[July63]

Hi, I'm Jeffrey and I am kind of afraid to post as I am afraid to be labeled.

I may be long winded, but that is just because I am focused on sharing and because I feel so alone in NYC.

I have severe memory issues, truth is, I may not remember writing this tomorrow. Though I don't remember, I had a brain concussion in 1984 while in the military in West Berlin. I only found out about it when I received my military medical records about 3 months ago. It is noted that I was knocked out for over 5 minutes. I was also mugged, but I cannot remember the decade it happened in, I guess it was the 1990s'.

Thoughout the years I was diagnosised with everything from bipolar to major depression. I am far more stoic than depressed, more indifferent.

This year, my doctor diagnosised with with a TBI (before I got my military records), and I am followed by a PM&R TBI specialist. I am currently on 10 medications, including Aricept and Provigual.

I do not remember my past. Yes, some times things pop up and I go, "wow, that is cool, I remember that" but for most part, I am blank. I forget what my mother looked like on mother's day.

At the job, I was an ADPAC for a radiology department until 2 years ago where, if anyone knows government pay grades, I requested a pay drop from a GS-11 to a GS-7. I have always been 'smart', I have written two books in the past, but something kicked in a couple years ago where I couldn't hide the memory problem, and now I lose days.

I have had many MRIs and CTs which are unremarkable (I resent that), but I did do neuropsych testing which presented itself to lead to a TBI.

I ask my doctor every time I see him if it could be altzhemiers instead, but they say the reason of my personalility change, my memory and congitive problems, are because of the head injuries.

I see a psychologist every week, a psychiatrist every 2 weeks, a PM&R doctor every 3-4 weeks, so I am well taken care of.

My life is going to work, going home, hiding from the world, rinse, repeat.

I have a service dog (a psychiatric trained dog, a toy poodle who is laying on my thigh at this moment: Chloe) and was offered a two-year trained Lab. I turned down the Lab but they said I could always have one if things get worse.

Problem is, I look normal, but I have so many problems. I am able to fake my way through work, basically excel spreadsheets which at one time I was an expert at.

My bosses knows, and I work for the Chief of Staff at the hospital.

I guess my problem is I am so lonely, I know that some time soon I will just be looking at a wall and enjoying it. Today at work, I was just staring at my monitor and all I thought was, "I miss my puppy"

Have I lost it? I know I can type, like I said, the IQ is still there, but what do I do?

[Mark in Idaho]

Jeffrey,

Sorry for your predicament and the reason you have come to NT. Believe me, it is the right place for you.

Your story sounds a lot like mine. My first concussion was in 1965. Followed by many minor head impacts that never were symptomatic of a concussion. Then, in 1995, I did suffer a moderate concussion that required that I rest and recover for about 15 minutes before I could return to my task. Another minor concussion in 1999 from an assault and then, in 2001, I made a bad step off a curb and jarred my body from pelvis to head.

Suddenly, my life changed. My prior skills at recovering from a head bump were meaningless. My memory functions were suddenly drastically damaged.

Currently, I have very poor visual and auditory memory (bottom 5 to 12% of population) I cannot remember past time periods. I remember the events but do not remember when they happened. Chronological order is non-existent in my brain.

My processing speed is at the 10% level so I am easily overwhelmed by stimuli. I have to be very careful about entering a over-stimulating environment (the mall, a noisy restaurant, etc.)

As you are, I still am highly intelligent. It allows me to appear to be normal, until one of my dysfunctions become evident. I used to build computers from parts, including all of the specific settings needed to make them function. Now, It is all I can do to just keep them running. Trying to follow complicated directions is problematic, even disabling, requiring a prolonged period of recovery.

So, yes, I know what you are going through. I am only on two meds plus a regimen of high potency/dosage vitamins and supplements. The supplements I take make a huge difference in my function.

I understand the stoic characteristic you mention. Sometimes, for me, it becomes apathy too.

One thing I have learned is to not hide from my condition. If others know just enough, they are usually very accommodating. My biggest problems are receiving information. Once I have received it and logged it into some sense of understanding, I can use it. Usually, it takes many repetitions for me to keep the information in memory.

