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.
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.
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
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:
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:
(+) 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
(-) 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!
#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.
The 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.”
Li J, Liu J, Liu M, Zhang S, Hao Z, Zhang J, Zhang C
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:
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.