Ataxia, the slow, silent destruction

Wednesday, August 26, 2015

Ataxia, the slow and silent destruction

Fact- Some things will never get easier, but that doesn’t mean that it has to rule my emotions and how I take on each day as it comes with its own set of difficulties.

This morning, I spilled an entire glass of cappuccino all over my wireless keyboard *which was a gift from my Mom and Dad after doing the same thing on my laptop – which amazingly didn’t ruin the entire machine!*…

I was SO upset that I could have actually punched my desk… but I didn’t.

It doesn’t seem like that big of an accident to most folks, but to me it was yet another frustrating reminder that I do in fact have ‪ataxia‬ and that it is affecting my hands and how well I can grip objects.

I live through my hands – as an ‪artist‬, ‪photographer‬ and tactile enthusiast.

Most of us take for granted how often and for what purposes we use our hands all day, every day. For me, it’s a grim reminder that these ataxia ‪‎symptoms‬ will continue to decrease my abilities and that it will continue to increase the limitations that I’m already unwilling to accept.

For those of you whom don’t know me very well or haven’t known me very long – I’m an EXTREMELY patient human being. I don’t mind waiting, and in fact, I find that slow anticipation is often very well worth it in the end. However, I get REALLY angst-ridden by things that limit my abilities, my options, and mess with my creative outlets.

My creativity is a HUGE part of my healing process, and without being able to do all the things I enjoy doing and find healing from doing – – – I get angry. I get sad. I get disappointed and down on myself. Things I cannot control are often the hardest things to ‘deal with’ emotionally. My logic and my emotions are in an immense battle right now about this, and it’s really hard to just “be” with it, or to accept it.

I’m working on it, and there’s only ‘so much’ I can do about any of it. Logically, I know there’s only ‘so much’ I can control, and the rest I have to fight myself internally in order to just ‘accept’… it is NOT easy, but I’m using ALL of my willpower to do my best to.

In life- There’s 90% circumstance, and 10% reaction.

I have to purposely choose to react in a constructive way, otherwise I’m actively being destructive to myself about my situation and my brain damage.

Being optimistic and upbeat takes its toll, and is almost never easy when it comes to things so life-affecting. I do try my very best to keep being positive, but some days I feel like saying “eff it!” and just be angst-ridden and full of despair. I feel like sometimes I just ‘have the right’ to be angry and upset.

I don’t want to end up in a wheelchair and not able to use my hands. I don’t want this brain damage, *ataxia*, or amnesia, but it’s what I’m living with; eventually I’m going to have to just ‘be okay with myself’ and learn how to live with it.

Today isn’t exactly ‘the day’ for acceptance — but maybe one day I’ll learn how to.

I’ve already accepted SO much – that sometimes when MORE stuff comes on top of it all I just feel like breaking down and having thee most epic hissy-fit and pity-party the world has ever saw…. but – I compose myself – sometimes HOURS later – and just roll with the punches life throws at me.

Yes, it’s okay to be upset and angry about things that I’m not ready to fully embrace – but it’s NOT okay for me to beat myself up for things I have no control over. Today I’m realizing this all over again – and it’s a harsh feeling to know there’s only ‘so much’ I can actually control.

It makes me feel small, helpless, and alllllmost hopeless.

BUT – having stated that – I do know that I have to adapt to survive, and eventually I’ll figure out how to do so about all of this. So far, I’ve done a fairly good job at adapting in order to survive what I live with. So far, I should be content with the fact that I’ve done so well, and that I will likely continue to do well to adapt to whatever comes my way.

I have to give myself credit where it is due, and stop attacking myself as if I had something to do with what’s going on. I don’t.

It’s not my fault I was injured, and it’s not in my control how quickly I do or don’t heal. I just have to learn how to not be so damned upset and to truly find a way to anticipate these things. I do anticipate things changing – that’s a give in – but I never expected things to change at the pace they have been, and I think that’s where all the ‘shock’ and ‘angst’ comes into play. I think that’s why it feels extra-harsh.

Now that I realize that, I can more easily adapt and accept things as they’ve now proven to have become. Easier said than done, but I’ll get there.

I have come to embrace my anger and outbursts of disappointment and am learning quickly how to let it all go. To use it as a tool for processing what I’m going through.

It’s tough sometimes to really embrace that there’s huge things in my body that I cannot control, but I’m figuring it all out. I’m learning how to use my emotions constructively instead of allowing them to destroy me and my intentions for myself and my future. That’s why I say “I’m working on it” because it’s a constant battle of my whits and sensibility.

I know logically there’s only ‘so much’ in my control, but emotionally I feel raw almost all of the time. Being honest with myself is a huge blessing, but feeling so intensely kind of trumps my logic sometimes. It’s a balancing act that I’m learning to maneuver through.

