TBI Education

As we prep for home-care and moving, I thought it might be helpful to share some things I've learned about TBI and how we, as Brian's community, can continue to help him recover. I know that once we are home, there will be more opportunity to visit / help. And I totally understand that it's not easy for everyone to know what they can do to help, or how to help Brian specifically.

I've acquired a lot of information and think it is incredibly helpful to share, and I want to encourage everyone to continue to participate in Brian's recovery because there's a lot of things we can do to help Brian's brain, beyond nursing care & therapy.

For one - the brain & consciousness is still a true mystery, and it's only as recent as 2007 that doctors started to realize and accept that it can recover & heal. The question is why & how - and they still don't truly understand why certain people emerge and some don't. I find a lot of comfort in the fact that they are actively doing research though, and even new findings like cold lasers have proven to improve cognitive and mobility functions for both TBI and spinal cord patients. That's why I am excited to have found the Vielight and the ability to administer light treatments to Brian daily.

Anyway, below I am going to share a link to a TED talk by Antonio Damasio, a neuroscientist and expert on the origin of consciousness. He also has written some books that explain his research, but he has dedicated his life work to studying the mystery of the brain. His findings are VERY intriguing to me, and to be honest, got me hyped about the possibilities for Brian's future recovery (as you can gather, I've been in not the greatest headspace, but I'm actively trying to get back to the 'one day at a time' mentality and regain my optimism).  

There is also an organization called "Curing Coma" that advocates for people with disordered consciousness and believes/teaches that comas are treatable conditions, because for the longest time, it's been medically impressed as a negative condition with only negative outcomes. But now we know there are miraculous recoveries and they're actively funding further research.

Antonio Damasio TED Talk:

https://www.ted.com/talks/antonio_damasio_the_quest_to_understand_consciousness?language=en

Curing Coma Campaign

https://www.curingcoma.org/home

I could go on all day about this stuff, but the main thing I want to get across is: there is still HOPE. And there is a lot of likelihood that Brian is regaining his conscious mind, but just cannot communicate it yet. After listening to the TED talk, I realized we need to help Brian regain his sense of self, every chance we get - so that as he slowly regains functions, he also regains the perception of himself at the same time. This is now why I believe people report the most progress in a home-care setting, because the patient regains a 'normal' day-to-day routine in a house, not a hospital room. 

So what does this mean? It means if you come to visit Brian, and you feel weird or unsure of how to interact with him (which is OK), there ARE things you can do that will 'light up' his brain, even if he can't show us. For example, we could ask him to imagine playing golf - and describe it in detail to him. And if he hears us, his brain might imagine that activity before he is able to actually DO the task- because the motor cortex that controls movements isn't up-to-speed yet. Because medical professionals can't measure that type of brain activity and function at bedside, it's difficult to assess his true level of consciousness. He may have consciousness in ways we can't see. 

To make it easy, I made a list of things that we can continue to try with Brian in the days/weeks/months ahead, so that if you want to come for a visit, you'll have something to choose from (and now we can all feel good that we are actively doing something to help him out and at the very least, make him feel good or entertained):

• Read him a book 
• Tell him the timeline of his life (I'm making a photo book with specifics so that people can come read this to him all the time).
• Share a very specific memory, with lots of details in it (location, people, smells, sounds, colors, etc)
• Tell him work stories / accomplishments
• Play him music he likes
• Watch videos on a tablet so he can see them up close - things he likes or 'virtual reality.' Ex: sports, or videos of driving a car from the POV of the driver since he drives every day for a living
• FaceTime Brian into events/gatherings so he can watch, listen, and feel included. i.e. Poker night w/ the guys, birthdays, workout session, a night at the bowling alley, etc. 
• Scroll through his social media with him
• Share a meal together (if he's getting a tube feed, set the table and eat with him so he feels included in meal times)
• Fold clothes or do legos (or any functional task that we can help him do by moving his hands/arms for him)
• Tell him jokes
• Ask him to imagine doing a hobby or activity that he loves
• Administer light therapy or aromattherapy 

Over the holidays, I plan to put together a bunch of materials & resources so that visitors can feel equipped to help Brian more. Because it will be so helpful for him to hear more than just my voice, and as much as I need the help with mundane tasks while we transition, eventually I'm sure I will be WANTING to have some free time to do things like cook and do laundry. The help I will crave in the future will be with Brian directly, vs. helping me. I want to set everyone up for success there, because I completely understand that navigating his TBI is unknown territory. 

I'll end this with a story that encouraged me, alongside all these recent learnings. An old friend messaged me Monday night about a co-worker of theirs, that was in a terrible accident in 2019, endured several brain surgeries, and essentially stopped making progress in the hospital. His family brought him home, where he eventually started to recover, emerge, and this past month he returned to work! It took almost 2 years, but it definitely gut checked me that time is still on our side.

I hope everyone that reads this, that might have been losing steam (like me), feels inspired & encouraged about the possibilities that still lie ahead for Brian. I believe he's still in there and I believe his brain is doing more than he is able to present. Let's continue to pray together for his return to consciousness, full sense of self, and regained independence! His brain is still able. God is still able!

🎶💙

https://open.spotify.com/track/5C5hTkMxeLuUGtraIHi8Jn?si=9p72Gs3LSi6nWNWehBssQQ&utm_source=copy-link