Has the consultant got it right????

KAZZY6878

New member
Jun 10, 2024
1
0
My husband has just been diagnosed with FTD after 3.5 years. We both knew something was wrong and he has had tests for Parkinson’s, MND & Alzheimer’s but all came back negative. He has now received a diagnosis and Im now anxious that the consultant has got it wrong. His PET showed inactivity of the frontal lobe and over the past few years his memory has deteriorated but he’s still independent. His personality has changed and he often says inappropriate things. Im now questioning if this diagnosis is correct as I don’t feel he’s that bad or is it natural to be in denial. I have such mixed feelings as we have waited so long for a diagnosis.
 

Collywobbles

Registered User
Feb 27, 2018
362
0
It is natural to be in denial, so please don’t think that’s unusual. None of us want this horrible thing to be happening to our loved ones.

But with tests pinpointing the frontal lobe as the core of the problem, Fronto-Temporal Dementia seems a very logical conclusion when other conditions have been disproved by tests.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
82,343
0
Kent
Welcome @KAZZY6878

FTD is one of the rarer forms of dementia but more is being understood about it in recent years.

There are quite a few people on the forum who are diagnosed with FTD or who are carers for people with FTD and I hope they will come on line, maybe not until tomorrow and share experiences and understanding with you.

Meanwhile this link may give you more understanding of FTD

 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,697
0
Newcastle
Hi @KAZZY6878 and welcome to Dementia Support Forum our friendly and helpful community. I am sorry to hear about your husband. I don't know anything about FTD so can't comment on the diagnosis. However, whatever the diagnosis, the most important thing is to acknowledge that changes are occurring over which neither you nor your husband have any control. This Forum and the range of published material available from the Alzheimer's Society will be important in supporting you. Never be afraid to ask questions, share with people who truly understand or let off steam.
 

LynneMcV

Volunteer Moderator
May 9, 2012
6,335
0
south-east London
Hi @KAZZY6878 and welcome.

As others have said, it is often a shock when a diagnosis eventually comes, even when all the signs indicate that there is a problem.

I feel for you as I have a family member who has been going through something similar and we have so far managed to rule out Parkinson's and MND but the jury is still out on some form of dementia. It can take an age to get to the bottom of these things and I can fully appreciate how hard you are now finding it to accept the diagnosis.

The diagnosis is just one step. When my late husband was diagnosed it helped us plan ahead. We got all the legal things sorted while he was still able to make those choices (Power of Attorney and Wills) - then we tried to get on with life as normal, concentrating on what we could still do.

The diagnosis in itself is not the end of good times to be had, we certainly enjoyed our share of them for several years after diagnosis.

We are all here for you.
 

Fugs

Registered User
Feb 16, 2023
141
0
@KAZZY6878 I never fail to be surprised comparing what my wife can do vice what she can't. Not quite your situation as she has Alzheimer's, but I suspect there are some similarities.
 

Angel55

Registered User
Oct 23, 2023
197
0
Hello 💗

As @KAZZY6878 says there can be similarities. I try to look at things overall and under the whole umbrella term 'dementia'.

We had many years of to and fro with Dad often thinking no he's alright this is just dad or older age but then the fro of hang on something isn't quite right. I can only say that in my own experience there are similar things and very individual things. In someone's familiar environment things seem not so bad but when that person is out of that environment it can become more obvious but even then ever so subtle. Even now when I see Dad I can get caught out thinking is this real? then the switch comes and you think mmm okay this is real. We only received a formal diagnosis of Alzheimer's in January this year. We had been along this path since probably 2017/2018. I still sometimes think I know it's real but I don't want it to be real if that makes sense. Its hard.

Hopefully someone will be along with experience of FTD to add their own experiences . Dad was initially investigated and diagnosed with NPH also a rare form of dementia but things did change as the disease progressed along.
 

Oscar 10

Registered User
Nov 3, 2023
23
0
I also constantly question this diagnosis my husband was diagnosed last year I knew there was something wrong but when it was actually diagnosed I kept thinking have they got it right he doesn’t remember the appt at all and if I try to talk to him about about it he just says what do they know about me who are they anyway so I have given up trying to discuss it with him it’s so hard as I now have a partner who is nothing like the person he was he will sit in front of the tv all day in his pjs and if I say are you going to get dressed he will answer I am dressed so I just try again in a while and hope for the best on the face of it all he looks the same as he always has but there’s a light that’s gone out never to be lit again I struggle every day with feeling lost and alone and wondering whether I can continue with this life in front of me and what our future will be like I try to come on here everyday to remind myself I’m not going through this alone unfortunately some have it much harder this brings me down to earth take care of yourself xx