There are very few things in my life that I won’t accept graciously, but ataxia just plain sucks… it’s one of those diseases that slowly deteriorates abilities to grasp objects, to stand up and walk without falling, to swallow without choking, etc… eventually, everyone with my type of ataxia winds up in a wheelchair, unable to use their arms & legs correctly, and have a feeding tube so we won’t choke by attempting to swallow.

It’s scary.
It’s not something I’m looking forward to.
Declining into it is something I’m trying VERY hard to fight.
That’s the truth of it. That’s the reality of it.

I am not focusing on what WILL happen, but instead on the here and now. When I DOthink about what WILL happen, I tend to freak the heck out and scare myself – – – which is destructive and not healthy.

Yes, I have to accept that it eventually will occur, but I have to force myself not to borrow tomorrow’s troubles today.

***Thanks for reading! — Until next blog…***

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What people don’t know about being a Dr’s Patient

Sunday, July 12, 2015

 

You might not realize this, but being a Dr’s patient means that we have to provide them with enough information in order to be diagnosed, treated, or even heard. We’re essentially consumers, and they’re providers of services and goods… all be it, medical treatments and medications (if needed – and the correct ones!)

It could be compared to joining a dating site but not filling out all of the vital information in which to find a proper date.

You cannot go in to your Dr and simply say, “I can’t sleep, have no appetite, and get dizzy.” You have to give them parameters in which to gauge not only what is causing it, but when it is happening, how often, under what circumstances, and then judge by their medical knowledge ALL of the many things that it could be related to – way before diagnosing you or ordering the correct tests for what you’re going through in order to even start any sort of treatment plan.

“I can’t sleep” could mean many things. It could mean you’re having trouble falling asleep or staying asleep. It could mean you have insomnia. It could mean you have restless legs syndrome or neurological distress like ‘anxiety’, ‘panic attacks’, adrenal issues, etc.

“I have no appetite” could mean many things. It could mean that you’re more often than not, not hungry. It could mean your taste pallet has been altered and you no longer like the foods you’re used to eating. I could mean that you’re having intestinal or stomach pain or constipation.

“I get dizzy” could many many things too. It could mean that you’re having vision issues, ear – nose – or throat inflammation, or even neck bone or shoulder muscle pains/swelling. It could also mean you’re having vertigo – which is not exactly the same as dizziness.

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Many traumatic brain injury survivors (as well as post-concussion survivors) have many similar symptoms but cannot accurately describe when/why/how often/ or what is causing them. It is impossible for our Dr’s to know exactly what’s going on with very vague information that we can give them.

With amnesia (or any other memory loss issues) it is VERY hard to keep track of even the most minor to major issues we keep having medically. Even more so, it is harder to accurately describe how our lives have altered due to the medical, emotional, and day-to-day changes we’ve experienced and are still going through.

In short, our medical healthcare providers can ONLY do their jobs with as much information from us patients as possible. This is true for medical care, psychology, psychiatry, physical rehab, and so many other forms of the medical fields we utilize to improve our overall health and wellness (aka: our quality of living life.)

I’m working really hard – even with amnesia and post-TBI issues – to create booklets for us patients to use in conjunction with our healthcare providers and care-givers/loved ones. These booklets include daily “charts” in which us patients can fill out in real time (as things are happening) and then share them with our Dr’s, nurse practitioners, and care-givers in order to have a complete and accurate account of what we’re living day-to-day. You know, the things that are impossible for our Dr’s to witness themselves.

Without this vital information, it is not possible for our Dr’s to create an accurate diagnosis – which means we won’t get the treatment plans we need in order to improve our lives, take back control of our health, and to move forward into managing our daily lives while improving.

My biggest challenge with my Dr’s has been lack of ability to give them clear information. By the time I get to see my family care Dr, I’ve lost recollection of what I needed to convey to him. From that, I’m not getting the right diagnosis or treatments in order to improve my daily-life situation and the issues involved that he could and would help me with. Slowly, over the last (almost) two years, I’ve finally been able to give him enough information that he’s now able to run the right tests, refer me to the right specialists, and truly knows how much my daily-life has been altered due to the symptoms I’m dealing with all the time… and how they revolve and change.

I fear, that if I cannot provide this booklet to other patients going through the very same things I’m going through, none of us will see improvements, hope for a better and more manageable daily life, or any sort of productive changes.

I didn’t get a manual with my head injury or amnesia. I didn’t get any real or valid advice on how to get better. With this booklet, patients like me can have an actual fighting chance at improving their lives. I cannot drive anymore, hold down a regular/typical job, nor can I find “work at home” that is legitimate or fruitful.

