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 Headed to Mayo…once again…DATscan..UPDATE: results 
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Headed to Mayo…once again…DATscan..UPDATE: results
RESULTS update on page 2
Yep….you betcha….gonna hitch it up and hit the road again…

in two weeks I head to Mayo for a DATscan….and then appt with Dr Boeve…

a 'Habit' Booster appt…….a 'Habit' Reunion…….and a Saturday Conference 'Meeting of the Minds'……

what more could a guy want?

there is a lot more to the story……but, this is the Mayo part of this trip for me….
this a way more than enough to talk about here……
I will probably be in Rochester area at least three weeks…..give or take….
possibly some time in Wisconsin….too
I am sure there will be time for a cup or two of coffee and some idle conversation…..
mostly rambling….non sensical….non linear….on my part...
So if any locals are in the 'area'…..PM or email me….

Pat….they opened the campground a few days ago……usually doesn't open up until April 15……

Jeanne and Coy…..hope you are hungry…..and all better….
Connie is coming with her Cajun Cooking Pots……really look forward to talking to you guys about the rest of the story…..
and feeding you some real Cajun Food….

there has been a whole lot going on in my life…..cognitively….better…..or delusional…... :lol:
I am still trying to lose that house here in Knoxvillle……always just days away from another almost….
today is no different…..but…..I am different…..pretty close to done with it…..

anyway….looking forward to some more good information on LBD and MCI from Mayo and the Habit Folks, the Meeting of the Minds Conference, my friends with Alz Assoc there…..and others…..
and some tweaks in my treatment plan, from Dr. Boeve….

I feel extremely grateful today. More than I could ever say. And for that….I thank the God of my Understanding……

and…..I thank a lot of people….Thanks to all of you….you know who you are….and if you are not sure….Thanks…..

Live Today.

_________________
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 Sat Mar 17, 2012 5:49 pm, edited 1 time in total.



Sat Feb 25, 2012 12:27 am
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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..Meeting of the Minds(
Craig,
Hope it's a wonderful trip! Sure sounds like you're packing a lot in.
Robin


Sat Feb 25, 2012 1:15 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..Meeting of the Minds(
thanks Robin….

I am going to MAKE it a wonderful trip….

Packing as much in what time I have……is my motto…..

that is about…..like……

it takes me a month to do what someone else can do in a day……

actually once I get on the road….it will be leisurely this time…..by design…..

I can't push it…..but then…everyone here already knows that….

I can still dream in real life time though….even if I can't live it….boy can I dream……lol…..RBD….you know…..

Fortunately…I am able to do a bit…..I cherish each and every bit….
as each and every day….the bits get smaller…

so….yes…..packing it in…..with lots of time to recover between bits…..
and my own bed in the campground to recover in….

Robin…..I will be sure to share whatever I learn about the DATscans

_________________
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 Feb 25, 2012 1:36 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..Meeting of the Minds(
Praying you have an enjoyable and highly successful trip, Craig!

_________________
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.


Sat Feb 25, 2012 1:48 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Headed to Mayo…once again…DATscan..Meeting of the Minds(
Craig, you are my kind of hero - honestly - the way you are fighting this makes me so proud of you. Your positive attitude and fighting spirit is wonderful to beholld and puts me to shame for moaning about the small worries in my life. Way to go, and enjoy.
God Bless,
Gerxx

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


Sat Feb 25, 2012 10:18 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Headed to Mayo…once again…DATscan..Meeting of the Minds(
craig..

have a safe and enjoyable trip.. learn lots....

we are rooting for you, all the way..
cindi

_________________
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..


Sat Feb 25, 2012 11:21 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..Meeting of the Minds(
Pat…Prayer has made a lot of difference….more coincidence and planet alignment than the law allows….
and the day/night shades work if one stays patient….and since I am forever patient….(inside joke…another world)

my middle child is following her first surgery patient in nursing school….an 81 yr old knee replacement…..

Ger…thanks for the kind words….I think of you and your Dad often….I so much wanted to cross the pond again….(maybe one day)….to go back and see the 1600's cottage where I lived while stationed at RAF Alconbury in the 70's…..I can picture me and your Dad sitting in a Pub….back then….maybe at the Ferry Boat Inn…Duck or Grouse….those 4 foot ceilings….you know….

Cindi….learn I will….retain? …..hopefully share…..
I need and will take all the help and rooting I can get…..

as you know…..all of you….this disease is so isolating….and the isolation you feel as caregivers….is real, bad….really bad….awful…..horrible…nasty…crummy….and it hurts…..

well as a patient…..there are no words….lol….pun intended….sometimes I actually have no words….well, I do have the words…..but they won't come out…..or only the first part of the sound, maybe a few times, maybe nothing…..but, then even if I could say the some of the words I would use…..I probably shouldn't…..at least not in public….and especially not without a lot of prayer……just after….

as a patient…..it stinks…..we are isolated even from the ones standing right next to us….

……..
I am so fortunate to be where I am in the disease, where I am in my treatment, where I am in Life…..with this disease……(now without the disease…..not so much)

I come here….to fight the isolation….
I go to Mayo….to fight the isolation….

this trip….will be a lot of fighting…..

a lot of learning……

I take it on myself to share, share, with everyone I meet…..
so, then, I must learn more….
so I can fight the good fight….

Live Today. Tomorrow?

_________________
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 Feb 25, 2012 12:40 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Headed to Mayo…once again…DATscan..Meeting of the Minds(
My day/night shades are on their way out, as you may know [from another 'world']. Broken string on one and just a matter of time with the other. Will replace them with something else, more than likely. If you have not ripped yours down and tossed them out with the trash by now it shows that you have patience, indeed! ;-) Godspeed!

_________________
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.


Sat Feb 25, 2012 1:11 pm
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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 of luck Craig!
I wish I had your wonderful attitude....am working on it!! you are an inspiration!
Have a safe and great trip!!

_________________
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........


Sun Feb 26, 2012 8:46 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..Meeting of the Minds(
Pat…..you do know….I had to kidding about the day/night shades…..
what a torture device….
hopefully mine will last for as long as I need them…

Tonya….

thanks for the kinds words…..

I admire your attitude.

Going to try to get us some good info this trip…..

_________________
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


Mon Feb 27, 2012 1:14 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..Meeting of the Minds(
DATscan……done today….this was different from an MRI, different from a CAT scan, different from a PET scan….

did I say….it was different?

the scanning device is flat plates that rotate around your head…..very slowing….in very small incremental advancement…..
takes a long……time………..staying still…..

no trouble or anything noticeable from the injections…...

results…..in a day or two…..

……

_________________
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 15, 2012 1:16 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..Meeting of the Minds(
Hope the results look good, Craig!

_________________
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 15, 2012 10:42 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Headed to Mayo…once again…DATscan..Meeting of the Minds(
fingers crossed.. been sending you good thoughts..
cindi

_________________
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..


Thu Mar 15, 2012 6:31 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Headed to Mayo…once again…DATscan..Meeting of the Minds(
xxx

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


Thu Mar 15, 2012 7:06 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..Meeting of the Minds(
Craig,
As I was reading an interesting article in the most recent issue of the journal Neurology on DaT scans, I thought about you. This scan is a type of SPECT. I think not many institutions around the world have SPECT scanners. You are at one of the best!
Robin


Thu Mar 15, 2012 8:15 pm
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