It appears that you have already developed some accommodations. Your stoic style is one. You have likely accepted your condition to some extent. I don't know if you have developed any work-arounds to deal with your dysfunctions. I have many. Without them, I would not be very functional. With them, I am high functioning.

You state that you may not remember writing your post tomorrow. I need the text on the screen to remember what I am writing. When I reread my post before submitting it, I may find that I have repeated myself.

I am concerned about whether you are being over-medicated versus providing your brain with better nutrition so that you can function without some of the meds. Your stoic style may also be a result of your meds. Some meds tend to flatten out emotion and response.

My Neuro-psych reports have diagnosed me as schizoid personality disorder (lacking in need or desire or ability for personal contacts). I think this is a self protection mechanism that is learned and reinforced by the physiological damage. You may also have this characteristic.

Have you connected with any TBI support groups? This is a good place to connect with others. Your PM&R physician likely has other patients who participate in one. They are very beneficial. Most are more directed at people who were comatose and needed extensive rehab and still do not have full motor control. My PCS with high function allows me to understand them from the inside, if you know what I mean. You likely have lots to contribute to a support group.

You have not told us much about yourself beside your memory issues. Feel free and safe to tell us about your struggles. You are with friends.

Hope this helps.

My best to you.

[vini]

hi jeff

I was in west Berlin in 1984 at new year drinking muldwine on the roof of the American military hospital, I was there visiting a friend. my very distant memory has improved, like I can now recall things when I was 3 or 4, that I could not recall before my injury . but not at will, they just pop into my head, but since my injury I live in the now,

you are not alone, try to get involved in something,anything, this group is a good place to start, and all are most welcome

[July63]

Hi everyone. Thanks for the posts. vini, I am sure we were both in West Berlin in 1984; strange world.

Mike, I will have to say you seem a lot more outgoing than I am (and that is a good thing). I hide from the world because I expect bad people to react badly, this is one way my personality changed. Before the head injury I had, I was a military policeman and a lot more out going.

I get my treatment at the VA medical center and the problem with that is I do not see others with my problems in my age group so it is hard to relate.

Tonight I have a sleep study at NYU, I already am worrying about my puppy being alone at day.

Yesterday I was having trouble speaking as I couldn't get the right words out of my mouth? Does that happen to anyone. Then I panic'ed and emailed my boss and vented to him, I am sure he didn't want to hear it but he is really understanding.

I filed a claim with the VA and I am worried what is going to happen; if they give me a high disability % then I will not be allowed to work. As a shut-in, that could be a bad thing. The positive would be my medical and dental coverage will be taken care of for life and I will get a check to survive. If they low ball my disability then what happens if I get worse? I mean it takes so many medications just for me to function as I am now, and I am starting to forget things I did yesterday, however, I do not forget everything.

That brings up a question? How can I forget so much, but then remmeber something random. Example, I have no clue what I ate for lunch 2 days ago, HOWEVER, I know Lucille Ball was on the I Love Lucy show. Both are memory. Another example, I do not remember any of my time in the military and in West Berlin, HOWEVER I know the wall was up in Berlin when I was there.

I wish someone could explain this to me, but I don't have a lot of hope. If you can explain this somehow, please go slow, my reading ability is a lot worse than I typing ability.

Well, thanks everyone for your time and I hope to see a reply soon.

Jeffrey

[Mark in Idaho]

Jeffrey,

Memory has many different functions. There is long term memory: Lucille ball and the I Love Lucy Show. Short Term or Intermediate memory: what you had for breakfast. And Immediate memory, what I just typed or someone just said.

Long term memory is well established and hard to damage. In fact, as other memory functions decline, often long term memories become more readily available. Long term muscle memory helps people do movements when their cognitive functions may be absent.

Of the Short and Immediate Term memory functions, you have an auditory and visual part. Immediate and Short term memory are combined into working memory. This combination is the most frequently injured in brain injuries, especially concussion or diffuse axonal injuries.

One of the ways working memory breaks down is by the central switchboard of the brain failing to work properly. The part of the brain that acts like a central switchboard has to gate information to the proper memory and processing areas. The information may not be gated to the proper channels or may be allowed to flow unrestricted with no 'speed control' or 'filtering' of extraneous information.

