Wednesday, January 25, 2012

Memory Loss

Memory, in itself, can become a very complex subject.  So, for this blog and for my own sanity- I will keep it as simple as possible.  I will talk about 3 different levels of memory in which our brains processes.  The intermediate memory is best described as what happens in the moment- a few seconds in time.  The brain will take the important intermediate memories and stores them into a life span of minutes all the way to hours (short term memory).  Short term memory is then converted into long term memory.  At each step of memory, the brain automatically filters or "processes" the memories towards the ending storage area. Some memories, of course, are not kept.  Long term memories can be retrieved over our life time - kinda like a filing cabinet that is never really purged.  We may have to really dig deep for older memories, but they are stored within the brain.  Now I don't know how the brain filters what is important to store and what is not... all I know is - this is the  "simpler" way to explain the "memory" process.

People who have brain injuries, will almost always have some form of memory issues.  The most common issues are related to intermediate and short term, although some long term memories can also be affected.   I have experienced all 3 types of memory losses over the past 2 years.  In the beginning, I lived a life of mostly amnesia.  I could not remember a lot about what was happening "currently" but I could retrieve some long term memories. Most of my intermediate and short term capabilities were extremely limited- especially during the first 4-5 months. This could be caused by the injury itself and/or with other factors such as fatigue and stress - just to name a few.  I would sit in a chair for hours, thinking that I had only been there for minutes at a time.  I would go outside just to listen to the birds, feel the warmth of the sun, or watch my dogs play- yet could not tell you how long I had been sitting there.  My husband would often ask me if I was OK- and I always stated "yes" - how could I even explain the time loss when I didn't understand the depth in which it was happening.  Shall we say- time passed so quickly and I had hardly no memories to show for it.  Of course, I also slept most of the days in the beginning.  I felt as though during the time when I was awake- I was still asleep.  Truly a weird experience.

Now, looking back- I remember having blocks of time missing- I still, to this day, can't tell you what happened during that "missing" time.  Perhaps I just stared into space- which I now have learned is the body's way of resting the brain.  Other things that I did was leaving the house and totally forgetting that I had something cooking on the stove or started cooking and couldn't remember what time I started.  I remember one morning - I had my friend Landa over for breakfast.  I was so excited about this "breakfast event".  It was going to be "girl time".  I was going to make french toast and sausage.  Now cooking the sausage wasn't much of a challenge, little did I know that making the french toast would be the challenge.  I remember putting butter in the pan and "poof" time was gone- I felt like I had been warped to no man's land and then decided to come back with no recollection of the trip.  I looked down and the butter was burnt.  My last memory was putting the butter in the pan- then burnt.  I didn't feel "how much" time lapse- but I knew that it happened.  I just looked at my friend and started crying. Yes, she calmed me down and with her "supervision" the breakfast turned out yummy, but during this time of my injury, it was so difficult for me to understand what it was that I was going through and I certainly had even a harder time trying to explain it.  I also had a hard time with "which forgetfulness" was normal and what was not normal. I was also in denial that these things were even happening.  I just wanted to be "normal" again- to be able to function at the level that I once had been prior to "the event". 

Other memory loss issues that I struggled with would be with the tools that I would use to "help me remember".  I would use sticky notes only to get frustrated in not knowing what it was trying to remind me of.   I wrote it- it was my hand writing- but I was clueless as to what I was looking at or what that "reminder" meant.  I finally learned to keep these notes for only a few days- if the memory did not come to me- I threw the note away.  I had too many notes piling up and it actually started creating anxiety that the memories just weren't there.  Now most people would say- write more on the note etc.  trust me I had notes that were actually 2 stickies long- at times there was no recollection of memory of what those stickies meant.  I don't know why the brain kept some memories and tossed the rest of them out.  Well, I didn't know then- I have more of an idea now.  My brain was injured and my body was trying to heal my brain- memories and functioning in daily activities was just too much for the brain to handle, especially when I was first injured.  My brain worked at keeping the essentials going like "Living" and discarded all of the extra work of keeping memories, speaking correctly and other issues.  Heck I didn't even have many emotions in the beginning.  Mostly numbness and frustration.  I learned very quickly that getting angry would put me back in bed for days- so I had to keep this emotion under control.  I think of it now as God's way of helping me get through this injury- especially in the beginning.  The people that do know me will agree that I worried a lot etc before the injury.  Once the injury happened- I was numb to everything- I truly believe that this is what kept my sanity in the beginning and also helps in the present.

