New to posting

[2knees&ahip]

Hi all, I am new to posting but have been around reading here and a few other forums here for years. I did post lots of years ago on the really old forums for awhile.

Hi to Kevin as there are a few of you that I recognize reading posts of yours for some time now,also wanted to say thanks for the online guide as it was very well put together and one of the most accurate accounts of ABI and TBI I have run across,too bad it wasnt in print when I first aquired my BI back in 86. Yes that long ago and for years and years I went virtually undiagnosed since there wasnt alot of info or interest in brain injuries and most Docs just shook their head and said " Sorry". It was many years before me or my family figured out why I suddenly changed so much after having encephalitis!

I honestly recall one entire day out of 4 years of High School and recall it as though it was yesterday and each fine point down to who was sitting where and wearing what. Almost like a pic in my mind and it was not a spectacular day by any means and nothing great happened that day either,weird I guess but hey that is what BI is all about isnt it?

Other then that one day I have no memory of ever having gone to high school at all but recall college and everything after.

I suffered profound migraines for many many years and as suddenly as they started they stopped some13 years later. I still have a few here and there but they are only a vague memory of the others.

I have a profound hearing loss bilaterally and this was immediate after coming out of the coma in which I hovered for days and has been progressive in its nature.

After a couple of knee replacements and a hip replacement I applied for SSD and I recall one of the Docs I was sent to giving me some kind of mental tests that showed a 20 percent dementia rate at 46:eek: After getting a copy of the actual test results I found that diagnosis to be inaccurate in that it was not actually dementia at all but I scored really low in word recall and recognition and that is a result of my ABI, I simply do not process the info as fast as I should be able to and spit the word out they are looking for. Whew what a relief,here I thought I was going to add Alzheimers to my already growing list of diagnosis! Goes to show that alot of medical profs dont understand BI's either.

I have enjoyed reading here over the years and have come to realize that many of the things I have and still do experience are the very same things many others do battle with as well, I am not alone in this anylonger.

I see so much of myself in some of the posts of others and even though I hate the fact that others suffer as I it is a good feeling to know that I am not a freak of nature.

I have managed to raise kids and lead a somewhat "normal" appearing life and only close friends and family know about the 10 calenders and my weekly supply of post notes I buy like others buy milk and bread! Thank goodness for my kids thru the years as they have dealt with this all of their lives so they never realized we as a family were different. They thought everyone's T.V. has closed caption.

Now that they are all grown except for one still at home I worry about alll those things they have automatically grown use to doing for me without thinking about it.

Anyway I didnt mean to make my debut talking your heads off and here I did it anyway.

I really just wanted to say thanks for the posts and for all times you made me feel welcome without even knowing it, you just never know who is out here reading do you?

I look forward to getting to know each of you better and sharing our experiences.

Thank you for allowing to be a part of such a great place!

Ruth

[Kevin Jackson]

Hi their 2knees&ahip !!!
In case, theirs a correction needed, I did not put the Guide on. But, I think it is well read.
Thats one thing I have come to find. That a lot of T B I ,s were miss dianosed. Mental illness was one. I was lucky, in the fact that my mom, not only taught the School of Nursing, she became the Dean of that school. Then retaired as Head Nurse of the pysic wards at a V.A.Hospital. When I accepted the poiint that something was worng. I looked up Organic Brain Syndrom. To my surprise it stated that psyc problem play a promanant roll in T B I . Sometime you have to see something before you will admite it, to even yourself. Then the real job started.
Yes I myself can remember the past better than the present. A doctor told me that your brain will remember better times in your life. I think their psycological good times. Nothing dramatic in a material since.
I suffer head aches all the time, ever day all day. I think after a while, they kind of go unnoitced. Their ,their, but we learn to function, and know when its time to stop. Because we have worked on coping skills. And with kids, you have to.
The one thing I started doing when I found this site long ago. I felt free to speak of my problem. I think it was because I couldn't see the people. In my travels I saw people that are withdrawn in the begaining. I know how its hard to comprhend that the stature of the person you created or think you created is over. All the hard work is gone. And they ask you to learn all over again:mad: . A lot of us that dose not have pysical(neuro) problem surely don't want to be noticed. Maybe because we'll be thought of, were crazy. So we get withdrawn or use anger to keep people away.
It maybe a good thing your kids grew up noticing and understanding, not every ones the same. I'm sure they are good judges of caricter. Don't feel sorry. I'm sure they will grow into people with a heart, thinking of others than just themselfs.
When I found this site I feel it was a blessing. It helped me to heal. And I meet a lot of good people here.
Please don't stop talking. Thats what I wish a lot more people did. speak of their problems tell their tales. Their maybe someone out their afraid to tell it. but when they see someone else with the same delema my hope is that they speak up. We all need some kind of help.
I beleive their BLESSINGs here in frount of us every day. We just have to tune ourselfs in to see and hear. (WITH YOUR MIND);) You can learn a lot from the animal. They've always been in tune:D
Don't be a stranger

