What determines prognosis?

[Lucie1980]

Hi all,

My Mum was diagnosed with Picks Disease 3 and a bit years ago, and seems to have declined very rapidly. My Dad is her full time carer. They have an AMAZING mental health nurse who comes to visit them (I genuinely can't sing his praises enough) and he's always very straight with my Dad.

Yesterday when he came to visit my Dad asked him about the likely progression from here (she's lost a lot of her language comprehension recently) and what is going to happen from here. He told him that the average time from diagnosis to death is 4-7 years. This isn't a shock, and is actually kinda reassuring (I can't imagine her living like this for the next 25 years) but I can't find any information on what indicates which end of that scale she's likely to be? She's 59 this year, so she's still really young, but the progression has been really fast, 3 and a half years ago she was still working and just really forgetful.

My Dad is still pretty young for this stuff too (he's 68) and we talked about how we've done a lot of mourning for the person she was, but it still won't be any easier when it's all over.

I guess my questions are - how do we know (and by that I mean guess) how long we're likely to have her, should we start preparing for the inevitable sooner rather than later? And how should I support my Dad?

[Necion]

Hi Lucie,

Yes, the grief is constant with every little bit of ability we see disappear.

I too have asked the question....but we know there is no real answer, and to be honest it must surely depend on when in the illness diagnosis is made.

My husband John was diagnosed by doctors at London (NHNN) Aug last year.....long story, won't bore you with it here.......and was said to be in early stage. Having said that, I 'diagnosed' him with exactly that 14 months earlier....pure chance,( looking for info on his continuous headache, which local doctors couldn't help at all).....and found Johns exact uncharacteristic behaviour and ability changes which had been going on for quite some time. I'd never heard of FTD before, or Pick's disease.

I don't know who else, from TP, attended the FTD support meeting at London in the spring, but Prof Nick Fox (John's consultant) gave a talk, and said - my interpretation here - that the length of time the illness has been 'going on' before diagnosis is now being considered as more relevant than before.
Nobody knows just when it starts, so 4-7 years from diagnosis is quite vague. This seems to just be an indicator out of a scale of 1yr, 5yrs, 10yrs, 20yrs......if you get what I mean.

Some people are quite advanced in the illness when diagnosed, and in John's case, it's quite early (I hope) and is slow progressing.
I am trying to get everything in place which will be required, the important 'peace of mind' things.......mind you I've got cleaning & decorating somewhere on that list too!!

I've made slight adaptations to what might be termed 'silly things' like both of us using a napkin tucked in at the neck....having more smooth soups rather than chunky....use a big 'soup cup' with a handle instead of just a bowl......little things which may just help keep life 'normal' for a little longer and postpone John having to be aware of lost abilities for as long as possible - but who knows - everyone is different.

I'm of the mind that sooner, rather than later is the way to go where possible. We don't know how bad things will get, and from what i've learned so far, we're going to need every ounce of strength and moment of time to deal with the 'now' when it arrives.

I would say the best way to support your dad is to simply learn and understand as much as you possibly can about the illness. That way you can understand each other better - often without the need for words, Im sure you already know that even words can be exhausting.

I've been advised by TP family to get a 'speech & language' therapist involved, which I haven't done as yet, but it is on the list. I don't know much about what goes on with that, so cannot comment.

Lucie, I wish you, your dad and mum comfort and much strength, you will get a great deal of advice and support on TP, many of us are here because of FTDs of one sort or another.

Lots of love, Necion. xx

[Butter]

Your mum and dad are so lucky to have your support already. Everything that Necion has said you will be able to absorb and use with them.
And - partcularly for your dad - you will be able to keep him company as he looks after and looks out for your mum. My son keeps me company in my attempts to look after my husband - his dad - and I can't say strongly enough what an incredible difference that makes. Sometimes I think he has to listen too much to me worrying and complaining and ranting .... but if your dad can do that with you he is a fortunate man!

[Lucie1980]

Thanks, that's really helpful. Dad has us, also his mental health nurse and a psychiatrist/psychologist (I can never remember which it is) that he goes to see sometimes. We have them come and stay once a month or so and we try to keep them both busy doing stuff while they're with us (we recently discovered a motor sport place not far from home which is something which Dad can go to as something for him, rather than as a carer for my Mum).

Dad was invited to the meeting in London, but couldn't really make the trip (he's in South Devon) but I know he got sent a load of information afterwards which he found quite interesting.

Thanks again, I may well get my Dad online here, I think it would do him some good!