TBI Survivor Marty #5

Published on Sep 2, 2012

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

Published on Sep 3, 2012

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.

Thank you.

Sprinkles Cupcakes

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.

Trying to reach out

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.

 

Since the conference, VA Brain Trust

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.

The conference in DC was great!

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.

Devices for accessing Facebook Groups.

Conference Statements Mild TBI and PTSD – April 20, 2016

Marty Salo – martin.salo@va.gov – Tampa, FL

Challenges:

  1.   Life with a traumatic brain injury presents challenges.

 

  1.  Friends fade away.

 

  1.  Often there are driving difficulties.

 

  1.  Sometimes traumatic amnesia, aphasia present, and language needs to be re-aquired.

 

  1.  Broken bones have general guidelines for time when casting is required to heal the bones.

 

  1.  It is said that TBI’s heal differently, 1/3rd heal well, 1/3rd don’t heal well, and 1/3rd fall in between.
  2.  TBI is an injury with damages to multiple systems.
  3. Seizures are scary to those who are observing, frustrating to those who live it.
  4.  With effort, recovery is possible.
  5.  Technology toys can assist with the expression of language and help with the game of life.

SOLUTIONS:

  1.  Technology toys can be helpful in a variety of ways.

 

  1.  For simplicity sake, assume iPads were settled on as platform of choice.

 

  1.  Apps can be helpful.

 

  1.  Geolocation can interface with loaded data for hospitals, churches, mental health facilities.

 

  1.  Primary reason for wanting to go with iPads is FaceTime.

 

  1.  Having the ability to reach out and video chat with friends is powerful.

 

  1.  There are many possibilities for maps data and location services.

 

  1.  Support for iPads should be less difficult to provide than supporting a variety of PC platforms.

 

  1.  Mostly, the purpose of the iPads is to reduce isolation.

 

  1.  Enabling messaging, and conversations.

 

  1.  Each Survivor is probably at a different place in recovery.

 

  1.  Observing, rejoicing in the victories of others is inspiring.

 

  1.  Having iPads for TBI vets would also enable greater amounts of telemedicine, remote consults.

 

  1.  Crisis intervention could be assisted.

 

  1.  Isolation would be reduced as contacts are made with a community of survivors.

 

  1.  Finding others who have similar experiences is powerful.

 

  1.  Belonging provides others with hope.

 

  1.  Facebook groups is a wonderful way of finding and connecting with others.

 

  1.   We can view happiness as a general measure of quality of life.  

 

  1.  We can measure happiness on a self rating schedule.

 

  1.  That will give us clues and directions as to improvements in life quality.

 

  1.  A recent example:  I started a Facebook closed group dealing with successful experiences post TBI.  

 

  1.  Currently, there are 590 subscribers.

 

  1.  Successful outcomes are individually determined by each Facebook participant.

 

  1.  This gives reinforcement to others and encourages successful behaviors.

 

  1.  Hope provides better outcomes than those not so encouraged.

 

  1.  Outcomes are what we should be after.

 

  1.  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.

TBIs and impulsivity

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.

In our travels

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.

Hope is important

http://news.shepherd.org/en-us/new-video-explains-why-shepherd-center-is-a-place-where-hope-is-restored/http://news.shepherd.org/en-us/new-video-explains-why-shepherd-center-is-a-place-where-hope-is-restored/

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.