I have had a few situations where my long term memory was affected for moments at a time.  I would forget how to use the cruise control on my car - that I have had for at least 8 years when the injury occurred.  Driving down a road and totally forgetting where I was going or where I was at.  Now I am from this area- so this experienced was very frightening for me when I could not recognize anything for moments at a time.  Yes - I know - I probably should NOT have been driving during this period, but I am very independent and had such a hard time asking for help.  Trust me- I only drove when necessary- mostly to doctor visits etc. Even today, I can still have this happen especially if I have been stressed, doing multiple things or fatigued.  Right after the injury, some of my friends would pick me up to go grocery shopping etc. because I would just get so sick and fatigued from shopping - and NO - I didn't want anyone else to do these things, I wanted to do them.  :-)  I guess I loved the torture-- or was it that I just keep thinking that I am not injured?  Denial- it can so kick your butt...

Other things, that mostly dealt with the short term memory, was forgetting conversations with family and friends, repeating what I had already said etc.  My family and friends learned quickly to either just listen to the story again- or at least tell me that I had already told them.  WOW - that was a feeling too, to be told that "you already told me that" when I soooooo did not remember telling them.  Yes- I would forget my meds, to pay bills, friends names and other tasks on hand.  Everyone understands what it is like to forget-- but to live like that for months- day in and day out- forgetting almost everything that was going on around you.  It was extremely frustration and scary.

Currently, I still have problems with short term memory loss, although not nearly as extreme as it was in the beginning.  I have gotten somewhat better about little reminders such as "using" a timer when cooking, counting "steps" when I now make coffee and tea and even trying to re-read those notes when I make them.  If I keep repeating something- it tends to stick more and I lose less. Of course, there are times that I still forget that I forget.  :-)  I will make a grocery list (which I never did prior to the injury) and I will forget to carry it to the store. Needless to say, when this happened I would find myself back at the store- the "next" day of course.  I have purchased food items multiple times- not remembering that I had already purchased it.  Yes- there are ways to stop these actions- but here again- apart of me is still denying that I still forget.  So as time goes on- I will learn new ways to "remind" myself. I am finding that counting steps - like making coffee (a 3 step process for me- add water, add coffee, turn on timer)- etc really helps- but this only works for repeated actions, that I mostly do on a daily basis.  I actually have a timer now for my medications.  I still have a problem remembering my meds, and I even have to think for a second as to why this timer is going off-- although this is an action that I go through twice a day.  It's hard to explain- but this is what I now experience.

I am hoping to be able to get into rehabilitation for the "cognitive and memory" issues that I now have.  This rehab would teach me new ways to learn things- to relearn what I have learned over my life time. Trust me- its not as easy as it sounds... Old habits are sometimes hard to break- and that's going to be apart of the learning techniques in order to overcome and compensate for my memory loss. I so pray that the government allows me the chance to get this type of rehabilitation.  To be able to compensate for my memory deficiencies so that I can exert less energy on trying to do just regular daily activities.  I really want to get back to working, although this may require the assistance of occupational therapy.

So for now, I am very forgetful at times but- I am so ready for the challenge to learn new compensation techniques. To be able to move forward to the next step of my journey of surviving a brain injury. 

