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BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
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 Headed to Mayoâ¦once againâ¦DATscan..UPDATE: results RESULTS update on page 2 Yepâ¦.you betchaâ¦.gonna hitch it up and hit the road again⦠in two weeks I head to Mayo for a DATscanâ¦.and then appt with Dr Boeve⦠a 'Habit' Booster apptâ¦â¦.a 'Habit' Reunionâ¦â¦.and a Saturday Conference 'Meeting of the Minds'â¦â¦ what more could a guy want? there is a lot more to the storyâ¦â¦but, this is the Mayo part of this trip for meâ¦. this a way more than enough to talk about hereâ¦â¦ I will probably be in Rochester area at least three weeksâ¦..give or takeâ¦. possibly some time in Wisconsinâ¦.too I am sure there will be time for a cup or two of coffee and some idle conversationâ¦.. mostly ramblingâ¦.non sensicalâ¦.non linearâ¦.on my part... So if any locals are in the 'area'â¦..PM or email meâ¦. Patâ¦.they opened the campground a few days agoâ¦â¦usually doesn't open up until April 15â¦â¦ Jeanne and Coyâ¦..hope you are hungryâ¦..and all betterâ¦. Connie is coming with her Cajun Cooking Potsâ¦â¦really look forward to talking to you guys about the rest of the storyâ¦.. and feeding you some real Cajun Foodâ¦. there has been a whole lot going on in my lifeâ¦..cognitivelyâ¦.betterâ¦..or delusionalâ¦...  I am still trying to lose that house here in Knoxvillleâ¦â¦always just days away from another almostâ¦. today is no differentâ¦..butâ¦..I am differentâ¦..pretty close to done with itâ¦.. anywayâ¦.looking forward to some more good information on LBD and MCI from Mayo and the Habit Folks, the Meeting of the Minds Conference, my friends with Alz Assoc thereâ¦..and othersâ¦.. and some tweaks in my treatment plan, from Dr. Boeveâ¦. I feel extremely grateful today. More than I could ever say. And for thatâ¦.I thank the God of my Understandingâ¦â¦ andâ¦..I thank a lot of peopleâ¦.Thanks to all of youâ¦.you know who you areâ¦.and if you are not sureâ¦.Thanksâ¦.. Live Today.
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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
Last edited by BayouCajun on Sat Mar 17, 2012 5:49 pm, edited 1 time in total.
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| Sat Feb 25, 2012 12:27 am |
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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..Meeting of the Minds( Craig,
Hope it's a wonderful trip! Sure sounds like you're packing a lot in.
Robin
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| Sat Feb 25, 2012 1:15 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..Meeting of the Minds( thanks Robinâ¦.
I am going to MAKE it a wonderful tripâ¦.
Packing as much in what time I haveâ¦â¦is my mottoâ¦..
that is aboutâ¦..likeâ¦â¦
it takes me a month to do what someone else can do in a dayâ¦â¦
actually once I get on the roadâ¦.it will be leisurely this timeâ¦..by designâ¦..
I can't push itâ¦..but thenâ¦everyone here already knows thatâ¦.
I can still dream in real life time thoughâ¦.even if I can't live itâ¦.boy can I dreamâ¦â¦lolâ¦..RBDâ¦.you knowâ¦..
Fortunatelyâ¦I am able to do a bitâ¦..I cherish each and every bitâ¦.
as each and every dayâ¦.the bits get smallerâ¦
soâ¦.yesâ¦..packing it inâ¦..with lots of time to recover between bitsâ¦..
and my own bed in the campground to recover inâ¦.
Robinâ¦..I will be sure to share whatever I learn about the DATscans
_________________
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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| Sat Feb 25, 2012 1:36 am |
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mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3017
Location: WA
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Re: Headed to Mayoâ¦once againâ¦DATscan..Meeting of the Minds( Praying you have an enjoyable and highly successful trip, Craig!
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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.
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| Sat Feb 25, 2012 1:48 am |
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Ger
Joined: Mon Feb 21, 2011 9:55 pm
Posts: 354
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Re: Headed to Mayoâ¦once againâ¦DATscan..Meeting of the Minds( Craig, you are my kind of hero - honestly - the way you are fighting this makes me so proud of you. Your positive attitude and fighting spirit is wonderful to beholld and puts me to shame for moaning about the small worries in my life. Way to go, and enjoy.
God Bless,
Gerxx
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cared for Dad who passed away on January 28th 2013 R.I.P.
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| Sat Feb 25, 2012 10:18 am |
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cdw
Joined: Fri Nov 05, 2010 11:30 pm
Posts: 301
Location: southern cali
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Re: Headed to Mayoâ¦once againâ¦DATscan..Meeting of the Minds( craig..
have a safe and enjoyable trip.. learn lots....
we are rooting for you, all the way..
cindi
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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 signs of parkinsons.
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| Sat Feb 25, 2012 11:21 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..Meeting of the Minds( Patâ¦Prayer has made a lot of differenceâ¦.more coincidence and planet alignment than the law allowsâ¦.
and the day/night shades work if one stays patientâ¦.and since I am forever patientâ¦.(inside jokeâ¦another world)
my middle child is following her first surgery patient in nursing schoolâ¦.an 81 yr old knee replacementâ¦..