The failure in the gating mechanism is what makes many PCS subjects easily overloaded by stimuli. For example, my neuro says that in my brain, the incoming processing is working at 25% of normal power. My frontal lobes work very fast Up to 10 times faster than a normal brain. This creates a lack of synchronicity between the two areas. To make matters worse, the gating function is all messed up. It results in a "can't get there from here" problem. I can present information very well but I can not intake information very well.

More on this later if you have more questions.

My best to you.

[July63]

Originally Posted by Mark in Idaho

Jeffrey,

Memory has many different functions. There is long term memory: Lucille ball and the I Love Lucy Show. Short Term or Intermediate memory: what you had for breakfast. And Immediate memory, what I just typed or someone just said.

Long term memory is well established and hard to damage. In fact, as other memory functions decline, often long term memories become more readily available. Long term muscle memory helps people do movements when their cognitive functions may be absent.

Of the Short and Immediate Term memory functions, you have an auditory and visual part. Immediate and Short term memory are combined into working memory. This combination is the most frequently injured in brain injuries, especially concussion or diffuse axonal injuries.

One of the ways working memory breaks down is by the central switchboard of the brain failing to work properly. The part of the brain that acts like a central switchboard has to gate information to the proper memory and processing areas. The information may not be gated to the proper channels or may be allowed to flow unrestricted with no 'speed control' or 'filtering' of extraneous information.

The failure in the gating mechanism is what makes many PCS subjects easily overloaded by stimuli. For example, my neuro says that in my brain, the incoming processing is working at 25% of normal power. My frontal lobes work very fast Up to 10 times faster than a normal brain. This creates a lack of synchronicity between the two areas. To make matters worse, the gating function is all messed up. It results in a "can't get there from here" problem. I can present information very well but I can not intake information very well.

More on this later if you have more questions.

My best to you.

I guess I do have some more questions? My long-term memory is my biggest problem, I went to NYU but do not remember going to classes, but I have an id card with my picture on it from NYU. I do not remember being in the army, but I have pictures of me in the Army AIT yearbook.

Those are long term memory problems. Though to bring I Love Lucy back, I cannot recall anything from the show, but my mind knows it existed.

I hope I am clear, I have a problem keeping on subjuct.

Question is: How can some long term memory be gone but not everything?

I know what my dad looks like but did know who my mom was on mother's day (granted i haven't seen her in a long time before, but still, its my mom).

And since it is getting worse, is there going to be a time soon some day when I will be entertained by just staring at a wall (my worse fear)?

Again, thanks for you help, Mark. I hope someone has some insight.

Jeffrey

[Mark in Idaho]

Jeffrey,

It sounds like some of your long term memory has been lost due to damage. This is called retrograde amnesia. It can be hit and miss, only effecting some long term memories. These lost memories may just pop-up at the oddest times. The ability to index and recall is lost but not always the actual memory.

There is a special part of the brain that connects visual images with names. This is likely damaged. I can recognize a person as familiar but struggle with the person's name.

Although I do not spend a lot of time in public where I see these forgotten persons, I still do exercise this skill. I watch TV and try to put a name to faces. Sometimes, it may be an actor in a commercial or seeing an actor guest star that is familiar from a previous show or movie.

I use the internet to identify the person then try to recall the name when I see the person again. Between wiki and imdb.com, I can usually find anybody who has very appeared on screen. This has been a useful exercise for my face recall. I still may pause when I see the person but I can sort through my memory more successfully.

Memory is like a muscle. It needs to be exercised. You may not be able to fix the damage but you will be able to learn other ways to remember things.

You would benefit from some memory status tests to track whether your memory is getting worse. Have you had a neuro-psychological assessment? It is the most thorough way of diagnosing memory problems.

Are your ten medications being prescribed by the same doctor? They may be negatively effecting your memory. You will benefit from a sit down with a good pharmacist to review your medications. The pharmacist knows more about drug interactions and side effects that the doctors in most cases.

The hardest part of brain injury is when a person with high intelligence suffers cognitive and memory dysfunctions. We are so dependent on our memory for our personal identity as an intelligent person that when we lose memory functions, we start to think we have become raving idiots. That is definitely not the cane. There are still plenty of ways to express ourselves.

