Can anyone tell me what treatments you received for Encephalopathy?
If you were diagnosed - do you have difficulty learning new things?
Thank you for your assistance.
Yes…Mine is a toxic Encepholopathy…So mine means brain damage from a outside or organic source…
It has been a long slow road, it attributed to sensory integration problems…yes learning new things cause much confusion, but I get by, some days are good some are bad…I think of learning new things as my theripy!..I havent had formal theripy in over 8 years…I keep working hard to get better…its slow…Originally I hat OT,PT, and speech…
Hope you learn to navigate through it like I have…Just one day at a time…it does make it easier then.
Thanks for your reply.
Do you work? If so what level or type can you do?
Thanks
Oh my no…It happened over ten years ago…My background was electrical construction…I dont coup well with things, a job would put me in the nut house…I was locked up once…never again!..I need things simple with as little change as possible…
Encepholopathy is a very generalised term, there are many different forms of Encepholopathy and depending on the cause will depend on the treatment. For example Hepatic Encepholopathy is caused by a dysfunction of the liver, where Chronic Traumatic Encepholopathy can be a result of repeated brain injury. They (the dr’s) can run tests to determine the diagnosable causes of Encepholopathy like liver enzymes, but for some forms of the disease these tests can be inconclusive. This can be a BIG problem as some medicos simply guess rather than come to a conclusive diagnosis. Because the term is so generalised and can cover a large range of issues, the treatments vary vastly and so do the results of such treatments. For some people the impact of Encepholopathy can be minimal, where for others it can be life changing even soul destroying.
DavOD,
How do you survive financially? Or how does anyone survive financially when you can’t think fast or remember efficiently?
And, if one resolves to accept being deficient in abilities once good at, what kind of work can we do?
There are plenty of people who were never very smart or who cant write out a check who can make good money but I am at a loss of what I can do to survive financially.
As much as I have lost, I still keep getting hired by people whom I realize are actually VERY VERY bad at their job - yet they have good MICRO MANAGING skills and get under my skin with their pathetic antics. - I had my own business before most of my TBi’s so I wasn’t a complete f-up.
When is it time to give up trying to be a functioning productive worker?
Sunny, that is not an easy question to answer and I believe it is only the individual who can answer it. BI’s are so very individual. 2 people can have exactly the same incident but with vastly differing outcomes. As I’ve said previously this is not a case of A + B = C, so to say that injury (A) + impact (B) will result in impairment deficit © is impossible. I have known of people who simply given up, ‘Ohh it’s all too hard’ and haven’t even attempted to get back into life. Now, don’t get me wrong here, I am not making a judgement, I mean I can understand why they gave up. This is not easy and again, as I’ve said previously, anybody who tells you this is an easy journey has never been here. For me, I know I have limitations. Some days I DO NOT want to accept these limitations and I push myself harder than I should, only to pay for it later. The following day I’m kicking myself for pushing my limits and a pay for it 10 fold in agony. This result shows me that although I have the will to continue on as before, I no longer have the ability. I have now been doing this for years and still some days I do not want to accept those limitations. Some people say you must accept. LIKE HELL, I DO NOT WANT TO ACCEPT, but the reality is I ain’t here by choice. Nobody and I mean NOBODY!!! would choose to be here. So I have no choice but to accept my ‘new’ limitations, knowing that if I exceed I am going to pay. So, for me, it’s an extremely fine line of understanding, not acceptance, but understanding of my limitations and attempting to work within these limitations.
So, when do I give up??? NEVER, but I have to learn to work within my limits and that, for me, is a daily battle.
Its a hard question to answer…One year after my accident I filed for SS…I have a small pension, that got split in half with my X…I survive, I have my sanity no thanks to my wife and kids…Some day I hope to try and volunteer, but that is still far off for me.
Sunny1 you ask, “When is it time to give up trying to be a functioning productive worker?” Merl and davOD both gave their good point of view and they both say this is not an easy question to answer. To me the question is difficult to deal with because we want to overcome obstacles and come back stronger. The natural instinct for most human beings is to assert ourselves, believe in ourselves and we want this ability to overcome difficulties. Some people who have a strong will can have a knack of turning apparent setbacks into new opportunities, even thriving on and learning by adversity. There are those who rather not ask why something cannot be done and do whatever they set their minds to. Being strong, confident, capable, secure, having a will and ego are people who have the ability to be effective in their environment.
To me, my maleness wants to act to prove my strength, rise up to new challenges and use my strength to achieve worthwhile goals. However, because I cannot problem solve and because I have emotional reactions to my mental deficiency the madman within attacks. My mental connections will go haywire. My delusions become more consuming and then true craziness. I will even think everything and everyone is secretly plotting against me. It takes days to recover, physically exhaustion, which only compounds the problem. So in a sense, I struggle between thinking and doing, which makes me obsessed with defending myself from my environment.
