Diagnosed with Frontal lobe dementia

nae sporran

Volunteer Host
Oct 29, 2014
6,354
Bristol
Welcome to DTP, @Hubby1. Sorry I have no experience of FTD myself, but remember how hard it was in the early days after my partner was diagnosed with Vascular Dementia. You will find support and help here from others who will have similar experiences, and you can start your own thread if you want to ask more specific questions.
 

MAMMYGRANNY

Registered User
Jan 26, 2016
61
Hi all - my wife was diagnosed with FTD almost 12 months ago aged 51 :eek:
She had not been quite right for several years and the GP kept saying it was the menopause. Her speech was the main symptom.
We eventually want private for a second opinion and a consultant sent her for a brain scan. Three months later we got the bombshell and then basically shown the door with the "nothing we can do" message and when asked what to do was told "carry on as normal!". No fact sheet, no support group - zero.
For the past year we have been bobbing along carrying as "normal" thankfully with a loving family and a good bunch of friends.
After the shock of the diagnosis my wife ended up in coronary care for a week (Heart racing 280 bpm) and after nine months of drugs which made her feel ill she is now drug free and the heart appears fine again. Apparently no link between heart and brain problems although she had been having dizziness and hot flushes and tingling and palpitations for two years prior to diagnosis!
Twelve months on there doesn't appear to be any significant deterioration, although she is reluctant to join in big conversations because she fears getting her words mixed. She is thankfully still fully independent, got a better memory than me (I am 56) and holding down two jobs including working in an accounts department. No problem with numbers!
Everything she is passionate about in life, her family, her jobs, nature, recycling, cleaning beaches, shopping for bargains, she excels at. As I said to the specialist 12 months ago, she is the perfect wife. Prepares our meals most nights, always plans them and does all the shopping and cooking. Now she is off the meds she has bundles of energy and always appears happy and cheerful and a picture of health.
I realise FTD is different for everyone but I am really struggling to come to terms with the diagnosis. The day after the diagnosis we made a pledge to carry on as normal, live life to the full and never mention the D word again, unless she wanted to. I can't think too much about the future as obviously the outcome for any form of dementia is not good, especially when diagnosed so young.
The prognosis we were given from diagnosis was 4-6 years (but may be longer) - the fact we got early diagnosis due to going private I am hopefully it will be a lot longer. Certainly 12 months on she doesn't look like a lady three years from the end of her journey. If there is anyone out there who was given a similar diagnosis/prognosis with anything positive to say, I would love to hear from you, either as a carer/partner or indeed anyone with the condition.
Hi Hubby1,
I'm very sorry that your wife has been diagnosed at such an early age with FTD.
You are absolutely right to live life to the full for as long as your wife is able to!

No one can predict how long your wife will live or how her illness will progress as it varies so much.
My husband was diagnosed six years ago but in retrospect he had some symptoms for quite a few years by then.

When he was diagnosed I read those devastating statistics ( 6 to 8 years ) and was in a terrible state. But remember this is the average lifespan so some people live twenty years or more while others survive for a much shorter period.

My advice to you would be to get your legal stuff like wills power of attorney etc seen to as soon as possible while your wife still has capacity and if possible find out her wishes now regarding her health care for when she can no longer make those decisions herself.
If you need to find info on FTD just google AFTD. Its American but has good information as to what to expect. Also there is an online support group FTD support forum which has a lot of useful support and advice from people caring for a family member with FTD.
Some people with FTD make very poor financial decisions and can be easily taken in by scams so it might be a good idea to protect your assets if you can.

Of course you are so very upset by this diagnosis - it is dreadful and my heart goes out to you but just take it one day at a time - some will be good some not but I feel sure you will do your very best to care for your wife. If I can help you in any way please don't hesitate to ask.
 

PJ

Registered User
Jan 26, 2017
344
Bristol
Hi all - my wife was diagnosed with FTD almost 12 months ago aged 51 :eek:
She had not been quite right for several years and the GP kept saying it was the menopause. Her speech was the main symptom.
We eventually want private for a second opinion and a consultant sent her for a brain scan. Three months later we got the bombshell and then basically shown the door with the "nothing we can do" message and when asked what to do was told "carry on as normal!". No fact sheet, no support group - zero.
For the past year we have been bobbing along carrying as "normal" thankfully with a loving family and a good bunch of friends.
After the shock of the diagnosis my wife ended up in coronary care for a week (Heart racing 280 bpm) and after nine months of drugs which made her feel ill she is now drug free and the heart appears fine again. Apparently no link between heart and brain problems although she had been having dizziness and hot flushes and tingling and palpitations for two years prior to diagnosis!
Twelve months on there doesn't appear to be any significant deterioration, although she is reluctant to join in big conversations because she fears getting her words mixed. She is thankfully still fully independent, got a better memory than me (I am 56) and holding down two jobs including working in an accounts department. No problem with numbers!
Everything she is passionate about in life, her family, her jobs, nature, recycling, cleaning beaches, shopping for bargains, she excels at. As I said to the specialist 12 months ago, she is the perfect wife. Prepares our meals most nights, always plans them and does all the shopping and cooking. Now she is off the meds she has bundles of energy and always appears happy and cheerful and a picture of health.
I realise FTD is different for everyone but I am really struggling to come to terms with the diagnosis. The day after the diagnosis we made a pledge to carry on as normal, live life to the full and never mention the D word again, unless she wanted to. I can't think too much about the future as obviously the outcome for any form of dementia is not good, especially when diagnosed so young.
The prognosis we were given from diagnosis was 4-6 years (but may be longer) - the fact we got early diagnosis due to going private I am hopefully it will be a lot longer. Certainly 12 months on she doesn't look like a lady three years from the end of her journey. If there is anyone out there who was given a similar diagnosis/prognosis with anything positive to say, I would love to hear from you, either as a carer/partner or indeed anyone with the condition.
Hi sorry for the late reply but I’ve just come across your post. I was diagnosed with bvFTD 18 moths ago (ish) & I, like your wife am very active. I am aware of how much my behaviour has changed, I’m far more outgoing & like to talk to people (complete strangers). I was 53 last week & I do feel thankful that I’m doing so well. Although my husband sometimes finds my behaviour a little challenging, in a fun way atm. I hope you and your wife are still doing well & living life to the full :)