[2knees&ahip]

Sorry about the guide ting as now I cant even remember where I saw it or what gave me the connection with you:confused: Some days I just dont know where this brain thing is going.

I seem to do that often, A thought or idea and not a clue where it came from. One of those things I seem to be getting use to.

You seem to have such a grip on this TBI thing I think I envy you. All I can do most days is just shake my head and wonder how I got here to this point.

As for the kids? I think they may end up being some of the greatest gifts to their SO"s and especially if they end up with a chronic painer or some other disability. At least I left them with something useful as I read so many many posts of folks with no support and no understanding and partners taking off under the pressure of dealing with illness and disability. To them it has been a way of life to serve others so to say,a learned experience.

Like I said they thought it was normal for us to buy post it notes like most folks buy toilet paper! No kidding here. They were and still do ask " Mom did you write that down"? Put that on the calender? Program your phone to remind you? Thank goodness for technology right? My cell phone now reminds me to do all those little things I cant seem to remember to save my life.

People that dont have memory problems or any idea think I am a nut when my phone beeps in public to remind me in this little voice to take my meds or walk the dog before bedtime and the best one is having to program the phone to tell me where the car is in the Miejers parking lot right?

Now it isnt that bad everyday but it happens! I think after I got over the initial shock of having a brain that works on its own system and learning what that system entails and then accept that isnt normal but hey its what I have and laugh about,yes even at myself I got alot less stressed out everyday and started enjoying life a little more and probably getting some of the function back as well. I am one of those that think other parts of my brain can and does learn to take up the slack but just as a right handed person can write with their left hand but doesnt do it as well,that is how the alternate function of our brains works too!

It certainly takes an open minded person to be able to say Hi I have a brain injury and people say, what like your retarded or something and instead of getting mad you laugh and say "Not quite" but something. Right? I mean if the medical community cant or doesnt understand how brain injuries work how are lay folks suppose to? I do think that folks are getting better at it and even Docs have come along way but only with the help of those who suffer with it dont you think?

I think this is one malady that has been a self taught subject as no one has any idea how the brain works or what to do when it doesnt,in other words there isnt a standard set of symptoms for us is there? We all have some similiar symptoms and we all have some of the same sensations such as daily headaches but to differing degrees. No one seems to be able to say this is how to fix it or this is how it got this way even but with the more BIs coming about the more they are finding answers to some of the questions. I can remember a neighbor boy whom was in a car crash when I was a little kid and after he got home from a long long stay in the hospital we hardly ever saw him again. He rarely went out anywhere and not even around the yard and when you did get a glimpse of him there was just something that didnt "look" right about him to us kids you know?

I now know that he most likely suffered from a really bad TBI and they just kept him hidden away in the house for the duration of his life and I mean at some point I guess his parents passed away and he ended up in some mental institute somewhere but for all of my childhood he was just that boy that wasnt right after the wreck. I think often about him now and wonder if he had some peace in his life or was he simply one of the tortured souls that got out of bed each morning until he also passed away somewhere and if maybe his life would have turned out different if they knew then what they know now?

Wow this is getting way over my head and I am sure over your alls so thats it for now and Kevin one good point you made is talk and talk some more and I sure can do that cant I? But I dont think we have enough outlets in our life to help and places like this fill that gap if only folks would utilize them dont you think?

