Follow these links for more writing (and thinking) about concussion vs. traumatic brain injury, including the reasons why I believe concussion and brain injury are two separate parts of an ongoing process. I also believe we should stop calling the whole process “concussion” and refer to it as Concussive Brain Injury, or CBI.
I’ve been reading up on University at Buffalo’s work with concussion rehabilitation, using regulated exercise to deal with post-concussive syndrome (or post-concussion syndrome).
I have to say, it’s probably the most exciting news I’ve come across in a while. With all the talk about the NFL’s new post-concussion guidelines (which may or may not make a difference), and the increasing awareness about head injuries, expecially mild traumatic brain injuries (MTBI), it gets a little depressing, thinking about all the people who are getting hit in the head and suffering for years as a result.
A lot of folks are talking about it being an epidemic, that concussions are no joking matter, and lots of people are getting on the helmet bandwagon (especially since Natasha Richardson died from a brain injury while skiing). Prevention is great. But concussion is all but unavoidable in sports — especially student athletics. It happens. All the time. Yet nobody seems to have come up with a reliable way of addressing it when it does happen. Aside from bed rest and taking it easy, suggests for howto deal with concussions/brain injury are few and far between.
We know concussions happen. We know head injuries are common. We know they can have serious long-term consequences. You can try to prevent them, but you can’t be successful 100% of the time. And if you do have a head injury, you have to be sidelined from your life/sport, with no guarantee that the “treatment” will actually work.
I was starting to get seriously depressed.
Then, suddenly, I was looking around the other day and I found that the University at Buffalo has been working with regulated exercise to treat — even heal — the after-effects of concussion. Post-concussive syndrome is, according to the definitions of Willer and Leddy (at UB), “persistent symptoms of concussion past the period when the individual should have recovered (3 weeks)”. According to them, post-concussive syndrome “qualifies as mTBI.”
This is interesting. I have heard a lot of people say that concussion is an mTBI, and the two are interchangeable. I am not a doctor, and I don’t have medical training, so I can’t throw my hat in the ring on that debate. But it is interesting to me, that people distinguish between the two.
At the UB web page on concussion research, there are some interesting papers, and they do talk about the difference between concussion and mild TBI.
Here’s what they have to say in the paper Retest Reliability in Adolescents of a Computerized Neuropsychological Battery used to Assess Recovery from Concussion (bold is mine)
A recent review … of concussion and post concussion syndrome provided a model for distinguishing concussion from mild traumatic brain injury (mTBI) and post concussion syndrome (PCS). The model uses the most commonly accepted definition of mTBI and the one proposed by the American Congress of Rehabilitation Medicine and the Centers for Disease Control: loss of consciousness for no more than 30 minutes or amnesia as a result of a mechanical force to the head, and a Glasgow Coma Score (GCS) of 13 to 15 …. The model also uses the most commonly accepted definition of concussion as established by the American Academy of Neurology (AAN): a trauma induced alteration of mental status that may or may not involve loss of consciousness …. Although not explicitly stated in the AAN definition, concussion is generally viewed as a transient state from which the individual will recover fully in a relatively short period of time …. In contrast, mTBI is viewed as a permanent alteration of brain function even though the individual with mTBI may appear asymptomatic. Post concussion syndrome was defined in the Willer and Leddy … model as persistent symptoms of concussion past the period when the individual should have recovered (3 weeks) and therefore qualifies as mTBI. Neuropsychological testing is often used to describe the impairment associated with mTBI and PCS and have done so with relative success ….
So, basically,
- mTBI = a loss of consciousness for no more than 30 minutes or amnesia as a result of a mechanical force to the head, and a Glasgow Coma Score (GCS) of 13 to 15
- Concussion = a trauma induced alteration of mental status that may or may not involve loss of consciousness; it’s a transient state from which the individual will recover fully in a relatively short period of time
- Post concussion syndrome (PCS) = persistent symptoms of concussion past the period when the individual should have recovered (3 weeks)
- PCS, due to its enduring nature, qualifies as mTBI
(Note: I think someone needs to fill in the gap about how PCS satisfies the criteria for mTBI, if they require that there be some loss of consciousness or amnesia involved. How lasting effects qualifies based on these criteria puzzles me. But for the purposes of this discussion, I’ll let this slide.)