MANY patients are NOT lucky/blessed enough to have generous parents whom are able to not only house them, but feed them and take them to appointments and encourage them to keep moving forward.

MANY patients get stuck, get worse, and never return to any state of healthy normalcy.

I refuse to sit idly by and watch this continue to happen to people who never asked for these injuries or side-effects (life-long effects in most cases) and do nothing about it when I have such a great idea of how to help them to help themselves.

Please, if ever you could open your minds to something you’re not living through, open your minds to this. People living with brain injuries and amnesia cannot control what they’re going through on their own. They cannot improve their situations without guidance and long-term help. This booklet can open the floodgate of honest-to-goodness life-changing help that they desperately need, deserve, and would fight for themselves if they were truly able to.

Thanks for reading… until next blog.

What most people don’t know about being a good patient – and how it hurts them…

Physical VS Mental Memories

Thursday, October 23, 2014

Physical Verses Mental – Memories

A physical reminder are those precious “things” that we keep to prove that someone was really, physically here and a part of our lives.A memory of the mind is one of those “intangible” things that we simply hold within our thoughts.

When we lost our house, our belongings, our physical memories just a couple of weeks before my TBI accident, it ruined any chance of – at the very least – the ability to cherish those physical memories of things that after being told my life stories, I could keep and appreciate.

My memories of my mind are also gone. There is no real way for anyone to understand the complexities of reconfiguring a life you don’t even remember in entirety. There’s no depth or measure or fair comparison for me to adequately describe the ways in which it complicates, threatens, and can destroy an entire life of someone whom is still alive.

I am still physically here, but I have nothing of my past to render meaning from. There is nothing to cherish except for the primordial emotional levels in which I contemplate my life stories told to me by 2nd and 3rd parties whom all couldn’t possibly be as accurate or as fairly eloquent as my own memories could have been.

The losses I am faced with, and are still with me, cannot have the “closure” and “ending” that a fair death has. When people die, they are said goodbye to, remembered, and experienced one last time at their final resting place. I feel often times like I’m a walking empty coffin. I realize how drastically morbid and dark that would seem for someone to feel about themselves, but it’s the truth.

All of the wonderful things I conceptualize, artistically and so forth, doesn’t compare to the emptiness of amnesia and the loss of my life’s work of collecting physical memories (which are inanimate objects of little physical value/& the simple basics that any self-sufficient adult acquires) and the literal memories of everything that had gotten me to where I was in life when this all occurred.

I am an upbeat and positive, forward thinking person… but this loss is heavy, and it is made worse when each day of my life is full of physical pains that some days I cannot even handle.

Life is effen tough -dare I even say, “unfair,” but the underlying truth of it all is:
It is up to EACH of us as individuals to choose how to handle the seriously heavy and sucky things that life throws into our lives. I’m doing my very best not to just collapse under the gravity of my situation. I do my honest to goodness hardest work, every single day. I will not give up – and I’m hoping others going through sincerely rough times can muster the same willingness to thrive.

Consistently Incosistent

I’m not talking down about myself when I tell people that I’m definitely consistently inconsistent. Sure, it sounds like a demeaning thing to say about myself, but really I’m just being super honest. Not everyone likes to admit their flaws or to really look at themselves accurately/honestly, but I find comfort in recognizing and admitting my limitations as much as I like figuring out that I’m good at things. I don’t think it’s a bad thing, is what I’m really trying to say.

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Recognition of my flaws and assets are just something that ensures I’m living a genuine life. It can be uncomfortable and sometimes downright depressing at times to realize I’m really, REALLY, bad at certain things, but I do enjoy knowing what my limitations are – and that I can be honest with other people about them so they don’t wind up getting disappointed by me. It’s good to let people know that I’m not always going to be able to keep my enthusiasm or inertia going because of my physical issues, and cognitive limits.

This way, they’ll know that even though I want to follow through on every single thing I set out upon, I’m not always going to be able to complete my personal goals. Nobody gets their feelings hurt, and nobody sees me as a failure (nor do I see myself as one) when they know (and I accept) my limitations. “Honesty is the best policy” isn’t just a random turn of phrase, it is true. I don’t go around proclaiming that I can do all the things I’d like to, because I’d be a liar. Others would mistrust me and see me as a flake if I claimed that. So, I tell them the truth, and accept my own truth, and nobody gets hurt.

I see people (with brain injuries, and without brain injuries) consistently trying to validate why they let someone (or themselves) down about something, when instead they could have been introspective and honest enough to admit they’re probably not going to follow through with their task(s) and they wouldn’t have promised to do so in the first place. It seems rather simple to me that honesty is better than lying about abilities you don’t actually have.

