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 I'm outta here. 
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: I'm outta here.
Thank you Gail for the "permission" and for bringing up the issue. I'm young but really do need to plan now for the future. I greatly appreciate the opportunity to discuss and hear the thoughts of others. Education and learning stem in part from conversation. Take care, Katie

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Katie (36) daughter of Marcia (70)


Sun Jan 16, 2011 9:13 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Post Re: I'm outta here.
Hopefully in our lifetime we will see a cure for these debilitating dementia diseases. Do whatever you can to aid our medical community in the advancement of seeking a cure.
This year was my first year with a team in the Alzheimer's Memory Walk and already I am working on plans to expand and raise money in 2011. We MUST find a cure!
One thing we learned from this site: be prepared. Get all of your AD in order so you go out on your own terms...which ever way you so choose.

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Dianne C.


Tue Jan 18, 2011 10:46 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: I'm outta here.
Good point, Dianne. I would add that finding the cause might be important, too. It seems to me there must be a reason for the exponential increase in degenerative brain disease other than just 'living longer', just as I find the increased cases of autism in children alarming and unexplained.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Jan 18, 2011 10:57 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: I'm outta here. Autism
Good point, Pat. Dale's granddaughter is autistic. I never could hold her as a baby. She was never cuddly. She would bang her head on the wall and scream. We took her to a restaurant for her 5th birthday ... and in the middle of the meal, she started screaming. Another patron made it quite clear that he was totally offended that we would bring a child to a restaurant 'who needed a nap.' It still makes my blood boil.

There must be an answer for all the brain disorders in Dale's family: Bipolor; Autism; and Lewy..... It's a terrible list.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Jan 18, 2011 11:04 am
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: I'm outta here.
Some of you may have read Temple Grandin's books (there is a movie but I haven't seen it). She is autistic and has a different perspective on it. "Animals in Translation" weaves together her autism and her insights into animal behavior. If you are an animal person, it is an incredible book.


Tue Jan 18, 2011 2:54 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3336
Location: Vermont
Post Re: I'm outta here.
I saw Temple on a tv show a few years ago. What an incredible person she is! She seems to be very high-functioning with her autism.
I wonder, too, why there is such a huge bulge in the # of autistic kids these days. It's absolutely frightening. But, when you look at what is in the water, air and a lot of the food people are taking into their bodies, I guess it shouldn't be too surprising.
The no. of people who cook and eat "simple" foods - stuff that doesn't come out of a box, can, plastic bags, etc. seems to be decreasing. We've made prepared "food" cheap and easily available. I am glad I grew up eating from our veg. garden and still eat a big portion of our meals from our gardens, and have raised our kids on organic, home grown foods as much as possible. We're eating a lot less meat since we don't live on a farm so we can't raise our own (and buying local meat when we can). The junk that is fed to most animals in the US is frightening! Or the water that a lot of seafood is raised in..... well, I won't even go there!
As I've told my kids, you can pay for good food now or you can pay with your health later.

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Jan 18, 2011 4:48 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: I'm outta here.
Presumably we all want to know if we are getting dementia, which in many cases becomes obvious too late for the patient to comprehend. There is a new test which can be self administered that is apparently far more accurate than the MMSE. It's the TYM (Test Your Memory) exam. Wonder if we tested ourselves once a year if the familiarity would skew results if dementia did show up?

From www.alzheimersreadingroom.com

Researchers at the Addenbrooke's Hospital in Cambridge, England have developed a new test for Alzheimer's and dementia. Test Your Memory (TYM) is a short, on paper, test that can detect Alzheimer's disease at an early stage. The quiz takes about 5 minutes to administer.

The TYM is comprised of ten simple tasks including: the ability to copy a sentence, how items relate to each other, simple math, and the ability to recall.

In a clinical trial involving 679 people, the TYM detected 93 percent of people with Alzheimer's.

This compares with 52 percent for the Mini-Mental State Exam (MMSE). The MMSE is the test that doctors have been using for decades to detect mild cognitive impairment, dementia and Alzheimer's.


Wed Jan 26, 2011 2:49 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: I'm outta here.
Wow, thanks, Gail!!! I just took the test and was relieved [and surprised] that I got 50/50! :lol: Whew! I also stored the test so I can take it every year.

I wasn't sure about the 'Prime Minister' question, whether I should put David Cameron or Barak Obama. 8)

There are probably a lot of us who have been taking care of LBD LOs who often doubt our own cognition. This certainly made me feel better. Thanks again.

NOTE: There are a couple of menus to negotiate to find the test from the link [but that may be part of the test :lol:] .

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Jan 26, 2011 10:47 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: I'm outta here.
thanks for the test gail...

watching hubby over the last 12 years...i've always felt if you thought you were having memory problems, you are probably ok.. its when you forget and you forget, you forgot... thats when there is possible trouble..

was interested to hear a neurologist speaker this week, say the same thing..
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Wed Jan 26, 2011 12:58 pm
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