Just pick up a prescription of this Cox-2 inhibitor….

Interesting Fact: While studying the drug’s potential as an anti-cancer drug, the National Cancer Institute discovered that…

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!

Read this report on dangerous-pain-medicines

Source: http://www.my-physical-therapy-coach.com/dangerous-pain-medicines.html

Here’s a potential scenario: 

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.

By David Dansereau for Know-Stroke.org

(I disclose openly that I have no disclosures)

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.

David P. Dansereau for know-stroke.org

A healthy 8 year old boy is playing with friends when suddenly he begins to experience severe left eye pain.  He goes to pick up the ball and his right arm isn’t cooperating, allowing the ball to continue to escape his grip.  You also notice his speech just doesn’t sound quite right.  What now?

The scenario outlined above is based upon a slide presentation by Rebecca Ischord, MD Director of the Pediatric Stroke Program at the Children’s Hospital in Pennsylvania.  I had the privledge of  attending her presentation at the International Stroke Conference in Los Angeles in February on the challenges and opportunities on detecting and educating physicians and the public about childhood stroke.

Here’s the presentation-> ISC2011childhoodstroke

If you don’t have time to view it now, (and you should if you want to really know-stroke), a quick  presentation “take-away” that  hit home was when Dr. Ischord mentioned one of the biggest barriers that needs to be overcome is the misconception that “everyone knows kids don’t have strokes”.  That one sentence always sends shivers down my spine and continues to be the motivator behind the Community Impact Grant proposal I have written for the American Stroke Association.  Now more than ever we need to find cost effective and “viral” ways of getting the word out to teach stroke awareness, beginning with our youngest Bright Minds, our kids.  If you happened to read my last post, you are aware that Governor Deval Patrick of Massachusetts recently cut all funding for the stroke signs and symptoms campaign in that state.  I’m sure other state budgets already have trimmed or eliminated their prevention campaigns or will soon cut off funding  in these difficult times.

If you want to learn more about my Bright Minds proposal, click here.

Please help my good friends at the American Heart / American Stroke Association(AHA/ASA) in Massachusetts as they are planning an important stroke awareness event at the Massachusetts State House on March 31,2011.

This event will help spread the critical message that recognition and timely care of stroke can prevent death and disability. Unfortunately, the Governor removed all funding in his budget for the stroke signs and symptoms campaign so they need your help! They are looking for people like you or who you may know living in Massachusetts who will share their stories with state legislators about how stroke has affected your life either as a survivor, caregiver or passionate advocate.

According to an email from AHA/ASA the day will begin at 11:00 AM with an Advocacy 101 to help prepare you for your legislative meetings. They will provide a boxed lunch and then you will have the opportunity to meet with your legislators to share your story and express the importance of the STOP Stroke Program funding. Speaking points will be provided as well as a staff person to go on the visits. The day will end by 4:00 PM.

If you are from Central and Western Massachusetts, they will have a bus to transport you to the State House for the event.  The bus will pick up participants at our AHA Office, 54C Wayside Ave, West Springfield and in Auburn Park and Ride lot off 1-90 at Exit 10 (where 1-90 meets 290)

For anyone interested in attending please register by clicking the below link:

http://www.zoomerang.com/Survey/WEB22BYKZY8XXC/

If you have questions or please call Allyson Perron at 508-935-3943

Please help if you are  Massachusetts resident and have a personal message you’d like to deliver to Governor Deval Patrick.  As a stroke survivor, I know first hand the expenses that come after a stroke for diagnosis, treatment/rehabilitation and lost wages.  We are all facing tight times, but I urger Governor Deval Patrick not to be “penny wise and pound foolish” when it comes to stroke education and prevention*.-David Dansereau

[My Sidebar] Here’s what I uncovered while researching the Governor’s position on “investing in prevention”  for health care.  What happened ?  Was this another case of an empty campaign promise??  Why is stroke not considered in prevention in Massachusetts??

Prevention and awareness are the least expensive and most effective way to fight against our nation’s #3 killer and # 1 cause of long term disability.- Know-Stroke!!

copy——————————–

Invest in prevention

When diagnosed early, many illnesses can be managed at far lower cost than if left until they breed more serious health problems. To keep our citizens healthy, I will invest in a robust public health delivery system. I will place a special emphasis on adequate childhood immunizations, effective drug & alcohol abuse education, HIV/AIDS prevention & care, and early cancer detection programs. Common sense prevention programs like these reduce system-wide costs, which saves money for insurance ratepayers.Source: Moving Massachusetts Forward, Patrick’s policy booklet, p.12 Sep 15, 2005

Focus on prevention and wellness programs

I envision Massachusetts as a model for public health stewardship, a state that gets healthy and stays healthy-emphasizing disease prevention and wellness programs that help reduce the total cost of illness, injury and disability. We will have effective programs to assure childhood immunizations, and to address drug and alcohol addiction, mental health needs, gun safety and other violence prevention, and HIV/AIDS screening, treatment and prevention.Source: Campaign policy booklet, “Moving Massachusetts Forward” Sep 15, 2005

Source:

http://www.ontheissues.org/governor/Deval_Patrick_Health_Care.htm

post by David Dansereau for Know-Stroke.org

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.

