Network of support groups are one of the best avenues for long term assistance for those who have survived brain injury. Increasingly, rehab stays are getting shorter and out-patient care is being curtailed. Network of support groups, largely run under the umbrella of the Brain Injury Association, are often the only place for survivors to learn strategies for better recovery. The network of support groups play an equally important role for caregivers. Most states BIA’s will list network of support groups on its web page. To find your states BIA website, go to http://www.biausa.org/state-affiliates.htm Otherwise, search “brain injury network of support group” and your local city.
DJ has found help and helped others with Facebook.
Network of support groups are at the core of TBI Voices. I personally bring the http://whoamIagain.com presentation to support groups several times a month. At these meetings I get the chance to discuss brain injury with both survivors and caregivers. It is at these network of support group meetings that we are able to recruit volunteers to participate in our interviews. In the next couple of months, we will be making support group stops in Tennessee, Florida and New York. The day of our interview both DJ and I attended a support group in Largo, Florida. But for DJ and because of DJ, the in person support group now has a meaningful supplement, on Facebook.
Let’s talk about Facebook. How did you get started on Facebook?
I was doing my daily report on the computer with just Yahoo! Mail. I never knew about the Caring Bridge, Facebook. I don’t think Twitter was around five or six years ago but, I didn’t know a lot of these things even existed and it was, uh, in 2007 or eight. It was kind of a tragedy. A friend’s sister’s 7-year-old daughter came down with Leukemia and she used the Caring Bridge.
And I went home, I went up, met up with a few high school buddies and all that and they’re like why don’t you join Facebook and I was still at Communicare and still in my irritable, and I said I don’t think you guys really want to see me post how I’m feeling right now. And, it was nice to go up there, see them, be with the family a little bit and then go back but I always said, you know, I’ll give Facebook a try or some of the other ones.
I didn’t know what would work, MySpace or whatever, but, um, I don’t remember exactly when I joined. I know it was after I left Communicare and I’d say it was about two years ago. I got at least my page going and then I got some high school friends and one of my friends wrote back and went, “OMG, DJ is on social networking. I never thought we would see the day!” Because I was out playing darts and I was playing softball or I was getting ready for a race. I was living life. I didn’t want to come home and get on a cell phone. I didn’t want to come home and send emails, uh, uh, uh. I honestly just did not care about that stuff and I don’t regret it.
But, now, it’s kind of a, a way of passing the day. I go from couch to, you know, I have a computer niche, which is about a quarter of the size of this room. It’s just a room, a computer with like three shelves so I don’t have a desk any more. But, you know, I can sit up there for a little while and I have to go sit down. But it’s nice. You can do the instant messaging. You get people are going to want to talk about this for the next couple of days. That’s nice. But it was mainly my high school friends said, you know, come on out and then my old restaurant friends, there was a bunch there and now it’s blown into this whole TBI. I didn’t know there was so much.
We started our web network of support information advocacy in 1996 with https://tbilaw.com In 1997, before there was a Caring Bridge, we published http://waiting.com which included the Bridge from Despair, http://waiting.com/waitingbridge.html That was our first collection of TBI stories, collected with the goal of giving those who had passed through those hospital doors, the opportunity to help themselves and through the connection of the internet.
TBI Voices is one further evolution to our commitment to brain injury information and network support. Now with the advent of Facebook,Youtube and other social networking sites, we hope that its message can continuously be refreshed and its communication more interactive.
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