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.
Has the consultant got it right????
- Thread starter KAZZY6878
- Start date
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.
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.
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
www.alzheimers.org.uk
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
Frontotemporal Dementia (FTD)
Frontotemporal dementia (FTD) is one of the less common types of dementia. It is sometimes called Pick's disease or frontal lobe dementia. The first noticeable FTD symptoms are changes to personality and behaviour and/or difficulties with language.
www.alzheimers.org.uk
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.
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.
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.
@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.
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.
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.
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
Thank you all so much for your advice and support. The diagnosis is starting to sink in and this support group has been a massive help as I don’t feel so alone now. We were given the diagnosis by the consultant and told to wait in the waiting room for a blood test and someone from dementia services would be in touch in due course. I have felt like the consultant has given us a bomb to hold and now we aren’t sure what to do with it or where to go ( hope that makes sense) This group has helped so much as I’ve read so much information and I have prepared questions for when we see the dementia nurse and speech & language therapy in a weeks time. Trying to come to terms with this change in our lives and what our hopes and dreams were and what the future now holds has been devastating. However, I am trying to be positive and I think greater understanding of this awful illness will help me to adjust and support my husband better.
Hi,
I am new to the forum but understand what you are experiencing.
I also get frustrated when friends and family visit and they say to me 'oh your mums fine, nothing to worry about, we had a great chat with her'
I do sometime think I am imagining all this and then I realise, I see mum as she is day in and day out , not a 30 - 40 minute snap shot and with me she 'doesn't need to try'
I am new to the forum but understand what you are experiencing.
I also get frustrated when friends and family visit and they say to me 'oh your mums fine, nothing to worry about, we had a great chat with her'
I do sometime think I am imagining all this and then I realise, I see mum as she is day in and day out , not a 30 - 40 minute snap shot and with me she 'doesn't need to try'
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