Sunday, 29 April 2012

Signs and Symptoms of a Brain Injury

When I decided to write this section it comes with some reservation as any one of these symptoms may or may not present itself and may not even indicate an actual brain injury.  They are guidelines that suggest that further investigation may be required.
I am only concerning myself with the “MILD” brain injury.  I hate using the word minor or mild because every brain injury is serious but in the text that I am referring to, it is the type of brain injury where the effects are not readily visible.  Serious or traumatic brain injury as it is often labeled is recognized by the medical profession and corrective steps are taken by them to address all the rehabilitative needs of the survivor.
In the case of a suspected brain injury, many well meaning Doctors or emergency personnel are over worked and improperly trained to recognize tell tale signs of a mild brain injury.  Recently, a B.C. hospital released an assault victim and he was found by his wife wandering the streets.  He was taken back to hospital where a part of his brain had to be removed.  This is not an isolated incident and quite often it is the due diligence of the loved one who makes the difference.  If your General Practitioner is not willing to refer you or your loved one to a specialist then get a second or third opinion.  A neurologist or neuro-psycholigist should be high on your doctor’s list of referrals.  The most recent information suggests that a simple CAT scan or MRI may not be conclusive in determining the evidence of a brain injury.  It is now believed that the injury can occur at cell level and MRI’s reveal injuries that are millimeters in size and not microscopic.  Proper testing of brain functions may be required.  A study done by an Australian University show that under normal conditions both brain injured and non brain injured subjects performed well on tests but when the level of oxygen in the air was reduced and the tests performed again, the brain injured subjects performed worse than their uninjured counterparts.
              Your loved one may present with one, several or all of the criteria listed below however the severity will vary.  A brain injury is subjective and as individual as the person it afflicts.  The treatment will vary but with all brain injuries there will be similarities.  The success in treatment will vary from one patient to another.  You should never set a time table for when an individual should attain a certain level of recovery and more so neither should your doctor.
            I have had the unique experience of coping with my own brain injury for over 30 years.  I continue to improve and overcome.  I have worked closely with an individual whose recovery is ongoing and has been for over 4 years.  He continues to improve and has astounded all of those who have been witness to his recovery.  The brain is a marvelous organ whose resilience is still being discovered.
            When you enter into this abyss known as brain injury, you become either a survivor or a care giver.  It is important that you join a support group, if at all possible a brain injury support group.  This book will list some of the many out there where you can turn to for support.  Many people will deny the fact that there is anything wrong with the individual who has suffered a brain injury.  The hair grows back and everything returns to normal except for the survivor and his/her caregiver and immediate family.  The anger outbursts are just a childish tantrum people might say or you are over reacting and for the brain injured they may accuse him/her of being lazy or the best medical term I have heard is, he’s a malingerer, tell him to get on with it.
            Unless you are brain injured or involved directly with one who is, you cannot fully understand the dilemma of living with a broken brain.  It is a hidden disability.  It is pervasive in how it attacks the family like a disease.  It has no preference and leaves no prisoners in its wake.  It destroys the family, it boasts a 90% divorce rate and often leaves the brain injured helpless and on the street where he or she becomes a victim or perpetrator of crime where death or incarceration are the final outcome.
            This hidden disability has no conclusive remedy like that of other disabilities such as the loss of a limb or paraplegia or quadriplegia.  Though the mental trauma at the loss of mobility will vary between individuals the treatment is relatively the same for each accident victim.  The treatment for loss of an arm is similar to each patient.  One is taught how to walk, how to regain their balance after several ounces or pounds of body has been lost.  You are then taught to dress yourself, feed yourself and use your prostheses. Without going into more specifics one can appreciate that with a physical disability such as loss of arm, what works for one works for all.  The only barrier is the patient’s acceptance of his/her disability.
A Footnote:
Why is it that a physical disability is accepted as a disability no matter the size of loss of part or mobility and a brain injury is not?  If a person loses his hand or lower arm or even above the elbow, one automatically accepts the fact he or she is disabled.  With a brain injury you are not automatically accepted as being disabled until you prove it.  The answer to the question is simply this, the loss of a body part is visible and a brain injury is not.  This is why I have had an uphill battle with the medical staff and general public.  Each is apt to voice their prognosis of my ability or lack of it and determine whether they think I’m disabled enough.  Does that make sense?  Would you say to a person with one hand missing that you are not as disabled as the person missing an arm so therefore I’m not going to recognize your disability?  They are in fact saying yes you are disabled but just not enough to be noticed.  This is the dilemma that faces the brain injured.  If your malady is not glaringly obvious, you are immediately suspect and so are your motives for being declared disabled.  In fact all that you are asking for is that you be given the protection afforded disabled as a whole so that you can get the assistance and re-training so that you can return to some semblance of your previous life.  The social structure in Canada is that you are placed onto the roles of Welfare and that in itself carries a stigma of being a “Welfare Bum” or free loader of which you are the furthest from.  It is high time that the disabled were removed from the tenets of Social Assistance and placed into a category all on its own and run by a different office than that of Welfare.  By treating the disabled with dignity and grace we would go a lot further than by diminishing their already shattered self image and adding salt to their open wounds.
            With a brain injury, the very essence of who you are is affected.  The brain is the computer that allows you the ability to compensate for loss of limb or mobility.  You simply tell a person who has lost a limb, what they have to do to compensate for that loss.  How do you tell a person with memory damage to remember? I know!  You get them to write it down.  What if they forget they wrote it down or where they put the notepad?  As you can see the hidden brain injury is by far the most complex set of circumstances a disabled person can face.  To complicate the above memory example one must understand that depending upon the region of the brain affected one does not usually escape with just one complication such as short term memory damage.  He or she may have speech, auditory, recall complicated with behavior issues like anger, sadness, depression, and of course then there could be vertigo affecting mobility or hemiphlegia (paralysis of one side of the body) to name just a few. Each neuron or neural-pathway that has been altered, damaged or cut-off, results in a host of other complications.  Besides speech, memory or coordination one could become dyslexic in their hearing or lose their ability to perform math or forget their past but remember the present.  Some people become obese because they have no sense of fullness and no memory of when they last ate so they eat again.  Some people become anorexic for the exact opposite reason simply by forgetting to eat. Without further delay here are the basic things to look for in your loved one when a brain injury is suspected.