I find this really compelling information, and it helps me make more sense of the whole “concussion thing”. I know I’ve sustained a bunch of concussions in the course of my life, and I also know that I have been diagnosed with “Late effect of intracranial injury.” But I could never really distinguish between the mTBI vs. concussion. I actually thought — and had been told — that they’re the same thing.
But that never made much sense to me, because when I look around at me, and I read that “An estimated ten percent of all athletes participating in contact sports suffer a concussion each season” And that’s just athletes. Plenty of people fall down, too, or are in car accidents. I’m not entirely sure what to make of it. Apparently, hundreds of thousands of people sustain concussions each year, yet the general population doesn’t appear to be completely crippled by TBI (though some people I know would debate that 😉 ) How is it possible, that so many people are sustaining concussions, especially in their youth and/or in sports, yet we’re not all running around impaired?
Making the distinction between a concussion that is transient, and a concussion that turns into an mTBI makes all the sense in the world to me. It makes it possible distinguish between someone who’s experiencing short-term issues, and someone who needs to deal with a broader-spectrum and deeper set of challenges. And in doing so, it de-stigmatizes concussion (at least in my mind), by steering clear of the “concussion = brain injury = brain damage” concept, which could be quite debilitating to a youth who has hit their head while playing a sport they love.
There are tons of potential ramifications and implications from being able to state that concussion is not necessarily an enduring brain injury. I may write more about this later, but it requires more thought.
The other very hopeful piece of this is that, by saying concussion is not always followed by brain injury, you’re opening a window to addressing concussions promptly so they do not turn into mild traumatic brain injuries. This, to me, is key. It not only makes sense of the two different kinds of injuries, but it also establishes that it may in fact be possible to treat the concussion to prevent it from becoming a more serious, long-term injury — the “gift” that keeps on giving. And by understanding concussion and brain injury this way, you also up the ante and really infuse the topic of prompt treatment with urgency. If acting promptly to address concussion makes it possible to avoid a lasting brain injury, then it’s in everyone’s best interest to become familiar with and properly trained in the recognition and treatment of concussion.
In this case, if mTBI is only present if concussion symptoms persist, and there’s no guarantee that concussion will result in a lasting brain injury, then prompt recognition and action may save the day.
Now, I’m still noodling over the idea that subconcussive impacts can seriously affect the brain over the long term, which Malcom Gladwell talked about in his article “Offensive Play“. But I am still hopeful. Because while subconcussive impacts may affect the brain, it could be that the damage takes place when no action is taken to address the injuries when they happen. Again, I’m not a doctor or a qualified medical professional, but it seems to me that if actively treating concussion helps with the really obvious issues — as the University at Buffalo has shown it does (albeit on a fairly limited scale) — then it might just help repair lesser damage done.
It might. I only wish I had the medical and scientific background and credentials to be able to speak as an expert on this. But apparently expertise is no guarantee of being able to help out, when it comes to TBI. The vast majority of experts haven’t had the wherewithall to state definitively what can actually be done about brain injuries, let alone recommend specific action that works, and there are thousands upon thousands, if not millions, of people suffering, day in and day out (along with their loved ones and co-workers) with the after-effects of concussion and mild traumatic brain injury.
So, somebody’s got to take the lead in finding a solution… Or at the very least think about finding one. The folks in Buffalo are up to wonderful work, and I can only hope that more folks have the gumption to take their lead and do something about this wretched hidden epidemic of ours.
Now, I’m off to address my own issues of the day.
