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 Headed to Mayo…once again…DATscan..UPDATE: results 
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Headed to Mayo…once again…DATscan..Meeting of the Minds(
Best wishes Craig! So glad you have this opportunity!

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Fri Mar 16, 2012 3:03 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
Results of DATscan:

Close to normal…..
If I wasn't where I was….
If I didn't have the rest of the clinical diagnosis already in place….
If I wasn't seeing the Doctor who I am seeing….

The first person who saw my scan….called it normal.

BUT…..

on closer examination….and with an eye to actually "LOOK" at what you are seeing…….

you can see the reduced areas of uptake…..
you can see the difference in intensity in the expected areas of the scan….indicating areas of reduced uptake…..

…..

summary….

Good news.

…..

I again looked Dr. Boeve in the eyes and asked? " where do you stand on my diagnosis now " ?
His reply, " the same ".

…..

kind of exciting…..

I guess it explains what you see here and what I also experience…
And what I am extremely Grateful for…..

An accurate diagnosis of a complex situation….
At possibly the earliest 'time' possible in my journey….
And to be in the care of the Dr. who 'wrote' the book on the disease…..

Exciting times for me…..
It gives me a chance that many didn't get….a chance for acknowledgment and time to makes changes and have some enjoyment in the midst of all the frustration…..

And the gratification to be a part of what might help those who come after me…..

……..

Also wanted to mention….
When I had the PIB PET scan…..which is used to detect the marker for Alz…….
PIB result: NONE……

also….all other indicator of Alz……NEGATIVE…….

All diagnostics: LBD……suggestive of early….early…..early…..
nothing contrary……

…..
at least….all of the above, my understanding or delusion

_________________
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


Sat Mar 17, 2012 6:04 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
Craig,

I am relieved you don't have AD. I'm curious if you are relieved?

It's really wonderful that you are involved in this sort of research. I have no doubt that it will help others down the road.

Robin


Sat Mar 17, 2012 6:31 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
Robin,

You bring up an interesting point.

Do I want to just forget what is going on…..

or…..

Do I want to 'experience' all the real nasty stuff that is happening….all the way to the end?

…..

Interesting dilemma? Isn't it?

and then…..

somethings that I haven't yet wrote…and won't write about now…..
there are other alternative endings……that I could choose…..

……

so….
which is worse? Alz or LBD?
LBD or (LBD and Alz)?

or any combination or singular instance of any dementing disease?

Thank God……we don't get to choose…..

…..

I don't know, I guess I prefer to not think about a choice….
I can see pros and cons to both…..depending on what the individual wants to accomplish or endure…..

Robin, what would you prefer? if you had a choice?

_________________
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


Sat Mar 17, 2012 6:46 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
okay….Robin…

I see I didn't answer your question……I wrote an editorial…..

I am relieved.

Reason: Hopefully, I will be able to make choices further into this, or at least express them.

_________________
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


Sat Mar 17, 2012 6:48 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
Craig,
Thanks for posting your results...I wonder if the Parkinson's dopamine decrease would show for me - since I have already started sine met and it is helping me the test would probably not mean much and the clinical result probably means something....it has had a dramatic effect for me and my range of motion, swallowing, balance etc..so I am grateful.....I am so glad you are in the compassionate hands of Dr. Boeve!

I am also glad the results weren't "significant" as in, you are EARLY stage!

I am also glad you can have as much as possible, a definitive dx!

I believe I am with you....dx wise....Although I have not had PiB or DATscan........not enough resources here but my doc knows of Dr. Boeve and he knows of her so I am content as possible....

Thanks for sharing!!!!

Best!

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sat Mar 17, 2012 6:54 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
I would be relieved not to have AD because I would like to recognize my family and friends until the end, and I would like my family and friends to know that I recognize them. I believe that loss of recognition is the saddest part of AD.


Sat Mar 17, 2012 7:18 pm
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Joined: Tue Mar 29, 2011 3:09 pm
Posts: 20
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
Robin,
The loss of recognition is absolutely the saddest part of AD. For everyone involved.
Craig,
So very glad AD was neg.
Keep us updated We depend on you!!

Marilyn


Sun Mar 18, 2012 2:25 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
Interesting…..

I stated it as a loss of control…..

Others stated it as a loss of recognition…..

……

without recognition…..no control….or not good control…...

_________________
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 Mar 18, 2012 10:11 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
I agree with you Craig, Robin, others....

It's interesting to think about what I might prefer if I could chose....my doc thinks I might have early AD as well as LBD due to brain atrophy on MRIs but my PET-scan, which was glucose, not PiB, was negative in 2010, but she says it may have been too early to show up....

So I wonder still if people with both LBD and AD still have more fluctuations than pure ADers....I put my hope in this because I want to recognize my loved ones to the end....But we don't get to pick.....so will just do the best I can to preserve what I have as long as I can.......I think it would be easier on my LOs if I knew them and that would give me comfort.....

I still wonder if we seem not to know anyone or where we are, etc.....if we do know, but just can't communicate it in late stages........Maybe it's wishful thinking but I think we will know....so maybe there is no way of just being completely unaware......although I can see the benefits of that path for the patient.....

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Wed Mar 21, 2012 6:45 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
The issue of which one of these dementias I would choose if I was forced to choose is something that I have been thinking about a lot lately because of the massive fear and hysterics that my mother is often faced with. I think I would choose DLB if I could be philosophical about it because having the good times and the personal awareness of what is happening would be preferable.. But, if I were like my mother, cycling between paranoia, anger, and lots and lots of hysterical fear, I think I might choose the AD. I have met a lot of AD people this past year with my mother moving through a variety of AL facilities and it seems to me that nearly all of the AD patients I have met are calmer and less frightened by their situation. It seems to me that the nature of someone before they get DLB has a lot to do with how well he/she manages it. I have been very impressed by the postings that the folks with this disease have made and I have to conclude that not everyone experiences it the same way that my mother is doing.

Liz


Wed Mar 21, 2012 8:56 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
I took some time to look up the area of reduced uptake and its relationship to symptoms and/or functioning….

its real…..the results are real

I had a really bad day today….not because of the test or the results…..

Because of people….or more honestly…..because of me…….

I am real, too….

The tears right now are real, they are salty….they are warm….and they are unheard….misunderstood…..

I could scream……but…that tree falling in the forest and nobody hearing it thing…..

At….least I know I am not imaging all of this….maybe just a little…..

today was a bad day…..about six hours of not wanting to move an inch…..or not being able to?

so…..how do I share that with anyone? really? really?

tommorrow is chance for a better day…..

_________________
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


Thu Mar 22, 2012 2:22 am
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
Sending you a huge hug, Craig. Stay strong - remember how you are such an inspiration to all of us and how much we admire your courage.
God Bless,
Ger xxx

_________________
cared for Dad who passed away on January 28th 2013 R.I.P.


Thu Mar 22, 2012 5:51 am
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
Definitely an inspiration - Craig. Thanks for sharing your experiences. it helps all of us.

Liz


Thu Mar 22, 2012 6:25 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
Craig, I'm praying that today will be a better day. God bless you!

_________________
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.


Thu Mar 22, 2012 7:47 am
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