Stroke and Young Adult (SAYA) Program at Tufts Medical Center


Help needed to learn more about stroke and young adults.


Can you share your story?

post by David Dansereau,MSPT Know-Stroke.org

David Dansereau at Know-Stroke.org

A stroke is devastating at any age.  When you are forced to deal with a stroke at a young age, there are many additional challenges during your recovery.  From getting back your independence, restoring your identity and returning to life after this life changing event, there are many obstacles to overcome. Typical current models for treating and guiding individuals after their strokes often do not account for long-term survival and the unique recovery needs encountered by young adults that suffer a stroke.

With the help of experts in specialties across Tufts Medical Center, Vascular Neurologist Lester Y. Leung, MD hopes to make a difference in young stroke survivors lives and improve the model of care for young survivors.  Dr. Leung has built a comprehensive, longitudinal care program for Stroke and Young Adults (SAYA) to help young adult and pediatric stroke survivors navigate their lives after stroke.

The Stroke and Young Adults (SAYA) Program is built to help identify causes of your stroke, optimize prevention of future strokes, estimate your risk for recurrent stroke and late complications of stroke, and provide counseling on stroke survivorship.  Dr. Leung currently needs your help and wants to learn about your experience with stroke.

Here is a brief intro to the SAYA interview study:


Are you a stroke survivor? Did your stroke or TIA (transient ischemic attack) occur between ages 18 and 55? Dr. Lester Leung and his team at Tufts Medical Center are interviewing young and early middle age adults about their experiences with their strokes to better understand how people develop symptoms in these age ranges, how they decide to seek medical care, and how they make decisions about their health after their strokes. If you are interested in participating, please contact Dr. Leung at lleung@tuftsmedicalcenter.org. Interviews usually take about 30-45 minutes and can be done in person or over the telephone. The team is giving participants a $15 Amazon gift card as a sign of gratitude for participation in the study.

 

What do you need as a stroke survivor outside the clinic?


Outside the clinic and hospital, the SAYA Program at Tufts would like to help you connect with other stroke survivors and their families to get out of the house, share experiences, or just have some fun! They’re interested in hearing your ideas and preferences for the social/educational/support aspect of the Stroke and Young Adults (SAYA) Program at Tufts Medical Center. This program is the first and only one of its kind, and we’d like to tailor it to your interests. Would you like the events to focus on being fun, or would you like an educational or support piece built in as well? What sort of things would you like to do? Let them know here.

They’ve invited you to fill out the form SAYA Social Survey. To fill it out, visit their survey here.


Resources:

Learn more about Dr. Leung

Overview of SAYA Program at Tufts

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New American Academy of Neurology (AAN) Guidelines on PFO Closure in Cryptogenic Stroke are Discouraging


David Dansereau
David Dansereau (Know-Stroke.org)

AAN Ruling Again on P values NOT Patient Values

[In my opinion this is very discouraging news and more evidence to show there is still a great divide in how neurologists and cardiologists treat cryptogenic stroke with known PFO.]

PFO Closure Tipping Point

Despite the hard work of PFO patients (like myself) to make a difference by providing testimony and  their real life perspectives to the FDA recently, it looks like the AAN is unmoved and keeping with their same position on how to best mangage and educate patients that have had a cryptogenic stroke with confirmed  PFO.

 

Read the post of this news from TCTMD

 

Did you grab this FREE About Herbs App?


A Guide to Botanicals,Supplements, Complementary Therapies and More

If you are on our Know-Stroke.org Member News List you already received this free About Herbs app link.  I wanted to also share this information with my stroke community here so you don’t miss this resource.  I’ve learned from our Smart Moves Webinars that many stroke survivors often have  questions about supplements and herbs and I found this app to be a helpful free tool to provide some of those answers.  Learn more here….

Learn about this Free App in our latest Know-Stroke.org News Post

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

Is PFO closure now a black hole for medicine?


-by David Dansereau,MSPT  Know-Stroke.org

I admit, I was drifting in thought as I watched the movie Interstellar with my boys over the weekend. The 2014 movie stars Matthew McConaughey who plays Cooper, an ex-pilot who must leave his family on Earth behind to lead an expedition beyond our galaxy through a black hole to discover whether mankind has a future among the stars. My boys love space movies and usually I am guilty of falling fast asleep between the two of them by 30 minutes in, but this movie kept me awake for nearly 3 hours.  I was thinking if I could speed up time like in the movie, where will PFO closure be 7, 15, 30 years from now? Also, if I could go back in time, would I elect to have PFO closure again?? PFO closure at one time early in my treatment after my stroke was described to me by a treating physician as a condition stuck in a “grey” area of medicine.  Unfortunately, I believe PFO closure, along with research into this area is now changing colors and drifting more from grey to black.  I wonder, does PFO research still have a place in medicine?