Part-time abilities (is what I call it) is when you can sometimes accomplish things that you cannot always do. Even then, honesty comes into play when others are involved on whatever “thing” it is you’re doing. If you say you’re going to, let’s say, paint a picture for someone – if you can sometimes accomplish that in a day, but not always, DON’T tell the person you’re painting it for that you’ll finish in a day. You don’t know for sure that you can, so don’t give them that kind of false-expectation. It seems like a small thing, but once those expectations add up and aren’t accomplished time and again, they’ll stop trusting what you’ve said, and expect you to fail. Instead, tell them it’ll take you two weeks, and if/when you finish it ahead of time, they’ll be pleasantly surprised. 🙂

That’s how I approach my tasks. I always allow myself the time necessary for my limitations, and then some. That way, when I accomplish something ahead of the time-frame, I feel really awesome about myself, and nobody is left wondering why I haven’t done what I said. I try to be a ‘woman of my word’ and to not make a liar out of myself.

I truly think if more people were self-aware and honest enough, their lives would be easier, less stressful, and the people around them (or themselves) wouldn’t be disappointed as often as I see it happening. I struggled with this reality for too long – when all I really had to do was be true to myself, and be honest to those around me.

Thanks for reading. — Until next entry — 😀

Comment to a TBI friend

I often feel like a ghost as well, but because of amnesia instead of being dead and then a coma…. I’ve been dead, but it was before my last brain injury – I’ve had memory issues my whole life, but my last brain injury caused severe amnesia.

When my family members and friends tell me about “the old me” it seriously feels like they’re talking about somebody other than me. It is not only creepy, but so very alienating. I feel like I don’t know who I was before memory loss. Having people describe me when they didn’t live my life and weren’t active in it for many years – well – that’s just plain hard to listen to.

I truly had nothing (not even belongings) when I came to live with my Mom and Dad after my last injury. I had to rebuild my entire life – from my health to my identity.

I lost a great deal of people along the journey, too – mostly because of memory loss. They didn’t understand and didn’t want to stick by me and get to know the me I am now. I feel those are losses twice over – not only do they not accept me now, but I lost them as allies too.

Through all the ‘coming back to health’ journey – my ex attacked me out of pure frustration, agony, and fear, so I lost him, too. The man who’d saw me through cancer, renal failure & deadly sepsis, and nursed me back to health for over 4 years – being my confidant the entire time – and my best friend. He wasn’t perfect and had flaws of his own, but losing him as an ally hurt just as much as losing my memories.

Of all people, I know what you’re going through, and I know that you must (we must) be unbelievably overly confident and massively optimistic in order to push through our limitations and force ourselves into better health. Brain injury is literally – thee hardest thing to heal from, because the brain takes too long to heal, and continues to die once injured. We’re all (brain injury survivors) fighting our own body as well as time itself.

That is NO small task.
*hugs

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Thanks for reading. 🙂 …until next blog… be well.

Brain Injuries for the laymen

(Cited from: http://smope.net/the-trauma-behind-brain-injury-smope/ )

When a person undergoes a traumatic brain injury, their life is abruptly overturned. This is because unlike other body parts that heal over time but, don’t affect your mind or personality, a brain injury affects your mental process and at times physical abilities.

The main issue of this injury is that most often people are unaware of the fact that they have an injury until it’s too late, as symptoms may not appear right away.

Effects of brain injury

There are two types of traumatic brain injuries affecting mental health:

  • Mild- When a person loses consciousness and becomes disoriented for less than 30 minutes, this is called mild traumatic brain injury. Doctors often overlook mild brain injuries. But, it causes a host of problems for the person like difficulty in processing things, memory issues, fluctuations in mood, not being able to pay attention etc.
  • Severe: Severe traumatic brain injuries is when the patient loses consciousness for more than 30 minutes and loss of memory that lasts for more than 24 hours after the injury. Survivors may have limited control over their limbs, loss of cognitive function. They often require long-term rehabilitation, as the effects are so serious.

Causes

Car accidents, falls and firearms cause most traumatic brain injuries. Of the three, firearms are the most dangerous and cause most of the fatalities associated with traumatic brain injury.

Surviving the trauma

All those who have survived brain injuries have had to deal with several problems such as:

  1. Fatigue– A person with traumatic brain injuries is always tired because the brain requires more energy to heal and works harder than usual. A brain injury also affects sleeping patterns.  To help overcome fatigue try to exercise well, eat a balanced diet, avoid alcohol and caffeine and avoid napping.
  2. Cognitive symptoms– If a person is unable to focus for long, is confused all the times, has difficulty making decisions , has problems identifying objects and has a decreased awareness of his surroundings, then he is facing cognitive symptoms. The best thing to do in this situation is to consult a neuropsychologist. He will conduct some tests to find out whether the brain injury has affected your thinking.
  3. Social anxiety– It is hard for the person to concentrate in public and the noise and crowds only end up confusing the person and worrying him or her.
  4. Depression, anxiety– Most survivors have become depressed as the brain injury has affected their emotional well-being.