Signs And Symptoms of Brain Injury

The original title was going to say “mild brain injury,” however I think the medical staff should stop classifying brain injuries that way.  It is abominable that one would relate to any trauma to the most critical organ of the body as mild.  It is misleading to say the least.  A mild brain injury can still leave lasting, permanent impairments to the patient.  Now I’m sure the editor will have fun with the plural found in “impairments” but I assure you that as complex as the brain is the likelihood of escaping with only one disability is as close to impossible as one gets.  I do not want to frighten you but it is imperative that you the reader appreciate the scope of the serious nature of brain injury.  There is no such thing as minor.  You may deny and hope for the best but be prepared for a life of hardship.  You may want to sweep the mild almost laughable short term memory damage your loved one now displays under the rug but believe you me, it will come back to haunt him or her and you for years to come.
The argument will be in a statement of “Well, we all forget from time to time, so what is the big deal?”
Try living with a mild memory disability for a moment.  The frequency that a non brain injured person will forget is for the sake of argument, 1 out of 10, while a brain injured is 4 out of 10.  That means that you lose your wallet one time while a brain injured loses it 4 times.  Now these numbers are arbitrary and I only want to demonstrate to the non brain injured what it is like to live for a moment in my broken brain. The frequency to my forgetting is 3 or 4 times more than what it is for you.  I have lost 7 wallets so far.  “So what.” you might say.  Well that is seven driver’s licenses at $35.00, cancellation of credit cards, of re-applying for social insurance card and birth certificates so that I can get my ID back.  That is several hundred dollars not to mention any money left inside the wallet.  It is leaving the house to mail a letter and getting half way to the mail box and realizing that the briefcase is at home and turning back and picking it up.  I then get to the mailbox and realize that the letter was beside the briefcase.  It is having your wife say please bring in the stroller from the car as you are walking out of the door and getting into the car and driving away because between the door and the car you forgot.