Gerâ¦thanks for the kind wordsâ¦.I think of you and your Dad oftenâ¦.I so much wanted to cross the pond againâ¦.(maybe one day)â¦.to go back and see the 1600's cottage where I lived while stationed at RAF Alconbury in the 70'sâ¦..I can picture me and your Dad sitting in a Pubâ¦.back thenâ¦.maybe at the Ferry Boat Innâ¦Duck or Grouseâ¦.those 4 foot ceilingsâ¦.you knowâ¦.
Cindiâ¦.learn I willâ¦.retain? â¦..hopefully shareâ¦..
I need and will take all the help and rooting I can getâ¦..
as you knowâ¦..all of youâ¦.this disease is so isolatingâ¦.and the isolation you feel as caregiversâ¦.is real, badâ¦.really badâ¦.awfulâ¦..horribleâ¦nastyâ¦crummyâ¦.and it hurtsâ¦..
well as a patientâ¦..there are no wordsâ¦.lolâ¦.pun intendedâ¦.sometimes I actually have no wordsâ¦.well, I do have the wordsâ¦..but they won't come outâ¦..or only the first part of the sound, maybe a few times, maybe nothingâ¦..but, then even if I could say the some of the words I would useâ¦..I probably shouldn'tâ¦..at least not in publicâ¦.and especially not without a lot of prayerâ¦â¦just afterâ¦.
as a patientâ¦..it stinksâ¦..we are isolated even from the ones standing right next to usâ¦.
â¦â¦..
I am so fortunate to be where I am in the disease, where I am in my treatment, where I am in Lifeâ¦..with this diseaseâ¦â¦(now without the diseaseâ¦..not so much)
I come hereâ¦.to fight the isolationâ¦.
I go to Mayoâ¦.to fight the isolationâ¦.
this tripâ¦.will be a lot of fightingâ¦..
a lot of learningâ¦â¦
I take it on myself to share, share, with everyone I meetâ¦..
so, then, I must learn moreâ¦.
so I can fight the good fightâ¦.
Live Today. Tomorrow?
_________________
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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| Sat Feb 25, 2012 12:40 pm |
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mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3017
Location: WA
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Re: Headed to Mayoâ¦once againâ¦DATscan..Meeting of the Minds( My day/night shades are on their way out, as you may know [from another 'world']. Broken string on one and just a matter of time with the other. Will replace them with something else, more than likely. If you have not ripped yours down and tossed them out with the trash by now it shows that you have patience, indeed!  Godspeed!
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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.
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| Sat Feb 25, 2012 1:11 pm |
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Tonya
Joined: Wed Mar 02, 2011 1:04 pm
Posts: 250
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Re: Headed to Mayoâ¦once againâ¦DATscan..Meeting of the Minds( Best of luck Craig!
I wish I had your wonderful attitude....am working on it!! you are an inspiration!
Have a safe and great trip!!
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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........
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| Sun Feb 26, 2012 8:46 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..Meeting of the Minds( Patâ¦..you do knowâ¦.I had to kidding about the day/night shadesâ¦..
what a torture deviceâ¦.
hopefully mine will last for as long as I need themâ¦
Tonyaâ¦.
thanks for the kinds wordsâ¦..
I admire your attitude.
Going to try to get us some good info this tripâ¦..
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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
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| Mon Feb 27, 2012 1:14 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..Meeting of the Minds( DATscanâ¦â¦done todayâ¦.this was different from an MRI, different from a CAT scan, different from a PET scanâ¦.
did I sayâ¦.it was different?
the scanning device is flat plates that rotate around your headâ¦..very slowingâ¦.in very small incremental advancementâ¦..
takes a longâ¦â¦timeâ¦â¦â¦..staying stillâ¦..
no trouble or anything noticeable from the injectionsâ¦...
resultsâ¦..in a day or twoâ¦..
â¦â¦
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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
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| Thu Mar 15, 2012 1:16 am |
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mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3017
Location: WA
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Re: Headed to Mayoâ¦once againâ¦DATscan..Meeting of the Minds( Hope the results look good, Craig!
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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.
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| Thu Mar 15, 2012 10:42 am |
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cdw
Joined: Fri Nov 05, 2010 11:30 pm
Posts: 301
Location: southern cali
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Re: Headed to Mayoâ¦once againâ¦DATscan..Meeting of the Minds( fingers crossed.. been sending you good thoughts..
cindi
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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 signs of parkinsons.
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| Thu Mar 15, 2012 6:31 pm |
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Ger
Joined: Mon Feb 21, 2011 9:55 pm
Posts: 354
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Re: Headed to Mayoâ¦once againâ¦DATscan..Meeting of the Minds( xxx
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cared for Dad who passed away on January 28th 2013 R.I.P.
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| Thu Mar 15, 2012 7:06 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..Meeting of the Minds( Craig,
As I was reading an interesting article in the most recent issue of the journal Neurology on DaT scans, I thought about you. This scan is a type of SPECT. I think not many institutions around the world have SPECT scanners. You are at one of the best!
Robin
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| Thu Mar 15, 2012 8:15 pm |
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