I created a group on Facebook Called TBI Survivors Successes. It now has more than 2100 members. There is a good bit of conversations going on about people who manage to live with the condition of Brain Injury. Some people are the caregivers of those who have brain injuries.
I think of the million dollar Murray story less primarily about homelessness than about brain injury. In my million dollar Murray consideration of things, I think that it is pretty easy to spend a million dollars on healthcare over a lifetime.
How many head injured (Brain Injured) individuals will likely end up with a million dollars spent on healthcare over their lifetime?
I want to do more with brain injured veterans treated by our Department of Veterans Affairs (86,000 for FY 16, 141,900 for FY 15 according to some numbers pulled).
Providing knowledge about the conditions and likely outcomes if certain choices are made might be beneficial. Alcoholism and Drug addiction are issues which complicate things, in addition to homelessness, but more can be done to inform people with brain injuries, and engage with them, get them excited about using technology.
Connect them to others so that they can see they are not alone in dealing with issues. Isolation is a big thing with brain injury survivors.
I appreciate that I have no idea about what a million dollars of healthcare looks like.
Predictors of Employment in Veterans w/ TBI: A VA TBI Model Systems Study. – PubMed – NCBI https://www.ncbi.nlm.nih.gov/pubmed/28060203@NakaseRisa @ACRMtweets
https://www.facebook.com/mybraininjuryrecoveryandadvocacy/ I am not sure if the page visited at Facebook requires one to sign up for a Facebook account or not. I think some people might not like to interact with Facebook, but might be on the web. I am okay with this being a very small niche group of people. Fortunately, many people are not impacted by the loss associated with brain injuries (including stroke).
The group I attended at a nearby university was very interesting. It was a small group, and I am a higher functioning individual of the group. It is important that others see that there are different levels of recovery and different levels of activity. There is a saying, “If you have seen one brain Injury, you have seen one brain injury.” Everyones journey is different, even though some obstacles are similar.
The ‘net collapses distances and enables conversations.
Two friends sitting on park benches separated by distance.
Sharing wisdom and acknowledgement of struggles past and current.
I think more can and should be done.
TBI Survivor Marty #5, I think, Oh well.
Yesterday was eventful, we went to OldTown, which is a little touristy row for selling T-shirts and they have rides. I liked one t-shirt in particular there, it says “Peace Love & Sunshine” then it also has “Florida” printed underneath. The screen print was done on some Tie Dye t-shirts. I like it. The phrase “Peace Love and Sunshine” is really a positive one. Initially, I had wanted to go spend some time at EPCOT after we had picked up my t-shit, but as things happened, we didn’t get to that. While at Old Town, we stopped in at Black Market Minerals again, and Fran got some bargains, I picked up a nice speed tambourine. We then went to Celebration, which is a nice suburb outside of Disney, which has a few hotels, and some houses and condos. It is a fun highly walkable area. If money were no object, that might be a nice place to have a second home. We looked at an open house while we were there, but in addition to being too expensive, the place was also too large. We had a Kilwins Ice Cream while at Celebration. Then we went to Downtown Disney where we hung out and listened to some live music. We also observed that some people were wearing Pajama Jeans out in public, which I guess is okay, but Fran says, “they really shouldn’t be wearing that.” Around 8:30 that night, I started to feel tired. It would have been different had we been staying at a hotel nearby, but I knew we had another hour and a half ride back to Tampa, so I started us on the way home. Fran commented on the moon. I agreed, it was very pretty.
When disabled people recognize that they are tired, and need to go, it’s generally a good idea not to keep going.
In other news, I’ve received some feedback referring to this series as Marty’s Ministry. It is kind of interesting to think about it that way. It is mostly just my wanting to spread the message that there is life following an accident. If others can observe some of these messages and get something out of them, then it is so much better. I guess there are a number of medical conditions which could be somewhat similar to Traumatic Brain Injury.
The opposite of peace and love is war and hate. To my way of thinking, hate is such a strong emotion, it is probably physically draining and unproductive to hate.
TBI Survivor Marty #6
Heh, the irony about what I am about to say. It’s delicious. I’ve read information that sleep is very important. I recognize how in myself, that I can’t do a very good job of pushing myself to go without sleep. Some may think, where’s the problem with that? If you get enough sleep, then it should be good. Yes, but time spent sleeping is time where one is not as productive as other times. I remember being young, when I could do a moderate job staying up late , but how much of memories is really real? Who knows? I guess the body tends to wake up near an approximate time on most days, if I let it. I like that I married a woman who is supportive of me, and she understands. I guess the wakey up thing is called a circadian rhythm which is maybe a bit helpful to realize that it might be a normal thing. Maybe it’s not, but I guess it is okay. I accept it for it is what it is.
Yesterday, we went to Disney Springs. We saw Cupcake place by the name of Sprinkles there. The cupcakes were pretty good. They also had Ice Cream, so I asked which dairy they got their Ice Cream from. Surprisingly, they said that the store in Tampa makes their own Ice Cream, and ships it to Orlando. It is interesting. So, today, you know we just had to do some looking around for Sprinkles in Tampa. Well, as it would happen to be, it was located at Hyde Park Village near Swann and South Dakota. We hadn’t been to Hyde Park Village in quite some time. I guess the roads are in the process of being improved, so there is some construction on the roads currently. The Sprinkles in Tampa was pretty good. The Ice Cream was pretty good. We also found that the kitchen store at Hyde Park Village had a non stick quarter sheet baking pan which fit very nicely in our Breville counter top oven.
I’ve tried reaching out to some other groups.
Generally, my idea is to improve the quality of life among long term survivors with TBI (traumatic brain injury) through increased use of social media and internet resources. Specifically, I am thinking of some ipads for TBI survivors to use when being treated as inpatients/continuing treatment as outpatients. Currently I have a group of about 682 folks through facebook who I engage with using the closed group “TBI Survivor’s Successes.” Other technologies could be used, but facebook has a bit of ubiquity. During the day, I work at the Tampa VA Hospital, doing computers. There are several TBI patients at Tampa VA Hospital. Nationally, I know the VA center of innovation is trying to advance the agenda by having some talent competitions, and they brought ideas to DC for a 2 day conference in the second half of April. The VA center of innovation also had a guy with the VA office of strategic partnerships, and there were several partners represented. Apple was not yet represented among the strategic partnerships, but it could be, as also I would think that this could be an opportunity for JNJ as well. The query started with my asking someone at your twitter account if they were aware of any professional organizations who might be interested in helping to support this effort, so again, I would welcome the opportunity to collaborate with others as well. If you would like to suggest other contacts, I would welcome other suggestions as well.
I have started a few efforts to improve awareness about successful recoveries with TBI. I occasionally come across new studies which point to links between TBI and progressive decline of neurologic functioning. Who knows how certain it is, but one lives with risks, and plays the game. I’ve also started a group with the larger organization, on the internal website. I think it is important for others to realize that they are not alone. In my experience, TBI can be a very isolating condition. Having a social support group is important, even if it is mostly just internet based.