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.
I had a great time attending the conference in Washington DC. The flights up and back were uneventful. Solo travel can always be concerning. Not driving is a small limitation for many things. But life can be okay. The hotel in DC was expensive, but I suppose that many hotels are expensive. Being invited to present at the MTBI conference was an honor. Listening to the presentations by some experts in the field was neat.
Perhaps I was a bit too much of an Apple enthusiast fanboy, gushing about how the iPad could be helpful as an all-in-one Tablet. Of course, maybe the fact that it was at the IBM building influenced some resistance to the idea. Perhaps resistance is an improper word. Non-committal.
There was a question if there was anything special about the iPad, if other devices could be used. Yes other devices can be used, but in my experience, some limitations probably exist if there are other devices issued. Providing support to a homogenous group would be easier.
I’d really like for there to be more use of video teleconferencing through facetime, but there are issues with alienating google android users. Trying to keep things as simple as possible, it would be nice if there could be more video services trying to help spread awareness that TBI survivors are not alone in their struggles.
Conference Statements Mild TBI and PTSD – April 20, 2016
Marty Salo – email@example.com – Tampa, FL
- Life with a traumatic brain injury presents challenges.
- Friends fade away.
- Often there are driving difficulties.
- Sometimes traumatic amnesia, aphasia present, and language needs to be re-aquired.
- Broken bones have general guidelines for time when casting is required to heal the bones.
- It is said that TBI’s heal differently, 1/3rd heal well, 1/3rd don’t heal well, and 1/3rd fall in between.
- TBI is an injury with damages to multiple systems.
- Seizures are scary to those who are observing, frustrating to those who live it.
- With effort, recovery is possible.
- Technology toys can assist with the expression of language and help with the game of life.
- Technology toys can be helpful in a variety of ways.
- For simplicity sake, assume iPads were settled on as platform of choice.
- Apps can be helpful.
- Geolocation can interface with loaded data for hospitals, churches, mental health facilities.
- Primary reason for wanting to go with iPads is FaceTime.
- Having the ability to reach out and video chat with friends is powerful.
- There are many possibilities for maps data and location services.
- Support for iPads should be less difficult to provide than supporting a variety of PC platforms.
- Mostly, the purpose of the iPads is to reduce isolation.
- Enabling messaging, and conversations.
- Each Survivor is probably at a different place in recovery.
- Observing, rejoicing in the victories of others is inspiring.
- Having iPads for TBI vets would also enable greater amounts of telemedicine, remote consults.
- Crisis intervention could be assisted.
- Isolation would be reduced as contacts are made with a community of survivors.
- Finding others who have similar experiences is powerful.
- Belonging provides others with hope.
- Facebook groups is a wonderful way of finding and connecting with others.
- We can view happiness as a general measure of quality of life.
- We can measure happiness on a self rating schedule.
- That will give us clues and directions as to improvements in life quality.
- A recent example: I started a Facebook closed group dealing with successful experiences post TBI.
- Currently, there are 590 subscribers.
- Successful outcomes are individually determined by each Facebook participant.
- This gives reinforcement to others and encourages successful behaviors.
- Hope provides better outcomes than those not so encouraged.
- Outcomes are what we should be after.
- Finally, I would propose we move to more interaction by using ipads and social media to improve TBI quality of life.
*** There are handouts available for those with further interest.
A coworker commented that boy when you get something in your head, you don’t goof around. I acknowledged, yes, TBIs (Traumatic Brain Injured individuals) have a bit of difficulty with impulsivity. This relates to the new car we bought last night. I was only asking the coworkers yesterday about what cars they’ve been driving, how their satisfaction was. The car process has been going on for a bit longer than that. I liked the Passat TDI’s range on a single tank of diesel. But electrical components started going weird. Maybe fixing the electrical components would have been cheaper, but who knows? Arguably, the VW repair shops could get busy for awhile.
Car salesmen sell cars. That’s what they do. I get that they are in this to make a buck, like the rest of us. The TDI models of VW will likely be impacted for awhile. Even though the particular model was not on the moratorium list, a broad brush will likely be used to paint.
I like the car, and Fran likes the car. We got a new Honda Accord EXL. It is a goldish color. We had not seen that many on the road before, but maybe that will change now that we are driving around. Probably won’t, but one does not know.
We’ve passed by a few colleges. One place we thought was interesting, but didn’t have time to get out and explore was Johnson & Wales University in Charlotte, NC. We were looking for a place to stay the night, and even though the Ritz Carlton in Downtown Charlotte was there, we wouldn’t have fit in. I guess. I wonder about colleges, and imparting knowledge to to the students. The student loan systems and debt taken on can be considerable. I wonder if one consolidates student debt, pays it off, can one then declare bankruptcy to get out from under that consolidated debt burden? Who knows? I am thankful that I did not have to take on much debt when I attended FSU. I probably could have, but I guess I chose not to live far beyond the means of support.
I’ve heard from some co-workers that once the credit rating gets to be so bad, that getting refinancing becomes improbable. I wouldn’t know from experience.
I suppose that people can make foolish choices when they are away at from home and making decisions about how to allocate money.
For the trip in Charlotte, we stayed at a hotel near the airport, I guess, it was near the road system, and it was comfortable. We only stayed a night, but it was good. I came to realize that while a pint of ice cream at the hotel might be twice as expensive as a pint at a grocery store, the hotel has location and convenience on its side. I guess parking in downtown Charlotte could be tricky to out of towners. Som time, I might want to walk around some hotel lobbies. Universities try to enforce parking regulations as a way to help generate income, and whatever, I guess, probably similar with other municipalites and associated organizations.