Broken Brain - Brilliant Mind 
You are correct in what you say here – mTBI however DOES NOT require ANY loss of consciousness – note the soldiers who experience mTBI without even a blow to the head. Multiple blows to the head MAY be cumulative – especially if they occur within short periods of time – thus wrestlers and pro-sports players tend to have more mTBI symptoms. The bottom line is the injury is NOT defined by the cause but by the effect. The distinctions between mild, moderate and severe TBI has largely been based on GCS – BUT in fact some mTBI folks with minimal Loss Of Consciousness can be defined as moderate TBI – simply due to the areas or extent of injury.
To make matters worse physicians often use these word interchangeably – a neurologist may call something PCS when they see a person is having cognitive issues after an accident but is not ‘disabled’ (that is they can return home) – after 6 weeks however, when there is no spontaneous recovery then it becomes mTBI. Concussion is transient, mTBI is chronic and PCS is the grey zone in the middle when one isn’t sure. If you are experiencing PCS then you should NOT be engaged in activities where you might hit your head again or you are likely to NOT recover.
I suspect that even mTBI is an overgeneralized category. This gets complex too when you think of other factors – for example, prior history of drug use – both legal and illegal drugs. Chemo, SSRI’s, and many other drugs affect brain chemistry and may cause alterations in cognition. As do street drugs. FURTHERMORE – to make it even more difficult – emotional states can have effects – emotions absolutely interfere with cognition and if someone has had a lot of emotional abuse or experienced trauma or even lived for years in high stress this may alter their brain or even make them simply more susceptible to TBI. Some folks may be more prone to this – they may have a mild but highly functional baseline of ADD or a mild learning disability that was never diagnosed, or they may be very artsy or very detailed to an extreme and an injury will exacerbate these tendencies or obliterate them – in either case making them struggle. Others may be just susceptible – for example SSRI’s can make some folks very agitated even when severely depressed; this mimics a bipolar behavior and they get misdiagnosed because they have this underlying tendency for agitation when given SSRI’s (and since they don’t know exactly how the ssri’s work this is certainly feasible) – similarly there may be some folks who are simply more susceptible to cognitive loss – fragile neurons who knows. And of course there is self-awareness which impacts how the results are reported.
TBI is complex, there are probably lots of folks who have tbi’s who don’t realize it, it may account for a lot of prisoners, homelessness, abusive individuals etc. (some estimates say 80% of those populations). In the elderly no one even pays attention – after all the elderly are supposed to have cognition problems (or so people believe). And since depression and other issues affect cognition its harder to say – is the person depressed or is this a head injury.
These nuances matter in terms of treatments – but it probably won’t be in our life time that they come to any insight or understanding.
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What the above says however is that NO ONE knows what the correct response to TBI is – they do not even know if PCS, mTBI, a concussion, moderate TBI, severe TBI, acquired brain injury etc are the same problem. As I mentioned in a prior post – the models of care are designed around IN PATIENT TBI survivors – so the current treatments for mTBI are grounded in moderate and severe TBI models – and NOT necessarily in mTBI. The military has a better database for mTBI – but the pool of data is narrowed to an age and type. While most programs says that they do what is best and tailor for the individual they don’t stray far from the common path. And there is a common path – much of what you do is considered the correct approach, time schedules, consistency, self-acceptance, healthy life style, reflection on issues of deficits, keeping things simple, getting enough sleep. There is mixed feeling about drugs – with some folks thinking they are good for mood instability and others feeling that they are bad for cognition. Right after an injury the process is more step-wise – focusing on evaluating and strengthening skills, sequencing, organizing,etc. But there is no magic wand, the brain takes a long time to heal and that is simply that.
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But — just to be a (smiling) devil’s advocate — the UBuffalo people have been successfully treating symptoms of PCS with their approach. In their experience, “Everyone gets better.” Why are we not focusing on the positives? Of course, we don’t have all the answers. Of course we don’t know exactly what is going on. So what? They found that people got BETTER — athletes sooner than non-athletes, but EVERYONE GOT BETTER. Why can’t we focus on that? Must we live in perpetual doom and gloom? Maybe it’s my right-brain injury making me more optimistic than is warranted… or maybe I just have an innate capacity to see opportunity and promise in documented evidence.