It is being chastised by co-workers and bosses because you look and sound normal therefore you are faking it and are simply incompetent or lazy when you fail to remember to complete tasks.  Then this “mild” memory affliction weaves its way into your daily routine.  Your wife gets frustrated because you remember some things and not others.  Are you faking it she asks the doctor?  Why is it he remembers a news event but can’t turn off the element?  Your children take advantage of your memory loss like all good survivors do and when you ground them for something they know by the second day you will have forgotten it.  What about that appointment?  Returning an important message?  The self confidence of the brain injured takes a nose dive as he questions his every move.  Did I say or do that and immediately when you are asked did you lock the door or turn off the element you can’t recall.  Unscrupulous people take advantage of this and quite often to avoid conflict the brain injured give in to an argument where they were in fact correct but due to circumstance could not find the words to argue the point effectively. Now we have only scraped the top off this iceberg because the results of this continued memory problem incites a whole new process called frustration, anger, misunderstanding that often leads to divorce.
Remember, injury survivors enjoy a 90% divorce rate.

So now that I have somewhat enlightened you let us explore the many signs and symptoms.

Depending upon whether you are a school age person or employed one of the potential signs to come out of brain injury is:.

1)      Reduced Attention and Concentration

Employ your teacher or co-worker to keep tabs on the brain injured performance.  If grades decline or the person is being reprimanded often at work this could indicate trauma to the brain.

2)      Memory Loss

This can affect long term memory however in most cases some level of short term memory loss occurs.  This is usually permanent as short term memory is located in one region of the brain and long term memory is dispersed all over the brain.  Some people with severe cases cannot remember anything at all about the “NOW” but can tell you who won the Super Bowl 10 years ago.  When you talk to them and then leave the room and return they can’t recall that you were just there with them.

3)      Emotional and Personality changes

Easily frustrated.
Easily angered.
Overreaction to events.
Decreased emotional responsiveness.

That is a big list but it can be displayed in many aspects.  Everything that will be listed here may not reveal itself in the patient.  I personally relate to three of the above six listed.  I no longer assemble items or repair things or help people move because my tolerance is very limited.  To avoid frustration and not because I am looking for an easy way out I avoid things that may cause frustration.  When I get frustrated, I get angry and in fact embarrassingly, I used to get very angry.  I punched holes into walls, my vocabulary was quite colorful.  I  took an anger management course and delved into my brain injury in a way I had never done previously.  Now that I can identify some of the triggers that cause frustration I can reduce the level of outbursts. My loving wife has also had to learn on the fly how to monitor my behavior and identify those moments where I need to take a break so that I avoid those frustrations that can escalate.  Her role is critical to my success.  By not placing demands on me and identifying those things that can cause me frustration and communicating to me that it’s time to walk away, the incidents are few and far between.  It is a symbiotic relationship.  Yes, I can manage on my own but a relationship, and more so a successful relationship is dependant on both parties working in unison.  It is a new dance that we both must participate in and in this sense she becomes the lead and I relinquish that role.

4)      Cognitive Changes

Reduced reasoning and problem solving
Difficulty following directions
Misunderstanding what is said by others
Difficulty expressing thoughts verbally

In this I see all four in myself to one degree or another.  My problem solving is quite good and in fact math comes to me easily.  Prior to surgery I failed math 10, three times.  I passed Math 11 with an A.  Difficulty with following orders for me is directly related to the memory recall set back.  I can follow directions if they are not given too quickly.  Give the brain injured written instructions if you do not want them to forget one of the items.  The more stressed they are in remembering the less they recall.  I take things quite literally and sometimes misinterpret what the individual is conveying to me.  I may even get offended by what they have said.  The old statement, “I forget too,” is a common statement meant to make me feel better and offered by caring people.  It offends me because I have a higher frequency of absent mindedness that the other person can’t begin to comprehend.  I ramble on and on and on and on because my thoughts are scrambled and I’m not sure until the person I’m speaking with has been bored to death by my repetitive nature as to whether they got the point or not.

