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2012 Issue 3: SUPPORT GROUPS - Champions of Hope

Social Media for Younger Stroke Survivors—a Caring Community 24/7

Yahoo and Facebook pages offer a world of support

By Joan Christensen

Kristi Jones was only 29 when she had her brainstem stroke 12 years ago. And with two young children, ages 5 and 10, she had a lot of questions about how to manage her very different life circumstances.  So, she got online looking for information and advice for stroke survivors in her age group who were facing similar parenting and social challenges. But she couldn’t find much.

“I belonged to a couple of groups [at first] but noticed that all the younger survivors were scattered around,” Jones explains. “Since younger survivors have different issues than their slightly older counterparts, I thought they should have their own group of peers to discuss those issues.”

Since the majority of strokes—about 72 percent—occur in those 65 or older, most support and information is geared toward older survivors.  But younger survivors may be juggling school, growing careers, young families, new relationships and other issues that make their experience very different.

So Jones created an online support group for younger survivors who post messages and chat at http://health.groups.yahoo.com/group/stroketalkforyoungpeople/. Her priority is to provide coping strategies, information, tips and friendship.

Jones’ motivation for taking the support group online was simple. “Not everyone can attend an actual physical group for various reasons but with an online group, members can get on their computers in privacy and get support any day, any time, wherever they are.”

The 408 current members are from all over the world, including survivors from the United Kingdom, Ireland, Australia, New Zealand, South Africa, Africa and the Philippines.

In the past few years, Jones has expanded her online presence with Stroke Talk, a Facebook page that welcomes all ages. Its 273 members check in at www.facebook.com/groups/strokeforFBsupport/.

According to Jones, some social media groups for survivors can occasionally be unfriendly to members—a situation that Jones won’t tolerate. As the administrator, she and a moderator monitor all the postings on at least a daily basis, and in-fighting or negative personal messages are not allowed on the group wall.

Jones points out other advantages of her online group besides global reach. “I’ve had various forms of aphasia in the past 12 years and found that putting my thoughts into written words has helped me find the right words to express myself verbally,” she says. And, she has noticed improved communication in other group members. “The more I see a survivor post messages, the more the posts improve as the years go by,” she observes. 

In reaching out to provide a new resource for other young survivors, Jones has filled a gap that has helped her as much as group members. 

“I saw a need for other young survivors like me that needed somewhere ‘just for them,’ she says.  “I consider many of these people dear friends even though I’ve never met them personally. I would be lost if I could no longer help others like myself,” she admits.

For Jones, the online support has proved invaluable. “My first group and its earliest members have seen me through so much, including many ups and downs over the years,” she confides. “It has made all the difference in not only my life but in my recovery and I wish to share it with others. If this group impacts just one person I’ve served my purpose.”

Social Media Sites for Stroke Survivors

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National Stroke Association’s mission is to reduce the incidence and impact of stroke by developing compelling education and programs focused on prevention, treatment, rehabilitation and support for all impacted by stroke.

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