I think, especially it comes to the brain, it’s important to not get too caught up in what existing research says. Remember, the neuroplasticity people were laughed out of town by generations of scientists who believed the literature that pointed away from it, and who were stuck in that old way of thinking about being stuck with what you have for ever more.
What drives me nuts is that the same people who were utterly merciless towards the forward-thinking neuro-innovators, are now climbing on board the bus they tried to light on fire and push over the cliff. It’s maddening… the two-faced hubris. And the bullying and scientific intimidation cannot possibly help, in finding new ways to help people in need.
As for drugs, it’s fine if people have mixed feelings, but the FACT of the matter is, certain drugs which are downregulators of sorts are sedative. Sedatives impair a brain that is already moving more slowly. And that impairs cognition, as well as triggers greater irritability. Close observation and objectivity go a long way towards reality checks and making sure the right thing is happening, whether it’s drug-related or not. Just paying attention, period, goes farther than many doctors can manage. And it leads to actual science — scientific thoroughness that’s grounded in actual observation. Imagine that…
In the process of being scientifically thorough, I think it’s vital — especially in the case of TBI, where so much is at stake in terms of people’s daily lives — that we not get stuck in endless cycles of debate and saying “well that’s true, but…” and then end up just discussing stuff till we all run out of steam, people run out of hope, and the research dollars dry up.
At some point, we have to bite the bullet and just DO SOMETHING — and that’s what I see the U at Buffalo people doing.
And I support their courage and commitment. At least they are actually doing something.
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alright – to be fair I haven’t read the buffalo study and will do so – off the top of my head however is this –
1. how many people are they treating? and to what extent are they injured? and how far down the line are we talking about ‘better’
2. At one point I too would have said I am better now, bring it on – and then I discovered I am not really who I was. Even if a neuropsych test says this person is within normal limits is that the same as recovered?
3. It may be that this is true – and this is exactly my point- we don’t know enough about mTBI. Think about this- is the models of care are based on in-patient severe tbi then what is the natural path of recovery for them – first stabilize life support stuff (breathing on their own, etc), then address physical stuff and finally cognitive stuff. It could be that the rule of thumb of waiting 6 weeks before deciding that someone is chronically damaged is a mistake – that if you address pcs IMMEDIATELY you will get better. But how to address it is tricky.
4. I will add that I am a big proponent of physical activity – and I returned to physical activity very quickly and DO attribute a lot of my recovery to that – but I wouldn’t say I am ‘better’.
5. There are a LOT of people doing things, the TBI model system and COMBI are doing some approaches (look at http://www.tbindsc.org/ or http://www.tbims.org/combi/, the military is doing TONS (look at http://www.dcoe.health.mil/), and the government is slowly approving more funds, more grass roots stuff – check out brainline.org – many states are creating departments focused on this, I am working on a national consortium database – there really is a lot of effort. I am not trying to be negative – just explaining that what works in one place may not work in another situation. Multiple small tbi’s may be different than a severe tbi – even though they appear similar in cognitive issues after a time. Does that mean that they require different models of care? And what about neurofeedback, or HBOT? Some of this is controlled by insurance and big pharm and who will make money off of it – no question – but it’s a serious problem and people are paying attention.
As to the drugs – I am with you on this BUT, if you get a 200 lb man who loses his cool and gets pretty physical fairly erratically it might be helpful for them to use a drug with can help him keep an even keel. And some mood stabilizers are also supposed to help with focus. I think that drugs should be seen not as solutions but as temporary measures.
It’s hard for some folks to think too far out of the box because they won’t get the funding for it – but progress is being made. Talk to survivors from 10 years ago and they will tell you how much has already changed.