Compassion is always greater from those who walk the same path and with that I will sign off until next time.

Thanks for listening and letting me ramble! Its been fun.

Ruth

[Kevin Jackson]

Well, I guess I spent so much time on the psyc couch I became one:) . So to speak.
A lot of times we relate what we hear to something that caught our attention earlyer. So that realation my have been the connection, with me an the book in your mind.
Once you realize the psyc part of the things you do, or have an idea, that maybe the cause, you did this or didn't do. The understanding becomes easyer. For every action theirs a reaction. Think of what made me get angry or made my headache worst. Once you start seeing the cause of things life becomes easyer. Every thing has a trigger. You just have too take the time to find it.
Myself, I go over thing I can remember that happened that day. What emotion I went through, what physical pains I felt an so on. That way I find things that work and don't work. Slow down , theirs no hurry, to do nothing anymore. As the old T SHIRT use to say $@%* happens. Its all in how you deal with it.
I think you know the key to happy living with your aliments. I hear it when you speak. Just open your mind. Things are really simple. People make it hard.
Ya, we are the doctors. What they find out, is because of our trail an erra. I feel that theirs is a differance in a traumatic brain injury(blunt forsce trauma) and a tumer,stork or anuisum. Some of the condistion are the same but the intencety is differant.
You know, thats an intresting tail. Maybe you should look for him. Something to do. Others than wondering if you did this or that. An I think in some way you feel some connection. Think about it !
Well, we'll chat again. Sit back an reflect on your day. Get prospective on emotions psysical and mental.
:cool:

[2knees&ahip]

Good Morning to you as well! You know I think I just might tryt o find out what happened to the guy. You just never know how many folks your life actually touches in a day do we?

I think your probably right about the differences in brain injuries and the responses related to the how and why's. I know for me even though mine was brought on by a physical ailment such as encephalitis it was traumatic in nature in the way that it occured. I was driving to the Doc had been sick for awhile with no answers of what was going on. They didnt seem to know,had test after test and they couldnt figure it out and maybe had they sooner and I had some kind of treatment it wouldnt have turned out like this but it did,back to driving to the Doc and the couldnt recall where I was or why I was going in a town I had spent my entire life in I was lost so to speak. Remembered families number and called my Mother and she came to me and we went right to the hospital and by that time I was semi comatose and stayed that way for the better part of a week waking up a totally different person so traumatic in nature caused by a physiological or pathological factor.

I was so to say never the same again and not the same person who left my house that day. My first memory after pulling over and calling my Mother was sitting in the hospital bathroom floor with a horrible headache and nauseated and the Nurse screaming for help since I had gotten up for the first time since arriving a week earlier and leaving my I.V's by the bedside:rolleyes:

I later years later read the notes from that day and couldnt recall that i was disoriented,combative with staff, and had to be restrianed:eek:

It took a year for the paranoia to slack off and the overall general feeling of helplessness and anxiety. I was in other words a total bundle of nerves and I imagine this had to do with the infection of the spinal and cranial nerves effected by the virus. It was taking a ton of meds to treat this nervousness and another ton to treat the horrible headaches that never let up. Had I known Doc Kevorkian I am sure I would have called him up and that is no joke!

It did get better but no answers came with the recovery. All the Neuro could say for sure was there was residual effects that would never go away completely,in other words he didnt have a clue and his response to most questions was " we dont know for sure" as most folks with this intensity of encephalitis and meningitis didnt live,that was nice to know, that at least I had survived but at what cost right?

At that time I dont think they even made connections of brain injuries to anything related to illness but mostly injury. You had a head injury they expected you to act a certain way right? But an infection in the brain? I am not sure they had any idea.

I got better on the outside and for the most part no one at home ever talked about what was wrong with me. Everyone just adapted to the things that were showing thru and you didnt speak of it what was wrong with Ruth.

My entire life was just looking the other way.

I went on to do normal things like get married,have kids and get work as I had already graduated college prior to the BI and remember I could recall college years just not high school so no problem working. Everyone just adapted to my peculiar ways and worked around them and chalked it up to me being forgetfull or maybe I was born a blonde? I dont know what all the folks I worked with each day thuoght but they never said anything.

