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Listing: Stroke Resources for Patients and Families

condition

Media Type

Online Resource

Reviewed Date

Jan 25, 2024

Body

A stroke occurs when a blood vessel that carries oxygen and nutrients to the brain is either blocked by a clot or bursts (or ruptures).  When that happens, part of the brain cannot get the blood (and oxygen) it needs, so it and brain cells die.  This is a list of consumer health resources available online to provide education, support and wellness, and information on research.

The American Stroke Association is solely focused on reducing disability and death from stroke.
The website has information for public and professionals on effects of stroke, life after stroke, help and support groups, healthy living, and local outreach.
www.stroke.org
1-888-478-7653

CDC is the official Web site of the Centers for Disease Control and Prevention (CDC).  Here you can find up-to-date information on stroke risk factors, prevention, treatment, and CDC supported public health initiatives.
www.cdc.gov/stroke
800-232-4636

The National Institutes of Health through the National Institute of Neurological Disorders and Stroke (NINDS) developed the Know Stroke. Know the Signs. Act in Time. campaign to help educate the public about the symptoms of stroke and the importance of getting to the hospital quickly.  Patient and caregiver education fact sheets found here: https://www.ninds.nih.gov/health-information/patient-caregiver-educationThe website also includes info on research and clinical trials.
www.stroke.nih.gov
(800) 352-9424

For more than five decades, the Epilepsy Foundation has shone a light on epilepsy. The Foundation and its nationwide network of nearly 50 partners connects people to treatment, support and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid.
https://www.epilepsy.com/ 
(800) 332-1000

Created in 1946 as a grassroots effort in Illinois to help people with epilepsy, the Epilepsy Foundation of Greater Chicago is a not-for-profit, incorporated in Illinois, serving 43 counties, offering counseling, advocacy and educational services to people with epilepsy, their families, and the communities in which they live.
https://www.epilepsy.com/greater-chicago
(312) 939-8622

Additional Support:

Stroke Support Groups - RUSH Chicago
Third Thursdays from 2-3pm
www.rush.edu/health-wellness/support-groups/stroke-support-groups
(312) 563-2994.

Stroke Survivors Empowering Each Other (SSEEO) - SSEEO is a non-profit organization building a community to encourage, support and guide stroke survivors and families while providing resources to help meet the challenges of stroke.
www.sseeo.org/
888-988-8047

Life After Stroke radio Podcast Support with Christopher Ewing
http://www.thestrokechannel.tv/radiopodcast.html
Available on Apple, Spotify, Google, and heart

Simply Good Cookbook
As a trusted resource in your post-stroke journey, the American Stroke Association created a recipe booklet specifically with adult stroke survivors in mind. The recipes are designed for regular food texture; however, each recipe includes modifications in case your swallowing abilities have been affected due to your stroke. 
https://www.stroke.org/en/life-after-stroke/recovery/simply-good-cookbook?utm_campaign
 

Pediatric Stroke

Pediatric Stroke Family Tool Kit pdf from - International Alliance for Pediatric Stroke (iapediatricstroke.org)
https://iapediatricstroke.org/wp-content/uploads/2021/04/IAPS.links_.final_.4.12.21.pdf

Family Guide to Pediatric Stroke
https://www.heartandstroke.ca/-/media/pdf-files/canada/other/a-family-guide-to-pediatric-stroke-eng.ashx

Children’s Hemiplegia and Stroke Association
Your baby or child has just received a diagnosis of hemiplegia or hemiparesis due to an early stroke or a different cause. You’re suddenly thrust into the world you did not expect. How do you help your child live a full life while experiencing your own roller coaster of emotions? You are not alone.
https://chasa.org/

Children’s Hemiplegia and Stroke Association
4101 W. Green Oaks
Suite 305-149
Arlington, TX  76016

Support Groups

Stroke Support Groups - RUSH Chicago
Third Thursdays from 2-3pm (312) 563-2994.
www.rush.edu/health-wellness/support-groups/stroke-support-groups

Stroke Survivors Empowering Each Other (SSEEO) - SSEEO is a non-profit organization building a community to encourage, support and guide stroke survivors and families while providing resources to help meet the challenges of stroke.
www.sseeo.org/ 888-988-8047

Life After Stroke radio Podcast Support with Christopher Ewing
http://www.thestrokechannel.tv/radiopodcast.html
Available on Apple, Spotify, Google, and iheart

Caregiver resources: The Stroke Association has a list of support for families 
https://www.stroke.org/en/help-and-support/for-family-caregivers/caregiver-resources

 

Books

Pediatric Stroke Rehabilitation

My Stroke of Insight

Caplans Stroke: A Clinical Approach

Identity Theft: Rediscovering Ourselves After Stroke

Navigating the Complexities of Stroke

Stronger After Stroke: Your Roadmap to Recovery

The Aphasia Handbook

Healing the Broken Brain

You may also be interested in:

Listing: Stroke Camps (Adults)

 

This content is for informational purposes only and may not be comprehensive. Information contained does not imply an endorsement from Shirley Ryan AbilityLab, and does not replace the advice of a qualified healthcare professional.  See here  for further details.
© Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago)
Henry B. Betts LIFE Center – (312) 238-5433

Image by Bret Kavanaugh from Unsplash.com

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