The gift that keeps on giving....

[BazArcher]

Sadly the title is meant more in sarcasm but that's hard to transfer onto a forum but here goes.
Its been awhile since I posted mainly as OH is in early stages of FTD, its taken nearly 2 years to finally get confirmation of this as she is now 50 so they were obviously trying to source another problem rather than the one I had pretty much come to the conclusion of.
Two years feels like a lifetime already to me watching her slowly get worse with remembering even the simplest things and names of pets/friends I guess we all know this and gradually except it.
Regretfully though and hence the title its now become apparent after gene testing what caused it and where it came from and now also who else it may affect, I had the unfortunate displeasure of informing all OH's siblings that there were now in the firing line as this gene ( MAPT mutation ) is fairly well recognized as being passed on thru the family line, this also includes our son who was told this life changing information while I was present.
As you can imagine its came as an even bigger shock than finding out OH has dementia I just wonder has anyone else come across this variant of the disease.
Not sure what else I can say but friends and social have been helpful so I've managed to get passed without the need for anything other than a hug so far.

 

[nitram]

Try a search (top of screen) on FTD

https://forum.alzheimers.org.uk/search/53948/?q=ftd&o=date&c[node]=69

EDIT
You may find
https://www.alzheimers.org.uk/downl...factsheet_what_is_frontotemporal_dementia.pdf
helpfull

 

[canary]

My OH has FTD and it took 3 years to get the diagnosis, so I feel your pain. FTD can often take a while to get diagnosed because they frequently dont have memory loss or other symptoms usual with early Alzheimers. Many practitioners have never come across FTD before, so dementia doesnt occur to them. My OH was originally diagnosed with depression and with marital problems!

While my OH has not had genetic testing, I know that just because you have the genetic mutation doesnt necessarily mean that you will get the condition, or perhaps only very mildly. Could you/your son get referred to a genetic counselor?

You could also try this forum https://www.ftdsupportforum.com/ as I know that there are people there who have relatives with a genetic mutation.

 

[BazArcher]

Aye Canary they did the same with us when I first mentioned it to the doctor in mid 2013 so I know that one , sadly the mutation does seem to be I hate to use the word common but it is a fairly well known one, the surprise is where it came from as OH's family has a history of it with her mother in a home since being sectioned about 5 years ago which Is why I had the initial thoughts as I'd seen the symptoms of her in OH starting in 2013, Addenbrookes informed us it came from her father though as he passed away in 2000 with motor neurones disease.
And yes we have had plenty of contact with support and psychologists due to the inherent nature of this our son who is now a week away from his 21st has the biggest life changer as they've told him he's on like 50/50 chance of inheriting it. The rest of OH's siblings are also on similar odds and the thing is if one of them does inherit that will also include their children too so it is a real kicker.
I know folks will say its still a chance but my way of looking at it is if I was in a room with another person and they said we have a 50/50 chance of winning the lottery I'd take It!.
Still we keep on smiling in spite of all the upheaval its the only way I know but now the joke me and the boy shared when we have a moment of forgetfulness as in "you've got it" seems to backfire a bit now, so that one will be put to the side and hopefully we can smile and laugh about something less sinister .

 

[Philbo]

My wife was diagnosed with FTD nearly 4 years ago (she's 66 now), taking about a year from the first visit to the GP, to the memory clinic, scans etc.

Looking back, I could identify some of the signs about 2 or 3 years before that, so probably had it at least 7 years?

Initially, it was the constant repeating herself that was most noticeable, and to some extent, mood swings. The other sign was that she found it difficult to write, especially signing her name (she tended to print it instead).

She did pretty poor on the short memory tests and since diagnosis, her self awareness, speech and other cognitive functions have been badly affected.

She is now incontinent and I have to do just about everything for her. A far cry from the bubbly independent woman I married 46 years ago!

The only saving grace is that she has become a happy little soul, always laughing (not always at appropriate times) and at least at the moment, we still get out at weekends to our local pub.

Like Baz, I try to make a joke of most things - otherwise I'd cry (or take the short drive to the Eurotunnel and be off!)

 

[canary]

I know folks will say its still a chance but my way of looking at it is if I was in a room with another person and they said we have a 50/50 chance of winning the lottery I'd take It!.

Yes, I understand, but what I was trying to say is that even if you have the affected gene you may not get the symptoms (or hardly any) - its a bit like saying that you have won the lottery, but you are only going to get 1p!
Why this happens, no-one knows, but it isnt just a simple thing of - you have the gene so you will automatically get the disease.

 

[BazArcher]

Aye Canary I know where you're coming from and ordinarily I would be agreeing as I usually have my glass half full .... but and yep always that big but, the letter and explanation from the professor at Addenbrookes plus his team seems to suggest this gene is and to use his words " almost completely penetrant " , I know they tend to look at things as worst case so as you suggest it is only a chance and that's what we hang onto but its still a cloud hanging over quite a few of the family now.
Enough of the gloom methinks so I shall get back to watching some telly with OH and have a few laughs hopefully

Baz

 

[canary]

the letter and explanation from the professor at Addenbrookes plus his team seems to suggest this gene is and to use his words " almost completely penetrant "

Im really sorry to hear that
What a dilemma for your son

 

[BazArcher]

And to add more misery, there was sod all on telly last night so had to put up with the sundowning at great length what a life, still today is another day and hopefully no dark clouds to set it off to early .

 

[canary]

DVDs of favourite programs/films for those sort of evenings?