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 Headed to Mayo... 
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Headed to Mayo...
My wife and I are loading up our Travel Trailer to head to Mayo Clinic…my appt is next week...

we have spent the last week doing some mods on the TT to make it easy and comfortable trip…

plan on spending up to two weeks on the road, will be in MN four or five days…..

I am working my 'No Regrets…Bucket List Tour'….

always open to ideas of fun, interesting and/or beautiful places to see….

and….always open to sharing a little time over a cup of coffee….

I am excited about my wife making the trip to Mayo this time….

_________________
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


Wed Aug 10, 2011 11:45 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Headed to Mayo...
That's great news Craig! I don't know what route you will take but I hope you enjoy the trip!

Best,

Tonya

_________________
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 Aug 10, 2011 1:45 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...
Have a good trip and a good appt!


Wed Aug 10, 2011 4:27 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Headed to Mayo...
Craig - have a good trip and I hope things go well at your dr. appt. Are you ok to drive? Especially pulling a travel trailer? Be safe and bon voyage! 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.


Sat Aug 13, 2011 12:19 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo...
we are in Rochester….

we spent a night in Indianapolis, then two nights in Wisconsin Dells…with a boat trip on the upper Dells….

appts start Monday morning….

what a relief…temperatures are 20+ degrees lower…I get to stay outside for more than five minutes without dehydrating...

_________________
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 Aug 14, 2011 5:33 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Headed to Mayo...
That's great Craig!!! I've been to the dells...many years ago - didn't do a boat ride though...good for you!!! Best wishes for your appt tomorrow!!!

Best,

Tonya

_________________
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 Aug 14, 2011 6:01 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Headed to Mayo...
Hi Craig,

Thinking of you today and hoping your appt with Dr. Boeve is going very well!!!!


Best wishes,


Tonya

_________________
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........


Mon Aug 15, 2011 2:25 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Headed to Mayo...
Yep, hoping your appointments--and your trip!--go well. Let us know what transpires. God bless!

_________________
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.


Mon Aug 15, 2011 2:38 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo...
Day one done!

…almost…gotta love PET scans…steak tonite!

_________________
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 Aug 15, 2011 5:41 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Headed to Mayo...
I hear ya! Good for you! Steak!!! Will you see Dr. Boeve again this week? What day is your PET? Did you have it today??

_________________
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........


Mon Aug 15, 2011 7:55 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Headed to Mayo...
Good luck Craig xx

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


Tue Aug 16, 2011 12:15 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo...
had regular PET scan and PIB PET scans this morning….see Dr. Boeve this afternoon...

_________________
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


Tue Aug 16, 2011 3:12 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...
Wonderful that you got a PIB PET. You are one of the few in the world to receive this sort of scan. Thanks for keeping us posted.


Tue Aug 16, 2011 6:43 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo...
Robin….I feel so grateful for so much in my life right now….

and my being at Mayo is at the top of the list…

I met with Dr. Boeve today….meet with him tomorrow to work out future treatment plan…

I want to be sure before I state anything on the forum….but let me say this…

my current treatment has positive results so far….both perceived by me and by Mayo measurements….

further details later...

_________________
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


Tue Aug 16, 2011 11:33 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 716
Location: LA
Post Re: Headed to Mayo...
Craig, may I say that many of us are watching what you do and I might add "cheerleading" for you.

Dorthea


Not a Cajun but from bayou country, Ponchatoula

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"See this lady, she's 85, but she's nice"


Wed Aug 17, 2011 12:59 am
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