So, please lighten up on yourself. You still have a lot going for you. You just need to relax and start finding ways to work-around and accommodate your dysfunctions better. There is still plenty of life ahead for you. You just need to look for it in different places.

My best to you.

[July63]

Originally Posted by Mark in Idaho

Jeffrey,

It sounds like some of your long term memory has been lost due to damage. This is called retrograde amnesia. It can be hit and miss, only effecting some long term memories. These lost memories may just pop-up at the oddest times. The ability to index and recall is lost but not always the actual memory.

There is a special part of the brain that connects visual images with names. This is likely damaged. I can recognize a person as familiar but struggle with the person's name.

Although I do not spend a lot of time in public where I see these forgotten persons, I still do exercise this skill. I watch TV and try to put a name to faces. Sometimes, it may be an actor in a commercial or seeing an actor guest star that is familiar from a previous show or movie.

I use the internet to identify the person then try to recall the name when I see the person again. Between wiki and imdb.com, I can usually find anybody who has very appeared on screen. This has been a useful exercise for my face recall. I still may pause when I see the person but I can sort through my memory more successfully.

Memory is like a muscle. It needs to be exercised. You may not be able to fix the damage but you will be able to learn other ways to remember things.

You would benefit from some memory status tests to track whether your memory is getting worse. Have you had a neuro-psychological assessment? It is the most thorough way of diagnosing memory problems.

Are your ten medications being prescribed by the same doctor? They may be negatively effecting your memory. You will benefit from a sit down with a good pharmacist to review your medications. The pharmacist knows more about drug interactions and side effects that the doctors in most cases.

The hardest part of brain injury is when a person with high intelligence suffers cognitive and memory dysfunctions. We are so dependent on our memory for our personal identity as an intelligent person that when we lose memory functions, we start to think we have become raving idiots. That is definitely not the cane. There are still plenty of ways to express ourselves.

So, please lighten up on yourself. You still have a lot going for you. You just need to relax and start finding ways to work-around and accommodate your dysfunctions better. There is still plenty of life ahead for you. You just need to look for it in different places.

My best to you.

OMG, I just typed for 30 minutes and then I was asked to log in again and everything was lost

Guess to be short now.

I had neuropsych testing and they suggested the damage was in like with a TBI that my medical records show.

Concerning medication, 7 are TBI related meds (to include dealing with the depression and paranoia from the TBI) and 3 are for other health reasons. I have a group of three doctors, a lead psychiatrist, a physiatrist who is a TBI specialist out of Yale/NYU (she travels weekly) and a psychologist. I see the psysiatrist every 4 weeks, the physiatrist every 3 weeks and the psychologist every week.

This retrograde amnesia seems like it leads to dementia and that is scary.

Some of the meds may have memory issues but they see it as a need is greater than the induvidual drug. The provigul and aricept are the smart drugs which are to help me with my memory to counter. I get counseled by a Dr of pharmacy every time a med is added.

Now I am lost again to my point, ugh

I start seeing an occupational therapist (Roxanne) tuesday who should deal with the memory staus tests but there are a couple problems. One problem is I find her attractive so I may put on my cool, normal Jeffrey look. Second, how can they measure past memory?

Well, lately I have been indifferent, and yes, staring at a wall I can get lost inside my head and the fear is I am enjoying it. I just want my puppy to lay on my leg.

Does TBI turn into dementia? Mark, I read and hook on to all your kind words, what is going to happen when I have no other questions to ask. I am now not the smartest apple in the tree and I am really sensitive. I have enjoyed the forums, but what happens to me when no one cares anymore or I have nothing else to say.

I think my TBI really turned me into a loser. People can say I have a lot going for me, but I don't see it that way, I see myself only getting worse, my doctors all prepare me for it, the drugs I am on suggest it.

I got lost again

Well, I enjoy reading all posts, I actually have been logging into the forums a lot to see if someone replies or if I can reply to someone.

Well, I am afriad to post, and now I am afraid my post will die; does that make any sense.

I thank all who read this forum, Jeffrey

[Mark in Idaho]

I am very confused. I have never heard of drugs specifically for TBI. There are various meds for individual neurological symptoms that may also have no connection to a TBI. Actually, it sounds more like you have suffered an mTBI (mild TBI).

