Cheer's excellent adventure

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Cheer's excellent adventure

Postby cheerleader » Sun Sep 06, 2009 5:57 am

Hey guys...
In Bologna!! Going out to walk around town, but wanted to let you know I survived the 10 hour flight from LAX to Paris...squeezed in the center seat of the center aisle in a group of 25 Norwegian motorcyclists who'd just done route 66, and were celebrating. It was like a norwegian happy hour. For ten hours. At 30,000 feet. The guys wanted to give me drinks, and one of them called me "The American Lady that reminds me of Elaine on Seinfeld!" So, didn't really sleep. But I ain't complaining, cause Fondazione Hilarescere is footing the bill, and the dirver that picked me up in Bologna had a sign that said my name had Dr. on it! 8O

It's a gorgeous day, and I'm going to soak up the vitamin D. Very surreal. Jeff's at home working, but he's with me in spirit....and so are you guys. Gonna go find a gelato. I deserve it!!!!
Cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CRHInv » Sun Sep 06, 2009 6:14 am

I am so excited! I am so glad your trip is going so well. I can't wait to hear more. Keep the information coming, Dr.!
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Postby mrhodes40 » Sun Sep 06, 2009 6:50 am

Well there you are!! The flight sounds funny, it makes a good story, but I am sorry you did not get any rest "Dr" Cheer!

I hope your room is the very perfect place to get some rest and catch up a little
best wishes and blessings,
marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby catfreak » Sun Sep 06, 2009 7:09 am

Well Hello Dr Joan Cheerleader!!

I was so hoping we would hear from you today. Glad you made it there OK. Safe and sound, I know Jeff wished he could be with you.

You are our ambassador of hope. I can't wait to hear what you will learn while you are there.

Tell Dr D we all said hello!!

SpideyCat :lol: :lol: :lol:
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby bestadmom » Sun Sep 06, 2009 8:16 am

Your story has the makings of a sitcom. I hope you partook in imbibing some Aquavit, the "water of life" with the Norwegians. It's so befitting!

Michelle
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Postby LR1234 » Sun Sep 06, 2009 9:51 am

Enjoy yourself Cheer!!! look forward to hearing your news x
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Postby Ernst » Sun Sep 06, 2009 10:17 am

Italy! Thats the place Im gonna visit with my wife someday. Italian language - just beautiful, I would like to learn it. Enjoy your time in Italy Cheer.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby bibliotekaren » Sun Sep 06, 2009 10:55 am

Dr. Cheer,

ROFL about the plane situation! Am really looking forward to hearing what comes out of the symposium.

Take care and enjoy the gelato!

Donna
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Postby javaneen » Sun Sep 06, 2009 11:36 am

Dr. Cheer! Has a nice ring to it huh? I am glad that you got there safe and sound. Enjoy yourself...you deserve it! Can't wait to here more!
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Postby skydog » Sun Sep 06, 2009 12:03 pm

Ah nothing like a bunch of bikers to show you a good time, glad you are there to represent us. You are the best ambassador we could ask for. Enjoy the sun we are getting slammed by a early pacific cold front. It is thundering as I write this. Have a great time and learn lots. Wishing you and Dr. D the best. Dr. Cheer, One day can't spell docar next day yar one… Peace, Mark Looks like sunny skies for the next week in Bologna Italy, Enjoy!
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Postby CureOrBust » Sun Sep 06, 2009 4:22 pm

Cheerleader, if they obviously did watch Seinfeld, you should of given them a huuuuge Elain "get! out!" and pushed them into the aisle. :twisted:

I have been wondering ever since this conference was first mentioned, and this probably has been noted, but I have forgotten :oops: When will the papers / data presented at this conference, be made available?
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Postby Jeff_wMS » Sun Sep 06, 2009 5:32 pm

I felt so bad and MAD when Joan told me about these Biker Dudes - I would have liked to give them a swift kick - but I know one high D from Joan's Soprano voice in full opera fortissimo would have scared the bejezzus out of them(!)

Joan sent some pics this of the town with looks lovely! We tried a bit of ichat but here wi-fi was sporadic at best.

I love the big sign she saw reading "DR. BEAL" at the airport best - kind of appropriate!

I am Home here holding down the fort with our teenage son and getting ready for another week of composing.