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Okay read the article –
1. The article talks about concussion and talks about PCS – and you see how these terms get confusing – because PCS is one term for TBI but it is not used universally. One of the recommendations we have is that there be more standardized and consistent use of terminology to avoid this stuff –and make insurance coverage better. They are using PCS to refer to people who experience symptoms beyond 6 weeks (which is not necessarily how it is always used) Essentially symptoms beyond 6 weeks indicates mild TBI. Mild TBI is a chronic life long problem EXCEPT that many symptoms DO clear up in the first year to two years – and perhaps almost all. This is why they thought that was the window of opportunity. However this turns out to be false – symptoms continue to resolve even 10 years later. And people may feel like symptoms are gone but they still have some changes. So for the first two years people are probably reluctant to say you have a chronic lifelong problem and so they might call that PCS too. At some point however, when it doesn’t go away – it’s mild TBI
2. The problem with sports concussions was that folks were going back in to play immediately which was a disaster – and created lasting problems. So number one rule – despite all the bullshit if you get dinged seriously you need to take the time to recover. Personally I would retire too – and yes, even if it meant a million bucks. Rich and brain damaged is not worth it to me.
3. The prevailing notion of rest and recover meant that people should not be challenged too intensely in the beginning – as I mentioned this probably comes from severe TBI’s who were in need of physical recovery FIRST. Now, when you have a TBI you frequently WANT rest – you need sleep like nobody’s business BUT when you are awake and able you can do things. I have long been of the belief that more should be asked of mTBI patients earlier, but when they show signs of fatigue they should back off. There is probably a correlation between the need for additional rest and the degree of damage that was done. Jill Bolte Taylor in her book says that it took her about 3 years to cut back from 11 hours of sleep a day to 9 after her stroke.
4. These guys were looking at a certain set of symptoms – probably balance, headache, dizziness, visual problems, and the basic neuro (count backwards, short term memory). So sure – keep them active and take good care of them and these symptoms will disappear. Bang them on the head a few dozen times and symptoms will not disappear BUT they will still be mild TBI.
5. As I said I am a big believer in exercise – similar studies occurred in NYC with aerobic activity – of course it is invaluable to be active and this can also help with sensory problems. But many mild TBI’s are not ‘dings’ and cerebral blood flow isn’t the problems. Remember that a tbi is caused by stretched, damaged and destroyed axons – if you give blood flow and good care you may restore damaged or stretched connections but you will not give life back to dead neurons. SOME neuro-regeneration occurs in the hypothalamus but not everywhere – so the brain has to re-route information – and that causes loss of cognitive reserve and slowed processing (if it can be done at all). In time that can improve somewhat as those circuits get utilized better but unlike when you were growing up you cannot build new circuitry. Ultimately a healthy brain and body is always better.
6. One key element about sports players is that they may not notice some of the subtle cognitive deficits for a while. Don’t forget physical memory – which is their chief skill – seem pretty resilient and may return quickly – but if these guys were faced with tasks that demanded more from their frontal lobes they may not work as well – or they may find making a decision on the field more difficult.
7. The folks in the article also state that this may help SOME folks – but it doesn’t undo long term lasting damage.
8. I am all for looking at mild TBI very differently – I have even developed what I think would be the ideal program for working with these folks and it is much more aggressive and demanding than what most facilities would prescribe – though it’s not very fancy nor expensive. IT does require co-ordination of agencies, changing bias and discrimination about TBI and what that is or is not, active participation by individuals and even more significantly their families, and a lot of intense support early on which is gradually eased up.
