But, I wonder, what is a newbie? Is it someone new to this challenge?
My H was dx with MCI in 2006 and then FTD in 2009. That was changed to cerebral atrophy in 2011 and although it was never discussed, his latest dx is "mixed dementia, or multiple dementia". The most recent analysis said the brain shrinkage started in the front and has now spread to the entire brain.
He first showed signs of trouble in 1999. I wrote this off as a bad career decision, and certainly I have had them, no dx for that! and I mean that ironically.
As my beloved niece might say, this has seemed to me, to be going on now "for-ever".
So, is my experience 13 years from when I first noticed the problems? 6 years since the first dx? 4 years since the FTD dx or 1 year since the most recent dx?
We have been told that he does not have AD. They showed me the scans and said AD looks like this, and your H looks like that.
I can't remember who said it, Wolf? Ed? Sundown? Is there really any difference in the damage to each of us?
abby--I think the term applies to both. We welcomeeveryone new to this sitewith the mixed emoptions that we're gladthepersonfoundus,and we're sorrygthey needto be here. We want them to join in, and start getting the help we know means so much in walking this road. The term can also refer to those who have just been whammied with the Dx. It's been my experience that, until you are told flat out "This is what's wrong," your brain looks for every possible explanation that is fixable. Even when told, some fight it, until reality finally smashes that effort. As for which time you were a newbie? I think you were a newbie each time you got a new Dx, because each time, you have had to start over. Maybe not always from scratch, but always from a new point. Our saving grace is this site, where we can learn, share, and support each other as navigate the Dementia road and row our leaky boatsin the Dementia sea.
abby--dementia presents such challenges, I think that--to some extent--we are all newbies until it is over (and then we are newbies at being a widow/widower). Sure, there are some plateaus, but there is always a constant decline, new situations that we haven't encountered before. From my experience, things got easier after dx, when we had an explanation for the changes. Once he had progressed out of the early stage, things got easier again because there was acceptance on both our parts. But then in 08/11 I moved my husband to an ALF, so once again, I was a newbie to that arrangement. Although things are less stressful now for me without the 24/7 responsibility, in a sense I'm always aware that the phone could ring with a new problem.