Kind of afraid to post
 

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?

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.

hi jeff
 

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

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

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

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

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.

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

The football players showed symptoms but the study was based on a pathologist in the morgue in Boston who started looking into the brains of football players who died prematurely. He found their brains to be seriously atrophied. He coined the term Chronic Traumatic Encephalopathy. (CTE)

A CT or MRI can image this problem by looking at the size of the brain compared to the size of the skull. This same atrophy shows up with Alzheimer's at later stages.

If you find a support group to join, you will notice many people with far more disabling conditions. They accomplish much in life with only a minimum of support.

I know people with entire lobes of their brain missing who live relatively full lives. I knwo a woman who administers a residential home for others with more severe brain injuries.

It all depends on your view of life. Many think their glass is half empty. I say they have a glass that is too big. There is lots to life available without needing complete memory of cognitive functions.

Don't worry about future decline. Get involved in keeping your brain active now. Get a nutritional regimen started to feed your brain the foods it needs to operate at as high a level as possible. Take control of your life.

I prefer to not give my life over to the doctors. They do not understand how it is to be inside a brain injured body. I only met one doctor who had a sense of what was going on in my brain. He was impressed with how well I was doing compared to the level of dysfunction he could see on the diagnostic tests.

Establish routines of activities for your free time. These activities may be repetitive but they will put you in contact with others. My father walked his Cock-a-Poo Joey every day. He had a route he took. After he passed, my mother started taking Joey for the same walk and people would ask about my dad. He had made friends just walking his dog.

The research says that relationship ties are the most important in slowing the decline of dementia, etc.

Don't be afraid to tell people you have a brain injury. Just don't wine about it. I state matter-of-factly that I can't do such and such (remember peoples names or drive in congested traffic). It is not an excuse or complaint but rather a statement of condition.

If people seem interested, I explain a bit, like: If I attempt to drive and come to a stop sign with uncontrolled traffic crossing. I can look to the left and see the oncoming cars. Then, I look to the right and see the oncoming cars. Problems is that I have already forgotten what I JUST saw to the left. They begin to understand my visual memory difficulties.

I have developed a work-around for this scenario. When I see no cars to the left, I convert the visual image to a verbal image by repeating to my self, 'No cars to the left.' I may have to wait until one direction has no cars coming but with this work-around I can drive occasionally. I used to have to avoid crossing two lanes of traffic. Lots of right turns then left turns.

There is a book of these tricks. 365 Tips and Techniques is written by an MD who suffered a severe concussion in Colorado. Check out http://www.amazon.com/Brain-Injury-S...7335943&sr=1-3

From you list of symptoms being treated with meds, it sounds like meds regulate your life. This is scary to me. I have sleep disciplines I need to follow to sleep properly. I only take a single med (Neurontin, generic as gabapentin) to help my body stop twitching so I can sleep. I tried using caffeine to help me wake up but my smart doctor nixed that.

There are some drugs that can cause paranoia. I hope you are not taking any of them. Drugs are not a science but rather a "Try this and tell me what happens" trial and error process. Some are very powerful at impacting the mind. I have had a few drugs recommended but I declined due to my research into the side effects, etc.

There is only a very limited understanding of method of action of most drugs. SSRI's are modeled after the active ingredient in St John's Wort. They do not understand how it works exactly. They just know that it provides benefits that overcome the side effects for some people. They have to tweak and tweak the clinical trials to get enough that show the worth of the drugs.

Prozac took a hundred or so clinical trials to get the half dozen that lead to its approval. There were far more trials that showed how problematic it is. Most psychotropic drugs have this same clinical trial history.

Seroquel has been just as controversial. In some people, it works wonders. In others, it is a nightmare.

Benzidiazapines are a problematic group of drugs. Research is beginning to show long term damage from benzos. I was on a benzo (Klonopin) for about a year. Glad to get off it. Doctor switched me to Neurontin, a much safer drug.

You sound like you can understand the issues with drugs. Have you researched any of the drugs you are on?

If you want, list them and I will look them up. At least you will know what their pros and cons are.