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I had a tbi about 5 years ago. I am still having problems. I think this will probably be lifelong and now I am accepting this, even though it is depressing to think about. I am dealing with it better finally, thanks to my neurologist who prescribed ritalin. If I skip ritalin for several days, I am still pretty slow. I thought time made me better. Now, I know it is the medicine a lot. Over time, I have improved quite a bit. I am happier now finally, however I still feel that I struggle with everyday life, even simple things like cooking, even with hygiene. I have always been a clean person. I am just now realizing, I had better hygiene before my accident. Sometimes, I forget to eat or shower if I don’t take my medicine. If I don’t write things or have reminders I forget. I had post-traumatic stress after a drunk driver hit me. I had temporary paralysis for less than a minute when I lost control over my lower body and could not move. It scared me to the point of never wanting to drive or leave my home in fear of another person driving injuring me again and becoming permanently paralyzed. I had severe depression, and still have depression but I am coming to terms with a lot of things and accepting myself however I am. I am doing much better, but everything is much harder now for me. I need a lot of help from my family and I don’t like that. I want rely only on myself and know I can’t do everything alone. I guess I could be dead, so I should be grateful, but I feel like a piece of me was stolen forever. Am I the same person? Yes and no. There are parts of me the same, but I don’t think I’ll ever be the same again. I cannot begin to describe what is like to have a drunk driver hit you. Well I could a little, but you would be scared sh-tless if it happened to you that’s all I can say. I am lucky I know. I have gotten lost as to what I was going to say. I have a lot of cognitive problems, physical problems, and emotional problems as a result of this. I am just finally starting to feel sort of normal again. Sort of. I still cannot remember myself fully how I used to be. I have purchased countless songs on Itunes in hopes of old songs I used to listen to before the accident would bring back my memories of my life. It has helped a lot but many memories don’t stick. They don’t stay in my mind long. I can’t describe it any other way. I feel like I am desperate to remember my life before. I am just starting to remember things more in the past year or so. I have had a lot of problems socially. My behavior is one of the things I am just starting to become aware of. I have severe mood swings ranging from laughing hysterically to deep depression that I can’t pull myself out of. Sometimes, I cry for no reason and have to attribute this to the injury now I realize. Things just don’t seem the same. Is it in my mind? I wish it were. I wish it were when I put shampoo on the kitchen sink and spit toothpaste on the floor instead of the sink. I wish, I could control my temper. I wish I could control crying fits. I have tantrums so bad I cannot control them sometimes.
Then I am fine. Same with crying spells. Usually they are shorter lived now and then I am fine. No warning it just comes. I am frustrated when I am overwhelmed with too many things. I do not follow conversations. I eat like a pig in restaurant. Sometimes people look at me. Now I try to eat slower. Now that I realize. My speech is slurred. I talk in incomplete sentences. Like phrases. I lose my train of thought in conversations. I have trouble remembering appointments. I have to double check things I write. I have people remind me of things. I have to concentrate to drive sometimes. If I don’t take my medicine it is harder to pay attention driving. I can do it but it’s harder. I have to take it. I lose track of time. I have no judgment of time, nor judgment for that matter. I have trouble getting along with people because I take things the wrong way I’m now starting to think. I say things that don’t make sense I think sometimes or people don’t follow what I’m saying. I have a friend who says they don’t like how I act on ritalin, that I’m “weird” when I take it. Whatever that means. I thought I threw my keys in garbage and had to pay 20 dollars once for spare keys in my apartment. The keys were in my pocket. I put a dirty rice strainer in the cabinet. It had to be me because I live alone. I didn’t know how it got there or the potato chips in the freezer. I can’t find my car regularly. I can’t remember if i took my pill so I skip it so I dont overdose if I took it and just can’t remember. I left my laptop at the oil change place. I told my doctor and he upped my ritalin. I lost every other thing that week too. I look on a daily basis for things I can’t find. It wastes so much time , is so frustrating, and people get aggravated with me when I do dumb things forgetting things. Friends have called me challenged and retarded – great friends I know. That hurts. I have self esteem issues I now realize and constantly call myself stupid. Anyway beyond all that, 5 years later my traumatic brain injury/concussion whatever you want to call it, post concussive syndrome—I’m doing much better. Or am I? I say I’m fine to the doctor all the time cuz I give up and I’m used to this…Ya know what after typing all of this I realize I’m better …but I’m not so ok. In fact I don’t feel ok at all. Maybe I have to see another doctor or tell my doctor this like bring a list. He will probably act like it’s in my mind that’s why I don’t say anything. He acts like he likes me. But he said I would be better in 2/1/2 years to 3——-I say I was beginning at 3 and am just now getting better. I assume I need to up my ritalin. Think I’m going to talk to him about it. Soon. Very soon. or try something else because I am not even functioning well I now realize. I’m better but I’m not. Does that make sense?
