Stroke Smart Magazine
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Share Your Experiences
How Facebook Created a Stroke Community for Sara
This column is designed to provide insights and education
about how stroke survivors and caregivers can use the Internet effectively
during stroke recovery.
Tim Culver was away on a business trip when his then
42-year-old wife, Sara, suffered a stroke. Overnight, he became her caregiver
and advocate. Since then, he has published a book called Saras Story,
documenting the experience through stroke recovery. Culver also published a Web
site, sarasstory.org, and started a group page on the popular social networking
site, Facebook. While book sales continue and his Web site traffic steadily
grows, it is the Facebook page that has prompted story sharing between fans,
resulting in a community of people who might not have otherwise known each
other. In effect, Culver has become a new type of grassroots advocate for
stroke simply by using the Internet.
The ways people learn about disease and how to manage their
health through personal knowledge and the expertise of their doctors are
changing. About 65 percent of Americans are regularly online searching for
health information. Patients and caregivers are going beyond online research
and heading to health portals such as WebMD and social networks such as
Facebook to find people like them and to share experiences.
Yesterday, a woman posted a story about her 35-year-old
daughter-in-law who suffered an acute stroke, Culver said of his Facebook page.
She has three children at home and the womans son faced a very similar
situation to what I went through.
Talking about his stroke experience online has given him opportunity to
help and encourage other survivors and caregivers, Culver says.
Browsing the Internet presents a challenge for some
survivors without access to computers or who are unable to use a computer
because of a disability. National Stroke Association recognizes this gap and
strives to provide other resources alongside web-based activities. However, as
the statistics continue to grow and reveal more people of all ages are online
for various reasons whether it is to
connect with others or find valuable information its clear the Internet is an important
Join the 2,000 (and growing) stroke advocates on National
Stroke Associations Facebook page by visiting stroke.org/facebook.
Get Online in Your Community
If you want to help educate someone who doesn’t know how to
use a computer or have access to a computer or the Internet, consider visiting
a local public library (publiclibraries.com)
or a community center where staff can help the person learn for free.
Free Online Resources
- CarePages: Patient Web sites and blogs that connect family
during a health crisis. carepages.com
- Facebook: Social networking space where users can join
networks organized by city, workplace, school and region to connect and
interact with other people. facebook.com
- Twitter: Social networking and micro-blogging service that
enables users to send and read other users updates known as tweets. twitter.com
Find out more about these resources and how to join them by
Taryn Fort is director of programs marketing and
communications, National Stroke Association.
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