"Memory is man's greatest friend and worst enemy". Gilbert Parker

Tuesday, December 13, 2011

An injured brain and depression

OK- so I will speak about the big "D" word - Depression.  I personally like to call it the other "D" word- Denial.  Yes- we have all experienced being down, blue or even full blown depression.  But things are different for me this time- I can't seem to shake the blues at times, and sometimes it just sneaks up on me without me knowing it.  The hardest thing for me to even admit is that I constantly fight depression - and it's affects that it now plays in my new life after the injury.  This will be a hard blog for me to write.
Having a brain injury, like most illnesses, changes your life in so many ways. Some changes are temporary some are permanent.  Sometimes it's the not knowing what is going to be permanent is a struggle within itself.  There's an old saying in the brain injury world- "if you've seen one brain injury, then you've seen one brain injury."  Everyone is different and so are the injuries to brains.  Depending on if you are a left or right brain person and the location of the injury, is how the injury itself will affect the different aspects of your life. Well, I have 4 areas affected- the left and right frontal and temporal lobes.  So- I am certainly affected in multiple areas.  Each area of the brain is used for different "controls and functions" of the body.  The frontal lobe's purpose is for the executive function meaning the planning, decision making and sequencing of events.  The frontal lobes also control the attention and emotions of a person, just to name a few.  The temporal lobes are responsible for memory, understanding, language, speech, naming and musical ability.  Of course there are other areas of the brain used for motor skills, vision, coordination and balance, appetite and evening breathing.  In this blog, I want to focus on how my injury of the frontal lobe has affected some of my emotions. 

Prior to my injury, I was an outgoing individual with a spit fire attitude. I undertook all the financial responsibilities and most of the decision making in the household- I was the accountant- it made sense.  :-)  But other traits about me were very caring, giving and loving to most people that came into my life.  My sister stated once that I have a huge circle of friends and people that I trusted, and a tiny circle of people that I disliked. I have always been that way- very trusting and loved people.  She was right.  I was also very focused on goals, worked extremely hard and was very driven to accomplish those tasks and goals that I would set for myself. After my injury, my husband answered a question (per doctor's tests) about me pertaining to was I happy with my life before and/or after the injury.  He answered no to both.  I thought this was interesting coming from him- so I asked him why did he answer the question that way.  He stated that prior to the injury- I was always trying to better myself- more education, higher role with my jobs etc.  I was never happy for just settling where I was.  After the injury I became very unhappy about what I can not do or remember- I was very unhappy with the brain injury and the effects it has on me.  Now the after the injury made sense- but the first one was an eyeopener for me, and he was correct.

Some of my emotions are still in a numb phase- this was very distinctive in the beginning of the injury.  Perhaps my body/brain could not handle or waste energy with emotions so for the most part they were numb. This truly sucks when trying to make decisions.  I remember coming out of a grocery store and seeing my car in the front.  I had a hard time deciding "what door to exit."  I just stood there.... I thought to myself - Barb just go, but I froze- I could not make a decision.  This is a very common aspect of my life now and it really SUCKS. Now over the past two years, some of the emotions are slowly starting to come back, but not nearly at the level that things were before.  I remember going to a funeral and not crying- when I indeed loved this person very much.  This in itself saddened me- how I felt so detached from my own feelings - how I should be acting but wasn't.  I do have anger outbursts at times, but thank goodness these come and go very quickly- mostly when I am driving.  Yes, more road rage....LOL  I like to think of it as God put this numbing device in place because he knew that I would totally lose it if I was as emotional as I had been prior to the injury.  Having these feelings that were now numb has definitely been a coping mechanism for me.  Having these feelings "numb" is also a very scary place to be in at time as well.

Last night I went to the Brain Injury Support Group meeting.  Actually these events is the reason why I wrote this blog today.  I had a dear friend call me just as I was leaving for the meeting.  Craig and I talked about the times when we first started the IRS together- we were both assigned to the Fairfax office.  I had adopted him as my little brother.  He even stated in the beginning of the call  that he doesn't want me to forget him (I have been diagnosed with dementia - but it's not like old age dementia- another time, another blog). I really enjoyed talking with him and laughing.  We even talked about what I was going through and some of the obstacles that I still have to face.  When I got to the meeting I just sat in my car after getting off of the phone.  I didn't want to go in.  I didn't want to have to face the reality that I have a brain injury.  When I was talking to Craig- I was remembering the old me and my career- here this building that sits in front of me making me face the present of my brain injury.  I made myself go in- for tonight was the big Pizza night with the topic of depression.  I guess this time of the year depression can certainly be a big problem for most people, but it is a bigger problem with people who have a disability such as a brain injury. I wasn't in that room for a minute and had to walk back out to my car- I fled. 

