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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post edited…
edited…changed my mind

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Last edited by BayouCajun on Sun Apr 10, 2011 10:45 pm, edited 1 time in total.



Sun Apr 10, 2011 1:47 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Looking for research author…contact me
I don't know of any researchers who are on this Forum. Maybe you can contact the nearest medical research facility to you? Vanderbilt or Emory?


Sun Apr 10, 2011 10:51 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re:
edited...

good idea…at the schools…

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Last edited by BayouCajun on Sun Apr 10, 2011 10:46 pm, edited 1 time in total.



Sun Apr 10, 2011 11:47 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Looking for research author…contact me
Do you write in a journal, or a blog? Or do you have a way to record your thoughts, like a tape recorder or however people do that these days? That might be useful if you aren't already doing it. Lynn

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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.


Sun Apr 10, 2011 1:57 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Looking for research author…contact me
Lynn,

I am no longer capable of organizing things…for any length of time…

I work in spurts…good quality in spurts…not in duration…no endurance left…not even in thought….add in losing the train of thought….and the frustration of having that 'cure for cancer' moment pop into my head…realizing that I have had an 'eureka' moment….and poop….it gone and I know it….or its three days later and I instantly vividly remember that I was supposed to remember something about something from three days ago….

so…my journal is here…there…everywhere….someone else will have to pick up the pieces….so not to lose anything….I write it down, record it on the iphone, jot it down….everywhere….or its lost to eternity…I won't let that happen…it is all I have left….(where are you….author?)

I don't have one list….I have lists of lists of lists….very frustrating

sometimes…by the time I lift my finger to click on something on a computer screen….with finger in mid-air…I forget why or where that finger was headed….thoughts are the same way...

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sun Apr 10, 2011 2:52 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Looking for research author…contact me
BC, what is your care plan from Dr. Boeve? Have you discussed that yet? Do you know what drugs he has in mind to try for you?

I do not wish to give you false hope. LBD is a degenerative disease. It will get worse. But treatment can help the early stage considerably. I say that our experience with LBD has been 7 years of early stage, and 1 year of advanced stage -- but the advance stage came first!

The drugs have to be tried one at a time. It takes a long time to deal with each symptom. But very good results are possible. (Not guaranteed, but possible.)

Not a cure. But improvement.

I wish you the best.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Apr 10, 2011 3:21 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Looking for research author…contact me
Jeanne,
I am in my second week of aricept…upped the dose yesterday…so I have increased problems and a body adjusting to new stuff….

Dr. Boeve was headed out of town right after he met with me the first time….and he is either on his way or in Hawaii right now for a conference….the price for working with knowledgable people….the price of working with ignorant people is great also…

I am supposed to get to that point in May or June…I will be making a trip up to MN then, will start in the Research stuff at that time too…

I did meet with him at the caregiver semianr last week and we talked about that…its the NIH regular study that they have on going…I will also start that when I come up there…

I am hoping my wife will be able to come up with me…she just started working…when I was up at the seminar...and we need that also….I don't need care right now…just understanding….

I am coming to the understanding about the outcome…its frustrating about watching my financial house being destroyed around me needlessly while the wheels turn so slow…and to have to wait for possible relief from finding the right meds…its frustrating too…but, I understand….patience….

patience….its coming harder…when you realize that your clock is ticking…the inconvience is temporary for those dealing with you…just another bump….but it is permanent for me….and it is all that counts….staying within the realm of still caring about how that affects others….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sun Apr 10, 2011 3:44 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Looking for research author…contact me
I was thinking that if you are ok typing, perhaps typing your thoughts in Word and keeping a document on your own hard drive, the text will be more easily accessible. If you want to use your thoughts for some future purpose, wouldn't it be easier to just write your thoughts in a Word document? Lynn

_________________
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.


Sun Apr 10, 2011 7:28 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: edited…
Lynn,

Blogging sounds like good idea.

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sun Apr 10, 2011 10:48 pm
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