pfoblackhole_knowstrokeorgThe black hole

Beyond the issue of reimbursement which has been pulled into the black hole years ago, patients simply looking for best practices on managing a possible pathological PFO  have been left behind too long in the mission to explore and treat PFO’s. The medical community has mostly failed us (patients) by not defining a clear patient pathway.  Patient’s have united together over time to try to make a difference.  For example, there have been groups of patient’s that started the PFO Research Foundation out of frustration and lack of united efforts by the medical community to hear patient’s voices. I disclose I was once part of this patient group at the beginning.  Currently, however,  many of these patient efforts remain “under construction” like the vessel being constructed in Intersteller  in attempt to bring humans to a better place. There have also been many smaller, all well intended, social media groups that have entered the PFO galaxy trying to fill the void left by medicine.  Several PFO debate and support groups surrounding the condition have spun off from migraine and stroke to other possible related disorders.  All either lack anything new to report, or the ability to gather new  funding resources to lead serious PFO patient directed research groups like this forward.    At the same time, most physicians that remain in the PFO space continue to argue and take sides over best practices for management.  Either way, the PFO closure debate slowly is making almost no measurable progress and patients are still left to look to the internet for best practices, like Cooper did to space, for answers.  While some patients along with their physicians await FDA ruling, many physicians caught in the controversies that surrounds PFO closure have already made up their mind and stopped doing PFO closure procedures as reimbursement has dried up.   Some have  simply dismissed the option from the start, others are waiting and holding their opinions silent adrift in a black hole of sorts.

While we all wait, there has been some new data and PFO research analysis conducted by pooling data.  There are also a few international studies and groups slowly trying to collect, analyze and report new data.  I wish, however, as do many PFO patients waiting on the launchpad here in the U.S.,  that we could somehow rocket this effort forward much faster so we are not looking back like Cooper at a lifetime that has passed him by trying to solve a problem.

A surprising 75 percent of Young Americans under age 45 STILL do not know the signs and symptoms of stroke!


Young Bright Minds at Risk


KnowStrokeTshirtFront copy

post by David Dansereau-Know-Stroke.org

To make matter worse, many of the participants in a recent survey on stroke warning signs admit they would likely wait out the symptoms — weakness, numbness, difficulty seeing or difficulty seeing — of a potentially deadly brain episode to see if things got better on their own.  This “wait and see” approach could be a tragic mistake, because stroke can often be successfully treated if it is caught early.

The first three hours after a person starts to experience stroke symptoms are often referred to as the “golden window,” when doctors can often minimize or reverse damage by restoring blood flow to the brain. Without treatment most will end up dying or with permanent disability.

stroke911knowstrokeorgThe stroke survey was commissioned by the Ronald Reagan- University of California, Los Angeles, Medical Center.  That national survey included responses from 1,009 people, 466 of whom were under 45. Without understanding the danger of the symptoms, the vast majority of those younger people surveyed, 74 percent, say that they wouldn’t seek immediate help.

Dr. David Liebeskind, a professor of neurology and director of the neurovascular imaging research core at UCLA is not surprised by the statistics. “They are in line with what we’ve been seeing,” Liebeskind says. Many younger people dismiss telling symptoms because they think that stokes only occur in the elderly. While they may be more common as people age, “we see them at any age from birth till 105,” Liebeskind says.

Making matter worse, studies have suggested that strokes among people under 45 have increased by as much as 53 percent since the 1990s.

A surprising 75 percent of Americans under age 45 do not know the signs and symptoms of stroke. Even more disturbing, many say they would likely wait out the symptoms — weakness, numbness, difficulty seeing or difficulty seeing — of a potentially deadly brain episode.  Denial is partly why young people don’t seek immediate treatment. Strokes often don’t “Hurt” like a broken arm or heart attack where people need to get help right away.  Symptoms of stroke can be misinterpreted as a headache from stress, a hangover from too much drinking or lack of sleep- therefore sometimes young stroke victims make the mistake of just trying to sleep it off.

And that could be a tragic mistake, because stroke can often be successfully treated if it is caught early.

The first three hours after a person starts to experience stroke symptoms are often referred to as the “golden window,” when doctors can often minimize or reverse damage by restoring blood flow to the brain. Without treatment most will end up dying or with permanent disability.

What you should do:

Know the Stroke Warning Signs. Act in time. Call 911

Here are some STROKE warning signs to look for:

  • Sudden numbness or weakness of face, arm, or leg, especially on one side of the body.
  • Sudden confusion or trouble speaking or understanding speech.
  • Sudden trouble seeing in one or both eyes.
  • Sudden trouble walking, dizziness, or loss of balance or coordination
  • Sudden severe headache with no known cause.

High Blood Pressure and Obesity are Known Risk Factors for Stroke->Learn what you can do to lower your risk!

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References:

MedlinePlus

Today

 

 

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