Know-Stroke.org

Watch “Stroke Recovery Documentary – Christian Pettinato” on YouTube

David Dansereau — Sat, 24 Dec 2011 12:18:32 +0000

Filed under: Local Press Tagged: know-stroke, neuroplasticity, stroke recovery

Even Hercules Can Have a Stroke

David Dansereau — Wed, 19 Oct 2011 23:13:58 +0000

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.

Filed under: Local Press, stroke, Stroke Awareness Tagged: David Dansereau and stroke awareness, Hercules's Stoke, Kevin Sorbo, stroke connection, stroke recovery guide

Gore Medical Products Division Purchases Closure 1 Data from NMT Medical

David Dansereau — Wed, 19 Oct 2011 18:25:36 +0000

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

Filed under: Clinical trials, Local Press, PFO, stroke Tagged: cryptogenic stroke, David Dansereau Stroke Blog, gore medical, know-stroke.org, nmt medical, patent foramen ovale treatment, stroke and PFO

PFO, patient identification cards and fish tanks?

David Dansereau — Wed, 21 Sep 2011 20:00:27 +0000

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.

David P. Dansereau for know-stroke.org

Filed under: Advocacy, Local Press, PFO, stroke, Stroke Awareness Tagged: David Dansereau and PFO, know-stroke.org, patient guide for PFO, patient registry for PFO septal occluders, pfo and exercise, pfo device erosion, pfo exercise guidelines

PFO and Cryptogenic Stroke:Another Runner Shares his Story

David Dansereau — Tue, 20 Sep 2011 15:08:47 +0000

Following this story
Medical Mystery : The Runner who lost his voice
http://www.nationalpost.com/m/blog.html?b=life.nationalpost.com/2011/09/20/medical-mystery-the-runner-who-lost-his-voice&s=Opinion

Filed under: Advocacy, Local Press, PFO, Share Your Story, stroke, Stroke Awareness Tagged: cryptogenic stroke, know-stroke.org, pfo and stroke, stroke suvivor

“Upload” more Brain Power? Is this the future of Stroke Rehab/Recovery ?

David Dansereau — Sun, 11 Sep 2011 18:57:40 +0000

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.

By the Way:

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.

David Dansereau for know-stroke.org

Filed under: Local Press, Rehabilitation, stroke, Tools for Recovery Tagged: david dansereau and know-stroke.org, David Dansereau and stroke awareness, Ed Boyden, emerging stroke science, optogenetics and stroke rehab, stroke and PFO

Flip Flops, Groin Kicks and Physicians without Heart have no place in PFO Patient Care

David Dansereau — Mon, 15 Aug 2011 20:08:32 +0000

Flip Flops, Groin Kicks and Physicians without Heart have no place in PFO Patient Care

By David Dansereau,MSPT

for http://www.know-stroke.org

I admit, I’ve needed a boost to get back to my know-stroke blog after almost a month away from posting. You see, I’ve been working hard at expanding my physical therapy business recently but have never lost sight of my goal for this blog and/or for the larger vision of our non-profit group the PFO Research Foundation, for which I currently serve as Vice President. It took several recent impactful posts by PFO patients on my blog who shared their stories recently here to get me going again. I’m not going to say it took a groin kick because this is the exact statement a physician made at our 2011 PFO Summit in Boston last month that has left me short on words until this post. The recent patient stories I reference you can find here: See Christine’s and Stephanie’s recent posts. They both highlight the continued need for better patient education for PFO/stroke/migraine. As I read their stories I had a flashback to our PFO Summit and to the physician who will remain unnamed.

This physician addressed a roomful of medical professionals and a handful of patients as he spoke at conference about PFO and migraine. In his presentation he proceeded to describe what advice he would suggest if a friend asked if he should consider PFO closure as an option for managing migraines. I am paraphrasing because I haven’t yet been given the opportunity to review the replay of the conference, but his advice is stuck in my brain because it was so out of character and inappropriate. Implying that the patient would be better off “getting kicked in the groin” than having a PFO closed percutaneously is ridiculous, and perhaps riduculous is just the angle this doc was going for, but that was his advice and I infer his medical opinion of PFO closure. Perhaps too, medical advice like this is also exactly why patients like Christine and Stephanie and many more in our patient group need to have their stories told to demonstrate the need for better, much better care from the medical community.

My advice to physicians-Stop flip flopping, as many of your colleagues are currently doing when it comes to deciding how to best treat PFO. I hope someone from conference will step up and address the flip flop issue here (please comment below).
My advice to patients- Ask questions,get references,research and list your pros and cons, ask more questions,even if you know the answers may be potentially ugly and by all means get involved to make a difference. Inquire and learn all there is to know about clinical trials and the device options vs medical management,then once all this work has been completed sleep on it until your gut feels at rest and your heart will then be ready to do the heavy lifting ahead.

Oh, and speaking of heart, Christine said it best at the end of her recent post,

“Always keep an open mind, and even more importantly, an open heart.”

Filed under: Clinical trials, Local Press, PFO, Share Your Story Tagged: cryptogenic stroke and pfo, David Dansereau and PFO, david dansereau post at know-stroke.org, hole in the heart, Migraine and PFO treatment, patent foramen ovale treatment, PFO and stroke awareness blog, PFO Patient Care options, pfo research foundation, stroke recovery

The American Heart Association Stroke Outcome Classification

David Dansereau — Thu, 14 Jul 2011 00:44:33 +0000

View Executive Summary
http://circ.ahajournals.org/content/97/24/2474.full

Filed under: Local Press, Rehabilitation Tagged: American Heart Association, David Dansereau, know-stroke.org, Stroke Awareness, stroke outcomes

By what age is your brain fully developed?

David Dansereau — Fri, 08 Jul 2011 21:27:41 +0000

Know-Stroke.org

View This Poll
Filed under: Local Press, Polls Tagged: brain age, brain development, David Dansereau, know-stroke.org poll, neurodevelopment, When is a brain fully developed

“You Have Had a Stroke”-What to do next?

David Dansereau — Mon, 20 Jun 2011 16:45:48 +0000

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”

David Dansereau for know-stroke.org

Filed under: Local Press, PFO, Rehabilitation, Share Your Story, stroke, Stroke Awareness Tagged: David Dansereau Stroke Blog, know-stroke.org, Liz Bestic, patent foramen ovale exercise guidelines, patent foramen ovale treatment, pfo exercise guidelines, Stoke and PFO research, Stroke Awareness