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Sorry to hear about your difficulties.
Actually, what you wrote totally makes sense. And it’s good you’re talking about it, because some of this stuff you can develop coping skills for — like always keeping a notebook with you and getting in a routine of things you do each day. About 3-4 years ago, I had to make a list for all the things I had to do in the morning, from brushing my teeth and taking a shower and washing my hair and getting my breakfast and feeding the household pet. If I didn’t write it all down, I would get lost and forget things and not remember if I had washed my hair or brushed my teeth or eaten my breakfast.
I also had terrible, terrible temper problems, as well as crying for hours on end. That gradually eased up.
Ritalin can be helpful because it can jump-start your brain. TBI can cause your processing speed to slow down and make you groggy. I can’t take drugs because I’m so sensitive to them – I feel terrible when I am on them. So, I exercise instead. Every morning, I get up and do something. Sometimes I ride an exercise bike. Sometimes I lift dumbbells. Sometimes I do leg lifts and other calisthenics. Sometimes I go for a walk. But I try to get some exercise first thing, every single day. If I don’t, I feel dense and stupid and slow. I hate that.
People will get aggravated with you. People are a trip. They are impatient and can be very uncompassionate. Especially with TBI.
Do yourself a favor – don’t call yourself stupid. It’s probably impossible, I know — I do it all the time — but you’re not helping yourself by doing that. Anyway, who ISN’T stupid, in one way or another?
I’m not sure what else I can write that might help. Just hang in there — try some exercise in the morning when you get up. And try to develop daily routines and habits that let you get used to doing things a certain way, so you don’t have to think so hard about everything.
That’s exhausting. I should know…
Well, good luck. Hope that helped. If not, write more and I can try again later.
Cheers
BB
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Hi anonymous Jan 6, I agree with BB, dont call yourself stupid, call yourself brain injured. You know that going round in circles thing you mentioned? That is helped by gradually (its slow Im afraid) learning ‘standard operating procedures’ (SOPs) for everything. do this one at a time. you might need some help, and lots of reminders. Always have your keys in your pocket, always do things in the same way and keep things in the same place. Its not your fault if you dont get things right right away. Tell people who criticise that youa re doing it without the equipment they have. Even if your brain injury doesnt recover,your life will be better than this as time goes on and you develop these SOPs. Or habits as BB said.
Good luck.
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Wow, what an amazing blog to have discovered. I suffered a mTBI almost 11 months ago and though, I have always looked, talked and sounded fine, I don’t remember much of the last 10 months. Sadly we joke about it, oh well I won’t remember it anyway. What is amazing is that I can remember how to do my job and everything else prior to the accident. The washing my hair or did I debate is lessening. yes, I forget to shower and wash my clothes still. My house is a cluttered dirty mess and I don’t remember to clean the cat box in a timely manner. My husband says that I was like this before. He is obviously dillusional, as yes, I was messy in my previous life, but not dirty. So, I have a routine. Clothes I wear, go directly into hamper, only thing I wear more then once are jeans and sweatshirts. I leave notes for myself, but then I forget to read them. I learned the hard way that I don’t have the energy that I used too. I have to factor in rest times and rest days. Exercise is one of the best therapies we can do. Gives you endorphines and oxygen to your brain.
Don’t call your self stupid! You’re brain injured, a huge difference. If people criticize you and make fun of you, remind them you have a brain injury and you appreciate their understanding. Also, finding new friends is also a good thing.
