Interesting exchanges recently.

Lately, I've had some interesting back and forth from a few different people. Some I have met through Linked-In, and others on Facebook. A guy with one of the vet centers, seemed to have a promising idea about how I might get some participation by encouraging some vet centers to ask their members if they might like to connect to others with TBI, so that they might see that they are not as alone as it feels at times. It would be cool if there were a different way to reach out and obtain e-mail addresses, but who knows?

OK, I've started to assemble the group.

Admittedly, my circle of TBI friends is possibly smaller than that of others. I had a really good time communicating with a fellow through the use of communicator over Facebook, but Facebook limits the amount of text that can be displayed at one time, and as such probably imposes some limitations on expressing complex ideas with many words. I am hopeful that this largely e-mail distribution list way of engaging with other TBI survivors will work out like I am hoping that it will. I know from experience, that big distribution lists can become difficult to manage. With google groups, in theory, it is possible to access the groups through a web based interface, so if traffic were to become too big, accessing it through the web based interface should be fairly easy. I'd like for more disabled people to be accessing technology to engage with others. I understand that there was an article published about the use of Facebook among TBI survivors to build social networks, and engage with others. This article was written by someone out of Mount Sinai School of Medicine. From another conversation I've had with a caregiver, she revealed that there seems to be more supportive communities in New York City, maybe something about having a critical mass of people, or just the numbers of people with similar conditions.

I've had this idea for awhile. I'd like to see a non professional support group for TBI folks formed using the internet.

There appear to be many individual support groups built around certain people, who keep things going with their own content, and updating things through Facebook. For what it is worth, I did start a little hidden google group, for the non professional TBI support group, but there appear to be some obstacles to finding others who might also want to be part of the hidden group. So, I created a public facing page, just dealing with Traumatic Brain Injuries. I am involved with a VCU (Virginia Commonwealth University) study about trying to determine if having a focus group on Facebook might be beneficial for a small group of job seekers. I have a job, and I'm not looking to relocate, but it is interesting. Separately, as part of another Facebook group, I learned that dental issues seem to be relatively common following brain injury. Perhaps the VCU focus group shows that I might want to make the potential target audience larger than just the survivors of TBI.

Life is precious

Life is precious. We have so much energy about trying to preserve it. Many people care for those who have had difficulties. There are many who are concerned. When there are difficult situations, we have to move through. There may be difficult times for Tracy Morgan ahead. Communication is important. Having the ability to convey thoughts is very cool. So much of what Tracy Morgan did as a comic was dependent on his communication abilities. Much is unknown. I wish for the best.

Tracy Morgan's recovery

We have to think positive about Tracy Morgan's recovery. I hope that he will be able to make a full recovery. Hopefully, there won't be a long recovery. If there is alot of brain injury involved, it could be more difficult. Traumatic Brain Injury is a difficult road to go down, but with a lot of support, it is possible to recover. It is way too early to think about possible involvement traumatic amnesia. There could be some difficulties with a kidney transplant a few years ago, and now his need to recover from this. Again, hopefully, there are not too many complications involved. I hope he will do well.

Eating Good Food

We’ve previously been fascinated by Le Cellier in Canada as a dining venue at EPCOT. I guess part of the fascination lies behind the reputation that it is difficult to get in to. We were able to make reservations for 12:45 on a Saturday, when we were looking around on a Friday night. Part of the mystique behind the reservations system I suppose is just the management of expectations. According to the reviews online of the steakhouse, the cheddar cheese soup was very good, and yes, we each had a bowl of the cheddar cheese soup. The bowls were shaped a bit weird, wide at the bottom, and not too deep, versus the tapering usually seen with bowls. The pretzel bread was also good. Since our stomachs are smaller, due to surgeries, I knew that we probably couldn’t have two entrees, so we got one braised short rib, and split it between us. The vegetables were weird, almost undercooked, so they could retain the “cute little spherical shapes that they were cut up into”.

After that, we walked around world showcase, then to the monorail system to Magic Kingdom (thank goodness for park hopping) and I got a cookie ice cream sandwich. My wife had some of the cookie ice cream sandwich as well. During the time at Magic Kingdom, there was also the 3pm Mickey Parade down main street, USA, which we kind of saw some of the excitement around it.

We also made plans to go to the Mardi Gras, Lenyrd Skynrd concert at Universal. Seeing the Mardi Gras parade at Universal was really cool. The number of participants who were walking on stilts was impressive. While at Universal, before the Parade, we saw the Terminator ride, and had 2 milk shakes from Mel’s Diner. We walked through the french quarter area and there were vendors, we also got some fried bread, passed off as beignets. I guess it was okay, but not like the beignets we had at New Orleans. Or not as I remember anyway.

The concert wasn’t what I was up for, and I don’t think my wife was either, but we left shortly after the beignets. Oh, previously, we did the Tom McCubbin lecture at the flower and Garden festival, and we got two cute little mini garden-like things. We saw maybe how to get around the area, and where the hotel that we will be staying at is. So, my pedometer says that yesterday, we walked 17,099 steps. I guess that’s a good amount. It made for a long day, doing multiple theme parks. It was a fun day though.

TBI Survivor Marty #15

A video about me and a box drum.  I like the process of making musical sounds.  I like the musical instruments.  I think the sounds are cool.