Caregivers 

A caregiver is a person who looks after a patient who has suffered a traumatic brain injury. There are certain principles that caregivers follow while looking after such patients:

  • Independence- The main aim of a caregiver is to help the person who has suffered such a trauma to regain their independence. They must help the person perform daily tasks and eventually let the person handle it on their own.
  • Understanding- The caregiver must be aware that no two brain injuries are the same and therefore must deal with each individual according to his specifications.
  • Strategize- Observe the tbi survivor and make a list of their abilities and deficits. Work with the survivor to understand what they is feeling and what they is most afraid of the most.
  • The sooner the better- It is best that the caregiver starts working with the survivor to achieve their goals as soon as possible after the injury.
  • Give control- The survivor should feel like they are in control of the situation and can handle it.
  • Safety first- It is important that you must keep the survivors safety as a priority and not undertake any step that can heighten the injury.

(We believe that traumatic brain injury survivors and our community need smiles and hope to continue on this journey called healing. So, we created the Smope App to help you smile and increase your hope – Got Smope?)

What they’ve forgotten to include is Sensory issues… Such as becoming overwhelmingly sensitive to light, sounds, movements, sensations on the skin, tastes, scents/smells, and many other things that are tied to emotional and physical reactions.

After my brain injury (the last one, the worst of them all) I was not only MORE sensitive than ever before.. (even with my SPD – Sensory Perception Disorder issues).. I could almost not bare anything at all. I still have issues with flickering light, whether if be very faintly coming from a lamp with a low watt bulb, or traveling in the sunlight through the woods where I live, or the soft and gentle waving of a group of leaves as their shadows dance on my floor. Everything seems un-muted, louder, brighter and amplified. All things – tastes, scents, lights, everything and anything that enters my brain seems so overwhelming. It is even worse with consistent panic attacks and overall constant anxiety. Of course, they’re all tied together and transversely cause each other and make each thing worse. It’s rough!!

Sometimes the things most people don’t notice about others, or cannot see them experiencing, are the most debilitating things us survivors go through.

We need to all be more compassionate, understanding as can be, and to be way more kind to one another in this world. Some of us are struggling by just waking up each day. Some of us are pushing ourselves beyond our own limits are forcing ourselves to be or act, or do, or say “normal” things most people take so, so, soooo, for granted.

It’s not easy living with the invisible(to most people) and silent illnesses and side-effects of brain injuries. To us, it is deafening. To you, it may seem a figment of our imaginations or being “too” whatever you wish to name it… “sensitive,” or “impractical,” or worst of all, “lazy.” None of these things are in our control. If it were, we’d chose NOT to live with it. I assure you of that.

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Thanks for reading. 🙂

Brain Injury – The good, the bad, the HONEST – Part 1

There are many misconceptions about minor, major, or any in-between stages or levels of brain injuries.

All brain injuries – “Acquired brain injuries” (ABI), “Traumatic brain injuries” (TBI), Concussions, and even small impacts to the head – they all cause damage to the brain. Some old adages of information state that it is the severity or number of blows to the head that dictates the amount of damage, the severity of the damage, side-effects or long-term symptoms. This simply isn’t accurate. Even a minor bump – (ONE little BUMP) – to the head can cause a life-long ripple effect in the health of the brain.

I’ll share now my own symptoms, side-effects, and long-term issues due to my multiple TBI (closed head injuries – meaning, my skin wasn’t punctured or broken – which is actually more dangerous do to the pressure that is trapped) and how it has changed my life entirely.

I’ve had numerous TBI’s throughout my life. Many of them were “minor concussions” on the medical ranking system used by hospitals to determine how bad/damaging the injuries are. The fact that I’ve had more than one put me into another ranking system for how much overall damage has been occurring in/on my brain and the surrounding tissues.

My last and most recent TBI was rather bad. It was considered a Moderate-to-Severe concussion – TBI. What that means is, there was a lot of internal bleeding on my brain which caused a whole lot of pressure, and way too little oxygen content — which is ‘no bueno’ for the overall health of my noggin. I lost consciousness (which is another indicating factor on the medical ranking system of severity) for several hours and wasn’t taken to the ER right away, which caused irreversible life-long damage to my brain health.