Regarding mixing with others. I don't think it is much different that telling someone you have a prosthetic leg and have to go slow up a flight of stairs. Your brain injury symptoms are objective points. If you avoid making them subjective, others will usually be very understanding. Like: "I have a brain injury that makes it difficult to remember faces. I can even struggle to put a name to faces I have known for years."

I have to pause to connect names to faces. People are very tolerant as long as you don't wine about your struggles. It can even help if you joke about your struggle. Like, "Slow down, this wooden leg does not like stairs."

Learning to be open about your struggles is easiest in a support group. Learn to be open with friendlies before trying it in the wild unknown world. You have enough outgoing attitude when you mention putting on the cool Jeffrey to meet Roxanne. Therapists are also a good place to talk about being open with your struggles.

Your problem is the same as every closed head injury person's. We are the invisible wounded. Our injury is hidden. If we don't expose our injury, others will wonder what the problem is. If they understand the cause of the problem, they accommodate us very well.

So, you have a choice to make. Will you expose yourself so people will let you into their lives, or will you hide and be left out.

It is a tough decision but a worthwhile one.

My best to you.

Mark, I have to say you are a great writer; every skill I ever had at writing is lost.

Does atrophy mean shrunken? Wouldn't they be able to see that on a CT or an MR? I thought they found something in football players that was unseen by imaging. I guess the football players maybe didn't go for help.

I have thought more about support groups, but it would seem I am labeling myself. I know there are a lot of people worse off than I am. I mean, I can laugh off some of my memory problems, like today at work I thought the month was November and was putting November in all my data pulls. Then I found a note I wrote where I was supposed to increase my Modafinal; something I haven't been doing.

It is possible I just feel sorry for myself. When you wrote about the glass as full or empty, I really don't have an answer as to how I view it. I will try not to worry about future decline, however I am always in some medical situation where I am asked how I am doing. I don't even know how to answer that, I tell the doctors I am not stressed, just indifferent. Though to be honest, I don't remember when I had a really good laugh with other people.

I know my doctors do care about me, but you are probably right that they do not know what is inside our heads. Problem is, I cannot always describe what is in my head either.

I have been working on a couple routines for my free time, but my work day and travel is a lot; catching the 630am bus, getting home at 630pm. From there I watch TMZ and then the G4 network till 8pm, after 8pm I am on the internet till I take meds and go to bed, rinse, and repeat. I don't even have to walk my dog as she is trained to be a total indoor dog. When I do walk my dog, I am very protective, but I do say 'hello' to people, problem again is, next time I see the person it is hit or miss if I remember them. That part of me I hate cause I feel like a fool (and I know it isn't my fault)

I would love to be in a relationship, but I am afraid to meet people because of the problems, I wouldn't know how to explain myself. I am afraid, as many people probably are. I may whine a little to my close friends, but at times, I hate to say it, whining feels good.

Are you driving now, Mark? I let my license expire.

I looked at the book you posted; it looks like a good read, quick chapters. I read the back of the book and the MD who wrote it isn't practicing medicine anymore, she must have lost a lot.

The meds do regulate my life, today I have this medicine-like taste in my mouth. Lately I have tried to sleep without medicine and I am up all night long just thinking.

My doctors have tried a ton of medicines on me, one even landed me in the hospital with an allergic reaction; and the funny story on that was I had a known allergy to the med, and the doctor I had at the time didn't take the time to read my medical records and see that so she gave it to me again; of course I didn't remember taking the med in the past so I took it; bam, to the hospital ER.

You do know a lot about medications, Mark. I don't want to post all my medications in the forums as it isn't private and anyone on the internet can read this. I can list a couple.

The paranoia medication is called Perphenazine. I take Modafinal and Donepezil. For depression I take Venlafaxine HCL. The other 3 are sleep meds (including Zollpidem Tartrate: Ambein) and then 3 other meds for other medical problems. What does anyone know about the meds I take, has anyone had any experience on the medications I take, I would be interested in some feedback. I may even create a post about the Modafinal and Donepezil.

