FDA Circulatory System Devices Panel Votes to Approve Amplatzer PFO Occluder


Post by David Dansereau,MSPT

Know-Stroke.org

On May 24,2016 I provided patient testimony at the Circulatory System Device Panel at the FDA along with Bray Patrick-Lake and Peggy Mahrt of the PFO Research Foundation and several other patients who also traveled to Washington DC to share their stories.

Bray Patrick-Lake, David Dansereau,Peggy Mahrt provided patient testimony at the FDA Circulatory Device Panel for Amplatzer PFO Occluder. Photo courtesy of PFO Research Foundation

 

I wanted to share my FDA  testimony and my story of why it may finally be time to change my Facebook profile photo in today’s post on know-stroke.org

David Dansereau of Know-Stroke.org
David Dansereau of Know-Stroke.org
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Canadian Stroke Survivors Weigh In


Stroke Survivors Bring Great Benefit to Shaping Research

Surviving a stroke is a really confusing experience (to say the least), and unless you have lived through it you can’t really understand the complexity of the situation you are faced with.  When I read about great work that is being done to give stroke survivors a better voice weighing in about what it was like and what would have helped them seek treatment faster I like to share it.   This is great work, and I think we need to do more of it!  As mentioned in this article,  better help certainly begins with better awareness.  The survivors also mentioned more access to care and overcoming those barriers to getting affordable stroke rehab is also needed.

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Many survivors often say they would have acted differently if they had more information on recognizing and dealing with stroke symptoms and if they knew of all the rehab options and technologies that were open to them.  Read the article here in the University of Calgary’s Utoday

Get Real


 

After a Stroke

Thank you to Nancy Coulter-Parker, Editor for Stroke Smart Magazine for a great interview and article in the current 2016 edition.  Nancy featured some of my top tips for goal setting after a stroke in their “Ask the Expert” column.

Get Real is a great headline, especially for the topic of goal setting.  Here are my top five tips from the article for getting real(istic) with your goals:

  1. Find a Starting Point
  2. Set a Road Map
  3. Know Who is on Your Team
  4. The Power of ‘Why”
  5. Be Accountable

To learn more about each of these tips, please read the article on StrokeSmart

These tips were from my book, Body in Balance, as well as from my Stroke Recovery Goal Setting Webinar. Those resources are listed below.

Resources:

Body in Balance Book

How to Set Smart Goals after a Stroke Webinar

Stroke Smart

By the way, here was my Goal in the picture below:

Read the article to learned how I planned for it….

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ComeBackStrong App Review


ComeBackStrong App


by the National Stroke Association

CB_Circle_BluGry_500pxIn my last post I reported on the ComeBackStrong Movement for stroke announced by the National Stroke Association. ( See Previous ComeBackStrong Announcement )

In this post I am following up with a video review of the ComeBackStrong App.   Designed with feedback and suggestions from stroke survivors and caregivers, this free app by the National Stroke Association is advertised to:

  • Keep track of your medications and set reminders
  • Provide you with exercises to strengthen your arm or leg and improve balance
  • Keep your medical information in one place
  • Provide nutrition and diet guidelines
  • Store reputable stroke information at your fingertips

My Video Review of the ComeBackStrong App

My App Review Summary:

Pros:

  • (+) Clean design, easy to get started (although a welcome video with quick start instructions would be nice addition)
  • (+) Medical Info,Medication,Contacts Entry and Emergency (Send Help Feature) are all excellent

Cons:

  • (-) No Goal Setting Feature
  • (-) Currently only 3 Exercises in Exercise Tracker

What Do You Think of The App?

I gave you my 2 cents, now what do you think? Did this app meet your expectations? Comment below please!  Also please take our quick poll to chime in if you are already using the app, you think you’ll use the app now that you know about it,  or even if you think you are unlikely to use the app.  If you completed the survey when the app was in development we would appreciate your feedback if you feel it met your needs.  Thanks!

Watch this related video for more on stroke recovery goal setting:
https://youtu.be/geAoDoZvD44

Register for my free stroke recovery goal setting webinar:
http://www.know-stroke.org

 

See Previous ComeBackStrong Announcement

#Comebackstrong


The #ComeBackStrong Movement

#Comebackstrong posted for the National Stroke Association


The National Stroke Association reports on their new website that “Unlike other survivor communities, there had been no unified symbol, color or movement to provide strength and celebration to stroke survivors and their circle of care. Until now.”  [Sidebar:  I agree with this statement completely, and commented on this previously here.]

If you’d like to hear inspirational stories from Come Back Strong Champions as part of a new campaign by the National Stroke Association,   click on the new #comeback strong logo below  to learn more.

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Read similar posts:

Does stroke awareness need a better color or better sponsor?

Is Your Body in Balance?

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New Report Released : Closure versus medical therapy for preventing recurrent stroke in patients with patent foramen ovale and a history of cryptogenic stroke or transient ischemic attack


PFO Closure vs. Medical Therapy


Published Sept. 8 2015
Cochrane.org

PFO-know-stroke-dot-orgThe authors of this report wanted to compare the safety and effectiveness of transcatheter device closure (TDC) versus medical therapy in people with a patent foramen ovale (PFO) who have suffered a stroke of unknown cause in order to prevent strokes or similar events occurring again.

Key results: The Cochrane Report  found that, “when compared with medical therapy, TDC failed to show any significant benefit in reducing the risk of recurrent stroke or similar events. However, there was a possible protective effect on recurrent strokes in those participants for whom an Amplatzer device was used compared with medical therapy. We did not find evidence that TDC increased the rate of serious adverse events overall. However, TDC increased the risk of new-onset atrial fibrillation (where there is a problem with the rate or rhythm of the heartbeat) and may be associated with the type of device used.”

Read the full Cochrane Report on PFO closure vs. medical therapy 

Authors: 
Li J, Liu J, Liu M, Zhang S, Hao Z, Zhang J, Zhang C

Chime in!  

Have You Had PFO Closure?  Take Our Quick Poll:


Many patient’s report improvement in symptoms and sometimes even complete resolution of symptoms after PFO closure, while other patients report mixed results.  If this applies to you, I hope you’ll chime in here how you feel after closure in this very unscientific anonymous poll:


 

See Our Previous PFO Poll:

Want to tell Us More about Your PFO Story?

10 Year Old Girl Uses Knowledge of Stroke to Save her Grandpa’s Life


Source: Steve Harris / News 4 St. Louis,Mo. (KMOV.com)

Kids are Never too Young to Know-Stroke and SAVE Lives!

Follow the link and watch this great video to learn how the young bright mind of 4th grader Sophia Tabors recognized the stroke warning signs and took FAST action to save her grandpa.  As Steve Harris from News 4 reports in this video, Sophia learned what to do from her 4th grade science fair project on Strokes.

Great Job Sophia!

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Source: KMOV.org -Harris Hero: “Fourth grader used science fair project to save grandpa’s life”

[Personal Sidebar: Sophia’s story is another great example of why we need stroke education in schools early! -see my Bright Minds Campaign for more info] Source: http://www.kmov.com/story/29623746/fourth-grader-used-science-fair-project-to-save-grandpas-life http://www.know-stroke.org/brightminds/ KnowStrokeTshirtFront copy