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.
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.
Yes, I admit, my posts these days on my stroke blog have been few and far between. I have been extremely busy (more on this shortly) but I had to comment on this story right away before I bookmarked it and it got eventually lost in a sea of other things “to do”.
Liz Bestic, a health reporter in the U.K. recently heard the words “You have Had a Stroke” . I would otherwise have no reason to know this other than Google Alerts gives me a poke every time the words PFO (patent foramen ovale) and exercise (as well as a few other PFO/stroke combinations I follow) appear in the news and shortly thereafter in my email. Mostly these days I don’t get through all the alerts but “PFO Exercise Guidelines” still are tops on my radar because it is an area where much uncertainty remains and physician/patient EDUCATION still is lacking or non-existent depending upon who you ask.
Liz Bestic reveals in her great article about her stroke and PFO diagnosis that she is exercising while she ponders a difficult decision on what to do next. While this was the last interesting point made in her article and is what probably triggered the PFO/exercise/Google “link” that now has me linking her to my blog I hope it isn’t the last on this important theme. I do wish Miss Bestic well in her recovery and on her decision on how to best treat her PFO. I also hope it may happen that she will find it timely to perhaps do another follow-up story as she now will no-doubt become an expert on the same PFO/stroke journey many of us have already taken. Miss Bestic may in fact be in a unique position as a survivor and health reporter to help improve this education gap. Who knows, perhaps Google may be able to help with this important alert too. I welcome all your comments, and especially those of Miss Bestic if she happens to have her own name “tagged” and finds us here.
Here’s the link to her article and it is worth the read right away, don’t just bookmark it “for later”
And is CBS and perhaps the folks involved in Miss Branson’s care that evening guilty of not knowing the stroke warning signs?? You decide…
There are reports from LA circulating that a local reporter , Serene Branson, may have experienced a stroke or “some kind of neurological event” while reporting live during the Grammys Sunday evening in Los Angeles. This is certainly a terrible event for Miss Branson to have to deal with, and I do wish her the best. At the same time I also encourage her, at her earliest convenience , to go straight to the ER to be checked out ASAP. It is certainly understandable that Miss Branson would want her video replay to be pulled off the web but without seeing it and based only on the comments here it appears that reports may be correct. The most disturbing part of this story is the update from CBS here:
This was the update from CBS today:
UPDATE: CBS 2 posted a statement about Branson’s condition, saying “Serene Branson was examined by paramedics on scene immediately after her broadcast. Her vital signs were normal. She was not hospitalized. As a precautionary measure, a colleague gave her a ride home and she says that she is feeling fine this morning.“
If Miss Branson indeed was slurring her words and had jumbled speech “all of a sudden”, then you simply do not allow someone to go home and sleep it off. The best thing CBS could do, in my opinion, in addition to urging Miss Branson to seek follow-up medical care, would be to allow the replay of this event with Miss Branson’s permission. Is she did indeed have a stroke, then it would be a once in a perhaps lifetime event for teaching stroke education “in real time” and learning the warning signs. Read the mixed comments that follow the story here and you’ll see why we need to KNOW-STROKE !
I welcome your comments and please chime in if you actually witnessed this report live during the Grammys or the replay before it was pulled by CBS.
How Do You Turn a Bad Situation into an Inspirational Message?
“Stroke Recovery is not easy, but as Jamie Coyle and her friend Tedy Bruschi will say, you have to start by adopting an attitude to “Never Give Up”! - DP Dansereau, Know-Stroke.org
As a physical therapist one of my most important tasks is to motivate my patient, learn what their true goals are for recovery, and find out what may have motivated them to action in the past (prior to their stroke).
Speaking from personal experience during my own stroke recovery, the key to achieving the best possible outcome is to not give in and listen to that part of the brain that says, “enough is enough” and instead push through barriers and adopt an attitude to “Never Giving Up”. Jamie Coyle knew from the first day I met her in her hospital bed that she wanted to return to skating, and her goal was even more specific, she wanted to play hockey again. As a hockey player myself, it was not hard to connect with her and respond to her question to me at that first meeting, “Will I skate again”? I mentioned to her she’d need to keep the faith, maintain focus and most important, do the work. She has truly owned that message and invested everything into her recovery, and I am so proud to see her back on the ice with her peers doing something she loves. Way to go Jamie!