I mix pretty well with others, it is just I have trouble owning up to my memory problems and sometimes loud people really cause me anxiety (I was never like this growing up and was probably loud myself while in the military)

I would love to know of a support group in the NYC area; one recommended and with kind people. I do talk weekly to an physiologist, it seems I turn those moments though into the 'why me - whine and cheese feasts'

I guess I can say it here, it really sucks being someone with a head injury, no one believes us, we try to act as 'normal' as everyone else, but inside we are hurting. Yes, people are accommodating, but I wish none of this ever happened (see, I am whining)

Everything takes time, I would love to get out and meet others, however, where? NYC is the loneliest big city, everyone is already so guarded.

Everyone, thanks for taking time to read this, maybe some of you feel as I do, maybe not, but I do wonder if my problems are common or not.

Again, thanks for taking the time, Jeffrey

Jeffrey,

You should have access to Private Message to me. If there is something you want to say but not in public, say it by a PM. Click on my name at the upper left and you will see a drop down box with Send a private message (PM)

I am looking up your meds. You have a very strong mix of meds. Have you tried weaning off any of them? You might ask about trying to wean off everything but the Venlafaxine. It can be tough to wean off but it also may be the one that is doing the most good. Your other meds are likely to overcome the side-effects of your other meds.

The overlap of side effects of the P, M, D, and Z is almost item for item.

I would also suggest less meetings with the doctors and such. You are being constantly reminded of your struggles. It does not appear that they or the meds are helping you cope.

When you attempt to meet people, don't be afraid to mention in passing that you have struggles due to a brain injury. You can say that sometimes you make make strange comments or faces (I tend to grimace when I get confused) Your comment should be more to ask that they try to disregard the oddities.

When you walk your dog, don't worry about remembering faces. Just be cordial and greet them with a smile and hello. You don't even need to explain your brain injury when you say you have a difficulty putting a name to a face. Just say " I'm sorry. I forgot your name again." Being straight forward is well received compared to acting like you know their name but are fumbling.

People appreciate it when you ask them their name. It shows you have an interest in knowing who THEY are.

Drop the negativity about labels. Everyone can be labeled. You are who you are regardless of labels. I'd rather be remembered as the odd ball than not be remembered at all.

A person in a wheel chair is labeled. Some think they are disabled. My wheel chair bound friend would deny the label of disabled. She only wants the label just enough to get a parking spot where she can have room to get her wheel chair out of the car. Her wheel chair is just an inconvenience to her, and hardly that.

There is a saying. "If we only knew how little others think about us, we would stop worrying about what they are thinking about us."

Tall, short, fat, skinny, blond, brunette, etc mean nothing compared to the way you greet someone with a smile.

Regarding your routines. I would suggest you stop watching TMZ. It is all about the fake appearance and life of others. It can twist your perception of life.

Real people do not live TMZ lives.

Keep saying hello with a smile. Eventually, you will find your confidence improves. Casual relationships like passing routinely on the sidewalk are good. If there is an opportunity to help someone, offer to do so. Be casual and willing to back away from those who are anti-social or fearful of casual contacts. It is rarely a comment about you.

Stop worrying about the future. You have no control over it. All you can do is react or accept the present. People in a brain injury support group are there to connect with others. Most take time to connect. It is the nature of a brain injury. You can sit and observe or become an active participant. You may be active at one meeting but reserved the next time. They will know what you mean when you say you are having or had a bad day.

Yes, I still drive but only in specific conditions. I do not drive during congested traffic hours. I do not drive if I have any question about my cognitive strength. I do not drive highways. 35 to 40 is about my limit for speed. My brain does not process faster speeds well. I cannot drive cushy cars. My brain forgets I am driving. I need a car that gives me feedback so I stay focused on driving.

I live is a rural to suburban area. Mostly just two lane roads. The tallest building in town is only four stories. Definitely not a congested area. People complain about a ten mile commute taking 20 minutes.

I moved here because I was getting overloaded with the congestion and chaos in San Jose, California.

A though for you. The lower the density of population, the more tolerant people are. If you get a good disability rating, you might consider living in a quieter area. It can make a big difference in your ability to enjoy life.

