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 Headed to Mayo... 
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Headed to Mayo...
Craig, You are an inspiration to all of us. Best wishes to you and your family.
Donna

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Sat Aug 20, 2011 8:28 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Headed to Mayo...
Craig,

You are truly an inspiration!! Enjoy the beautiful weather in Wisconsin and your RV! I'm so glad your experience at Mayo was such a positive one and that you even got to meet Jeanne and Coy!!! Have a safe trip!!!

Best wishes,

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........


Sat Aug 20, 2011 9:30 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...
Incredible that a PET scan showed improvement. Could fluctuation really account for this?


Mon Aug 22, 2011 3:35 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 don't know….about the fluctuation…

I asked Dr. Boeve if having a few tons of stress removed could possibly show up on the PET scan….he said he didn't think so…(me…I'm trying to wrap my head around all of this... :lol: )

He indicated that there isn't enough historical data yet to make much of PET scan changes in six months of time…most measurements are in a year and are obvious negative in nature…or subtle negative

But, I watch him compare the images…and listened to his explanation….improvement…

if…I remember correctly he mostly dismissed the notion of fluctuation…


Pat….RV'ing…on the road again….the only way to drive…with all the comforts of home…with you...

I have spent all day on the phone and faxing and taxing my mental abilities sparing with those who are well practiced in saying 'no' and not caring much about it….

it looks like…I lose my house at 10am Weds morning…it will be a good thing….it has been a negative drag on my internal resources…it will free me up to live again…or like never before….

it just hurts to not be in control…and see oneself not treated fairly…I am not being allowed to short sale my house for what's its worth….long story….and just maybe you will read about it or see it on TV….

I have had my Congressman involved in the last month…the regular players…Wells Fargo…Freddie Mac….have not played nice…..there is a story here….it is too involved for this venue…just stay tuned….

I don't begrudge them getting their house or all of the money….its….'The Rest of the Story' …..that is interesting...

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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


Tue Aug 23, 2011 7:48 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo...
Foreclosure postponed another month….

powers of persuasion not totally lost…

hopefully we can get that short sale done this month…

I guess we can say that the trip to Mayo is officially over….

this is much too much like reality….

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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


Wed Aug 24, 2011 2:57 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Headed to Mayo...
I'll pray for you, Craig!

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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 24, 2011 3:39 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Headed to Mayo...
I wish the the best possible outcome Craig!

And good for you for fighting the good fight and contacting a congressman....I am taking on a battle myself with "a large corporation".....some things simply are not right, ethically, morally or legally! What you are doing will help many others! Thank you! Hope I have the energy for my battle (but I have my husband to help me with this fight) and that it might help even one other person......You inspire me! If we all stand up in the face of injustice someday they will hear our collective voices drowning their's out!

_________________
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 24, 2011 6:32 pm
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