This emotion just took over with such power.  I wanted to just run- far away from this building and the people in it.  But after thinking about it today- it wasn't running from them- its running from me. After sitting in my car and making sure I didn't drive away- I made myself go back into the meeting and the "women" broke off into our own group after an hour or so.  I did not want to talk.  Hell, I didn't want to be there.  The facilitator stated that she wanted us to talk to see where we all were this week.  She picked me first- Of course I played tough- Ms. Cover up as my group now calls me.  I stated that I was battling fatigue again etc.  Talk just a few minutes about my meeting last week and turned the attention to some one else.  I wasn't dare going to say that I too am depressed.

There was a lady there who talked about her depression and her thoughts of suicide.  How she even counts her pills to make sure she always has enough on hand when she finally plans on doing this.  WOW my heart just sank.  I just wanted to jump up and give her a big hug- you are not alone I stated out loud, you are not alone.  I couldn't believe that I was saying this out loud- but I did.  Sadness- all I felt was sadness. Now, I do not count my pills- but I so "get" her feelings.   I remember sitting there not really hearing what the other ladies were saying and I was thinking that I don't like this feeling.  It's not me- how can I beat the injury if I am going to be sad?  But here again- this is very common for people with brain injuries.  Most of the other ladies talked about their sadness that they were feeling.  Most brain injured individuals can't handle the loud festivities that we once could- the lights etc.  Then there's the stress of the holiday itself.  Funny how this one holiday - Christmas was never suppose to be about stress- but in reality it is a very stressful and depressing time of the year.

I guess this too is another reason why I blog.  To get it out there.  We are not alone.  I guess you have to own a feeling before you can overcome it.  Well, I want to be the happy go lucky person- to enjoy life as it should be.  So for now- I will admit- I have depression.  Some days I am good, others not so good.  There!!!! my friends, family and doctors would be so proud...LOL and for those who are wondering- yes I am on meds for this.  I guess for now I will just say its a brain thing-- and in time this too shall get better or at least I will be able to express it and understand it more.

If you or a loved one is feeling depressed- please talk to someone and seek professional medical treatment.  You are not alone.   We are all loved and cared about by the people that we have in our lives. Each one of us, touches the lives of so many people.   I know first hand that it's hard to understand these points sometimes- but we are all very special people.  HUGS to all....

Never Give Up....

This sums up why we fight daily.  Not just individuals with brain injuries, but everyone. 

Thursday, December 8, 2011

Vision Issues

I sat in my office and thought about what I would write for today, since I had missed yesterday's writing.  So, I reviewed my MD's notes and decided to just pick one of many "impressions" as he calls them.  My friend Landa and I met my brain injury specialist for the first time in January of 2011. We were there for over 5 hours.  I was seen by two doctors and they did a "battery" of tests.  This was the first time that I had heard the diagnosis of post trauma vision syndrome (PTVS).  Most people hear of post traumatic stress disorder (PTSD), but this was a new diagnosis, like many, that I would have to do research.  If they would only talk accounting terms like assets and liabilities I could understand- but I would have to continue my research in the "medical world".
PTVS - is when a person will frequently report visual problems such as seeing objects appearing to move that are known to be stationary, seeing words in print run together, experiencing intermittent blurring, attempting to walk on a floor that appears tilted and having significant difficulties with balance and spatial orientation when in crowded moving environments.  Besides fatigue, which can be brought on by PTVS, this syndrome has been a difficult one to overcome.

When I was first injured, I started having on and off symptoms of vertigo, which became more frequent as the days followed.  Within three days of exposure, I was experiencing car and motion sickness- something that I have never had before.  Within a week, I had a hard time driving, watching TV, looking at a computer screen or going into stores. I constantly had vertigo and felt as though I was always going down a dip in a big roller coaster.  At times, some if not all of these things will still bother me during the day, although I am so thankful that it doesn't persist all day.  I used to be a die hard fan of the TV series 24 - The series would start every January- in January of 2010, I could no longer watch TV.  I had to miss other shows such as Fringe and American Idol due to flashing lights, the flicker of the TV screen itself and way too much movement.  I had discovered in a doctor's office that trying to read a newspaper would put me into instant feeling of falling and nauseous. 