Here in Idaho, we have miles of foot paths for walks, with or without pets. Many communities are much more comfortable for those with struggles than New York City.

There are fabulous VA Hospitals all over the country. We have a top rated one here in Boise.

Maybe a change of scenery is what you need.

My father-in-law (FIL) did great when he moved. He had dementia due to Alzheimer's. He was frustrated in his home town because he knew he should know the people he met but his memory was gone. When he and MIL moved away, everything was new. No feelings of forgetfulness. He also met a community of retired veterans that were very welcoming.

Try to think positively about your future. Even with declining health, there are positive ideas. Finding a home where you can grow old. Meeting others in a similar situation. If you fail to plan, nothing will happen that you like.

Try making notes or lists with questions about your future. Then try to answer them with opportunities that exist.

What are your skills? What are your weaknesses? How can you plan a life that utilizes your skills and minimizes your weaknesses?

If we don't plan our futures, someone else will. One way or the other.

My best to you.

I agree with a lot of what you say, Mark. The change of location, though a big step, will probably be needed some day. Its all about money and being able to make a living. In the future, my situation may change.

I have brought up taking less medication with the doctors but they assure me it is what is needed, and I am not a very strong person to fight with them (read: weak)

You know how we have the 'hidden' injury. These forums are full of people with visual handicaps (missing limbs), and many even bedridden. Is there a proper etiquette?

Today I go to the occupational therepist for the first time, I will tell everyone how it goes.

On a side note, I made pasta in the microwave last night. I didn't remember till I was on the bus this morning, so guess where the pasta is... corrrect, still in the microwave. I hope one day I do not burn my apartment building down; I have already stopped cooking in the oven. :eek:

Jeffrey,

I have a trick for using the stove. I always set the timer for five minutes. It will beep until it is turned off. This way, I am called back to the stove to find the task that I was doing. The timer is not used for timing the cooking, just to call me back to the stove.

When you use the microwave, try leaving a plate or bowl on the counter ready for the pasta or such. This plate or bowl can cue you to the microwave.

Fortunately, forgetting something in a microwave is just a waste of food, not a risk to the building.

I use visual cues all the time. I'll put something near the door to remind me of an outdoor task. Post it notes are frequently used by those of us with memory difficulties. I have a white board on the refrigerator for reminders.

My wife uses it to remind me to comb my hair or shave.

I know what it is like to forget in the kitchen. I can struggle getting a bowl of cereal ready to eat. I put fruit on my cereal. I need a knife to cut the fruit. The fruit. A bowl for the cereal. The cereal. A spoon. Milk. I will walk back and forth between the counter and pantry or refrigerator trying to remember all of the various parts of my task. I just don't let it get to me. It is me. Being upset with who I am is of no benefit.

I am so forgetful that I keep my cell phone on a lanyard around my neck. I kept losing important things, including my cell phone, so I started the lanyard thing and stopped carrying so many things in my pockets.

You just gotta laugh at some of the happenings.

Of all the things I've lost, I miss my mind the most. LOL

Hi everyone. I have some admission to make.... and it may not be the most correct reply, but I forgot about the forums, then just moments ago it popped in my head. I hope everyone is good, sorry for being away for a week.

:(

Just when I think I am getting better on the aricept, this happens, it has gotten to me, makes me sad.

I don't know if anyone knows how I feel.

Welcome back,

Maybe you are putting too much expectation on the Aricept. It is more effective at slowing decline than causing a healing effect. At least this is what I have read and experienced with my dad.

My best to you.

You could totally be right. During the last week it have been hard for me to go to work, my mood has been rotten, though I thought 'in my head' that the aricept is working. I'm just a confused person, I see my doctors tomorrow and Friday.

I saw my doctor today and he increased the Aricept

July,

Does your Neuro know about your sleep apnea? It can be the cause of your memory problems. Your memory gets organized for the long term during proper sleep. If you have been denying your brain proper oxygen, your memory will be poor.

What did he use as a reason for increasing your Aricept dosage?

At least you are starting to get some answers.

My best to you.