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.

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.