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Unread 04-28-2012, 01:35 AM   #1
Bobbi
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While doctors have suggested FTD/Pick's Disease, a neurologist rendered a Dx on the person I've been caring for; he said it's early onset Alzheimers with dementia. Now, his task de jour is to ferret the cause, according to him.

I don't know how trustworthy the stats are re: life expectancy, so I don't put much into relying on that type info., since diagnosis is often prolonged, mis-interpreted/mis-diagnosed, etc.

On the surface of things, it seems, however, that lifestyle can also factor into longevity post diagnosis, such as whether the person eats well, exercises, etc.

Anyone know if this is true? Otherwise, the stats appear to diminish hope. Maybe it's just staying on top of the caring aspect and follow-thru?
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Unread 05-09-2012, 05:33 AM   #2
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After days and days and weeks of contemplation, it has to be FTD, not ALZ. I've been told the person I provide primary care for is in "Late Stage." That does not mesh with ALZ for someone with onset who was below age 50 at the time.

My heart is breaking. I did write Dr. Oz and ask that he do a program that encompasses breadth beyond weight loss. And, perhaps, he has insight into how to recognize early onset, and dispel myths regarding "cures." I've heard 'em all, believe me.

I've so many people up my y'know what-not it's not even laughable any more. They push and push. I think they're scared. Well so am I. Maybe things will happen for the better. Who knows. This is not a role, nor is it for anyone, who "bought" into it.

My heart just goes out to everyone in a similar position or who has travelled the road we didn't "invite." You're champions.

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Unread 05-09-2012, 07:19 AM   #3
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I guess I don't understand the difference between the two. Yes, I read about Picks ....googled it and I've been reading about Alzheimers for over a year. The end result is the same...isn't it? No cure, little hope.

I'm sorry for your heartbreak...I think you must be a wonderful caregiver.

Have you read "Speaking Our Minds" by Lisa Snyder? I was fortunate to hear her speak at an all day Alzheimers conference here...bought her book and have learned a lot from it.
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Unread 05-11-2012, 12:19 AM   #4
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I think one of the distinguishing characteristics with Pick's is the age of onset and how (and how soon) the symptoms manifest. The age it strikes and how it does so is what flags doctors. Longevity is greatly shortened with Pick's -- the time-frame generally ranges from 2 to 10 years. But, yes, the outcome is still the same.

I've not heard of the title before, Alfee, but will make sure to get a copy.
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Unread 05-11-2012, 01:17 AM   #5
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The following, Alffe, is a link to a NY Times article -- May 2012. It states that Pick's / FTD is:

".... is different from Alzheimer’s, the most common form of dementia. But it is perhaps even more devastating, because it strikes younger people, progresses faster and, unlike Alzheimer’s, does not attack memory at first but begins with silence, apathy or bizarre personality changes. It is thought to afflict at least 50,000 to 60,000 people in the United States...."

http://www.nytimes.com/2012/05/06/he...pagewanted=all

It's also all-too-often mis-diagnosed, initially. Hard to seek or obtain therapies and services when it's not recognized for what it is. Therefore, it advances, and, possibly, more quickly than might, otherwise, be possible.
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Unread 05-11-2012, 07:36 AM   #6
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I guess, were I given a choice, I'd pick Alzheimers. Thanks Bobbi
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Unread 05-12-2012, 01:29 AM   #7
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Me, as well. But, I suppose not a single one of us gets to make a "selection." It's often the hand of nature that been doled, and trying to make it as painless and as comfortable for others.

Fortunately, the NY Times, as well as additional media in, i.e., Canada, have been writing series on this very topic and bringing light to the health issue, as well as to doctors and studies about to be undertaken, along with current understanding.

Still, we all know what's gonna happen one day, but, having to think about it happening to another and to have to plan just totally bites and by bytes.

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Unread 05-12-2012, 07:58 AM   #8
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This is a portion of roseblowers recent post: quote: "fear is a big part of the disease. Fear and emotional distress, because the person is still in there and altho they are more comfortable with their own reality, they know things are not right or normal, and it scares them." Unquote

This is soooo true...the book "Still Alice" is fictional but really captures a lot of the feelings of the "victim". My father died in a nursing home from Alzheimer's Disease so our family got a close up, personal look at a stranger who looked like our dad...but wasn't.

"Speaking our minds" is not fictional...the author chronicles 7 patients dxed with Alzheimers from their point of view...from their losses.
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Unread 05-13-2012, 01:18 AM   #9
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I've downloaded the book, Alffe, from Bookshare, of which I'm also a member. Thank you for your insight, as well as the heads-up.
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