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 Headed to Mayo…HABIT program…Update day 4…. 
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Headed to Mayo…HABIT program…Update day 4….
here we go again….

I am so a lucky guy….and I know it….must be the delusions... 8)

I am headed to Mayo for a two week program call HABIT…..google Habit…Mayo…..

two weeks of learning how to live with MCI…..early stuff….quality of life….full program…..

patient and caregiver…..

looks like I will have two with me….

bringing my wife and my oldest daughter…..I am a hard case…..a tough nut….

it starts on the 24 of October and runs for two weeks….

so I will be in Rochester and thereabouts….anyone for coffee….

Jeanne….I owe you and Coy some real Cajun food….so you guys get better…..

so….alot to do right now….looks like house might foreclose on the 19th…..

man….life just doesn't give me any breaks….just like everyone else….

so….I am looking at emptying the house into storage before heading up there…..no rest for the wicked…..

thank God and Mayo for astronaut speed….I am back on Provigil….nectar of the Gods….

also upped Aricept to 20mg….

so….brain and brawn…..drug induced…. :lol:

_________________
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 Fri Oct 28, 2011 12:01 am, edited 1 time in total.



Thu Oct 06, 2011 3:24 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Headed to Mayo…HABIT program...
Hope the program will be helpful, Craig. Prayers and hugs.

_________________
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 Oct 06, 2011 4:54 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…HABIT program...
Wonderful that you are plugged in to the Mayo scene!


Thu Oct 06, 2011 6:17 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo…HABIT program…UPDATE: we are here….
Pat,
many prayers answered lately, keep em coming…

Robin,
yes….I am very grateful to hooked up with Mayo….

UPDATE:

I arrived today, setup my camper in campground….(Pat…as you know…..only way to travel… 8) have my two inflatable kayaks in the truck…too… )

My oldest daughter came with me…so the two of us are here….

Ready to get started in the morning….pumped up…probably won't sleep tonite….like that is abnormal :lol:

Two weeks here in Rochester….anyone in the area want to meet for coffee and share with my daughter…we would love to meet you….

_________________
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 Oct 24, 2011 12:59 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo…HABIT program…Update day 4….
Update:

Day 4….

New Habits…imagine that….
I have hope this is going to help me…big time…

Yoga?….

_________________
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


Fri Oct 28, 2011 12:03 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Headed to Mayo…HABIT program…Update day 4….
glad to hear the news craig...
thanks for letting us know how you are doing....

_________________
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 1-14,released to memory care..


Fri Oct 28, 2011 3:29 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo…HABIT program…Update back home
wow….

I have a lot to say….but…
it will have to wait….

it is time for a another cup of Chock Full O' Nuts….(always wanted to try that…DONE)

I feel like a new person…..

I am going to take my time and put on paper what I really think about the program…

I like the results so far….I am going to work hard to keep those results for as long as I can….

I had my daughter's help….and will continue to….this is not a solo program….

Let me say this much for now…..I will back this up with more later….

If you are a person with Cognitive Disorder NOS (Not Otherwise Specified) or Mild Cognitive Impairment (MCI)……or a partner or caregiver or family member or friend or someone who is…..
If that person can still function independently….

This program is a life changer…..or to be more specific….a life extender…..

Please take the time to look into it….if you want that independence to last longer and be better for everyone…..

_________________
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 Nov 06, 2011 3:32 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Headed to Mayo…HABIT program…Update day 4….
Craig, all I can say is: Wow! :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.


Sun Nov 06, 2011 5:03 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Headed to Mayo…HABIT program…Update day 4….
I'm so happy for you, Craig. You are an inspiration!!! :P
Ger xx

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


Sun Nov 06, 2011 6:00 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…HABIT program…Update day 4….
Craig,
Glad to hear all went so well. Thanks for the new term - Cognitive Disorder NOS. Does Mayo think you have Cognitive Disorder NOS?
Robin


Sun Nov 06, 2011 6:14 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo…HABIT program…Update day 4….
Robin,

Mayo has me tagged MCI….Lewy Body….and a whole bunch of other unpleasant things….
I guess when I eventually lose my independence….we can drop the (M)….mild….
I do realize that tags have broader meanings and uses than just being correct….
Pleasantries, niceties, access, legal….take your pick….

I was tagged Cognitive Disorder NOS 4 years ago…..and again 1 year ago….pre Mayo….
by Neuro Psych Exams in Knoxville area….one at Patricia Neal Rehab Center…..just not bad enough…..I guess…..

so, lumping that in here…..is all from me….and the rough road of experience….

Pat,
Ger,

thanks….for the kind words...

_________________
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 Nov 06, 2011 7:43 pm
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Joined: Tue Mar 29, 2011 3:09 pm
Posts: 20
Post Re: Headed to Mayo…HABIT program…Update day 4….
Hi Craig,

You sound so upbeat it is contagious! Thank you very much for sharing with all of us "out here". I eagerly look for new posts from you on how you and your daughter are doing. I think I can safely say that each of us who read what you write learn something that we can apply to benefit the ones we care for. Please keep us updated.

Prayers,
Marilyn


Mon Nov 07, 2011 12:31 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo…HABIT program…Update day 4….
robin,

thanks for the kind words…too…

Marilyn,

its Show Time! or part time Superman!

you know….I hope I am….

but, today….I face fear….real fear….

I am alone today….just me…

a place where I can't exist for very much longer…

after being immersed and bathed in love, kindness, understanding, trust-fall building…never being left alone…..
never being left to do nothing…
privileged to be doing that with some of the worlds greatests…..on both sides of the tables….

the whole nine yards….

I learned there, that everyone deals with this differently….one size does not fit all….

this is my way…

All of you…are my Family….you are my refuge….I feel safe here…I come here to not be alone…
I come here to learn how to find…real people like you...

_________________
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 Nov 07, 2011 1:18 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Headed to Mayo…HABIT program…Update day 4….
craig.. thank you for being you and sharing so freely..

like others have said, i have learned so much from you.. i so appreciate the time and thought that goes into them... hubby doesnt share his thoughts or feelings, especially about lewy.. so by reading yours and tonyas posts, it helps me to guess a little better what he might be thinking and what i can do to help..

glad you learned so much from your stay.. and happy your daughter was their with you..

take care!!
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 1-14,released to memory care..


Mon Nov 07, 2011 11:32 am
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