| Author |
Message |
|
Tonya
Joined: Wed Mar 02, 2011 1:04 pm
Posts: 250
|
 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 |
|
|
|
BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
|
Re: Headed to Mayo... looks like I am going to be here for a while longerâ¦.have a few appts set up for about a week⦠I am going to see a autonomic specialist for sweating and temperature regulationâ¦.starting with a sweat testâ¦. and a dermatologistâ¦to clear up the doubt about a drug reaction that may have been caused by Nuvigilâ¦or maybe notâ¦.(local dermatologist guessed it was Nuvigil...  andâ¦..still waiting on my treatment plan going forwardâ¦. also going to look into a couples/caregiver program that Mayo has called 'HABIT' for early dementiaâ¦MCIâ¦. did I sayâ¦.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 |
|
|
|
mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3018
Location: WA
|
Re: Headed to Mayo... Sounds like you are in good hands, Craig! 
_________________
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.
|
| Wed Aug 17, 2011 11:21 am |
|
|
|
BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
|
Re: Headed to Mayo... Patâ¦indeed I amâ¦
so nice having the camper here, tooâ¦
all the comforts of homeâ¦
waiting for my next apptâ¦.surfing on mayo's wifiâ¦.
_________________
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 |
|
|
|
mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3018
Location: WA
|
Re: Headed to Mayo... Do they have RV parking sites there?
_________________
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.
|
| Wed Aug 17, 2011 3:40 pm |
|
|
|
BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
|
Re: Headed to Mayo... Patâ¦.no RV sites at Mayoâ¦.but the campground we are at is set up to get mayo visitorsâ¦..10 minute driveâ¦.shuttle if you wanted to do thatâ¦. I meant all the comforts of home in the RVâ¦.. and separately I am again enjoying Mayo wifi right now outside the lobbyâ¦.waiting for my wife to pick me up after another apptâ¦. Mayo is the way medicine should be practicedâ¦at least its the best that I have seen in my travelsâ¦. it is as close to being on the TV show 'House' as I have ever experiencedâ¦..(even with a terminal, seldom heard of diagnosis)  only difference is the bedâ¦.and I would rather be in my camperâ¦. I am sitting outside the building typing this and the weather is absolutely perfectâ¦..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 |
|
|
|
Tonya
Joined: Wed Mar 02, 2011 1:04 pm
Posts: 250
|
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 |
|
|
|
BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
|
Re: Headed to Mayo... got my treatment plan todayâ¦.
we are going to increase Ariceptâ¦back to 20mg
add Klonopin back inâ¦.
and add Provigil back inâ¦.after we rule out reaction to Nuvigi in the pastâ¦
we talked about a few other drugs in the futureâ¦.
we have added a swallow test to list of things to do before I leaveâ¦.
soâ¦.torture on schedule for tomorrowâ¦.swallow test and sweat testâ¦..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 |
|
|
|
Tonya
Joined: Wed Mar 02, 2011 1:04 pm
Posts: 250
|
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 |
|
|
|
BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
|
Re: Headed to Mayo... on Tues niteâ¦I met my first comrade with Lewyâ¦
my wife and I were invited to Dinner by Jeanne and Coyâ¦.
we met at a restaurant a few minutes after my appt with Dr. Boeveâ¦
we talked for hours about so muchâ¦.
it was so enlightening and encouragingâ¦.
to see such a wonderful caregiver like a Jeanne and such an inspiring man as Coyâ¦
and see them together, we had a great timeâ¦..next Dinner is on usâ¦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 |
|
|
|
Tonya
Joined: Wed Mar 02, 2011 1:04 pm
Posts: 250
|
Re: Headed to Mayo...
_________________
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 |
|
|
|
empritchard
Joined: Mon Feb 14, 2011 10:22 pm
Posts: 173
Location: Portland, Or
|
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 
_________________
Ellen 57, caregiver for mom Marion 80, dx LBD Feb 2011
|
| Thu Aug 18, 2011 11:49 pm |
|
|
|
BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
|
Re: Headed to Mayo... leaving Las Vegasâ¦â¦ â¦okayâ¦not really⦠Leaving Mayoâ¦. Five days of tortureâ¦. hooking up the RVâ¦.singing and humming a little Huey Lewisâ¦â¦'Got a New Drug'â¦.. 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 realityâ¦. my house in Knoxville, is set to foreclose on Weds⦠we have been trying to do a short saleâ¦.every contract falls apartâ¦..foundation issues estimates are at $40K + nowâ¦.. butâ¦.I have a roof on wheels over my headâ¦so I am not worriedâ¦. 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 drugâ¦if that is possibleâ¦. I'll take it !!! and run with it !!! I asked him repeatively if he still believed in his diagnosisâ¦.. Dr. Boeve said he is envious of my plan to travel in my RVâ¦and wants me to have funâ¦.I will faithfully obey those ordersâ¦. leavingâ¦..Mayoâ¦.
_________________
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 |
|
|
|
mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3018
Location: WA
|
Re: Headed to Mayo... Sound great, Craig! And we know that life on the road is the best there is, right?
_________________
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.
|
| Sat Aug 20, 2011 2:47 pm |
|
|
|
Gerry
Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
|
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 |
|
|
