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BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
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 Headed to Mayo... My wife and I are loading up our Travel Trailer to head to Mayo Clinicâ¦my appt is next week...
we have spent the last week doing some mods on the TT to make it easy and comfortable tripâ¦
plan on spending up to two weeks on the road, will be in MN four or five daysâ¦..
I am working my 'No Regretsâ¦Bucket List Tour'â¦.
always open to ideas of fun, interesting and/or beautiful places to seeâ¦.
andâ¦.always open to sharing a little time over a cup of coffeeâ¦.
I am excited about my wife making the trip to Mayo this timeâ¦.
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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
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| Wed Aug 10, 2011 11:45 am |
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Tonya
Joined: Wed Mar 02, 2011 1:04 pm
Posts: 242
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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
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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........
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| Wed Aug 10, 2011 1:45 pm |
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robin
Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Re: Headed to Mayo... Have a good trip and a good appt!
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| Wed Aug 10, 2011 4:27 pm |
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LTCVT
Joined: Fri Jan 15, 2010 9:33 pm
Posts: 2822
Location: Vermont
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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
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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.
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| Sat Aug 13, 2011 12:19 pm |
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BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
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Re: Headed to Mayo... we are in Rochesterâ¦.
we spent a night in Indianapolis, then two nights in Wisconsin Dellsâ¦with a boat trip on the upper Dellsâ¦.
appts start Monday morningâ¦.
what a reliefâ¦temperatures are 20+ degrees lowerâ¦I get to stay outside for more than five minutes without dehydrating...
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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
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| Sun Aug 14, 2011 5:33 pm |
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Tonya
Joined: Wed Mar 02, 2011 1:04 pm
Posts: 242
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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........
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| Sun Aug 14, 2011 6:01 pm |
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Tonya
Joined: Wed Mar 02, 2011 1:04 pm
Posts: 242
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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........
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| Mon Aug 15, 2011 2:25 pm |
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mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3006
Location: WA
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Re: Headed to Mayo... Yep, hoping your appointments--and your trip!--go well. Let us know what transpires. God bless!
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Pat [67] married to Derek [83] for 37 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011.
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| Mon Aug 15, 2011 2:38 pm |
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BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
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Re: Headed to Mayo... Day one done!
â¦almostâ¦gotta love PET scansâ¦steak tonite!
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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
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| Mon Aug 15, 2011 5:41 pm |
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Tonya
Joined: Wed Mar 02, 2011 1:04 pm
Posts: 242
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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........
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| Mon Aug 15, 2011 7:55 pm |
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Ger
Joined: Mon Feb 21, 2011 9:55 pm
Posts: 354
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Re: Headed to Mayo... Good luck Craig xx
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cared for Dad who passed away on January 28th 2013 R.I.P.
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| Tue Aug 16, 2011 12:15 pm |
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BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
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Re: Headed to Mayo... had regular PET scan and PIB PET scans this morningâ¦.see Dr. Boeve this afternoon...
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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
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| Tue Aug 16, 2011 3:12 pm |
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robin
Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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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.
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| Tue Aug 16, 2011 6:43 pm |
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BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
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Re: Headed to Mayo... Robinâ¦.I feel so grateful for so much in my life right nowâ¦.
and my being at Mayo is at the top of the listâ¦
I met with Dr. Boeve todayâ¦.meet with him tomorrow to work out future treatment planâ¦
I want to be sure before I state anything on the forumâ¦.but let me say thisâ¦
my current treatment has positive results so farâ¦.both perceived by me and by Mayo measurementsâ¦.
further details later...
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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
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| Tue Aug 16, 2011 11:33 pm |
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dorthea
Joined: Sat Oct 06, 2007 4:28 pm
Posts: 670
Location: LA
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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"
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| Wed Aug 17, 2011 12:59 am |
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