5)      Social Behavioral Changes

Impulsive or inappropriate social behavior
Reduced Judgement
Decreased insight into self or others
Difficulty establishing and maintaining relationships
Difficulty following through with responsibilities at work or home.
            Inappropriate behavior can manifest itself in many forms.  In Golden Girls, Stella the older mother often spoke her mind.  Children, also find this to be quite a task and may state out loud, why is that lady so fat?  This is a mild example but it can take more serious formats such as exposing oneself in public.  Naturally we are more concerned with moderate alterations.  If more severe cases are present, you already know a brain injury exists.  Reduced judgement can come in different forms.  Poor choices of new friends who take advantage of the survivor are quite common.  I am taken advantage by others because I cannot argue effectively even if I know I am right.  All a person has to say is don’t you remember, you said this?  Now I am lost and must relinquish my position because I honestly don’t remember if I did say it or not.  I have a very patient wife and therefore my relationship is still in tact for 12 years, however that bucks the national trend for brain injured people.  The normal path is divorce, drug and alcohol abuse, crime and prison for the male population.  I have also dwelled on the final topic of not following through on responsibilities.  My brain won’t allow me to complete tasks based upon distractions and memory.  If I am doing a task and the phone rings, the other task may be stopped briefly or completely abandoned as a result of forgetting that it even existed.
Obsessing is a talent I have mastered well.  I get stuck on a subject and can’t shake it for days, weeks and even months at a time.  Some people actually get so stuck that when they are informed that they are going to the Doctor at 3:00 that afternoon, will get dressed at 9:00 AM and sit in the car awaiting the time when they must leave even if it is six hours later.  My children dread the fact that we are going to discuss a subject because I go on and on and on.  Sometimes they feed into this just to get my goat.  I have gone to counselors and have managed to get them so far off track they forget where they were.  I’m not sure that is obsession but it comes out of a fear of forgetting what I am saying and if the counselor says something or in a conversation I remember another important piece of information, I simply blurt it out.  It takes a talented person to keep me on task.

6)      Physical Complaints

Head Aches
Dizziness balance problems/vertigo
Muscle weakness
Numbness and tingling
Fatigue or difficulty sleeping
Blurred vision
Ringing in ears.

If you suffer from a head ache that is the most painful you have ever experienced, then go straight to the hospital, do not pass go do not collect 200 dollars.  This is a tell tale sign of a stroke or brain aneurysm and believe me even if it proves to be anything but that you’ll be better off than had you not gone at all.  Fifty percent of those who have an aneurysm in the brain drop dead on the spot.  In my case nausea came with the pain in the head.  I never felt weakness, tingling or numbness but to this date I tire easily.  I write about one page of this book and it takes about 1 to 2 hours.  It virtually wipes me out mentally and must retire for the night. I have erratic sleep habits.  My most common routine is to go to bed for 2 am and wake up at 8 or 9 and then have a nap at 4 P.M. and stay awake until 2.  Sometimes I get up at 3 and 4 am but can relate that to too much caffeine.  I do not suffer from blurred vision or ringing in the ears unless my wife screams at me and or whollops me with a frying pan when I act up.  O.K. a little levity, my wife is not an ogre.  My point in this exercise is to have you realize that you may suffer from one item or another or none in one category but many in another.  The objective of this exercise is to get you looking for signs of a potential brain injury and if by chance you are led to believe your loved one has suffered from one, you can take the next step of getting referred to the right specialist.  What was one of my first brushes with the rupturing of an artery occurred in Vanderhoof that June day of 1977.  In that I did experience nausea, dizziness, vertigo and muscle weakness.  It was one of those tell tale signs that was grossly overlooked by the medical community on 2 separate occasions.  The other happened on Halloween night.  Although this second event eventually led to the correct diagnosis, my G.P. was willing to pass off these signs and symptoms as that of a migraine.  I have repeated these to moments here in hopes to enlighten you on the importance of your roll as a caregiver when you the symptoms you witness are suspect.  Insist on a second opinion, insist on an MRI or CAT brain scan and don’t stop until you are shown convincing physical proof that rules out a brain injury.  Do not settle for an opinion based of an educated guess.

7)      Denial or Lack of awareness of deficits

This was and probably still is me as I slowly open my eyes to this world of brain injury.  It wasn’t until I began writing this book that I actually examined my poor behavior as a teen and managed to tie it directly to my memory deficit.  It wasn’t until 1995 that I even believed that there was anything wrong with me beyond a mild case of forget-me-not.  It has been a frightening and sometimes painful ordeal to finally look into the mirror and see a broken brain, a broken soul whose life has been tarnished with one failed opportunity after another.  The only thing that keeps me going is my personal determination to overcome.  It helps to be quite forgetful because you end up forgetting what you were mad at yourself for and off you go again determined to succeed.