As you all know, this is all potentially the beginning of something very very promising for us, and it will be great for all of these passionate and gifted folks to share their findings and learn from each other.
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Postby cheerleader » Sun Sep 06, 2009 6:36 pm

Hey guys...
Had a beautiful walk around town last night. Bologna has miles of these gorgeous "porticos" over the sidewalks, all are different types of stone and mortar, to shield the pedestrian from the sun and rain...just beautiful architecture. Built around the university of Bologna (first European Un. founded in 1038) Lots of hip college students on the streets. I love college towns. And I had my first of many future gelatos.

Jeff has taught me well about travel...stay up the first night, get sun on your face and go to bed with nightfall. Then you sleep well and are ready for the next day. Thanks, honey, for all of our traveling adventures. Today is a meet and greet with the doctors and dinner out late- but first my prima collazione, caffe latte and another stroll for more pics. One of the perks of my past opera life is that I know enough italian to get around. I love the way it sounds...so musical. And Jeff's right, my high notes have scared away pick pockets and fresh men! Got a built in alarm system.

Cure- all of the papers from the conference will be up at Fondazione Hilarescere's website in the future...but I'll have my notes typed up a few days after the conference and will post here on another more official looking thread. My internet here is a bit iffy, but I'll post as time and bandwidth allow.

For those who want to play the CCSVI home game, the final schedule and bios of all the speakers are up at
http://www.fondazionehilarescere.org/eng/comitato.html
http://www.fondazionehilarescere.org/pd ... RE-PRG.pdf

ciao!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Sun Sep 06, 2009 7:59 pm

Hey Jeff,
the bikers sound like totally rude people! You'd think they'd be tired! I feel so sorry for Cheer, and man, she is doing the return 14 hour trip on Wednesday too, talk about putting your body on the line!! Geezz. That is really nice of her to do that and thanks for supporting her going too Jeff! She's gonna be tired for a week.......

We are all grateful for her effort. 8)

these passionate people sharing with one another makes me absolutely tingle with excitement, honestly. I have such great hope for them to discover together the mysteries of this new model and advance it in a way that is efficient and lacks the usual literature war that goes like this:

"MS is an autoimmune disease and we found MOG proving that these lesions are immune caused..............'

and researcher 2 comes along 6 months later
"Ms is considered to be an autoimmune disease though that has never been proven recently a colleague has claimed MOG was seen. In our present study we found no MOG....."

This kind of literature back and forth on such minutiae never makes it to the clinical (patient in the clinic who needs treatment) level and results in what I call "MS trivia"; nonsense information that makes us think something is being accomplished in the scientific fields when in fact it has not resulted in any information that can have clinical application.

No one seems to ask "is MOG present in any other disease?" as if its presence in MS is "obviously" indicative of an autoimmune process or of the MS process specfically, rather than asking if it may simply be an artifact of immune activity of any kind INCLUDING normal response to injury.

yet look at this:

The take-home
message is that most of these findings represent nonsense
antibodies that measure the antigenicity of the
proteins involved more than a specific root cause of
MS. The antibodies may reflect the increased immune
response of MS patients more than the pathogenicity
of the antibodies,


FROM HERE

what this person is saying is that these MOG and other myelin protein antibodies are just part of the fact there is damage here that the body is clearing up in a response and not necessarily that it CAUSED MS.

So that is an example of how business has been done in scientific circles.

never mind if it takes decades to get anything out to the patients..... that does not seem to bother them

The incredible strength of conviction and commitment of Dr Zamboni, Dr Dake Dr SImka and these other research team members is amazing.

These people are coming to a common table to share their information collaboratively and share not only scientific findings so others can learn from it, but also to discuss a strategy for getting this out to people the fastest way possible; how best to release the information, where etc, so we all can benefit at the clinical level. This is what medicine should be.

I did not expect this in my lifetime, and it is here. I am just incredulous at this....

I can't wait to hear what Cheer says... :D :D

I am west coast US and England is 8 hours ahead of us, Bologna must be...what ? 9? so it is 8pm here so Cheer should be sleeping, let's hope the Norwegian bikers didn't go to Bologna for some reason :wink:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Re: Cheer's excellent adventure

Postby NHE » Sun Sep 06, 2009 9:22 pm

Cheer,
It may be too late for this suggestion, but it would be great if you had a small digital voice recorder with you. Some mp3 players have this functionality built into them. Some cell phones also have it.

Just a thought... I'm sure that many of us would love to hear what all of the participating doctors have to say on CCSVI.

NHE
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