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 Headed to Mayo... 
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Headed to Mayo...
Craig,

That's great news!! Looking forward to hearing more! So glad you are getting to see Dr. Boeve!!!

Take care,


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 17, 2011 8:01 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo...
looks like I am going to be here for a while longer….have a few appts set up for about a week…

I am going to see a autonomic specialist for sweating and temperature regulation….starting with a sweat test….

and a dermatologist…to clear up the doubt about a drug reaction that may have been caused by Nuvigil…or maybe not….(local dermatologist guessed it was Nuvigil... :x

and…..still waiting on my treatment plan going forward….

also going to look into a couples/caregiver program that Mayo has called 'HABIT' for early dementia…MCI….

did I say….I love Mayo?

_________________
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 17, 2011 10:32 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Headed to Mayo...
Sounds like you are in good hands, Craig! :P

_________________
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.


Wed Aug 17, 2011 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...
Pat…indeed I am…

so nice having the camper here, too…

all the comforts of home…
waiting for my next appt….surfing on mayo's wifi….

_________________
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 17, 2011 3:18 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Headed to Mayo...
Do they have RV parking sites there?

_________________
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.


Wed Aug 17, 2011 3:40 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo...
Pat….no RV sites at Mayo….but the campground we are at is set up to get mayo visitors…..10 minute drive….shuttle if you wanted to do that….

I meant all the comforts of home in the RV…..

and separately I am again enjoying Mayo wifi right now outside the lobby….waiting for my wife to pick me up after another appt….

Mayo is the way medicine should be practiced…at least its the best that I have seen in my travels….

it is as close to being on the TV show 'House' as I have ever experienced…..(even with a terminal, seldom heard of diagnosis) :lol:

only difference is the bed….and I would rather be in my camper….

I am sitting outside the building typing this and the weather is absolutely perfect…..blue skies, beautiful flowers drifting in the breeze...

even the sick people are upbeat

_________________
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 17, 2011 4:13 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Headed to Mayo...
So glad the experience is a good and complete one....I always wished for the last 11 years I could have seen Dr. House!!! Glad you are getting even better as Dr. Boeve seems so very nice!!! Bonus!

Thanks for the updates!! Good luck with everything!

_________________
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 17, 2011 7:17 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo...
got my treatment plan today….

we are going to increase Aricept…back to 20mg

add Klonopin back in….

and add Provigil back in….after we rule out reaction to Nuvigi in the past…

we talked about a few other drugs in the future….

we have added a swallow test to list of things to do before I leave….

so….torture on schedule for tomorrow….swallow test and sweat test…..should be a real fun 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 Aug 18, 2011 9:30 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Headed to Mayo...
Hi Craig,

Sounds like a plan.....

I've had a swallow test - long before my LBD dx.....I can't remember why I had it - it wasn't bad at the time....was since I had symptoms though....hope tomorrow won't be too bad for you!!

Thanks for the updates!!!

Take care,

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........


Thu Aug 18, 2011 10:28 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo...
on Tues nite…I met my first comrade with Lewy…

my wife and I were invited to Dinner by Jeanne and Coy….

we met at a restaurant a few minutes after my appt with Dr. Boeve…

we talked for hours about so much….

it was so enlightening and encouraging….

to see such a wonderful caregiver like a Jeanne and such an inspiring man as Coy…

and see them together, we had a great time…..next Dinner is on us…real Cajun food...

_________________
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 Aug 18, 2011 10:45 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Headed to Mayo...
:P

_________________
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........


Thu Aug 18, 2011 11:15 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Headed to Mayo...
Craig- sounds like things are going well for you. I'm so happy for you! Keep doing what you're doing, sounds like it's working, and enjoy your trip!
Ellen 8)

_________________
Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Thu Aug 18, 2011 11:49 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo...
leaving Las Vegas……

…okay…not really…

Leaving Mayo….

Five days of torture…. :lol:

hooking up the RV….singing and humming a little Huey Lewis……'Got a New Drug'…..

heading back thru Wisconsin Dells and cash in my ticket for the Duck Boats tour on the lower Dells and then slowly make my way back to reality….

my house in Knoxville, is set to foreclose on Weds…

we have been trying to do a short sale….every contract falls apart…..foundation issues estimates are at $40K + now…..

but….I have a roof on wheels over my head…so I am not worried….

my neuro psych exam showed improvement (or fluctuation)…
my PET scan showed improvement (or fluctuation)…

both of those measurable improvements would be in areas expected with a positive response to an Aricept type drug…if that is possible….

I'll take it !!! and run with it !!!

I asked him repeatively if he still believed in his diagnosis…..

Dr. Boeve said he is envious of my plan to travel in my RV…and wants me to have fun….I will faithfully obey those orders….

leaving…..Mayo….

_________________
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 Aug 20, 2011 1:33 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Headed to Mayo...
Sound great, Craig! And we know that life on the road is the best there is, right? :P

_________________
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 Aug 20, 2011 2:47 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Headed to Mayo...
Craig, Sounds like it was a positive visit to Mayo. I love your attitude, stay strong and continued good luck with the meds.
Take care, drive safely,
Gerry

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Aug 20, 2011 6:30 pm
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