(The reasons for my not being taken to the ER are not something I’d like to share because it infuriates me to no end, and I’d rather not make it about what “should or shouldn’t have happened” but rather to stick to the facts about my health and the facts of brain injuries.)

My last TBI caused amnesia. I cannot (literally can NOT) remember anything from before the accident, and I have a lot of trouble remembering new information for very long. I can only remember new information (post-accident) for several months, or only a few weeks, and sometimes only a few days. Some things however, if I write things down very accurately and vividly (with a whole lot of description) I can force myself to ‘remember’ through re-reading it often. Really only parts of things are retained that way. Eventually I hope things will start conglomerating and sticking around better, and for longer amounts of time. 🙂

Here is some information about the types of amnesia that have currently been given diagnostic associations and names:
( Cited from – http://www.medicalnewstoday.com/articles/9673 – Last updated: Monday 27 July 2015)
[The day before my birthday!]

Types of amnesia

There are many different types of amnesia. Below is a list of the most common ones:

  • Anterograde amnesia – the patient cannot remember new information. Things that happened recently, information that should be stored into short-term memory disappear. This is usually caused by brain trauma (brain damage from a blow to the head, for example). However, a patient with anterograde amnesia can remember data and events which happened before the injury.

  • Retrograde amnesia – often thought of as the opposite of anterograde amnesia. The patient cannot remember events that occurred before his/her trauma, but remembers things that happened after it normally.

  • Transient global amnesia – a temporary loss of all memory. The patient with transient global amnesia also finds it very hard to form new memories – he/she has severe anterograde amnesia. The loss of past memories is milder. This is a very rare form of amnesia. A transient global amnesia patient tends to be older, and usually has a vascular disease (a problem with the blood vessels).

  • Traumatic amnesia – memory loss caused by a hard blow to the head. People who lose their memory as the result of a car accident may have traumatic amnesia. People with traumatic amnesia may experience a brief loss of consciousness, or even go into a coma. In the majority of cases the amnesia is temporary – how long it lasts usually depends on how severe the injury is. Sports scientists say that amnesia is an important indicator of concussion.

  • Wernike-Korsakoff’s psychosis – this type of memory loss is caused by extended alcohol abuse. The disorder tends to be progressive – it gradually gets worse and worse over time. Patients with Wernike-Korsakoff’s psychosis also tend to have neurological problems, such as poor coordination, and the loss of feelings in the toes and fingers. It can also be caused by malnutrition. It is linked to thiamin deficiency.

  • Hysterical (fugue) amnesia – this is a very rare phenomenon. Patients forget not only their past, but their very identity. A person could wake up and suddenly not have any sense at all of who they are – even if they look in the mirror they do not recognize their own reflection (the person in the mirror is a stranger). All the details in their wallet – driving license, credit cards, IDs – are meaningless. This type of amnesia is usually triggered by an event that the person’s mind is unable to cope with properly. In most cases the memory either slowly or suddenly comes back within a few days. However, the memory of the shocking event itself may never come back completely. It is important that doctors diagnosing patients for epilepsy eliminate this type of amnesia from their list of alternative illnesses.

  • Childhood amnesia (infantile amnesia) – the patient cannot recall events from early childhood. Experts say this type of amnesia may be associated with language development. Others say it is possible that some memory areas of the brain were not fully mature during childhood.

  • Posthypnotic amnesia – events during hypnosis cannot be recalled.

  • Source amnesia – the person can remember certain information, but does not know how or where they got that information.

  • Blackout phenomenon – amnesia caused by a bout of heavy drinking. The person cannot remember chunks of time during his/her binge.

  • Prosopamnesia – the person cannot remember faces. People can either acquire prosopamnesia, or be born with it.

So there’s all of that….
I’m fairly certain that before my latest and most horrible brain injury, I had a bit of “Childhood Amnesia” as well due to some emotionally traumatic evens.

Anyhow – along with the amnesia, I also have “Post Traumatic Brain Injury Syndrome” (PTBIS) which I will now share information about:

( Cited from – www.msktc.org/tbi/factsheets/Emotional-Problems-After-Traumatic-Brain-Injury – Model Systems Knowledge Translation Center (MSKTC) – Spinal Cord Injury (SCI) – Traumatic Brain Injury (TBI) – Burn Injury (BURN) )

Emotional Problems After Traumatic Brain Injury

Based on Research by TBI Model Systems

Brain injury and emotions

A brain injury can change the way people feel or express emotions. An individual with TBI can have several types of emotional problems.

Difficulty controlling emotions or “mood swings”

Some people may experience emotions very quickly and intensely but with very little lasting effect. For example, they may get angry easily but get over it quickly. Or they may seem to be “on an emotional roller coaster” in which they are happy one moment, sad the next and then angry. This is called emotional lability.