8)      Difficulty on the Job or at school

This is crucial to your future.  Your boss or your teaching staff should be made aware of the brain injury and potential side affects.  I went to work in a saw mill.  I did not inform my bosses of any deficits because I didn’t have any.  I was cured back in 1977.  I almost killed a co-worker one day and that was directly related to a poor memory that I didn’t have.  I’ll elaborate on that later on, but for now it is important for you to realize that you may save your loved one the loss of job or a child from failing school and slipping down the slope of no return.  If the proper authorities are made aware of the situation they may be able to accommodate the worker or student by reassigning them to light duty and for school, tutoring may be the course of action.
            There will be many challenges, prejudices and misunderstandings by everyone you come in contact with.  Many will try to downplay the severity of the injury.  I had a psychologist state she would not write a letter supporting my application for disability status because she has seen worse cases.  I know how fortunate I am and that there are worse cases, however that does not take away from the fact that I am permanently brain injured and my performance in a work environment is jeopardized by those deficits.  I know, I experienced the anger from bosses when I forgot to push a button and caused downtime.  In one case I almost killed a co-worker because I forgot he was working near my machine and I flipped an 800 lb log.  He felt the wind of that log as it passed within inches of his head.   My goal for disability status was not to avoid work and ride welfare but to re-educate myself into a role that would suit my specific needs.  The Doctor thought differently though and that could have spelt disaster for my employer or co-worker who would have been unaware of my deficit.  Could you imagine leaving me in charge of locking up or shutting off stoves, heaters and the like?  As an employer you could stand to return to charred ruins because one step in the shut down process was overlooked by someone who looked “normal” but was hiding a memory deficit.

There isn’t even a listing referring to the eating disorders I mentioned earlier where one forgets to eat or forgets they have just eaten and eat again.  Oh yes, this is a memory issue isn’t it?  It could be a complication of the receptor responsible for informing us that we are full or we are hungry.  I cannot cover every single item that may arise from a brain injury but for every possible brain function there can be a complication of that function if the part of the brain responsible for the action is damaged.  This then encompasses every known physical and emotional dilemma discovered by mankind.  Every neurosis, every phobia, every emotional issue can manifest itself in the brain injury.  Of course not all will and some are more manageable that others but one should be cognizant of the likelihood that you will be visited by more than one issue with a brain injured person.

Fancy that! I remembered! Links

The following links are in random order with no preference given....simply a place to start.


Online Support for Brain Injury


Brain Fit World

Chronic Traumatic Encephalopathy CTE!/CTEInformation

Brain Injury Group

The Balanced Mind

Carolyn Spring

Neurologic Rehabilitation Institute

North American Brain Injury Society

Cariboo Brain Injury Support

What can I expect shortly after TBI?

Well I didn't go into depth of what to expect when it comes to a traumatic or acquired brain injury.  So lets dust of the long term memory and see where that takes us.

I have said in the past, not sure if in this blog, that brain injuries are as unique as they come.  The treatment will also have to be tailored to the individual.  Not one brain injury is alike and that is why they are hard to treat in rehab.
Most other injuries have a beginning date and an end date, so to speak.

A broken arm takes immobility for about 6 weeks and within a few more weeks you are back to your old activities.

The treatment for loss of limb is similar to all limb losses.  There is the healing, the fitting of a prosthesis, and retraining on how to compensate for loss of weight, (the limb loss causes balance issues as the brain compensates for difference), Acceptance by the individual. Though some may take longer than others, the actual healing from the loss has a start and end date.

Brain injury is the great un-equalizer if I could invent a new word.

I may have damage to my temporal region of my brain and someone else has an identical injury but it affects us in completely opposite ways.

Now, I am probably going to be hung out to dry by the feminist movement for this next statement but it begs to be said, a female brain is wired differently than that of a man's thus the same injury may have marginal affects on a male and pronounced affects upon the female or vise-versa.
If the speech region is injured, the male may have lesser affect or may be heavily impacted and require therapy whilst a female who from early on developed a stronger communication skill has her speech barely impacted.
She may notice a huge drop in her ability but because speech developed in several regions the impact hardly make a blip on the scale and she requires little or no therapy.

It takes a skilled Doctor or Therapist to identify the individual needs of the brain injured.  The recovery may be short lived or may require years of constant training.

As soon as you the caregiver can take an anger management program, the better.
I am not accusing you of losing it.  I recommend this for the injured as well when he or she is capable to do so.


You will be taught how to edit your responses to certain situations.  You will be taught how to build up a host of coping skills that you can eventually rely on when and if the crisis arises.

Chances are, there will be many challenges.

A brain injured person is more likely to act out inappropriately.  He/She will, like you, get frustrated and even angry.  If you have a new skill set you can diffuse the situation before it gets out of control.

