Hard Truths

[ipes2]

Who thinks we should let TBI survivors know about the nature of their injury and where they are living? I am assuming moderate to high brain injury?

[pinkvision]

Hi, what do you mean, explain further please.

[ipes2 in reply to pinkvision]

I will use me as an example so none gets offended. I have a moderate brain injury and patchy long term memory. I am kind of lucky as I know that TBI can be much worse. There are patches of my memory i.e. divorce that I do not actively seek to recall. So the question is should I try and get these painful memories back or move on to a new identity?

[Kate-Neuro in reply to ipes2]

Hi there,

that's a really interesting question with plenty of ethical questions around whether we should remember, dwell or talk about our painful episodic memories or if they're best left forgotten.

I think everyone has to decide personally if they want to try and get those difficult past memories back to talk about them. Depending on the extent of TBI those memories may still be there, only inaccessible, disconnected, or they may have been lost permanently following TBI.

If you really want to recall something you could try psychotherapy and talking therapies, they have been reported to help sometimes, hypnosis has had some success and for others spontaneous recovery of lost memories (at times in a similar situation to the one around the time of the TBI 'situation-specific'.

Hope this helps,

Kate

[ipes2 in reply to Kate-Neuro]

Definitely episodic. The is a US youtube (Utah Neuro Rehab) that makes a very interesting argument. Summarised they say that TBI survivors are frozen in time (memory wise) and the rest of the world continue living their lives. They point out that a form friend may have moved on to a new phase of life - like having a baby. So they are different to the person you knew before your TBI. I guess they are saying life changes even if we don't

[pinkvision in reply to ipes2]

Ah, there is a distinction between suppressed memories and lost memories, psychological trauma suppresses memories while brain injuries irreparably lose them through damage. You may have to consider which type of memory loss you are experiencing.

[Leaf100]

In terms of memory I think it depends.

In the early days I had completely forgotten an ex husband and it had been a messy divorce - lots of lies and manipulation on the other side.

I did not mind not remembering.

The memories came back in bits and pieces, along with other things.

I also find things I remember from before are more like something I read in a book, that is, no emotional attachment.

In general I find living in the moment had really helped a lot.

I was told it's easier to be around people who aren't constantly looking for the old you.

I feel it depnds on the person and the circumstances - what if you don't remember your spouse, for instance?

Though failing some pressing reason, I'd say don't fight the healing process, work with it. Plus the stuff that gad you able function in life needs to be first.

One really needs to be practical, and in many cases it is necessary , as here usnt a lot of help out there.

Leaf

[pinkvision in reply to Leaf100]

This thread is getting interesting by drawing distinctions with memory loss and other potential reasons for memory detachment. I'm reasoning that if a memory is 'lost' and then returns, the memory is not lost in the first place because it came back. We need to remember that the major brain damage in TBI is diffuse axon injury also called traumatic axon injury. This is the white matter in the brain, striated tissues linking functional regions in the cortex the grey matter. Axons are information highways and if they are damaged the information flow is disrupted. Damaged white matter means that information cannot flow from one region to another or is greatly reduced. Memory is stored in the hippocampus and if the axons between this and another functional region are damaged or severed the memories cannot be accessed. The person may experience blank moments where the memory should be, the person 'knows' the memory relating to the function is not there and may think the memory is lost. This is called aphasia.

This results in living in the moment because the automatic responses that would normally be present, linking the moment to past experience and potential future possibilities, relies on memory.

[Kate-Neuro in reply to pinkvision]

That's a good description there. True, memories may be suppressed following traumatic events and a mild TBI often precedes this type of functional amnesia as well.

There can be damage to specific brain structures involved in memory, like the medial temporal lobes and as you say diffuse axonal injury. There can also be a lot of neurochemistry that becomes unbalanced after injury and all of these problems can destabilise memory retrieval and other cognitive functions.

The hippocampus appears to act as a central hub or index system that points the way to bringing together the different aspects of memory across the cortex and assembling them for entry to our conscious awareness where we can talk about our experiences. It's fascinating how it all works and comes together, of course, sadly it doesn't sometimes.

[Leaf100 in reply to pinkvision]

Thanks PV.

Diffuse axonal shearing was indeed the diagnosis, general slosh like shaken baby, but with the very angry parts tending to the front left and back right.

My experience is memories appear to be stored together, so return more like flowers in a bunch . Memories relating to a certain emotional sensation, for example, coming back together, rather than coming back as a linear time based set of memories around a certain place, person, or thing. Which can be a bit odd when you can't put something or someone in a context.

