Is there any of us that don’t secretly wish when we see our specialists they will say

“We made a mistake. You are perfectly well. Take these pills, and go on with all the dreams of your life.”

I’m no different. Today I meet with my dementia (FTD/Picks) specialist and all last night I dreamt that good news would be waiting.

But I would take ANY news, anything about this disease. Does the trembling mean I’m at a certain stage? or the verbal decline? And if it does, does it mean it’s progressing or just a ‘come and go’ symptom like so many are? And most of all, how long will I have any quality of life?

That’s the hardest for me, not knowing, no path, no hint of what the day will be like. Will I be up to dressing, or will it be a stay in bed all day kind of day.

Those of you who lost loved ones, please, please tell us what the last year or years was like. We need your stories, you are our hope.

And to all of you, my prayers and my love,


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    • Ron on February 23, 2010 at 10:32 am
    • Reply

    Excellent post in many ways. And, yes, There are also when I wish I could get a do over in general.

    Good Luck and you’re still awfully sharp from this window.

    • freda on February 26, 2010 at 12:49 pm
    • Reply

    I could perhaps in the forum give a more detailed account of my Mum’s latter year/years Vicki, but her dementia and our circumstances were very different – each person follows their individual path,while having some similar symptoms,and FTD is sort of unique.
    e.g.One man with FTD is still at home with his wife and daughters,one I knew went into a Nursing Home as things were too difficult at home.
    Some early-onset sufferers have been physically fit and active and have had fatal accidents.
    This is the awful fear of not knowing,whatever has happened to someone else.
    It has made me very aware that I don’t want to ‘lose’ today – I have heard somewhere ‘Let go and Let God’ (don’t know how I dare quote that to you who knows it a lot better than me!Forgive me please).
    I don’t know whether there might be some carers on ‘’ who may be willing to share their experiences.
    Come chat with us at ‘’ in the chatroom about 3pm(15.00 hrs)EST – just have to register to chat with a user name and password, then click into the DASNI room.
    Sorry this comment is so long!
    Love and hugs freda

    • on February 28, 2010 at 10:48 am
    • Reply

    Hi Vicki,
    I read this post again and began to wish for a checklist of symptoms that would tell me what “stage” I’m at. About one year ago I began to stutter some. Now it’s regular especially on the phone and outside of the home. My temper has flared for now good reason a couple of times. And there is more. But I’m thinking that a checklist, as handy as it sounds, might make my anxiety and frustration worse. I’m facing some more testing to compare with previous testing. I’m nopt sure I want to know the results, even though I’m anxious to find out. All this contradiction must be a part of my FTD. I. too, would take any concrete news about this deisease, more concrete than, “Well, it looks like the disease is progressing and there’s nothing we can really do about it.” Aren’t we the lucky ones. I apologize for my negative mood here, but that, too, is part of my FTD.

    Thanks for your post and the opportunity to respond. I hope you are doing well today.

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