Watch the video feature below by Varsity Life’s Melanie Pellowski on Cox Sports and Channel 10. Melanie has been following Jamie’s recovery and in turn has has done a great job helping to spread the word about stroke awareness.
Sharon Coyle
12:26 am on January 1, 2011 Permalink
| Reply
Original posted at fightfor7.com by Sharon Coyle (Jamie’s mom)
December 25, 2010
Hi everyone,
We have so much to share with you all in regards to a CHRISTMAS MIRACLE but let me fill you in on some background first. First and foremost we wish you all a very Merry Christmas. I”ll take you back to a couple years ago when I first heard of an e-stim machine called the walk-aide. When Jamie was in spaulding they had used a similar machine on her hand. When we heard of the walk-aide Jamie wasn’t ready for it at the time. I contacted blue cross just to ask questions and get some info about the machine and of course ended up angry with our health coverage. We are the strongest country with the weakest health coverage for our children. My grandmother used to have a saying penny wise and dollar foolish. That sums up health coverage to me. I was watching a t.v. show that had a marathon runner on and she was a stroke survivor that could no longer run unless she wore the walk-aide. I remember it like it was yesterday when I coulnd’t believe that anyone could clearly see the benifits to her but her health coverage stated what I hear much to often and that is that machines like these are concidered experimental. Believe it or not they say the same thing about the benifits from acupuncture. Keep in mind that acupuncture is over 4,000 years old. I guess one could claim that blue cross is just a little behind the times. There are many benifits to Jamie with the use of this machine. First off it helps with foot drop so the wearer is safer. It corrects the foot to step properly to avoid long term problems with the knee, hip, and back. It is a full time job caring for a child that has had such a set back medically and advocating for that child is hard work on top of that. As a parent you just want to focus on your child getting better. Being an advocate is a very nice way of saying you have to become a fighter for everything your child needs. No one can ever underestimate a parents love for their child. I will never get tired and like the great Tedy Bruschi put it ‘NEVER GIVE UP’ my fight for Jamie. You all remember Dave Dansereau who Jamie considers part of our family. Dave who advocates for all stroke survivors young and old went on a mission with us to get Jamie the walk-aide. Dave got the ball rolling with a lady named Sarah Rotondo who works for a walk-aide company. Sarah has been working very hard with me and Jamie to win this battle with blue cross. We have never met with Sarah in person however she treats Jamie as if she was her own child and we are so grateful to have been connected with her. This brings me to Melanie Pellowski. She is the best reporter for varsity life if you ask me and Jamie. Melanie has done several stories on Jamie and has helped Jamie to bring awareness to child stroke through these stories and by sending viewers to Jamie site. So now we come upon Christmas Eve. The day was going great. We were enjoying family,friends,and great food. My beat friend Lisa LaZenberry stopped by later in the evening with her husband Chris and son David. I suggested that Jim made us a cocktail to make a toast that we are all healthy and happy. My friend Carin Martinez had given us all the fixings to make magaritas for this occasion. As Jim was making the drinks a text was coming in from Sarah Rotondo. This is the text exactly. ” Hi Sharon,I hope you and the family are looking forward to a festive and relaxing Christmas. I have some great news,someone saw the news piece on Jamie this past Monday and called our office in Austin to donate a walk-aide for Jamie. The walk-aide showed up at my house today and I can come to RI next week to get it programmed for Jamie.” UNBELIEVABLE!!!! CHRISTMAS MIRACLE RIGHT!!! There was not a dry eye in the house. I was trying to fight back the tears as I didn’t want Lisa’s husband to see me cry. I have that rep as being tough and wanted him to keep that idea. This is the best Christmas. A complete stranger caring for my baby. We don’t know who you are but thank GOD for people like you on this planet. It kills me that children in this country have to go without sometimes but know Jamie doesn’t have to. I can’t tell you all how much this means to us. This will be life changing for Jamie. This machine is so expensive but it can accomplish amazing things for the user. I thank you so very much from the bottom of my heart. May God Bless you always. We are humbled by all the support Jamie has and greatful for each and every one of you who help support her. Lastly we would like to thank Nick Mattera for all his work on this web-site so we can remember all the good things to take away from this journey. Not that we will ever forget Friday,December 24th,2010 the day an unknow person made an incredible impact to our daughters recovery. GOD BLESS Jamies mom
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. 
Sharon Coyle is 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.