I remember not too long after my injury I went to have an eye exam, thinking that maybe it was my actual eyesight.  My prescription had change "quite a bit".  I remember the person ordering the eye glasses asked me had I been in an accident or anything.  I stated no but was exposed to some form of toxins.  We talked and she stated that some people who acquire brain injuries will have their vision altered, and in some ways altered a great deal.  My vision was altered quite a bit- I certainly went into bi-focal glasses and my near and far sightedness was altered since the prior year's exam.  Little did I know them, that she had nailed it on the head (so to speak).  It would be over a year after that exam of being diagnosed of having an insult to the brain.

Other things pertaining to the eyes and vision occurred as well.  My right eye drooped (almost closed) as if I had a stroke.  Although that physical symptom has improved, that eye will still droop when I become extremely fatigued or exhausted. I also keep raccoon eyes now.  I guess dark circles are apart of my life for now.

Other issues associated with my new syndrome is vertigo, coordination, visual perception, issues with peripheral vision and the eyes not working together- I believe this is called convergence insufficiency.  My behavioral optometrists (which I also saw for the first time this year) stated that my vision now works like a "video camera".  If you swing around too fast the watcher of the movie will become nauseous- and this is what has happened to me. My brain is not processing the visual images as it should.  I have not started the vision rehabilitation at this point.  I am still waiting on the government to do their part- but he has given me a 50/50 chance of improvement.  At least now I can stay in stores longer without getting sick, although I will need a nap after shopping in most cases.  I keep this as part of my therapy - for I try to do some type of shopping once a week or go and walk around in stores.  Most people that know me also know that I hate to shop, but this too has been incorporated as a part of my rehabilitation.

So, for now I push myself to be on the computer and watch more TV.  Reading is still an issue, because I had lost most of my ability to just "scan" what I read.  So I read a lot slower now and have issues with retaining some if not most of information as well.  So I have to re-read most of the literature in order to retain the information. I will save this issue (short term memory, working memory and retrieval of information) of course for another blog.  But for now, I so miss how I use to see the world, although I am blessed that I still have my vision.  So for now - It is what it is... but things could always be worse.

"Never bend your head. Always hold it high. Look the world straight in the eye. "
Helen Keller

Monday, December 5, 2011

Brain Injury and Exhaustion

Today I have been really "fatigued".  I always say the words tired, fatigue and exhausted interchangeably, but I have decided to rate these feelings as I see them or literally as I "feel" since the brain injury.  Being sleepy or tired - easiest to over come - a walk in the park.  I can certainly push through these feelings to get things done.  No nap required.  Fatigue - more effort and energy to complete tasks.  I have to pick and choose what I can accomplish in a given time frame or even day. If I do too much, then fatigue turns into exhaustion - a nap may certainly be required.  Exhausted - "forget about it"... down for the count- lights out.  A three hour nap minimum is required at "least" once a day perhaps more often.  I am mostly down for a good part of the day, if not all day.   I always "thought" I knew what exhaustion was prior to my brain injury- Ha - I didn't have a clue.
Before the injury, I was a very active person.  Not active in the way of exercising, but always on the go or doing things like working, going to school and other activities, many activities.  I didn't require even 6 hours of sleep to function.  I was a night owl, not the greatest morning person though.  When this injury first happened, during the first month or two- my energy level only got me into the shower- in fact I cut all but 4-5 inches of my hair off, because I was too weak and exhausted to even style it.  Some mornings my husband would have to help me get in the shower and when I was so weak, he would sit in the restroom with me until I got out. He did this to make sure I wouldn't fall out of the shower, which almost happened on more than one occasion. Once showered, I would dry off, get dressed and go back to bed - some mornings I needed assistance again from my husband to even get dressed.  Just that little bit of movement took everything out of me- it was pure hell.  I can honestly say, I feel exhausted at some point everyday, but at least it's not all day like the beginning. I rarely get an opportunity to go through a whole day without exhaustion sneaking it's ugly head up at me. I would love to just "strangle" exhaustion - Make it go away-- but I can't do that right now.  I am very grateful that at least I can now do some activities during the day and even drive longer distances.

The Guilt- of being fatigued, not being able to get tasks completed or spending more time with my family and friends.  A simple phone call can sometimes exhaust me and I have to take a nap afterwards.  I haven't told too many people about the phone call fatigue, but it happens. The brain is constantly working -so there are times when trying to follow a conversation and responding can be a challenge.  There are times that I even "wing" it when my brain is in the "shut down" phase and I get lost in the conversation.  There are times that I will just start rambling on the phone and that's when I know that it's time to hang up and go rest - now this is a "one to one conversation" when I get into a crowded area or more than one person is talking-- WHEW-- well it's a challenge to say the least.

