A stroke/PFO (Patent Foramen Ovale) awareness blog by David Dansereau dedicated to removing the "gray areas" and understanding the connection between the heart and the brain
Let’s just pretend (in this Facebook Shutdown scenario) that I make a comment on my blog about an FDA scandal and I mention that there were reports linking politicians on Capitol Hill with “possibly” influencing choices being made by the FDA. I post this to my blog which gets distributed through the WordPress blog network and automatically gets posted to my Facebook account as well as on my accounts on LinkedIn,Twitter and some of the other health websites which syndicate/RSS my know-stroke blog like Wellsphere.com. (Follow me here please, just for illustration of course…)
Let’s just say I go on to mention in my post that a “possibly” tainted FDA committee recommended that Bayer be allowed to keep its problematic birth control pills – sold as Yaz and Yasmin – on the market even though the agency’s adverse events reporting system had turned up higher risks of blood clots, which can cause deep vein thrombosis, pulmonary embolism, stroke, heart attack and death. My research for my post reveals that thousands of lawsuits have been filed against the company (Bayer) alleging the pills damaged women’s health. Even with this evidence against this controversial birth control pill, I report on know-stroke.org that the FDA committee still ruled the benefits of having another birth control option on the market outweighed the risks.
SO, what if this story wasn’t just made up? What if news of this FDA scandal was really reported earlier this month in Washington Monthly, and The Wall Street Journal which actually followed up with some juicy details about the financial ties between some of the researchers and Bayer. Here’s an actual article with a good summary of the scary “funny” business really going on at the FDA, see Conflict of Interest Scandal Rocks FDA by Merrill Goozner.
The point of my article is that my post here, even though sourced correctly and accurate could be deemed a threat and my site shut down (if PIPA/SOPA legislation go through) for sharing details of this “possible” funny business. Also, by the way, if you don’t really care about my site but you love Facebook, the proposed two bills in Congress RIGHT NOW, (the PIPA/SOPA legislation) would make the cost of enforcing copyright compliance incredibly high for social sites like Facebook and YouTube,etc.. Could these sites also be liable for not screening/censoring my blog content or perhaps your own uploaded videos? YES
See how this proposed legislation would make all sites “on the hook” for contributory infringement and their new forced policing role could crush these sites and the way we are able to share information. Don’t believe me?
Play this TED.com video below “Defend our Freedom to Share (or why SOPA is a bad idea) SHARED on YouTube to draw your own conclusion and see what you can do if you like your internet left alone.
What this legislation really says is that you can’t share until you show US that you aren’t sharing something we don’t like…. scary… I think especially when you look behind the curtain and see who is really being paid to support this proposed legislation.
Many websites, including my own at know-stroke.org blacked out today to protest proposed U.S. legislation that threatens internet freedom: the Stop Internet Piracy Act (SOPA) and the Protect IP Act (PIPA). From personal blogs to giants like WordPress and Wikipedia, sites all over the web — including this one — are asking you to help stop this dangerous legislation from being passed. Please watch the video on my site to learn how this legislation will affect internet freedom, then scroll down to take action.
Open a digital copy of this month’s Stroke Connection and read about Kevin Sorbo’s account of his stroke and recovery (YES that Hercules). His book is a great read too, but if you just can’t afford to miss a minute on Facebook then click on the link above to read this great article written by Jon Caswell in Stroke Connection on Kevin’s recovery after a stroke.
[My personal sidebar] Best line/take away: Kevin mentions in the article and in his book that his state of mind post-stroke was like ” looking out from inside an aquarium with a low humming sound in the back of his head that never stopped “. I bet many readers of my blog that are migraineurs/stroke survivors can understand this all too well.
BTW, If you like the article, click below on my Facebook button to Share this post.
The purchase of this stroke and PFO (patent foramen ovale) data from Closure 1 as well as intellectual property is reported to be ” in the spirit of collaboration and in the interest of advancing scientific and medical understanding”.
posted by David Dansereau for know-stroke.org
FLAGSTAFF, Ariz., Oct 19, 2011 (BUSINESS WIRE) — W. L. Gore & Associates (Gore) today announced that the Company has purchased the assets and intellectual property of NMT Medical, Inc., including the data related to CLOSURE I, a prospective, multi-center, randomized controlled trial of PFO closure with the STARFLEX(R) Device (NMT Medical, Inc.) versus best medical therapy for the prevention of recurrent stroke and/or transient ischemic attack (TIA) in patients with cryptogenic stroke/TIA and PFO….read full press release
Sometimes when you speak the truth it can get you in trouble. Let me explain. I’ve been digging a little deeper lately trying to get some answers to the ongoing question of PFO, septal occluders and exercise. Completely for my own benefit of course, but if you have been following my posts you know I am not the only stroke survivor with a septal occluder patent that is googling for help. Let’s just say for now, I am thinking of boosting my exercise level and need to know if it still “OK” especially with recent rumblings of device erosion. Anyway, you may be thinking I shouldn’t need to google for help, right?