I know I still have gaps. About 5 or 6 months pre injury I had my hot water tank replaced. I have zero memory about doing it, and still don't. If asked, I would have been sure the previous model was still there. The old one was white, the new one was blue. When I got around to looking, imagine my surprise to see a blue model . (I write the installation date on the unit in sharpie so I know when to replace it.) I also have a coffee mug and a Tupperware type container that 'mysteriously' appeared, so am left to assume I got them during the same period. (Friends had no info, either.)

I also had the wrong phone number - one I hadn't had for 20 years.

Of course, if there is no physical evidence of something remaining, it's pretty hard to know what you've forgotten. (Though my Mom has stumbled across a few things from further back in time.)

Some stuff appears to be truly gone.

Post accident I knew I had been married in the past, but I had no idea how long or who to. Not sure why they asked.

Sometimes if someone asked me something, I wouldn't know then but it would pop out maybe 2 months later. File is there, but no index , maybe.

The other thing was if someone moved something and then I tried to enter the room, I could no longer walk . My legs just no longer worked. I'd have to stand there and wait for it to pass. I had a poor relationship to space and knowing where I was in it - I tended to have a forearm on a wall, and really relied on a walker. I also fell a lot. One of my friends said I'd become a startle goat .

I still get intermittent tremors and paralysis.

My poor brain still was trying its darnedest for me, though .

Brains really are quite amazing.

Oh, I am aware that I see the ability to dissaccossiate as a skill - it just happened at first, then I realized I could chose it, and I often do . Coming from a place of simple observation really works sometimes.

Of course this sometimes has consequences- many professionals seem to assume bi people are all very emotional. And I am not. I think I have yet to rebuild those pathways.

Leaf

[ipes2 in reply to Leaf100]

Hi Leaf,

Your journey to this point is amazing. My key takeaways are (1) get at least one person to be your post TBI buddy (2) regular brain exercise helps me to link to memories (3) medical professionals don't understand a great deal about the brain & keep changing their minds (DSM) - check everything first. (4) Remember you are important and loved.

Ian

[Leaf100 in reply to ipes2]

Hi IanYou will find, I am afraid, most medical professionals are out of their depth. You might find some who are kind and will take you at your word and act as a team. That's gold. The big one to watch for is sensitivity to medication - you can get messed up pretty fast on that one. There are all sorts I do not tolerate, and insurance companies can almost insist you take things - even if they cause harm - because in their world view you aren't trying if you don't. They only listen to a doc saying 'not suitable'.

Now, some people do get a lot of help from medications. You need a doc who will accept your brain may no longer be wired in a way where the medication functions as expected.

Cause, guess what - it is really is no longer wired the way it was before.

If you think your doc mistakes your symptoms for a psychiatric or drug abuse issue, get the heck out of there and don't go back.

The phrase, if asked by next doc, is 'wasn't helpful' and leave it at that.

And yes, keep trying to find helpful professionals.

If I could wave a magic wand I'd change all that first.

If you have someone in your corner who loves you, you are super lucky.

It is not unusual for friends to not weather your changes well, and even for those close to you to not get it. So, over time, they disappear.

My Mom went through a period where she though I had a really shi**y personality , and then she really paid attention and realized it was the bi and I really was trying hard, and am actually a very kind person. She was egged on by a now ex friend who got convinced I had become a twit and was enrolling Mom in that. (Really it was because this friend had built up an idea in her mind of how she could help me - but couldn't accept she did not understand - so she'd get mad when reality didn't meet her expectation, leading her to conclude it must be me being uncooperative....because if I only did what she said blah blah. This is not uncommon.)

So someone hanging in there with you who will accept, and not judge or blame, is a rare jewel. It's hard on them.

I am sure I do look like a twit at times . Multitasking is not on, so if you try to talk to me when I am doing something it isn't going to work. Often me standing looking like I'm doing nothing is me processing - not a conversational opportunity. Normally people can do both. I am not able to. Hard for someone to adjust to these things, and we often are not aware enough to explain.

Expect to have to find your own therapies. Pick something to work on and look and see what your brain is trying to sort out . Do it in a spirit of cooperation rather than force- that helps a lot. You have to find coping strategies that work for you. You will only work that out by doing and it is a moving target. Yes, sometimes you need to work on something you need to do that your brain doesn't want to do. It still can make progress but it is sure harder won.

(I can't say anything about rehab services as didn't have access , though from what I've heard since I didn't miss much )

5. Be kind to your brain. Be kind to your body.

That is, tell yourself thanks for trying, I appreciate it, you can take a rest now, I see you are tired, ok let's take a break... etc.

