Fronto - Temporal Dementia, Rare ????

[fsteve56]

Hello all im new to this site, myself and my family are trying to learn and adapt to my Dads new way of life, my Dad was told he had the very rare condition of Fronto-Temporal Demenita, but my question is how rare and uncommen is it? Is there anyone else who suffers from it or cares for someone who suffers with it on this site??? I am really interested in talking to people who are involved in some way with this illness as I really want to learn more and try and get a better understanding from a personal view to enable us to give my dad the best quality of life, thank you.

I am glad this has been asked , my wife is 52 and diagnosed with FTD she is in nursing care and of late it has been very difficult to cope with her condition , I believe it is the emotion side of the brain which is affected which causes every emotion known to reveal itself in a short space of time or in my wifes case in less than a few minutes.It is very frustrating as my wife will cry and plead with me but is unable tell tell me whats wrong , i dont know if she is in pain or its the condition , either way i find it so distressing. I would like to know how your dad is to compere him with my wife. Steve

[cornish]

I am glad this has been asked , my wife is 52 and diagnosed with FTD she is in nursing care and of late it has been very difficult to cope with her condition , I believe it is the emotion side of the brain which is affected which causes every emotion known to reveal itself in a short space of time or in my wifes case in less than a few minutes.It is very frustrating as my wife will cry and plead with me but is unable tell tell me whats wrong , i dont know if she is in pain or its the condition , either way i find it so distressing. I would like to know how your dad is to compere him with my wife. Steve

At the minute we are lucky, he always seems really happy, I mean he he sleeps alot and follows the same routines every day, he has no interest in doing anything which is a bit upsetting but overall he seems happy, It makes it easier for us to.
The one thing that sometimes confuses us is sometimes you would think nothing is wrong with him, I do alot of cycling and if I ride down to see them, he tells me to ring him when I get home to let him know I got home safely Its just strange as he always did that when He was well, I know the future is going to be tough, but I have accepted whats happeing know and addapted life to deal with it. I do however feel upset that my parants got robbed of a happy future together, all they have ever down is worked since I was born and these are the years they should be enjoying thems self, sadly there housebound most of the time becuase of the routines .

[Boudeca2007]

Hi there. My late Mum was diagnosed with FTD in 2003 after many investigations. A lot of the Neurologists [ then ] didn't have a clue what was wrong with her. Hopefully now they will get a much quicker diagnosis. I found a very helpful site called the Cerebral Function Unit based in Manchester they have helped me with info on many occasions and sent me their monthly newletter via email. Here is the link - they are very helpful.

http://www.cerebralfunctionunit.co.uk/

[Simone67]

hi cornish am finding myself in your situation, just found out on tuesday my hubby has ftd