Everyone just did things my way and never asked why I did it that way.

My defining moment came one night while I was workign night shift part time at a Nursing facility and I was sitting at the desk and had turned the light down in the halls and the outside door was a few yards away and I recall how bright the lights were out there as it was winter and snowing and it had looked really pretty out in the open field earlier when I had looked out,this time when I looked out I saw something out there and the harder I looked and my mind made the connections it was railing aginst I was a patient out there in the snow and cold dead of winter night in only a gown and I knew right then and right there my hearing loss that had been progressive in nature since my BI had almost cost someone their life! I didnt hear her alarm on the door trigger when she went out and I could have killed her!

It was time to go home and give up the only thing that had kept me grounded to the real world all these years. I never worked another night or day for that matter. She was OK and had only beed out there for a few moments but it could have turned out much different for both of us and I knew myself and others had overlooked my peculairities way too long now and it was time to be honest about how bad my hearing had gotten.

I didnt hear alarms obviously and phones ringing anymore,smoke alarms,lawn mowers,cars running,or any noise of this level and instensity. At home we always just adapted,use the close caption on the television,took the batteries out of the smoke alarms,bad idea I know,the kids would answer for me if I didnt hear what someone said to me,I avoided the phone and hung up if I couldnt understand the caller and say something like "wrong number" and wait for someone else to answer if it rang again.

As I look back I know now everyone in my life covered for me and just never mentioned it.

I eventually went for a new audiologist visit and the first one for more then 15 years and with the paper in front of me had to admit that losses with numbers like 47% in one ear and 52 in the other was not good and I wasnt hearing half of anything.

No more birds,crickets,water running,all of these sounds were lost to me and had been missing for along time and it was now deal or no deal so I dealt.

I admit early on in the game if I get a voice at the other end of the phone that I dont understand or when i am in a setting that requires me to answer questions that you need to look at me in order for me to hear you. The truth was out now and I had to learn to live with it.

I have done well and even for somone who cant be helped with hearing aids I have gotten very good at lip reading thru the years of denial and as long as your facing me I do pretty well all in all and the caption allows me to watch T.V. and its a good thing I love to read!

Deaf at 50! Not totally but as close as one can get but I am glad I have the memory of all those night sounds and the laughter of my kids and It makes me smile to remember those little things we take for granted.

Take care of yourself!

Ruth

[Kevin Jackson]

I'm willing to bet,the thought of locating that fellow intreages you a little. And yes, you never know how something or someone. Leaves some lasting residue on someones mind. You may even find something of intrest, not excepting too.
In the begaining, I use to have what I thought where nightmares. But I came to find out later. I was sleep walking. See my trauma happened one afternoon, about dusk dark. I was mugged comming out of a neiborhood store. Just so happened I didn't even have my dog, and was'nt on mental guard. In a nut shell, being a vet. Revenge was the only thing in site(minds eye). So I think, in some of the psycological dementra, I was out looking for that revenge. I could never figure out where the stickerbraers and weeds on my clothes, or my pants legs damp. It took years to figure that one out. So I can relate. Thats the intencity of the T B I in my case. I think a lot of who we are before the T B I , plays a roll in our healing and shows emotionally .
You know , in a support group I was in some years ago. Their was this lady, who wore dark glasses, even at night. She went on to say, that she didn't care what people thought of here. When out at restrants and stuff. Late on , some month later she said something about her daughter as ways being arout her. When her daughter made a commit one night. Thsat she explained to her boy freind that was comming over the little quirks her mom may show. That when I realisesed that in a lot of cases her daughter probobly ran block so to speak of telling those around her mom or come in contact, what they may expect. Whitch could have been the case on your side. If not ,you sure was lucky. You may really be blessed and just don't know it.
I was watching the Today show or something. And they where speaking of playing back recordings made from your on brain waves. It aids in helping with depression,insomnia, anxity,panic attacks an so of. Have you heard of this. I have found some realive using a ALPHASTIM100. gOOOD FOR HEADACHES too as well of other psycic delimas.
Will chat soon
;)