In regards to you, though, if you can be in your environment without it being a threat and everything does not feel perverse and dark maybe finding some work could give you a value. If you do seek out work, such as part time, you will need lots of acceptance of your limitations. There is a link missing in your chain now and you will need to learn to not be discouraged by your limitations nor tempted to deny them. This acceptance involves painful truth and it is natural to create grandiose fantasies of being better than we are. Acceptance is, at its simplest level, acknowledging that we are all limited human beings.
Acceptance does have its problem because it can also create a pride to endure whatever happens by tuning out. The mind can feel nothing can be done to change things and “whatever” it is not a problem after all. “Well it does not really matter.” This type of acceptance is resignation, a giving up, rather than dealing with the issue. The problem with this type acceptance, which is basically denial, is it refuses to see a problem. It can minimize the problem, down-play problems, so everything gets back to normal. Denial as acceptance is a penny-wise and a pound-foolish. Judgement is extremely poor here and the staying power can simply become the problem.
So to me, if you want to be a productive worker, you need to perceive patterns that are actually present in you and realize the madman imposes patterns onto very circumstance. When things are seen correctly, within context, it can offer utter clarity. With a brain injury, though, we are more out of touch with life, nothing but delusions, and it is just damn hard to come to terms with this. I do not feel you being eccentric or deeply delusional and so courage may be your greatest strength. The depth of courage is a test because to do or not do and it takes courage to put yourself on the line. Courage is fearlessness, tremendous support and inner strength. It is naturally there as you need it. So to answer your question maybe look at your courage and how you draw on it for qualities of strength and will. It is tremendously supportive, even when the chips are down, realistic, and becoming courageous is a high achievement.
A lot of info there. Thanks for the time and energy you put into that message. Glad you mentioned your limitations that is a big issue for me because I still can’t figure mine out.
I can’t figure how to organize so with lack of memory added I feel like I’m only doing half of what I am supposed to and everything takes three times as long as it should.
Ability to remember is biggest draw back. It is like that am on auto pilot and just do what I think I should instead of doing things they way I am supposed to.
I don’t know how to fix that.
I keep thinking I need a system so that I don’t have to rely on memory but I don’t know how to figure a system out either.
All I know is that every day it gets harder and I feel more behind every day. But because I haven’t any way to measure my abilities I really don’t know if I’m slipping - staying the same - or even improving in some way.
Anyone in here like that?
Sunny,
You need a memory book to stay on task!..If your into teck stuff there are some apps that help also…I used a memory book and used my phones timer and calendar with alarm to help me be organized.
Hey Sunny,
My memory is a HUGE issue too, one I don’t like to admit to. When working my memory was good, but since my last surgery, it has deteriorated something shocking. To be honest it was my wife who noticed it more than me. She would tell me how bad my memory was, but I’d just make a joke about it, then ask her “Who are you???” but it has gotten to the point where I cannot joke anymore. To help me manage I now keep a diary, a list of tasks that I need to complete. Initially I’d write out my list then try to complete everything within the day, flogging myself in the process and paying dearly for it the following day. Thinking I simply needed to just build up stamina I kept pushing and pushing. Instead of building anything I was slowly but surely burning myself out. Now being the stubborn #$%^%$ that I am, I couldn’t see it and nor did I want too. But this was the reality and this was part of that awful thing called acceptance and I HATED it. So rather than accept I put up a massive wall of denial. The mrs put her foot down and told me to stop, she could see what I was doing to myself. I have to learn to pace myself and for me, ohh, that has just been soul destroying. Prior if I wanted to do, I did it. Now I have to think about it, examine the task, examine myself. “Am I able?” and this has been so foreign. Now I have to plan everything, every contingency, every ‘what if this happens…’ Map out a plan of action. Grrrrrrr. That’s not normal, well, not normal for ME!!!
I, personally don’t have a fixed set of issues, they vary wildly. Like I’ve said before “…some days I could leap a tall building in a single bound… …other days I’m lucky to be able to crawl out of bed…” So trying to pinpoint cause/effect is impossible. Somewhere on here there is a post about ‘spoon theory’ (and if you’re unsure what I am talking about, Google it) and that’s about as close as I have come to grasping this reality, to be able to explain it. If I use all those spoons in one day, I’m screwed for the rest of the week, I don’t just slow down, I stop. Then I beat myself up about the fact I’m not doing what I feel I should be able to do. For some ‘stupid’ reason I’m physically exhausted and then, just to add to it, I beat myself up mentally. STUPID isn’t it.
Many years ago, in a time I tried to escape my reality by crawling inside a bottle (drinking), I was introduced to a prayer. Now before I go any further I am by no means a religious man, in fact, not at all. But this prayer/saying has helped:- “Grant me the serenity to accept the things I cannot change, Courage to change the things I can and the Wisdom to know the difference”. I DO NOT always have the serenity, nor the courage, nor the wisdom. But just to know I’m not the only poor B$%#^&D going through this S%#& helps me immensely.
So you ask " Anyone in here like that?" OHHH HELL YEA!!!
Merl,
You are a wealth of information. How do I find out what happened to you that got you here?
Also, do you use any medications? I notice a major change if I do or don’t use caffeine. HUGE difference! I used to think I did more by noon than most people did in a whole day!