What causes this problem?

  • Mood swings and emotional lability are often caused by damage to the part of the brain that controls emotions and behavior.
  • Often there is no specific event that triggers a sudden emotional response. This may be confusing for family members who may think they accidently did something that upset the injured person.
  • In some cases the brain injury can cause sudden episodes of crying or laughing. These emotional expressions or outbursts may not have any relationship to the way the persons feels (in other words, they may cry without feeling sad or laugh without feeling happy). In some cases the emotional expression may not match the situation (such as laughing at a sad story). Usually the person cannot control these expressions of emotion.

What can be done about it?

  • Fortunately, this situation often improves in the first few months after injury, and people often return to a more normal emotional balance and expression.
  • If you are having problems controlling your emotions, it is important to talk to a physician or psychologist to find out the cause and get help with treatment.
  • Counseling for the family can be reassuring and allow them to cope better on a daily basis.
  • Several medications may help improve or stabilize mood. You should consult a physician familiar with the emotional problems caused by brain injury.

What family members and others can do:

  • Remain calm if an emotional outburst occurs, and avoid reacting emotionally yourself.
  • Take the person to a quiet area to help him or her calm down and regain control.
  • Acknowledge feelings and give the person a chance to talk about feelings.
  • Provide feedback gently and supportively after the person gains control.
  • Gently redirect attention to a different topic or activity.

Anxiety

Anxiety is a feeling of fear or nervousness that is out of proportion to the situation. People with brain injury may feel anxious without exactly knowing why. Or they may worry and become anxious about making too many mistakes, or “failing” at a task, or if they feel they are being criticized. Many situations can be harder to handle after brain injury and cause anxiety, such as being in crowds, being rushed, or adjusting to sudden changes in plan.

Some people may have sudden onset of anxiety that can be overwhelming (“panic attacks”). Anxiety may be related to a very stressful situation— sometimes the situation that caused the injury—that gets “replayed” in the person’s mind over and over and interferes with sleep (“post traumatic stress disorder”). Since each form of anxiety calls for a different treatment, anxiety should always be diagnosed by a mental health professional or physician.

What causes anxiety after TBI?

  • Difficulty reasoning and concentrating can make it hard for the person with TBI to solve problems. This can make the person feel overwhelmed, especially if he or she is being asked to make decisions.
  • Anxiety often happens when there are too many demands on the injured person, such as returning to employment too soon after injury. Time pressure can also heighten anxiety.
  • Situations that require a lot of attention and information-processing can make people with TBI anxious. Examples of such situations might be crowded environments, heavy traffic or noisy children.

What can be done about anxiety?

  • Try to reduce the environmental demands and unnecessary stresses that may be causing anxiety.
  • Provide reassurance to help calm the person and allow them to reduce their feelings of anxiety when they occur.
  • Add structured activities into the daily routine, such as exercising, volunteering, church activities or self-help groups.
  • Anxiety can be helped by certain medications, by psychotherapy (counseling) from a mental health professional who is familiar with TBI, or a combination of medications and counseling.

Depression

Feeling sad is a normal response to the losses and changes a person faces after TBI. Feelings of sadness, frustration and loss are common after brain injury. These feelings often appear during the later stages of recovery, after the individual has become more aware of the long-term situation. If these feelings become overwhelming or interfere with recovery, the person may be suffering from depression.

Symptoms of depression include feeling sad or worthless, changes in sleep or appetite, difficulty concentrating, withdrawing from others, loss of interest or pleasure in life, lethargy (feeling tired and sluggish), or thoughts of death or suicide.

Because signs of depression are also symptoms of a brain injury itself, having these symptoms doesn’t necessarily mean the injured person is depressed. The problems are more likely to mean depression if they show up a few months after the injury rather than soon after it.

What causes depression?

  • Depression can arise as the person struggles to adjust to temporary or lasting disability and loss or to changes in one’s roles in the family and society caused by the brain injury.
  • Depression may also occur if the injury has affected areas of the brain that control emotions. Both biochemical and physical changes in the brain can cause depression.

What can be done about depression?

  • Anti-depressant medications, psychotherapy (counseling) from a mental health professional who is familiar with TBI, or a combination of the two, can help most people who have depression.
  • Aerobic exercise and structured activities during each day can sometimes help reduce depression.
  • Depression is not a sign of weakness, and it is not anyone’s fault. Depression is an illness. A person cannot get over depression by simply wishing it away, using more willpower or “toughening up.”
  • It is best to get treatment early to prevent needless suffering. Don’t wait.