The answer as it turns out is not that easy. I have this patient identification card that identifies me as an official recipient of a septal occluder married now to my ticker. With my card I received a one page letter that states “Dear Recipient:” (that’s me)
Enclosed please find your xxxxxx Occluder implant registration card. Please keep this card with you at all times. This card will notify medical staff of your implant in case of medical emergency, and provides a contact number for us to reach you in case additional information might be needed for your care. Below are some commonly asked questions about your device:
(skipping to the part on exercise or as close to the part that mentions any physical activity guidelines)
Q: What activities should be avoided after my procedure? When can they resume?
A: All strenuous activity should be avoided for one month after the procedure. Even though you may feel ready to resume your normal activity, you should take it easy for at least one month.
I needed more information so I called the toll free number on my PFO Patient Identification Card. What I quickly learned was “they (the device manufacturer) don’t set the guidelines, they just make the device”. I would need to “speak with my physician who implanted the device”. Honestly, I am not feeling comforted by the device support line these days especially after reading more about PFO device erosion. I am suppose to feel better after speaking with my physician and having a long discussion about erosion that I have a “good” device. Frankly, I don’t know what that really means because there is clearly an accountability problem that needs to be addressed.
Bray Patrick Lake of the PFO Research Foundation posted a great article on better accountability in this industry. I hope we figure this thing out soon, I don’t want to get a call “in case any additional information is needed for my care” just because I want to be more active. I’ll tell you soon how this truth might be getting me in trouble but for now read Bray’s article on why her fish tank/water heater may be currently better regulated than the individual devices that she and this author have patent. That’s a shame.
I read Bray’s post a while ago in the group on Facebook, and made a *mental note* to immediately schedule an appt. with my cardiologist who preformed my surgery for an over due follow up visit. The metal note to myself failed, as I’ve been dealing with other health issues. Now I have my written note reminder as I shall be in his office tomorrow for an appt. with my electrophysiologist & neurologist in the same office. Glad I found your blog as a reminder, and looking forward to reading your past posts.
While researching emerging technologies for brain recovery as part of my new book, I started following the work that the MIT Media Lab is doing especially the work of Ed Boyden a biological engineer and brain and cognitive scientist. If you have the time go watch the video he did for TED below, this is really interesting work.
Some of the concepts in this video could push the envelope a bit and change how we feel about what age the brain fully develops and how we can perhaps some day “upload” more brain function to ward off decline and perhaps correct insults.
By the way, if you took our poll and just want the simple wiki answer to the brain development poll from a previous post then here it is:
Answer:
Scientists say that the brain is fully developed and matured in the late teens or early 20′s, depending on the individual. The average would be 21.
I Just learned that the University of Rhode Island is hosting an upcoming Honors Colloquium beginning later this month called “Are You Ready for the Future?“ Go to http://www.uri.edu/hc to learn more. Ed Boyden is one of the invited guests. If you aren’t planning to travel to Little Rhody you can see all the lectures as they will be streamed live and archived. I might just make the drive back to my old school to see this one “live”. See the schedule of events, it looks good.
Those taking 400mg doses had 250% greater risk of dying from heart attack or stroke… and those taking the 800mg doses has 340% times the risk!
Beth, and 
Marcia are discussing. 
Marcia 4:10 pm on September 21, 2011 Permalink |
David!!!!!! OMG!!!!!!! Keep us all posted! xo you!
Beth 5:28 pm on October 11, 2011 Permalink |
I read Bray’s post a while ago in the group on Facebook, and made a *mental note* to immediately schedule an appt. with my cardiologist who preformed my surgery for an over due follow up visit. The metal note to myself failed, as I’ve been dealing with other health issues. Now I have my written note reminder as I shall be in his office tomorrow for an appt. with my electrophysiologist & neurologist in the same office. Glad I found your blog as a reminder, and looking forward to reading your past posts.