Aricept has not been approved for treatment of mTBI or TBI. The studies to see if it helps have been discouraging. Aricept works as a reversible inhibitor of the enzyme acetylcholinesterase. Acetylcholinesterase processes can malfunction after a TBI.

The big question is this. Most studies show that Aricept loses it effectiveness after 18 months or so. Does it further damage this process? Nobody knows yet.

Can the brain be helped with these enzymes by non-drug methods. There are many who have strong evidence to support that it can.

TBI does not 'turn' into dementia. Untreated symptoms from TBI can cause further damage. Insomnia, apnea, high blood pressure/anxiety/stress all can change the long term condition of the brain. My father developed and died from long term effects of Central Sleep Apnea. His non-Alzheimer's Dementia lasted over 20 years and slowly progressed until it appeared that he had Alzheimer's Disease.

Studies show that mTBI/PCS can lead to a 10 fold increase in Alzheimer's Disease. The problem with this statistic is that there is not effor made to post mortem examine those persons to see if they actually had AD or instead a deterioration without the AD markers. Multiple Impact Syndrome as seen in professional football players is a progressive condition in many.

There is also plenty of information that indicates that inactivity will speed up the progression of dementias.

There are many who are concerned that many psychotropic drugs (anti-depressants, anti-anxiety drugs, etc.) can contribute to this decline.

Unfortunately, the Big Pharma money pushes their patented Brand name drugs as the solution for most maladies, even when there is weak evidence to back up their claims.

So, the real jury is definitely still out. We need much more unbiased research to find the true answers. Just because the drug companies back using drugs does not make it the best approach. In case you don't know, we have the best FDA money can 'buy.' All drug approval comes through the FDA.

Regarding concern about progressive dementia. I watched my father decline for those 20 years. He was a very functional person until the last 18 months. Then, his real decline started. He was still going to the health club (gym) and doing a 45 minute workout three months before he passed. He was non-ambulatory for only the last 3 to 4 weeks.

His saving action was recognizing his decline, accepting it, and establishing many work-arounds and accommodations so he could live a full life. He snow skied 40 or more days per season until the last two years.

We all have a very long way to go.

btw, I watched my father decline in comparison to my decline. I am ten years post 'life changing' injury. My current condition is like my father's condition was 20 years before he died.

Also, almost all Pharmacists are Pharm D's now. Master's in Pharmacy became inadequate decades ago. I doubt if any M Pharm are still active.

So, you have a job ahead. You need to make an effort to connect with others and life in general. This is how you will stay functional. get out of the house. Find something to do that is stimulating.

I am repairing cars from the 1990's and reselling them to cash strapped young drivers. I don't make much money for the hours I put in but it gets me off my duff and engaged in life.

Studying mTBI for the past ten years has also allowed me to connect with others like here on NT.

My participation in a brain injury support group is also very beneficial. I see others in much worse condition doing things that were supposed to be impossible. Meet people like these and you will likely be inspired.

My best to you.

[July63]

Hi Mark, thanks for your words.

My PM&R doctor has told me that Aricept is now being used with TBI patients and it has shown improvement; I hope you are wrong about the 18 month span on the drug. I don't always explain myself well so I can see how you were confused. Most of my drugs are to counter the problems of having a TBI (depression, paranoia, sleep problems, wakefulness). Hope this is clearer.

I am worried about getting worse, to a point that is mirrors dementia. From your mouth to Gods ears if I have a mTBI, the doctors don't break it down like that to me. Alzheimers is very scary also.

I heard about the post-mortem studies of football players and that their personalilities change through their lifes and you can't see the damage until they are dead. Is this true?

The reason I wrote Dr. of pharmacy was because I couldn't figure out how to spell (cut/paste) Pharmacist at the time. I know it looks simple; Sorry

I guess I am afraid to mix with others because I don't want people to find out something is wrong with me. I don't seem to be that strong, I know it is a cop-out but it still doesn't seem, knowing that, to make it better.

Sorry about your father, he sounded like a strong man.

Could anyone reconmend a brain injury support group in the NYC area?

Again, thanks for the reply,

Jeffrey