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04-28-2012, 01:35 AM | #1 | |||
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Senior Member
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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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".... This world wasn't built for people in wheelchairs ...."
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"Thanks for this!" says: | Alffe (05-08-2012) |
05-09-2012, 05:33 AM | #2 | |||
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Senior Member
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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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".... This world wasn't built for people in wheelchairs ...."
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"Thanks for this!" says: | Alffe (05-09-2012) |
05-09-2012, 07:19 AM | #3 | |||
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Young Senior Elder Member
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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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"Thanks for this!" says: | Bobbi (05-11-2012) |
05-11-2012, 12:19 AM | #4 | |||
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Senior Member
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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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".... This world wasn't built for people in wheelchairs ...."
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"Thanks for this!" says: | Alffe (05-11-2012) |
05-11-2012, 01:17 AM | #5 | |||
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Senior Member
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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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".... This world wasn't built for people in wheelchairs ...."
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"Thanks for this!" says: | Alffe (05-11-2012) |
05-11-2012, 07:36 AM | #6 | |||
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Young Senior Elder Member
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I guess, were I given a choice, I'd pick Alzheimers. Thanks Bobbi
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"Thanks for this!" says: | Bobbi (05-12-2012) |
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