David Dansereau (Know-Stroke.org)

Here were some of the my highlights from ISC 2011:

• PFO/Heart/Brain/Research: MingMing  Ning, M.D., assistant professor of neurology, Harvard Medical School, vascular neurologist, Massachusetts general Hospital, Boston presented “How the Heart Whispers to the Brain: Serotonin as Neurovascular Mediator in Patent Foramen Ovale (PFO)-Related Stroke” With further investigation Dr. Ning’s important research may help explain and quantify how and why unfiltered blood which bypasses the detoxifying lung filters through a PFO may trigger oxidative stress to the brain by way of the heart. I hope we can get Dr. Ning on a call for the PFO Research Foundation soon because her exciting research might be the first to finally quantify and possibly confirm why the heart of a PFO patient could be guilty of “dumping trash” out the “back door to the brain (PFO)”.  I know many patients (including myself) would love to hear more about Dr. Ning’s research to gain a better understanding of the “why” (after PFO closure) they immediately report increased energy and cessation of headaches/migraine.  Congratulations Dr. Ning for your award and great work on this important and potentially ground breaking PFO/stroke-related research!

• Stroke Rehabilitation Research: The results of the largest stroke rehabilitation study ever conducted in the United States were announced at the International Stroke Conference. In this study stroke patients who had physical therapy at home improved their ability to walk just as well as those who were treated in a training program using a body-weight supported treadmill device, followed by walking practice.  The study found that earlier was better when it came to rehabilitation therapy. The patients who were not assigned to a study group until six months after their stroke recovered only about half as much as the participants who received one of the two therapy programs at two months. This finding suggests that either the treadmill training program or the at-home sessions are effective forms of physical therapy, and both are superior to usual care.  This is great news for stroke survivors and physical therapists to think “outside the box” when and how we deliver our services. [personal sidebar] I’m on the right track with my home stroke recovery guide.  For more on this rehab study click here.

David Dansereau wearing Tibion Bionic leg

• Great new technology for stroke recovery: I had the chance to try out the Tibion Bionic Leg as well as other great cutting-edge rehab technologies.  This promising technology (shown in this photo courtesy of Charlie Ungashick) can provide a robotic rehabilitation tool to help retrain impaired gait.  The challenge remains how to get these great tools in the hands of therapists and patients at an affordable price.

• The Food and Nutrition Connection with Stroke Risk: A report that was widely circulated in the news this week that came out of this conference was the increased stroke risk noted with users of diet soft drinks.  The increased risk of stroke was significant (61 percent higher risk of “vascular events”) with only one diet soda daily.  See more press on this study by clicking here.

• Dilemmas in Childhood Stroke: A study showed the symptoms and signs of acute ischemic and hemorrhagic stroke are similar in adults and children, but in children stroke is not considered early enough and patients do not receive brain imaging early enough. Rapid recognition, response and treatment of children with stroke will start with the development of pediatric brain attack protocols in the emergency department and pre-hospital setting. This presentation described how adults and medical professionals dismiss stroke warning signs in kids “because kids can’t have strokes” and points to the need for better awareness and community education as a first line defense in pediatric stroke.  [personal sidebar] ASA-Fund my grant and I’ll make it happen.  For the complete slide show of this presentation click here.

• Ok, what does Justin Bieber have to do with Stroke Awarness? Nothing as it turns out but my 10 year old daughter certainly thought this should be included as a highlight of my trip to LA.  When I arrived in LA I walked out the back door of my hotel and unexpectedly stepped right out on the LA premier of “the Bieb’s” new movie “Never Say Never” and along with it about a couple thousand screaming young girls.  BTW, I haven’t heard the end of it because I didn’t get a photo (or autograph) for my daughter, I just wanted to find a place to eat.

David Dansereau (Know-Stroke.org)

David Dansereau

Know-Stroke.org

Quick Reminder from the National Stroke Association:

Webinar:

Advocacy 101 and Introducing the Stroke Advocacy Network

Thursday, December 9, 2010 4:00 PM – 5:00 PM EST

Register

If you get a moment check out their brand-new stroke education site and watch the video recorded by their CEO, Jim Baranski announcing the website unveiling.

I find the new website much more accessible, and there are some new ways you can get involved online.  For example, I’ve already registered for their new Stroke Advocacy Network and when you go to the new site you can also sign up for a upcoming free webinar to launch the new network.

Overall, I believe the new site will make it easier for people to get involved in this important stroke education and awareness cause through the addition of the new social media components and better search capabilities.  By the way, now you can even easily search for my mobility articles from past issues of their publication, Stroke Smart Magazine here.

P.S. -Be sure to register  for their upcoming Virtual Health Fair where you can learn virtually anything about stroke. It’s open to anyone interested in prevention and recovery. Read more and register now – space is limited!

Stroke Website review by David Dansereau for know-stroke.org

David Dansereau (Know-Stroke.org)