I'm fairly sure that I have dementia

Discussion in 'Memory concerns and seeking a diagnosis' started by HipRunner1962, May 24, 2015.

  1. HipRunner1962

    HipRunner1962 Registered User

    May 24, 2015
    West Midlands
    3 years ago I had an enormous seizure (in my sleep, at home) and was diagnosed with progressive ischaemic brain disease secondary to which I have epilepsy. As an ex-nurse, I am aware of where the disease will will lead and having just read Terry Pratchett's "A Slip of the Keyboard" I am facing up to the fact that I already have symptoms. My forgetfulness is getting worse - in Sir Terry's words I feel that there is an invisible moron following me around undoing things I have just done and hiding my stuff.
    My cognitive function was exhaustively tested last September and confirmed what I and my family already suspected. My ability to learn things and handle decisions is borderline special needs although my IQ seems as good as it ever was. My employers took the decision to place me on extended sick leave as I simply could not do the job (International Training Manger for a medical device company) I was employed for
    My facial recognition is gone to pieces, my ability to function outside a plan is rubbish.
    I don't have a formal diagnosis of dementia, but I know. Inside myself I simply know. I hide it well, but MRI scans tell their own tale
    Is there anyone else like this? Or am I alone. I'm only 52
  2. Kjn

    Kjn Registered User

    Jul 27, 2013
    I just wanted to welcome you hiprunner to TP, all ages, carers , past carers. sufferers are all here with you x
  3. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    #3 CollegeGirl, May 24, 2015
    Last edited: May 24, 2015
    Welcome from me too, Hiprunner. We are a similar age and I can hardly imagine what you must be going through, you have my heartfelt sympathies. There are quite a lot of members here who have various forms of dementia, or suspected dementia, and I know they will be along very soon to share their experiences with you. Meanwhile, have a good look around the forum - especially in the tearoom where you can chat about anything and even have a laugh and hopefully put your worries to one side for a little while xx
  4. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    Welcome - and enormous sympathy - from me too.

    If this had happened to me, one of the first things I'd be doing is to make my time count. I'd draw up my own "bucket list" with family and friends of all the things I want to do while I'm still fit enough to do them. I'd get the dreary but necessary legal and other stuff out of the way and then (change of gear) I'd do as many things on my "bucket list" as I could, while taking enough time to savour each experience. I'd keep a journal (with lots of photos, etc) to remind me and all my supporters / family of all the good bits and of my thoughts / reflections at the time.

    I've had friends with cancer and other nasty health problems who took this approach. It worked for them (as much as anything can) as it helped counter the deep sadness and disappointment of losing out on the kind of future they'd reasonably expected to have.

    There's a saying (originating I think from the hospice movement?) "There are many paths up the mountain ... and we all get there in the end". I find that saying comforting, in an odd kind of way, and hope it might help you feel less alone.
  5. HipRunner1962

    HipRunner1962 Registered User

    May 24, 2015
    West Midlands
    Thank you so much for taking the time to respond. I didn't think that anybody had - clearly (or foggily) I hadn't selected any kind of notification when a response is posted.
    My bucket list - I'm lucky - does not have a lot in it. My life has been pretty full up to now and currently I am focusing on recovering from the injuries I sustained in December when the van used me as a parking space... Top of my bucket list is simple: Run again and race again. If this is not a good idea orthopaedically, then I will have to learn to love the gym.

    I am a keen french horn player, orchestral. Many years ago this was my job but is now my hobby and passion. Getting back into playing again is next on my bucket list and I have a few nice gigs lined up. Playing is physically challenging at the moment (because of my injuries) but I am also frightened of forgetting how - this did happen mid rehearsal following the seizure and it was horrible.

    Some days the "fog" seems very thick - like Friday just gone. I also feel incredibly emotional a lot of the time - is this something that others have experienced?

    I will visit the tearoom and I'm hoping that my local Dementia Cafe might be able to use me as a volunteer.
  6. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    That's been my Mum's experience too. Any infection or over-tiredness from the day before knocks her for six but she bounces back afterwards. I imagine the experience is very much like having an extremely bad cold / flu - when you're in the middle of it you feel dreadful, after it's lifted you wonder why it made you feel so down ...
  7. henfenywfach

    henfenywfach Registered User

    May 23, 2013

    Firstly i just want to say that im am so proud of the fact youve taken the huge step on saying or typing your thoughts out aloud so to speak.

    You have been through so much already..and clearly youre noticing something different and what ever it is you need to know its name if it has one!

    We are all different some dont want to know and as my dads carer there is still plenty for you to live for even if your concerns became a reality.
    If you dont wish to know then thats your absolute right too.!

    Dementia is not a foregone conclusion there are many other reason to certain symptoms..and be reassured if you take further steps to seek medical advice..im sure we ll all be here on tp to listen and support you.

    Best wishes

    Sent from my GT-I9505 using Talking Point mobile app

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