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 Headed to Mayo…once again…DATscan..UPDATE: results 
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
craig..
we ARE hearing you!!! and we are all wishing you a much better day, today.. stay strong.

thank you for sharing.. you are such an inspiration, to all of us!!!
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 11-13,released to memory care..


Thu Mar 22, 2012 12:05 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
Craig,
So sorry you had a bad day - I hope today is better for you......Thinking of you.....
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........


Thu Mar 22, 2012 12:26 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…once again…DATscan..UPDATE: results
Craig,
Hope today is a better one for you.
Robin


Thu Mar 22, 2012 12:40 pm
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Joined: Tue Mar 29, 2011 3:09 pm
Posts: 20
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
Craig,
Praying that Friday is a great and positive day for you.

Marilyn


Fri Mar 23, 2012 1:59 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
Back in Knoxville…..

a mix of bad and good days….

good day today….

I started taking 1200 mg of CoQ10 while at Mayo….before that I was taking 200mg…..

cost was a factor before that…..now 1200 mg will cost about $45 @ month at Sams……..
but…..every good thing…..has a chance to bite you…..somewhere….
all of those sebaceous cysts on my back and neck…..decided that CoQ10 is a great thing, too…..
now I have a inflamed tennis ball under the skin on the back of my neck…..again……
will the fun ever cease? tommorrow will have its share of pain….

the real reason I went to Mayo this time…..to save my wife's life…..
mission accomplished….step one….
If you ever get the chance to meet with Dr. Boeve…..he is a real great Man….one of the best I have ever met….

We spent two weeks at Mayo chasing a complicated situation for her…..but she has a treatment plan……and a graph and a prognosis that goes up…..

it was a cute scenario….me pushing her around in a wheelchair…..(or was the wheelchair dragging me along?)….
okay….a few times I had someone else push the dang thing…..
when I arrived I was a few steps away from pneumonia….a bad case of bronchitis……

sometimes…..it helps to look back a little….to be able to see ahead….

If you ever……personally….find yourself with a complicated medical situation….and you can't get answers…..
Don't rule out a trip to Mayo Clinic…..it is an experience that I don't think…..you can get….anywhere else….

they aren't perfect…..but…..neither is a cruise missile…..
and both are my first choices…..

thanks to all of you for the good vibes…..sometimes it is so lonely, in the middle of the biggest crowd….

_________________
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 Mar 27, 2012 11:53 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
Geez, Craig. I wish I'd picked up on this thread in February. I was at the Meeting of the Minds conference and would have loved to have met you!

I registered as a professional specifically because I wanted to meet Dr. Boeve and hear what he had to say. I'd pictured in my mind a tall, gaunt, white-haired wise old doctor. Boy, was I wrong! I almost didn't go because of Mom passing in February. But I'm glad I did. I really want my uncle to see Dr. Boeve, as he can no longer hide his dementia. That's really up to my aunt and cousins, but because of Mom and because Mom's doctor, (JR McCarten at the U of Mn) thought that what their father had was probably LBD, I feel very anxious to get the two of them together. My aunt and uncle are only a short distance from Rochester, so I hope my cousin can get them there.

Some day, Craig, I wonder if you would be willing to share the things you have written for us with others beyond the forum, say in a book or journal. I feel it is so important for caregivers to know what you are thinking and going through and for others entering the life to know that they aren't alone and it isn't over yet. I know it is very personal and I don't want to push, but I want you to know that there is great value in what you are doing for us.

I hope you enjoyed the Meeting of the Minds and St. Patrick's Day in St. Paul. This was my 3rd (or 4th?) time. I think it's time for them to expand it into a day and a half or two days. It's become HUGE!

I wish I could have met you - and Jeanne. Maybe next year. Dr. Boeve's first breakout session was excellent.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Mar 28, 2012 12:31 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…once again…DATscan..UPDATE: results
Craig,
Sorry to hear about your wife's issues too. It must've been quite a sight -- your pushing her in a wheelchair. Glad you are back home.
Robin


Wed Mar 28, 2012 12:48 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
Kate…

I didn't get to the Conference….or my Habit reunion….
my wife was on an hour to hour watch for me to bring her to ER at St. Mary's over that weekend….
but, things had cooled down by Sunday….so we were able to meet up with two couples that I had attended the Habit Program with in the Fall….
one of the couples were on the Panel of person's with MCI at the Conference…..
we met for brunch Sunday at a place just a few blocks from the Cathedral in St. Paul….after they had attended Mass….
(and Pat….we then hit Camping World…..pushing it just a little bit much….)

I did get my DATscan….
I did get a Habit program Booster appointment….
but the rest of the trip was for the real priority….
I wouldn't have had my DATscan until probably August……when I return for my Annual Research stuff…..

My wife has to return…..sometime this summer….I plan to return……finances say…..what did you say?
so…..once again….hopefully one trip can accomplish multiple goals……

now some will snicker….at this….
I have Faith….that……that very scenario will happen……this summer……
Faith…..has carried me 5 times to Mayo Clinic since last March…..

not one of those trips….was money available beforehand……
I have sold just about everything imaginable to convert to fuel….
and have found a lot of really generous caring people….

so…..I will put you on my list….to contact for the next trip…..
we didn't really have any time to visit on this trip…..
we never caught up with Jeanne or Coy…..haven't heard her post much lately…..hope everything is well with them….

….just got an appointment to get my tennis ball cyst on my neck drained today…..isn't life just so much fun?

so have to run……

Kate….I would need an accomplice to put everything together…..for the writing thing….I will find one……I have a few more missions to accomplish in this life….
I can't stay on track….imagine that…..
at least not without help……at least less and less…..
so I know I need to be getting that help……now…..

it is a hard decision to make 'everything' public……
it has consequences…..
but so does…..not…….

_________________
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 Mar 28, 2012 1:25 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Headed to Mayo…once again…DATscan..UPDATE: results
Robin,

I want to share my results with you…..

I want to show you how much your efforts mean to me….

_________________
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 Mar 28, 2012 1:29 pm
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