Rather than , listen up you stupid brain stupid body and just do what I want ! When I want! I don't care how hard it is!

Maybe it sounds strange , but it helps a lot.

At least be someone to yourself you dont mind living with.

Don't have your poor brain or body crying in the corner wishing for kinder roomies.

Forgive yourself often for getting things wrong, losing things, not getting something done as fast as you prefer, not being able to do everything you could before, etc

I could go on but I won't.

[pinkvision in reply to Leaf100]

You are also talking about differential brain hemisphere functional dominance. It the knowing about something without the remembering, the paradoxes in life, feeling something and doing something. The hemispheres mirror each other but experience the world in a different way. The right hemisphere experiences the here and now, sensory qualities which affects mood with instant reactivity and is dynamically visual. The left hemisphere reacts to this information emotionally in terms of the past and the future, puts it into language, is cognitively linear and visually narrowly concentrative.

TBI's can shear axons between the hemispheres so sometimes it may seem like you are living in two worlds at the same time. Normal 'whole brain' functional psychology does not apply to TBI's. Use split brain, separate hemisphere functional psychology instead and you'll realize it all make total sense.

[Leaf100 in reply to pinkvision]

Thanks, PV.

The question I get asked I dislike the most is 'how do you feel'. No idea.

This helps explain that.

[Nafnaf87 in reply to pinkvision]

That's the best explanation I've seen of me in 20 odd years pinkvision - thank you 😊

I know what went on before I jumped out of me Jeep and had a fight with a tree but do not remember - it's just a big black hole.

I do not remember the accident or anything about the day - maybe I was lucky but actually I'm not really sure. I survived, the Jeep didn't 🤔

I am capable of analysing life and what’s going on in the moment but tomorrow today will have also disappeared into the black hole. I know (roughly) what has gone on in the past 20 odd years but unless prompted do not remember anything.

Do I suppress it all? Mostly no, I know somewhere the files are all there, just can't access them.

It's not all dodgy, I didn't end up epileptic e.g. so I am grateful for small things 🌞

[pinkvision in reply to Nafnaf87]

Aphasia and memory loss can also be a bonus, all the crap stored up from life is suddenly not there anymore allowing a new beginning, a rebirth, a new you.

[Nafnaf87 in reply to pinkvision]

It's a little hard when the new you is daily! All/most memory requires some kind of prompt - on occasion I have even ended up lost in the supermarket aisles and called somebody to find out what I was doing .... disconcerting

[Teazymaid]

I would do anything to remember my accident .. it would help me now and in the last 2 years .. to understand the new me …sue x

[ipes2 in reply to Teazymaid]

Most people do not remember their accident as the brain simply does not store the information. In my case I lost 2 days - totally blank. Never coming back.

The important thing is that you are not you. You are someone else is the same body, but with a different social identity. In many ways it is like moving away and having to meet a whole new community. It is not that your old social circle dislikes you - their lives carried on when ours stopped for a while. As a result we need to build new social connections for the new you. This is not failure, but simply an acceptance of a new life.

I am taking this changing identity thing so seriously that I flight out of the UK for 1+ years to teach computer science. Fly on the 22nd December 2022!

[Teazymaid in reply to ipes2]

oh I am in a new body for definite , I have no idea of anything for a week . Even one of the nurses I had know 40 years but I have no memory of anything . I know it will never be retrieved but still wish I had more information … this was horrible at the beginning but getting easier as time goes on ..

[sashaming1]

Depending on the severity of their brain injury there may be no benefit to them if they know and if they don't know it may prevent them from having excessive anxiety.

[pinkvision in reply to sashaming1]

You may want to try mindful movement to reestablish your sensory self which may help to neutralize the anxiety. Here's a link bangor.ac.uk/mindfulness/me...

Try it at least once a day for at least 8 weeks (it takes 8 weeks to hard wire a new neural network) to see if it makes a difference.

[Teazymaid in reply to sashaming1]

I think for some people remembering would not do them any good at all .. but for me it would help with a lot of unknowns ..

[skydivesurvivor]

never!!

[Shreds]

My neuro advised before I left hospital that I should not try and force memories and the brain has an auto cut off that blanks the accident, so that is one memory to avoid trying to force recalling.

Other things do return, but slowly, sometimes an event, a location, a sight, a taste or a smell makes the connection.

It may at first be hazy, but celebrate any such event. It is a “normality” returning.

Those who have not been through traumas will not understand, but sharing such info with those close to you who may have empathy, will non the less mean you are sharing positives and in future similar situations MAY be recognised by your senses but dont expect instant results.

Reconnecting is a long slow process.

Just stay positive👍