We did the valet parking thing while in San Antonio (rental car), at the hotel on the river walk. The city was hot in San Antonio, so we didn’t do much, but we did walk briefly around the area. We ate at the hotel. It was pretty good. The breakfast was pretty good as well. Again, a pint of Hagen Daas was more expensive, but oh well.
I’ve been a strong advocate for the idea that hope is an important motivator for improvement. Having awareness that others succeed is important. I have wanted to make use of more technology (ostensibly ipads to leverage the FaceTime app–though also iphones as well) to use the real time video capabilities for survivors to have conversations with each other. It is a cool project.
This is a pre-production piece, but I thought that it is good enough to share here.—
On April 7th, 1982, Marleen Salo was at home cooking dinner with her husband, Al, when they glanced out the window and saw a helicopter flying low near their Ocean View neighborhood in Norfolk. Moments later, the call they received would change their lives and the life of their son, Marty, forever. That helicopter was the Sentara Nightingale Air Ambulance and Marty was the passenger.
Marty was a brilliant kid. At ten years old, his IQ was 130, he loved reading, and he was becoming interested in computers. In fact, he was riding his bike home from the library when the accident happened. Marty was struck by a vehicle on his bike and suffered a traumatic brain injury (TBI). The driver had been blinded by the sun for a split second when the accident occurred. A ground ambulance was called but could not reach the site due to a passing train. Luckily, the Nightingale (which had begun operations only two months before) was ready to go. Marty was airlifted to the trauma center at Sentara Norfolk General Hospital where doctors rushed to save his life.
Marty’s life hung in the balance as he remained in a coma for seven weeks. Neurologists tested his brain which showed minimal response. Never giving up, Marty’s Nightingale pilot, Dick, sat with him regularly to read books aloud. With no apparent improvement, Marleen and Al faced the terrible reality that Marty might not regain consciousness and agonized over whether to take him off of life-support. One day, during a routine test, Marty showed a miraculous breakthrough as he reached up and touched his nose.
Coming home in a partial coma, Marty’s prognosis was still uncertain. Marleen remembers, “It was not until he pointed at something and said the word ‘there,’ that I truly felt there was hope.” Starting from ground zero, Marty had to learn to crawl, walk, and talk again. He went through serious bouts of depression and anxiety because of his inability to connect with other children. Against all odds and thanks to some exceptional teachers and mentors, Marty graduated high school and then earned his bachelor’s and master’s degrees at Florida State University. He now works for the Florida Veterans Administration Hospital library.
In spite of all his achievements, Marty still struggled socially. He particularly had difficulty meeting and connecting with women. Marty spoke with long pauses between words and his motor skills never fully recovered making it difficult for him to drive. Always determined, Marty designed a calling card that he gave out to the ladies he liked. That’s how he met his wife and best friend, Fran. To make friends, Marty used internet chat rooms and message boards where he wouldn’t be judged for his disabilities. He still remembers his first Apple IIc that he used to start communicating with people back in the late 80’s. To this day, Marty is working on ways to use iPads to help TBI survivors communicate with each other and he even hosts a TBI support group on Facebook.
Marty has triumphed over severe adversity with the assistance of others. His wife, family, doctors, nurses, teachers, and the Nightingale crew provided the help Marty needed to live his life fully. Donating to the Nightingale means that you too have given a hand up to Marty Salo and over 18,000 other patients over the past 30 years. From the bottom of our hearts, we thank you for your contributions supporting this critical emergency service. For more information about the Nightingale Air Ambulance and to make a gift in support of the program, log onto http://www.sentara.com/foundation or contact us at 757-455-7976.
A play, One Slight Hitch, by Lewis Black, at American Stage. I think we’ve seen several plays centering on marriage. This particular play was acted quite well with a younger sister, and then two other sisters of similar age, one of whom was settling down with a great guy, before the ex boyfriend shows up. As it would turn out, the ex boyfriend was not to leave with woman, nor would the woman merry the new boyfriend. The father renewed vows with the mother, since they had spent so much money on the shrimp boat bowls and had guests arriving. It appeared that much alcohol was consumed in the one afternoon that the wedding would take place. Mostly by the middle sister who seemed to be a nurse who worked at a hospital. I liked the way that the American Stage production took advantage of the sound systems, and used the music of the 1980’s to have the story enhanced.
I just had a French Onion Soup from Panera Bread. It was surprisingly good. I had checked Panera several times before asking if they had French Onion Soup, and was told that no they did not have that soup, so when I checked the website and menu of Panera, I was pleased to see that they had started having French Onion Soup on the menu. Still, I needed to make sure that the local Panera in fact had that soup, so I called the number listed, and it is a good thing that they do in fact carry the soup. This places French Onion Soup much closer to the house. I am very much pleased. I picked up the to go order, while my wife was waiting in the car for me. I also got two carrot cake muffins. We’ll see. I am very pleased that my neighborhood Panera Bread place is now offering French Onion Soup, in addition to the sandwiches, and other baked goods. Previously the trip to find French Onion Soup would take me across town, to a couple of different restaurants. There was a restaurant in a nearby Embassy Suites, but then French Onion Soup slipped off the menu at that place, and I was back to crossing town for French Onion Soup.