The winds of Change

Discussion in 'I have dementia' started by Norrms, Nov 16, 2011.

  1. Norrms

    Norrms Registered User

    Feb 19, 2009
    Torquay Devon
    The Winds
    Of Change
    Changing times are ahead, and I must admit, sometimes change is difficult to deal with, especially when you have a diagnosis of dementia. In the last seven days I have been informed I have a new Consultant regarding my Dementia, and also, as a double whammy I had a letter yesterday saying my GP of twelve years plus is retiring. Normally this wouldn’t be a problem with most people but something like this can have a real adverse effect on people with Dementia.
    I have found myself worrying about this so much, all sorts of connotations and thoughts have passed through my mind and it’s so unsettling. Things like this, that most people would take in their stride has made me so fretful. On top of which I have an appointment with my new consultant tomorrow along with my Community Phsyc nurse and the topic is going to be “Lewy Body’s”
    Yes, you heard right, because of my intolerable nightmares, smelling things and hearing things that aren’t real I have also gone through a stage of thinking I have seen something that has never happened, that after a very long conversation between my “Angel Elaine and my CPN (Nurse) there is now a thread of thought that when I was diagnosed with early onset dementia it might actually be Lewy Body`s rather than Alzheimer’s!!
    Some would say I have been miss-diagnosed, but either way I STILL HAVE DEMENTIA and there is still no cure (AS YET!!)
    So, what now?? Why do I feel as if I have been set back four years!! Why does it still feel as raw being told this than it did four years ago when I was diagnosed with Alzheimer’s type Dementia, and why do I feel just as devastated now as I did then??
    Because my friends, I know what the end result Is, I am seeing my friend`s who have the same diagnosis as me but are a little farther down the line, slowly disappearing in front of my eyes every week when we meet. The feeling of hopelessness and utter despair still feels as if it’s attached to me and never left me. This is the truth of this disease! This is how this disease drags you down and pulls you towards the depths of despair. It doesn’t matter how many times you are told you have dementia, the effect is just the same!! But I promise you this my wonderful friends, be it, Lewy Body`s, Alzheimer’s or any other type of dementia that may try to take me away from my family and friends, it’s got one HELLUVA fight on its hands!! This is one very Determined (Young LOL) granddad!!! And I for one intend to stay that way until the day a cure is found!!
    All our love, Norms, Elaine and family xxxxxxxxxxxxx
  2. piedwarbler

    piedwarbler Registered User

    Aug 3, 2010
    South Ribble
    I haven't got dementia, I have had cancer treatment and I might be able to reassure you a tiny bit by saying a change of medics throws me into a blind panic. I feel safe with people I know.
    Sending you & the family a hug x
  3. grove

    grove Registered User

    Aug 24, 2010
    North Yorkshire
    Hello Norms , Just to say i would be very upset & panic if my G P ever " Moves On " for a new Job etc ....... She is the BEST G P have had ( the 1 in Sussex where i used to live was nothing Special ! ) So can understand your worries etc Norms

    Sending you much Support & Good Luck at the Hospital ! ! !

    Love & Hugs Love Grove x x
  4. Dorris

    Dorris Registered User

    Nov 4, 2011
    Hi Norms....
    Sorry to intrude on your post,but wanted to suggest a new way of looking at the change of consultant so it seems less daunting maybe?
    Ok so its a new one but.....
    maybe,just maybe this one is possibly more up to date on the illness?
    knows of different forms of treatment to your previous consultant?
    Just a thought,,,,,, I have found over the years (nothing to do with dementia however) but in general, a person can have a particular illness and yet can see several doctors/consultants who all have different methods and suggestions etc of how they would treat that person.
    Try not to think of the downsides,after all
    ,, never know?
    could be the start of something new.......
    All the best of luck to you,
    apologies again for the intrusion....
  5. carrie99

    carrie99 Registered User

    Apr 26, 2009
    Lewy Bodies

    Gosh Norms, you seem to br getting every thing going!
    On my part, I am going to be filming a day in the life of a day with Alzheimers.
    I have already had photos taken, and they will be part or th "Remember the person"
    They want to film me in my everyday life - singing in my choir, going on U3A walks. They are filming in my village next week.
    I don't know what my neighbours will think of it, having cameras around for a day.
    Watch this space
    A very excited Carrie

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