Brain injury enjoys a 90 percent divorce rate.
Violence may become a dire concern that even forces you to leave the injured loved one, merely for self preservation.
Do not stay in a violent relationship.  Your life is so much more important.

So you can expect,
1) A longer healing time.
2) Possibly multiple regions of the brain injured.
3) Anger
4) Frustration
5) Possibly Violence

What do I mean multiple brain injuries?
A fall from a bike causes a concussion.  The brain bounced off the frontal region of the skull and then swished back and bruised the occipital region of the brain.  Now you have the initial injury up front that alters your speech and the back of the brain alters your blood pressure.  (Just a hypothetical example)

My short term memory was impacted.  My ability to recall information stored in this broken brain sees me stutter whilst I try to relocate it.

My speech was affected in the beginning.  I couldn't say winter or tomato.  I could not identify everyday items like a comb or a paper clip.

I am not an expert unless I qualify by simply living for 34 years inside this broken brain.

I do have wisdom, but what works for me may be completely foreign to the next.

You will require several tests to determine all that is wrong post injury.

I wish we could all get an annual brain test for free.  In the event of a brain injury, you have a before snapshot to compare to the test, post injury.

Since we don't have that luxury it is so important to write down your observations of the brain injured and share those findings with others who are close to that brain injured person and if there is a consensus, take those findings to the therapist

I couldn't perform math prior to the injury and after the blood clots were removed from my brain, my math skills improved dramatically.

The downside to that miracle is, my learning skills dropped.  It takes me 3 times longer to get the answer.

It doesn't bode well for schooling where you have an exam that is timed.  My math answers may be 100 percent right but I completed only 1/3rd of the test.  A failing grade so to speak.

My concentration is also damaged.  I have a hard time staying on task.  The phone rings and I forgot what I was doing prior to that event and go onto something else. I am then accused of being incompetent or outright lazy.

I know I am fortunate because so many others have greater challenges than I. Like all brain injuries the problem is the longevity of the injury.  Permanent means just that....forever....

I have gotten accustomed to having to make several trips back home to fetch my thermos of coffee, my cell phone and even my wallet.

This past week, my wife had to drive 75 miles to where I was working to bring my Hand Held Computer, required to print out invoices to my clients.  I had to return home for my cell phone.  I searched for my phone last night and because the ringer was off,  took longer to find where I put it.  I had to check the back of my 5 ton truck twice to see if in fact I remembered to close the back door. I was expecting an important call on the day I misplaced my phone and missed the call due to the volume being turned off. Twice this week I got into bed and remembered my alarm on my cell phone would not work from the kitchen where I had left it and had to get up again to retrieve it. I went to the grocery store when my wife called informing me that my wallet was at home.  During the same week I went to the mall and had to come back for said wallet. I forget to unplug the phone from my hand held computer and receive no calls for the remainder of the night. I have forgotten to turn off my one cup coffee maker twice this week.

The above is a shoddy snapshot of what I face on a daily basis.  I say shoddy because this is what I could remember from the past week.  There are so many moments of forgetting it's hard to recall all of them.

Often times, the events pile up. The frustration level for both my wife and I can run high.

She had a hard time accepting my disability too.  She even asked the doctor why it was I can remember  one thing and not another?
It is the nature of the beast.
You the caregiver will be challenged every step of the way.  Ensure you prepare for a long hard uphill climb. We measure accomplishments however small as giant leaps.
Look for methods that the loved one can utilize to improve or replace the region the barin has been affected by.  A cell phone can act as a memory and a reminder device.  Notes on the mirror, Did you flush the toilet?
Did you wash your hands?  Did you brush your teeth?

Blister-packs can assist in remembering to take daily medicine's.  A phone call can do the same.

Initially though you will meet with your G.P.
A neurosurgeon
Possibly a Neurologist.
A Neuro-Psychologist
A Therapist.
Ask questions.  Take notes.  Share your observations with the doctors or therapist.
Your loved one will take one or two neuro-psychological  tests.
This test lasts several hours and tests the brain functioning in detail.
Word finding, memory, memory recall, vision and even peripheral vision will be tested.  The left vs right hemispheres of the brain will be tested (a right handed person should be faster than things done with the left).
Mine was the opposite after the injury.
Divergent thinking will also be examined. The list goes on.