I am not the same, I cry uncontrollably, I have fits of rage, I can’t sleep and I am exhausted all the time. I am trying to accept the new me, parts of it I like, parts of it I hate. I feel guilty feeling sorry for myself, yes it could have been worse, but it is still a change, I am blessed and happy to even be alive and have the ability to write this. But, I am still angry and confused as to why this happened to me. BUt, I am slowly accepting, that I will never be me again, but I can be a new me and learn a new way of life. Stress does make the TBI worse, yoga has been prescibed to me as well as massages. I am trying, and I appreciate that I am not alone.
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Hey Susan, thanks for writing. It sounds like you have been through it — much of it sounds very similar to my own story, as well as many others who I’ve come across. Definitely try the yoga and massage – they are good for your nervous system, which can get really fried, handling all the changes on a daily basis. Yoga can train you to breathe differently, and massages help with the rest-digest response, which usually gets overwhelmed by the fight-flight activity we get into.
No matter what anyone says, TBI changes us and our perception of ourselves, and then it can be tough going, coming up with a new and different understanding of who we are and what we are about. It’s not impossible — it gets easier with time — but it is NOT easy, and it does need to be done, even if we “seem okay” to everyone around us (and we often do).
I actually don’t discuss my TBIs with other people. When I first put 2 and 2 together and realized that my fall in 2004 was the reason behind my bizarre behavior and inner personality change, I told a number of people who I thought were friends, and who I thought would understand — one was a therapist, one was a yoga instructor, one was a special ed teacher. None of the “got” it and all of them protested that I was “too smart” to be struggling with TBI. So, I stopped telling people. And I quit hoping that they would give me a little more leeway because of what I’ve been dealing with.
It’s unfortunate, but people just don’t get it. And a lot of people (like your husband, apparently) have selective memories about how we once were or how we could be.
Ah, well… Just hang in there. The outbursts and meltdowns and uncontrollable weeping have subsided a great deal for me, tho’ they still happen. Here I was feeling so good about myself and my progress last week, then I had a 7-hour “marathon meltdown” on Saturday. But I think I’ve learned a lot from that and will use what I’ve learned to do better next time.
Best of luck to you and let us know how you’re doing.
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ADHD (2013) was called Minimal Brain Damage (MBD) in the 1950’s. Meds work for some persons with epilepsy and some persons with ADHD. X-ref: Nerves in Collision book by Walter C. Alvarez, M.D. (about Dilantin, an epilepsy medicine) and the How To Cure Hyperactivity book (1981) about Inattentive ADHD, auditory processing, dyspraxia, and nutrition by C. Thomas Wild, introduction by Anita Uhl Brothers, M.D. Sports brain concussions are finally being talked about a little after being intentionally fibbed about and covered up for decades by the powers that be. X-ref: Impact test for sports brain concussions, etc.
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Very interesting about that MBD diagnosis. I guess it shows how far we’ve come… to some extent.
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In 2008, I fell on ice and fractured my skull in 2 places, shattered my face plate, shattered my eye sockets, broke 3 bones in my back, broke a hip, and my brain hemorrhaged. I drove 12 miles through a blizzard seeing triple before I got some help at a Kwik Trip. I was in the hospital for 9 weeks. after 3 weeks I couldn’t get out of bed. I was getting weaker and weaker. All of the nurses and doctors thought I was malingering. Finally they did a blood test and found that when I fell, my brain sent out a message to my organs that I was dying and they were right. My kidneys had stopped working at the fall and now my creatinine lever was 14.5-it should never be above 1.0 and at 6.0 they start transplants, my potassium was 7.5 and at 5 you are dead. They put me on a helicopter and flew me to a specialist at Abbot Hosp in Mpls. The head of the renal dept told me that he was betting others that I would be dead when I showed up. They had the morgue in the ER with a body bag waiting for me. But I was still alive. So they sent me up to ICU with a hospice nurse. The guy from the morgue was on call all night because they were sure I would be dead by morning. Needless to say, I lived.
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What a story. That’s amazing. And it just goes to show, there’s a whole lot more possible than a lot of people give us credit for. Thanks for sharing your story. My day just got a whole lot better, because of it.
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