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cdw
Joined: Fri Nov 05, 2010 11:30 pm Posts: 298 Location: southern cali
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 Re: Headed to Mayoâ¦once againâ¦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
_________________ CG for hubby. started showing symptoms in 2000, at 55, diagnosed at with AD at 62, LB at 64.. vietnam vet.. has ptsd, which doubled the chances for dementia...sprayed with agent orange. showing some signs of parkinsons.
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| Thu Mar 22, 2012 12:05 pm |
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Tonya
Joined: Wed Mar 02, 2011 1:04 pm Posts: 242
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 Re: Headed to Mayoâ¦once againâ¦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........
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| Thu Mar 22, 2012 12:26 pm |
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robin
Joined: Fri Aug 11, 2006 1:46 pm Posts: 4811 Location: SF Bay Area (Northern CA)
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 Re: Headed to Mayoâ¦once againâ¦DATscan..UPDATE: results
Craig, Hope today is a better one for you. Robin
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| Thu Mar 22, 2012 12:40 pm |
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mbell
Joined: Tue Mar 29, 2011 3:09 pm Posts: 20
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 Re: Headed to Mayoâ¦once againâ¦DATscan..UPDATE: results
Craig, Praying that Friday is a great and positive day for you.
Marilyn
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| Fri Mar 23, 2012 1:59 am |
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BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm Posts: 386 Location: East TN
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 Re: Headed to Mayoâ¦once againâ¦DATscan..UPDATE: results
Back in Knoxvilleâ¦..
a mix of bad and good daysâ¦.
good day todayâ¦.
I started taking 1200 mg of CoQ10 while at Mayoâ¦.before that I was taking 200mgâ¦..
cost was a factor before thatâ¦..now 1200 mg will cost about $45 @ month at Samsâ¦â¦.. butâ¦..every good thingâ¦..has a chance to bite youâ¦..somewhereâ¦. all of those sebaceous cysts on my back and neckâ¦..decided that CoQ10 is a great thing, tooâ¦.. now I have a inflamed tennis ball under the skin on the back of my neckâ¦..againâ¦â¦ will the fun ever cease? tommorrow will have its share of painâ¦.
the real reason I went to Mayo this timeâ¦..to save my wife's lifeâ¦.. mission accomplishedâ¦.step oneâ¦. If you ever get the chance to meet with Dr. Boeveâ¦..he is a real great Manâ¦.one of the best I have ever metâ¦.
We spent two weeks at Mayo chasing a complicated situation for herâ¦..but she has a treatment planâ¦â¦and a graph and a prognosis that goes upâ¦..
it was a cute scenarioâ¦.me pushing her around in a wheelchairâ¦..(or was the wheelchair dragging me along?)â¦. okayâ¦.a few times I had someone else push the dang thingâ¦.. when I arrived I was a few steps away from pneumoniaâ¦.a bad case of bronchitisâ¦â¦
sometimesâ¦..it helps to look back a littleâ¦.to be able to see aheadâ¦.
If you everâ¦â¦personallyâ¦.find yourself with a complicated medical situationâ¦.and you can't get answersâ¦.. Don't rule out a trip to Mayo Clinicâ¦..it is an experience that I don't thinkâ¦..you can getâ¦.anywhere elseâ¦.
they aren't perfectâ¦..butâ¦..neither is a cruise missileâ¦.. and both are my first choicesâ¦..
thanks to all of you for the good vibesâ¦..sometimes it is so lonely, in the middle of the biggest crowdâ¦.
_________________ 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
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| Tue Mar 27, 2012 11:53 pm |
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katelu
Joined: Tue Dec 29, 2009 2:28 pm Posts: 463 Location: Minnesota
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 Re: Headed to Mayoâ¦once againâ¦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
_________________ 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]
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| Wed Mar 28, 2012 12:31 pm |
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robin
Joined: Fri Aug 11, 2006 1:46 pm Posts: 4811 Location: SF Bay Area (Northern CA)
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 Re: Headed to Mayoâ¦once againâ¦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
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| Wed Mar 28, 2012 12:48 pm |
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BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm Posts: 386 Location: East TN
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 Re: Headed to Mayoâ¦once againâ¦DATscan..UPDATE: results
Kateâ¦
I didn't get to the Conferenceâ¦.or my Habit reunionâ¦. my wife was on an hour to hour watch for me to bring her to ER at St. Mary's over that weekendâ¦. but, things had cooled down by Sundayâ¦.so we were able to meet up with two couples that I had attended the Habit Program with in the Fallâ¦. one of the couples were on the Panel of person's with MCI at the Conferenceâ¦.. we met for brunch Sunday at a place just a few blocks from the Cathedral in St. Paulâ¦.after they had attended Massâ¦. (and Patâ¦.we then hit Camping Worldâ¦..pushing it just a little bit muchâ¦.)
I did get my DATscanâ¦. I did get a Habit program Booster appointmentâ¦. but the rest of the trip was for the real priorityâ¦. I wouldn't have had my DATscan until probably Augustâ¦â¦when I return for my Annual Research stuffâ¦..
My wife has to returnâ¦..sometime this summerâ¦.I plan to returnâ¦â¦finances sayâ¦..what did you say? soâ¦..once againâ¦.hopefully one trip can accomplish multiple goalsâ¦â¦
now some will snickerâ¦.at thisâ¦. I have Faithâ¦.thatâ¦â¦that very scenario will happenâ¦â¦this summerâ¦â¦ Faithâ¦..has carried me 5 times to Mayo Clinic since last Marchâ¦..
not one of those tripsâ¦.was money available beforehandâ¦â¦ I have sold just about everything imaginable to convert to fuelâ¦. and have found a lot of really generous caring peopleâ¦.
soâ¦..I will put you on my listâ¦.to contact for the next tripâ¦.. we didn't really have any time to visit on this tripâ¦.. we never caught up with Jeanne or Coyâ¦..haven't heard her post much latelyâ¦..hope everything is well with themâ¦.
â¦.just got an appointment to get my tennis ball cyst on my neck drained todayâ¦..isn't life just so much fun?
so have to runâ¦â¦
Kateâ¦.I would need an accomplice to put everything togetherâ¦..for the writing thingâ¦.I will find oneâ¦â¦I have a few more missions to accomplish in this lifeâ¦. I can't stay on trackâ¦.imagine thatâ¦.. at least not without helpâ¦â¦at least less and lessâ¦.. so I know I need to be getting that helpâ¦â¦nowâ¦..
it is a hard decision to make 'everything' publicâ¦â¦ it has consequencesâ¦.. but so doesâ¦..notâ¦â¦.
_________________ 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
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| Wed Mar 28, 2012 1:25 pm |
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BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm Posts: 386 Location: East TN
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 Re: Headed to Mayoâ¦once againâ¦DATscan..UPDATE: results
Robin,
I want to share my results with youâ¦..
I want to show you how much your efforts mean to meâ¦.
_________________ 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
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| Wed Mar 28, 2012 1:29 pm |
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