I am glad you have a wife to stick with you who is supportive.
May I ask what your sleeping habits are like since your TBI?
Thanks for all you share.
Sunny
Hey Sunny,
"…what happened to you that got you here?.." Ohh quite a journey 
I was initially the passenger in a MVA as a child, but as no scans were available back then, the dr had a look and said all fine. I suffered a couple of other head injuries due to violence, but again nothing identified. Over the years there were all sorts of signs and symptoms and they were all discredited as everything from growing pains to hypochondria to crazy. Fast farward 10+yrs and I’m driving down the road and the lights went out, couldn’t see anything. I went to the dr had a scan and he came out with “ohh look what we found…” as if it was all new, I’d been telling the dr’s for years something was amiss. So they operated and said “all fixed”, things weren’t all fixed. But I got back into life. Did a bit of study, got me a qualification and started working with young people as a youthworker. In this time the headaches were awful, but each time I saw the dr’s was told “All fixed”, so I ignored symptoms. Changed jobs and started working with people with disabilities, teaching them how to live independently. So, I’d work with 5-6 clients a day, returning to the office between each to write up case notes. One night I came home from work and I was very unwell, the wife looked at me and called an ambulance. I was shot off to hospital and operated on again the following day, this time they placed a shunt within my skull as the fluid was not draining naturally. They told me I’d developed a growth which had caused a midline shift, blocking the aquaduct, causing hydrocephalus(water on the brain). Again being told ‘all fixed’, so, as before I got back into life (well, tried to at least). Things were bad, VERY BAD. Again returning to my primary medico, only to be told “They operated, they fixed. Get back to work…” so I did. Only to collapse at work and again being rushed off to hospital. The surgeon was furious, why hadn’t I followed up with him. To see the surgeon I needed a referral from my primary medico who told me to get back to work, so I’d followed medical advice. Again they did a scan, then came back and told me the shunt had fractured, so they operated again and replaced the shunt. Leaving the broken tubing in place and replacing the whole appliance (appliance? makes it sound like I have a toaster strapped to my head 
) When they replaced it all they opted for a magnetic valve, this valve was faulty, so they operated again and replaced that.
Since then I have been a mess. I don’t have a day without excruciating pain, at times my eyes feel like they are going to explode from my skull. I have been on all sorts of medications, everything from high dose opiates to psych meds (cos you must be crazy to be having pain like that…) I’ve seen all sorts of drs from the obvious neuros through to ophthalmologists, cardiologists, pain management specialists etc, but none that have any great answers. I’ve had another collapse at home and upon attending the hospital was told “we could operate again but, we could in fact make things worse…” WORSE THAN THIS??? Ahhh, no thanks. So now I manage the best way I can for me. I try to minimise my medication use but my mrs gets on my case when she can see that I’m in agony and tells me to take it. Grrrrr. I do ‘self medicate’ with a ‘home grown’ alternative and this has helped to reduce the pharma crap. I also have a hydrotherapy pool at home and this does help me to relax and assist with sleep, as otherwise my sleep is awful.
After all the ‘fun and games’ I’ve had with the medical fraternity I have learnt, I have to manage all of this for me, not them. They have done years and years of study, but the reality of having to manage all of this compared to what they have read in a book, is simply light years apart. I’d simply wish they could have ‘this’ for one(1) day, then see how they would manage. If they want to sit in their fine leather chairs and judge from behind their desks, then fine, but they have no idea of this reality.
And that is why I am here. Sharing with others who know this reality. I’m a strong believer in that if we help each other and share our experiences we can only be helping each other, even if that is just to know that “Ahhh, at least I’m not the only one going through this crap” because this can be such an isolating situation and knowing we are not alone can be such a huge relief.
Merl
Doctors told you that you were fine a lot. What did they call the thing they removed from your brain?
Are you tired a lot or do you need more than 8 hours (not that you get a complete nightly sleep without waking).
Thanks for your story.
Did they ever give you diuretics to reduce fluid or inflammation?
Sunny,
Yes, I have been told ‘all fine’ a lot, hence my lack of faith in the medical fraternity.
They could not remove the ‘thing’ from my brain as it is situated too close to bits I need. Any damage to these bits would cause huge issues.
Yes I am tired a lot, I try not to sleep during the day because if I do my sleep is even more broken up at night, so it’s a fine balancing act. I do use sleeping tablets in moderation. If I’ve had a couple of bad nights then I’ll use a sleeping tablet, but I’m certainly not taking sleepers every night.
I have not been on diuretics to reduce the fluid. Our body produces approximately 600ml (a pint) of CSF (cerebral spinal fluid) per day. There needs to be a balance within our skulls of brain/blood/CSF, if one of these is out of balance there is issues. For me, too much CSF was retained due to a blockage of the aqueduct. Diuretics would not have expelled enough fluid to combat the amount of fluid. The aqueduct is a fine tube that runs from the subarachnoid space all the way down our spine. This blockage caused the hydrocephalus and the need for the shunt to drain the fluid off.
Merl