Accept where you are.
Don't use your past as a guide or marker to determine your recovery rate.
Measure your progress by how you overcome the challenges you now face.
Don't feel lesser of a person if you find you need to use help in the form of notes, a memory prosthesis like an Iphone to recall appointments.  Embrace them, they will reduce your anxiety levels.
Anticipate and accept the loss of friends.  Sometimes it is how they (the friend) cope with the loss of their friend.
Join a support group...Both of you!
Your loved one, especially if he is a male may feign at joining a group because he does not want to compare himself as disabled.
That does not mean that you cannot.  The caregiver needs all the support she can muster.  Join as soon as possible.  If there is not one in your area, go online and you will find all brain injury groups are a wealth of support and resources that will help you navigate this new and sometimes challenging world.

Find out what the government offers in the form of assistance.  They(the government), love to offer things to the disabled but enjoy hiding them from you by changing the name of the agency, or by burying the items so deep in red tape where it takes a genius to discover them.
Our local provincial government offers fresh water fishing licences to disabled for one dollar.  They cut the B.C. Ferry rate in half for both the disabled and caregiver.  They offer provincial campsites for free.  If your loved one is in a hospital away from home you can declare your hotels, meals and parking at the hospital on your tax form so keep your receipts for lodging,and fuel bill receipt.
The federal government will give you the tax back on your gas if you have or are disabled.  So continue to keep your gas receipts and get back up to $500.00 a year.

More to come....

Friday, 27 April 2012

What do you do with a broken brain?

It's kind of cliche, the question but when brain injury occurs within the family, all hell is about to be let loose.

If it is a child, there is the fear from the parental perspective of will our child ever achieve the hopes and aspirations we had so desired for him or her.

If it is an adult, then who a different set of circumstances appear in the form of who is going to support the family if the injured one is the primary income earner.

If it is the caregiver of children, then the concern is who is going to look after the kids while I am at work?

Of course before we even cross that bridge of troubled waters, there is the initial shock of the injury and what the outcome might be.
A whole new set of words course through your brain, a language of medical jargon, that you were and are not completely at ease with.

Temporal, occipital, aneurysm, embolism, stroke, seizures, long term and short term memory, divergent thinking and a plethora of other catch phrases that will have you reeling.

The best analogy I can think of besides the obvious, "from the frying pan into the fire", is that it is like being thrown into a body of water and having to swim when you never knew water or how to swim.

You will be trying to determine the outcome of the loved one.  How serious is it?  Will he/ she survive?  Will he/she need surgery?  How long will the recovery take?  Of course the biggest question that will plague for years to come is, "Will he/she be normal?"

Oh, how I hate that question.  My question to that is "Define normal to me, please?"

We all envision the placid place with white Pickett fences like Dick and Jane and of course Spot, yet we live in a world that presents itself ironically in the opposite light.
Normal to me is simply this, we all have skeletons in our closets.  We have an outcast relative, there is divorce, children born of different fathers or mothers.  The diversity of maladies that defines our friends or relatives is in fact the true "Normal".

I'm brain injured, that is my lot in life, and I am comfortable in my skin.  It is our ability to accept each other with all our quirks that makes us "Normal".
The old saying, if you live in a glass house, cast the first stone...comes to mind.

The real question is not will he/she be normal, but rather, will he/she recover fully and be a contributing member of society, again?

The answer is going to floor you and you might even say I am being negative, so please sit down...

No he or she will never be normal again!  It is like trying to fit a round peg into a square.

He/She will be normal again however, somewhere down the road.  That time frame will be determined by you and the brain injured loved one.
When you can accept the new person that you or your loved one has become the sooner your new normal will begin.

The hardest thing you will have to let go of, are the ghosts of who you or your loved one once was, before the injury.
We will fall into the trap of I used to or he used to before the injury and that trap does not bode well for recovery.  You have to start over and gauge the new accomplishments from post injury forward.

Healing is pretty much over after the first 2 years.  I balked at that and have even said that I am still healing to this day.  It is true in as much as I learn new shortcuts around the obvious permanent brain injury.  Technology has been a blessing from mini cassettes to iPhone, which have played a pivotal role in my continued growth.
Truth be know though, I got tested in 1978 and again in 1994, and the results were identical.  Guess what I still passed that confounded test with flying colors....again.

Nothing had changed.

Well not true.

