Stroke Smart Magazine
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New Media, New Possibilities: Web Tools for Stroke Recovery
By Lindsey Larson
In today’s world of technology, stroke survivors can easily go to the Internet for information and inspiration throughout their stroke recovery journey. People from across the globe connect and interact with each other on what are called “social networking” websites. And, even better: Getting involved is easy to do from your own home!
MySpace (http://www.myspace.com/), a very popular social networking website, offers users an interactive experience with a user-submitted network of friends, personal profiles, groups, photos, music and videos.
In London, Edwyn Collins had been a musician, songwriter, performer and producer for 25 years. In February 2005, he suffered a stroke, following two cerebral hemorrhages (brain bleeds). Although predictions for his outcome weren’t good, his recovery has since been positive.
After the stroke, Edwyn’s son created a MySpace page. Edwyn’s wife and manager, Grace, has witnessed the positive impact it has had on her husband’s recovery especially from aphasia.
“It’s been so hard (for him) to recover written language; I don’t believe he would have made the progress he has without MySpace,” Grace says. His answers may be short and simple, but he enjoys talking about his stroke experience and many other things with MySpace friends and fans.
A year after coming home from the hospital, Edwyn was able to complete an album he had been in the process of producing before his stroke. The record was released in the summer of 2007. He may not be able to play the guitar, as his right arm has no controllable movement, but he is singing again, has relearned the words to his songs, and even performed with his band for the first time since the stroke.
Sarah White had a stroke in February 2003 at the age of 25, while living in Boston. After her stroke, Sarah moved to Honolulu, Hawaii, to live with her mother. The Internet — specifically a site called Facebook and her own blog — has since become a large part of her recovery process. Facebook (www.facebook.com), similar to MySpace, is also an international social networking website, connecting people and information via the Internet. A blog is essentially a personal online journal, updated frequently and shared with friends and family.
“My uncle introduced me to Facebook and I love it. I have connected with many old friends from high school and college,” Sarah explained. Sarah also joined National Stroke Association’s Facebook Cause page (designed for organizations and non-profit groups) and has encouraged her friends to join as well.
Soon after Sarah’s stroke, one of her friends set up an electronic mailing list so that her friends and family could post updates on her progress. Today, Sarah sends a weekly update to that list. She also posts information on her own blog, which is updated weekly and includes information about her recovery process, as well as personal interests and activities.
Sarah’s journey through recovery has been impressive. She was minimally responsive after her stroke and at the start of rehabilitation. Now Sarah walks with a cane, is able to use her right hand for some tasks, paints watercolors and is taking college classes. And, of course, she loves talking with friends on Facebook and her blog.
To join Sarah’s blog, visit http://sowhiteyjournal.blogspot.com/.
Lori Kaupas, a Philadelphia mother of three, had an ischemic stroke in January 2006. The stroke left her with right-sided paralysis, in a wheelchair and with total loss of speech. However, she began making fast and dramatic progress in rehabilitation, thanks to her will to succeed and her new friend and fellow stroke survivor, Diane Rein.
When the two ladies grew curious about rehabilitation techniques that weren’t available at their rehab center, Lori turned to the Internet for answers. She quickly realized that finding information was much harder than anticipated. She persisted, got creative and dug a little deeper. The information accumulated and Lori decided to do something with it.
“I wanted to help other stroke survivors find additional ways to recover and become more independent. I thought it would be a great idea to create a website,” Lori explained.
Stroke SOS (http://www.strokesos.com/) was born soon after. Today, Lori updates the site with new information each week. Through the site, Lori and Diane not only provide support and information, but also act as a personal support system for other survivors.
“Don’t give up. We will talk with you, we will cry with you. You can do it!” are common words of encouragement given to other stroke survivors.
National Stroke Association has also expanded its reach on the Web. With two MySpace pages, two Facebook pages and videos on YouTube, National Stroke Association is leveraging the Web to generate more stroke awareness. YouTube (www.youtube.
com) is the leader in online video and the premier destination to watch and share videos worldwide through the Internet.
To find National Stroke Association on the Web, go to: