Hi all, yesterday I was given a name for my diagnosis it’s Frontotemporal dementia. I’m 51 & had to give up work last July as I couldn’t seem to manage my job as a school secretary any longer.
Everything is making sense now I have a diagnosis especially behavioural
My question is are any of you at a similar early stage or if not do you know anyone who was diagnosed & how they are doing?
Lots of questions racing through my mind & my husbands.
Where to begin with moving forward & living!
Thank you all xx
Hi PJ and really sorry you find yourself having to deal with this.
My wife was diagnosed with FTD 4 years ago (she's now just 67). They said she could also have a touch of Alzheimers but FTD is the primary diagnosis.
To be honest, I have found it difficult to compare how it affects her with others mentioned in this forum, as everyone seems to be affected in varying ways.
As many will advise you, the first thing to do is to sort out Lasting Powers of Attorney (LPA) and get them registered, even though you probably don't need to use them yet.
For my wife, it affected her ability to write pretty much at the earliest stage - which is when I first realised something was not quite right (she had problems signing her name). It also affected her speech, though I don't think that this is one of the more typical FTD traits (others will no doubt add their views).
After the initial "behavioural" changes, she at least seemed to loose a lot of the anxiety problems she'd suffered with most of our married life. In fact, she seems to be a happy little soul, though after 4 years, she's totally unaware that there are any problems.
As I said at the beginning, it's difficult to compare, or predict how things will progress. We were able to carry on as normal for the next year (we'd both already taken early retirement before any problems surfaced), although she did give up driving not long before our referral to the memory clinic (lost confidence plus kept getting confused). We managed a few more holidays abroad too, though the last couple of times, we took our 2 boys and their families, for added reassurance for me.
I will let others add their experiences, as it is a lot to take in but please feel free to ask any further questions (via the forum or messaging) as you process it all.
Very best wishes.
Phil