I now notice other symptoms of where my body is telling me that "my brain has had enough".  I will start to get vertigo and increased ringing in my ears.  Sometimes the loud ringing starts then the vertigo.  I can even have increased pain in my legs and arms.  I don't know how or why these things are related, but I KNOW that they are.  I experience them.... it's my life.  I have a friend at the brain injury support group that has done research on partial seizures. She stated that the ringing of the ears and exhaustion afterwards are signs that I had a seizure (another blog but I now suffer from silent seizures and take daily meds for).  Interesting, at least someone has stated what these symptoms may be related to- perhaps it's just exhaustion and/or perhaps it's the seizures either way- I know that I am not crazy!!!!  Fatigued and exhausted YES-- NOT crazy.  I will save CRAZY for another blog as well.... :-)

So when friends and family state that "you are always tired", yes I am.  I don't want to be like this- who in there right mind would want to be (remember I am not CRAZY).  So, I myself get very tired of saying that I am tired.  People who don't have a brain injury won't get it. So don't think that you can. A person without a brain injury understands being exhausted for a short period of time and feeling "refreshed".  I have lost that "feeling of refreshed" for now.  Just please accept that for now that this is apart of me. I don't want to feel guilty that I am tired.  It's my brain telling me that enough is enough.  The brain doctor states that my brain is working "very inefficiently and literally shuts down".  So I take it as a car running out of gas- it may or may not get you to your destination.  The car can not run on fumes alone, and neither can I.   Everyday it is a journey for me as well- the exhaustion for me is probably the biggest frustration that I have.  So just bare with me-- I am still under reconstruction - I have to learn to set my limits, which is extremely hard for me.  So please, don't state that "you are tired again?" I am tired, fatigue and exhausted all day, everyday it's just a matter to what degree I am at.  So just hang on and bare with me.  In fact, I think I would perfer that people don't ask me how I am feeling - tired is always the first thing that I will say.  


Sunday, December 4, 2011

Accomplishing Tasks

Well, Yesterday and today I was focusing on "getting my nest in order".  I started making room for some furniture that my friend's parents gave me. A nice couch and chairs.  Now, I have to admit I laughed at myself soooo many times trying to figure out where I was going to put everything.  I personally wanted to throw out the old couch - but hubby said no.  Dang pack rat that he is. Anyway, you would have thought I was trying to build something huge.  As I was trying to figure this all out- everytime I would move the furniture around I would wash the baseboards etc.  It felt so good to be getting some of this cleaning done. 

Here's the problem - too many tasks on my plate.  Since the injury, I can not stay focused on one thing.  I don't mean to jump around and I certainly was not like this before.  It's as if I can't complete anything I start.  It's not bordom on what I am doing- it's as if I forget what I was doing when something distracts me.  I have already gotten distracted twice since starting this post.  It drives me CRAZY.  I will be doing one thing and before I know it I am in the middle of something totally different.  I started the laundry today, worked some in the office and ended up in the back yard cutting grass and raking leaves.  Neither my laundry, office, the cleaning from yesterday or the yard work is completely finished.  It is so hard to explain all of this when these actions are so different from how I use to be.  Lord, I just got very distracted again.  You know, it does take some time for me to even write these blogs.  :-)  Thank God I have this screen open on my computer-- I may have totally forgot that I was blogging....ha,ha,ha

Somehow this problem with attention deficeit and time combined are an issue as well.  You see, I have also lost the concept of time.  I won't go into that one too much, I will save that for another blog- but I can't tell how much time has passed - so time management is OUT the window for me now.  My doctor wants me to download a timer on my computer and when I hear the timer go off- I need to figure out if I am the right course for the task at hand.  She said that the easiest way to track this would be for me to put a penny in my pocket everytime I was off course.  LOL I will have a pocket full of pennies....LOL I guess I now have to learn how to break up the tasks into smaller tasks to get anything complete.  WOW - tasks into tasks and so on....  Oh well-- I guess I have to re-learn how to crawl before I can run.... and one day I will be running again.