CCSVI Presentation for Lay People

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

CCSVI Presentation for Lay People

Postby fiddler » Sun Jul 04, 2010 7:38 am

I'm going to be making a presentation about CCSVI to the local (northern New Brunswick) MS Society chapter in early August. It will start with an intro to the CCSVI theory including corroborating evidence, present some stats on the numbers and locations of "liberations", give some info (mostly anecdotal) on impacts on treated people, then describe my own experience in Katowice and after.

I am hoping that the first part(s) has already been done (in lay terms) by someone so I don't have to reinvent the wheel in terms of the work to be done. If someone knows of such a ready-made presentation, could you please point me in the right direction to find it? Although my presentation isn't for a month, I need to translate it into French (or at least provide explanations en francais), and translating is slow for me.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby shye » Sun Jul 04, 2010 8:34 am

1st post by Cheerleader in the thread might help:
http://www.thisisms.com/ftopict-7374.html
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Postby Ruthless67 » Sun Jul 04, 2010 8:46 am

Hi Fiddler,

I know the folks who are putting the CCSVI Alliance web site together are almost ready for the unveiling. Should be lots of great help for your presentation on there.

If you can, have someone video your presentation. It could be quite helpful for the rest of us. I think it's a great idea to present information about CCSVI at the local MS Society chapter meetings.

Respectfully,
Lora
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Bumping this up!

Postby fiddler » Wed Jul 07, 2010 6:19 am

I'm bumping this in case some folks haven't seen it before and/or have some new thoughts about where I could go for existing presentations or images I could add in my own. Also, if anyone wants to help in the search or reviewing the draft, please let me know.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby BooBear » Wed Jul 07, 2010 6:26 am

Fiddler, I am happy to help with the review. Just PM me with what you need.
Three veins angioplastied.  One renewed life.  
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OK

Postby fiddler » Wed Jul 07, 2010 8:01 am

Done!
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Postby bretzke » Wed Jul 07, 2010 8:14 am

I'll gladly review. PM me.

Brian
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Draft outline of the presnetation

Postby fiddler » Wed Jul 07, 2010 10:44 am

CCSVI : A Lay Person’s Presentation for Lay People
1) What is CCSVI? (Show different kinds of blockages, mention possibility of some of the more obscure ones)
2) What is the evidence that CCSVI exists?
3) What causes CCSVI?
4) What, until recently, has been the generally accepted theory regarding the cause(s) of MS?
5) What is the evidence that an overactive immune system causes MS?
6) What is the new evidence that MS damage is not, initially at least, caused by an autoimmune reaction?
7) What are the theories regarding the relationship of CCSVI to MS? (Poor blood flow [usually over a long period of time], blood pooling, hypoxia, inflammation, breach of the blood-brain barrier, iron deposits, demyelenization and CNS damage, then T-cells begin to appear [at first to clean up damaged cells, and then an immune system over-reaction].
8,) Is there evidence to back up these theories?
9) How can CCSVI be diagnosed? (MRV, Doppler US and catheter venography – and explain how this is not a simple straight-forward test that can be done by people without special training). How can CCSVI be treated? (Diet? Drugs? “Liberation”?)
10) What are the two main schools of thought regarding liberation? (stent, no-stent, the arguments for each side)
11) Where can CCSVI be diagnosed, where can it be treated? Which of these can be considered “open” clinics where anyone (with the money) can go?
12) Why (how) did I decide to go to Poland (Euromedic) for diagnosis and treatment, why did I feel (at the time) that seeking diagnosis in Canada was not worthwhile?
13) What were my experiences with CCSVI diagnosis and treatment, with Euromedic and Poland? What did they do well, what could they have done better?
14) What has changed for me since my treatment?

Please provide me with suggestions/criticisms concerning gaps, sources, etc. Remember, this should be a 20-30 minute presentation, leaving time for discussion.
Last edited by fiddler on Wed Jul 07, 2010 11:43 am, edited 1 time in total.
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Postby Cece » Wed Jul 07, 2010 11:02 am

That looks great! My concern is only that you will run long, there is so much information to cover. People will be very interested in your personal story and any improvements.

I always found the example of venous reflux damage done in budd chiari disease to be convincing and helpful info, especially since it tends to show up at age 30 just like MS, and there's a good punchline there when it's mentioned that in budd chiari, the person needs a liver transplant.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Budd Chiari

Postby fiddler » Wed Jul 07, 2010 11:40 am

Thanks, Cece. I have one paper where CCSVI is likened to Budd-Chiari, but the language is pretty dense... do you have a good link for that, and/or references to pathological similarities between CCSVI and other venous-blockage caused diseases?
...Ted
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My blog: www.my-darn-ms.blogspot.com
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Postby bretzke » Wed Jul 07, 2010 2:45 pm

Ted-

When I prepare a presentation, I always start with the advice to Keep It Simple Stupid (KISS).

The presentation should follow this guideline: 1. Tell 'em what you're gonna to tell 'em. 2. Tell 'em 3. Tell 'em what you told 'em

Your outline covers WAY TOO MUCH STUFF for a 30 minute presentation. The goal should not be to fully educate your audience on CCSVI. Folks will be most interested in your CCSVI journey.

If they leave the presentation curious enough to do further investigation on their own, you will have been successful.

80% of learning comes from visual cues. Create a powerpoint presentation. Be sure to include video of a vein being unblocked during Liberation. Find your favorite "before and after" youtube videos of someone else liberated. Include those.

Save any controversial discussion about testing/treatment for the Q&A session at the end.

Just a couple of quick thoughts. If I can be of assistance, let me know.

Brian[/b]
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Postby Rieja » Thu Jul 08, 2010 7:55 am

I agree with bretzke.

Take a look at this video:
http://www.youtube.com/watch?v=6WxqtnGzfSo
The concpet being use pictures.
Also, this is a good resource too:
http://www.slideshare.net/thecroaker/de ... powerpoint

Read over the articles to get an idea on how to capture audiences, keep them and engage them.

Information is a great tool but it can also lead to headaches if not properly communicated to the end user (yes yes I am a communication/designer specialist in real life)

bretzke is correct: "1. Tell 'em what you're gonna to tell 'em. 2. Tell 'em 3. Tell 'em what you told 'em" and "Folks will be most interested in your CCSVI journey. "

All the detail information should be in a handout - probably in pdf format for all to read. Once you make the audience understand, then they will be more likely to read over all the details.
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Postby Cece » Thu Jul 08, 2010 9:44 am

Rieja wrote:All the detail information should be in a handout - probably in pdf format for all to read. Once you make the audience understand, then they will be more likely to read over all the details.

Oh, I like this idea.

I don't have anything handy for budd chiari. I will try to remember to look it up and bring it back here!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Rieja » Thu Jul 08, 2010 10:06 am

A quick and dirty method of making ANYTHING you can print a pdf is to get this software:
http://www.cutepdf.com/Products/CutePDF/writer.asp

What this does is setup a "fake" printer. It will be called something like Cute PDF. After you click on that to print, it will actually ask where you want to save it. Name and save the document and voila - a pdf that anyone can read.

Again this works on anything you can print - web pages, word documents, excel sheets, you name it. If you can print it, you can save it as a pdf.
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Good ideas

Postby fiddler » Thu Jul 08, 2010 1:29 pm

Good ideas, folks, thanks. As I often do when I start working on a presentation, I start with too much to say, and have to work to pare it down - though remember that some of the slides are going to be just pictures or key points for context. Looking at it again, I realize that it's probably better to stay away from the whole "autoimmune/not autoimmune" controversy.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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