grandad that? And I have trouble keeping up at the best of times!!LOLL but through all this, all I saw was their smiles and their hopes in their eyes, I could almost feel their future mapping out in front of them, so much to look forward too, so much to do and so much to SAY!!!LOLL
Just then, a hand slipped into mine and when I turned it was my “Angel” Elaine who always seemed to know when I was struggling a little bit. She gently squeezed my hand and smiled at me just at the point where I thought I was going to collapse into a heap, sobbing and upset. I smiled back and nodded at her, saying in my small way I had just caught up with myself and was ok for the time being. Elaine is my tower of strength and without her and my family I wouldn’t have the courage to do what I do now.
When you have been diagnosed with Dementia/Alzheimer’s you don’t think about Christmases, weddings, births ECT, in fact you don’t think about much at first because your mind is in such turmoil. Being diagnosed with early onset and knowing you have it can be a curse as well as a blessing. The blessing is that you can spend precious time with your loved ones and your friends, you can cherish every moment of the day, and in my case I can continue to raise awareness to this awful disease and hopefully be around when the stigma that goes with it is totally eradicated and a cure found.
The curse is knowing you have it, which is sometime`s just as bad as having Alzheimer’s. Along my travels in life I have met someone who had a brain tumour and survived. I have met a few who have been diagnosed with Cancer and now look the picture of health. I myself 16 months ago had to have an operation for a serious Hernia which had its complications. The surgeon told my wife Elaine and me just before I went to the operating table that I had less than a 10% chance of survival because of my heart problems so if we needed to say anything now would be a good time, I survived!!
But!! I have never met ANYBODY YET who has survived Alzheimer`s!!! NOT ONE SINGLE SOUL!!! Can you imagine the frustration that runs through me when you hear of certain medical bodies who will not put patient before cost??? Can you imagine the frustration at knowing that millions still think its and elderly disease and not a disease of the brain?
All these things and more just give me the drive and determination to change things. But most of all, the thing that drives me forward more than anything is the look of hope and expectation in my grandchildren’s eyes!! The sheer innocence of what is yet to come and the longer we can keep that innocence in their eyes the better!! This is why a cure must be found and found soon. I don’t want my grandchildren or anybody else’s grandchildren going through the horrors of seeing their grandmothers of grandfathers succumbing to this horrendous disease.
I mentioned earlier about never having met anybody who has survived this disease, and unfortunately that statement is 100%true, but I would like to introduce the first person who WILL Survive it, and that person will hopefully be yours truly, myself, and thousands of others who come after me. The time has come now to raise our voices and make 2011 the year we all survive. Let’s hope and pray this is the year that everybody who is connected in some way with this disease see`s an end to the turmoil and destruction this illness brings.
We Must Live In Hope
Where There Is Hope, There Is Life
Very best wishes, Norrms, Elaine and ever increasing family!!LOL xxxxxxxxxxxxxxxxxxxx"
I will do all that I can to help Norm win this battle. Please help.