Temper outbursts and irritability

Family members of individuals with TBI often describe the injured person as having a “short fuse,” “flying off the handle” easily, being irritable or having a quick temper. Studies show that up to 71% of people with TBI are frequently irritable. The injured person may yell, use bad language, throw objects, slam fists into things, slam doors, or threaten or hurt family members or others.

What causes this problem?

Temper outbursts after TBI are likely caused by several factors, including:

  • Injury to the parts of the brain that control emotional expression.
  • Frustration and dissatisfaction with the changes in life brought on by the injury, such as loss of one’s job and independence.
  • Feeling isolated, depressed or misunderstood.
  • Difficulty concentrating, remembering, expressing oneself or following conversations, all of which can lead to frustration.
  • Tiring easily
  • Pain

What can be done about temper problems?

  • Reducing stress and decreasing irritating situations can remove some of the triggers for temper outbursts and irritability.
  • People with brain injury can learn some basic anger management skills such as self-calming strategies, relaxation and better communication methods. A psychologist or other mental health professional familiar with TBI can help.
  • Certain medications can be prescribed to help control temper outbursts.

Family members can help by changing the way they react to the temper outbursts:

  • Understand that being irritable and getting angry easily is due to the brain injury. Try not to take it personally.
  • Do not try to argue with the injured person during an outburst. Instead, let him or her cool down for a few minutes first.
  • Do not try to calm the person down by giving in to his or her demands.
  • Set some rules for communication. Let the injured person know that it is not acceptable to yell at, threaten or hurt others. Refuse to talk to the injured person when he or she is yelling or throwing a temper tantrum.
  • After the outburst is over, talk about what might have led to the outburst. Encourage the injured person to discuss the problem in a calm way. Suggest other outlets, such as leaving the room and taking a walk (after letting others know when he/she will return) when the person feels anger coming on.

[[[[Did I mention this is a very LONG post???]]]]

Since I am exhausted – also part of the side-effects of TBI – I’ll leave this the way it is and write “Part 2” later on.

I’m hoping that sharing this information – once all of the parts are finished – will assist the world at large to truly comprehend how life changing something as simple as three words (traumatic brain injury) can really be. It doesn’t just affect the survivors. It affects their families, loved ones, the ability to work, socialize, have a normal sleeping schedule, and the overall health and wellness of the survivor (both emotionally and physically.)

It affects every single part of life. Some of the most simple and taken for granted portions of everyday life is altered so drastically that the survivor will never return to the “normal” they were before their injury. That’s really the whole point and reason for sharing ALLLLL of this plethora of information.

(As an example) Having a child changes your heart/emotions, your priorities, your habits, your reasons for your choices, etc – but a brain injury does the same things for many intricate different reasons.

Brain injuries don’t just alter capabilities (skills) and limitations (things that cannot be controlled or corrected without rehabilitation, if at all,) they alter the entire structure of the mind and the lives of those living with such injuries. What you used to enjoy or get excited about can dramatically change. The things you find tasty and delicious before a brain injury could disgust and appall you after one. I could go on and on – but I’ll bet you’re already eye-tired and would love to take a break (like I’m feeling right now.)

I’ll post “Part 2” soon! Thanks for sticking with me and continuing reading. If you’ve made it this far, you undoubtedly do care about the facts about brain injuries and whomever it is in your life who is affected/surviving one. Thank you for your diligence and concern. I believe that education and honesty about not just the “clinical jargon” but the personal journey brain injury survivors really go through is vital to breaking the stigmas and unrealistic expectations about how much/ how quickly-slowly / and how well anyone with a brain injury can heal. The BEST thing you can do is not expect too much from the survivor. Most brain injuries never fully heal, and the survivors will never have the same “normal” they had before their injury. (No, that’s not very encouraging, but it’s damned honest – and that’s something that needs to be very clear.) There is NO “Cure,” there has never been a “Full Recovery” from a brain injury (TBI’s most especially,) and there may never be either.

That doesn’t mean you shouldn’t support, love, and encourage someone with a brain injury. But – if you do encourage them, do so with accurate, realistic, and non-expectation. Do not say to a TBI-survivor that they’ll “be back to normal” in any amount of time. The truth is, it takes several years to heal to a certain point, and then the healing plateaus and the brain starts “compensating” instead of continuing healing. The “new normal” is what should be encouraged. Accepting that there is no cure, no full recovery, and no “old normal” is nothing short of awesomely realistic and fair to the survivor. Giving them unrealistic expectations or false hopes is damaging. A survivor cannot adjust and adapt if they expect false hopes to “come true” for them and their injury. It truly is a life-long change. One that everyone in their lives must accept and become familiar with. 🙂

Again – THANK YOU for reading all of this…. thank you, thank you!