1. Doreen h

    Doreen h Registered User

    Jun 26, 2015
    Hayes. Middx
    Hi my name is Doreen and my husband was diagnosed 3 years ago with
    Frontotemporal Dementia (Picks Disease). Myself and the family think he has had this much longer looking back on the things he was doing. The past 3 years have been challenging in all the changes in my husband.
    It would be nice to be in contact with someone who has experienced this form of Dementia
    Hoping to hear from you
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Hi and welcome to TP.

    My own husband has Alzheimer's so I have no experience to help you. I'm sure someone else will be along. I just wanted to say 'welcome'!
  3. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Welcome to TP :)
    I'm sure someone with experience will post.
  4. Caz60

    Caz60 Registered User

    Jul 24, 2014
    Hi,welcome to this site,my husband has Lewy body Dementia.I have no experience of this but someone will answer you .x
  5. LadyA

    LadyA Registered User

    Oct 19, 2009
    No experience with FT dementia either - trying to remember who it is that does, but can't! The impact of the illness on those who are trying to support & care for their loved one as they live with any form of dementia is huge. Welcome to the forum - you've come to the right place for support.
  6. truth24

    truth24 Registered User

    Oct 13, 2013
    North Somerset
    Welcome from me too. My husband has mixed types so can't really help but I'm sure someone will be able to contact you soon.
  7. Alan19531953

    Alan19531953 Registered User

    Jun 16, 2015
    My wife has this and alzheimers

    My wife has this and alzheimers. What do you want to know?
  8. Alan19531953

    Alan19531953 Registered User

    Jun 16, 2015

    My wife is now on Sertraline (anti depressant) and Olanzaprine. This has greatly helped and the inappropriate behaviour is greatly reduced. Mainly I think due to the Olanzaprine. However it has caused her ankles to swell a bit. Thus is common so doc says.
  9. doobedoo

    doobedoo Registered User

    Dec 4, 2014
    Frontotemporal Dementia

    Hi Doreen

    My husband was diagnosed in February this year with Frontotemporal lobe dementia. I also think he's had it at least 2 to 3 years before diagnosis. I haven't got a lot of experience regarding this type of dementia but I'm on a huge learning curve as since diagnosis he seems to be changing rapidly. We saw the psychiatric nurse yesterday who we see every few months and I think she was also surprised at the changes to my husband. I really just wanted to say if you need a chat let me know as I'm beginning to find out how challenging it can be.

  10. Doreen h

    Doreen h Registered User

    Jun 26, 2015
    Hayes. Middx
    Thank you for your reply
  11. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    hi Doreen, welcome to TP. My husband has Parkinson's but beginning to think, from reading post here, that dementia is beginning to set in, just little things. But you will find lots of help here.
  12. Hellyg

    Hellyg Registered User

    Nov 18, 2014


    My husband was originally diagnosed with Alzheimer's but now changed to frontal temporal dementia in the last few weeks, so still so sure myself. Likewise I think he has symptoms for the last 3-4 years. I am happy to chat and share thoughts

  13. Annypurple

    Annypurple Registered User

    May 6, 2015
    Hello Doreen, I'm new here too and also facing understanding dementia .... But not Picks specifically. I'm learning that dementia has many journeys, many causes and even if the cause might be different, the experience might be similar. My OH has Alzheimer's pathology but main brain disease is something no one I know has ever heard of, including our GPs. Amaloyd Angiopathy- micro bleeds caused by the amaloyd protein, anyway the progress of dementia, realising that he's had it some tim, dealing with the emotional shock and day to day progression must all be similar? I'm very new to any discussion. I share your concerns but can't share Picks experience.
  14. tre

    tre Registered User

    Sep 23, 2008
    Hello Doreen,
    my husband does not have Picks but he does have one of the other rarer dementias. We get enormous help and support from UCL.
    They have a support group specific to Picks which you can find here:
    We had a joint meeting a few months back with the picks group and everyone was very friendly so if you can I recommend giving it a go. Failing that there is heaps of useful info on the website
  15. Doreen h

    Doreen h Registered User

    Jun 26, 2015
    Hayes. Middx
    Hi nice to hear from you

    Hi nice to hear from you
    My husband first stared to go missing once all night in his car the police found him in Kent how he got there he can't say ( car taken off him no longer driving) then he got lost when he went for his bike ride missing over 12 hours found in Surrey ( bike taken off him) we got him a exercise bike which he uses quiet often. Went to the GP and explained that he would wonder off not knowing where he was or how to get back the GP referred us to the memory clinic and after tests the confirmed he had this dementia but no medication for the type he has.
    At first l was still working 3 days a week locally so he would pop in a have a cup of tea then go home hopefully but no he would get on a bus a go for miles not being able to get back so eventually l gave up work to be with him all the time and in the last 18 months he has changed a lot, he needs help with every thing dressing, showering, taking to the toilet ( double incontinent ) . At first he used to clap a lot very loud then this changed to tapping on every service now every thing he picks up he bangs down many times sometimes he gets up in the middle of the night and goes down stairs and you will find him banging on the front door handle this can go on for an hour or more then he gets this out of his system then will go back to sleep for a while before he stars again.
    We go for walks not as far as we used to , he walks much slower now and a drive in the car every day for nearly an hour which he enjoys. Sorry must go now he needs changing hope to keep in touch
  16. tuffydawn

    tuffydawn Registered User

    Mar 30, 2015
    hi my name is dawn my family and i believe my partner has got frontal lobe but we have not yet managed to get him to see a doctor it is four years ago i thought some thing is wrong and it has been a down hill slide since then i feel for you although you seem further along the road than me any hints to things to look out for would be great
  17. Shiela

    Shiela Registered User

    Mar 26, 2015
    hi there my husband has fronto temporal dementia but I also think he has other forms of dementia too the specialist thought he may. It's very challenging and different from one minute to the next, my husband also has poor mobility and I have to walk him around but this morning he wouldn't accept my help and decided he wasn't getting in the shower it's a big fight every time. there is no quick fixes I just cope on a day to day basis with support from my family, do you have any support? I am now getting some carers in to help with showering and dressing which he is against but it's getting too heavy for me. sorry if this all sounds on the downside but that's how it is for me
    take care x
  18. kingybell

    kingybell Registered User

    Feb 3, 2015
    Hi my mil has mixed dementia fronto temporal and Alzheimer's. She's functioning relatively well at the moment but has little short term memory.
    Her FTD causes her to say inappropriate things to people and she uses 70s borderline racist language to describe various people.

    She does get obsessed about things though like visitors coming and it took her an hour to find the park about 3 weeks ago.
    There are 3 sub types of ftd, one affects behaviour, one mobility and the other language.
    I think as it progresses they go through each of these stages. We are dealing with the behavioural bit so far. Don't quote me on this though as someone more expert may correct me.

    Hang in there, it's not pleasant but we do have happy days amongst all this and mil seems ok at the moment.
  19. marydoll

    marydoll Registered User

    Jul 12, 2015
    Frontotemporal dementia

    Hi I have a family member who was diagnosed with Picks Disease about ten years . She is in full time care now as she needs around the clock care. She cannot talk or communicate and has problem swallowing and has her food liquidfied .It is very painful to watch what is happening to her when she is crying I don't know if it is pain or emotionally
  20. Pollyanna153

    Pollyanna153 Registered User

    Jul 15, 2015

    Hi this is first reply I done hope it works
    My husband recently diagnosed with this disease which probably started about four years ago he is now on sertraline which to a certain extent helps. Not as many hallucinations in night I on a learning curve like yourself and it is very hard

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