I had changed my thinking, accepted the fact I will forget more regularly that most.  In fact the test said that 93 percent of the population would remember better than I.

It was my approach, the acceptance by myself and friends and co-workers as well as my ability to inform those around me that in fact I am brain injured and will forget.
I even laugh at my foibles rather that fly off the handle.  You do have a choice of how you will respond to your disability and the more positive you are the less stress you will have.
Believe me, I tried the first approach, and I assure you it does not work.  No matter how pissed off I got at my forgetting stuff, the outcome was the same...I still forget.
By accepting it, you forgive yourself and a weight is lifted off your shoulder.

Surround yourself with support.  Join brain injury groups in your neighborhood.  Go online if one is not available locally.  There is help.  I will list some in the coming days.  If I don't then please remind me.  @K_tzu  is my twitter address and my email is 

Sunday, 15 April 2012

I Passed the test....I'm disabled!

A funny thing happened on the way to recovery....I know you're waiting for the punchline and I have forgotten it already.
I decided to go back to school but there was a 2 year wait for funding through unemployment insurance services and I wasn't going to sit around that long.
A co-worker of my mom,  recommended a government agency that would possibly fund my education immediately.
All I had to do was pass a simple test.  I thought great, anything just to get back to school, would do. 
The agency was called Aid To Handicapped.

I met with a lady who would be testing me on what I wasn't sure but if it meant getting my schooling for free then, here goes nothing.
The test involved a myriad of challenges.  The examiner would ask me to repeat after her, three, nine, six, two.
I would then repeat them.
She increased the amount of numbers to seven and I would try to repeat them back.

Another test was similar but instead of repeating them forward, I would have to repeat them backwards.

I would be given words and in the same manner repeat what I had heard.
Several times during the day I would be asked to recall those words.

The test took the better part of the day.

A few days later the examiner called and informed me that I qualified for Aid For Handicapped and that my college would be covered.
I was elated!  I had passed the test!  I would be getting my schooling paid for!  Hooray!

What I had not taken into account was the fact that this innocuous test had proven that I was in fact disabled.  It didn't even cross my mind for another 25 years.  No one told me I was disabled.  No one offered me assistance or mentoring, preparing me for what was yet to come.  A lifetime of frustration, anxiety, missed opportunities, a divorce, working in dangerous industries where memory was key.

Now, I'm not bitter, and the reason I am writing this blog is to be informative in hopes to save some other person and all the loving caregivers, the grief of what I encountered.
I have to laugh at myself because I passed that confounded test totally unaware of what passing it even meant.

I am amazed that no one in the medical community caught on, or even informed my parents of what I might be faced with and that I would require some counseling as to better understand my condition.

Some count me as lucky.  I agree however, I am still disabled and have issues that constantly require coping skills to help overcome.

Now the pat answer I often hear from well meaning people is "Don't worry Kev, we all have a habit of forgetting things from time to time."
This statement is meant to console me when they see that I am frustrated for forgetting something.
I know they mean no malice however, they have no clue what it is to forget to a level that I do.
It is the frequency of my forgetfulness that is the thorn in my butt which often causes me high levels of anxiety.

If you have ever forgotten where your kids are or have lost them temporarily in a mall and then realize that I do this every single day with mine, then one gets a greater picture of what it is to live inside my broken brain.

My kids would tell me that they were going to a friends house.  They would tell me and leave.
 Now I had 5 kids aged , 5, 6, 6, 7 and 10.
My wife would come home and ask me where the kids are and I would say they were out.
She would ask where?
I would say, "I don't know."
This is where the panic would set in for my wife and of course for me too.
We learned to reduce this by writing down where they went so that I would not need to remember.

I have lost 8 wallets.
I have lost my Keys a million times.
I have forgotten important meetings.
I have made hundreds of  round trips home to pick up something that I need, like my lunch, the letter for the mailbox, my thermos, or my my tools for work.
I fail to return phone calls and I cannot to this day remember names at all.
I joke that I have been practicing Alzheimer's for 30 years now.

Yes even a minor brain injury, like mine where my recovery was not expected, is still a disability and no matter what you might think is small potatoes in the realm of disabilities, it  is still a challenge that I face each and everyday.

Since I do not wear my disability on the outside in the form of a wheelchair, a lost appendage, where visually one can appreciate the limitations afflicting the disabled person, then one has less empathy and often thinks I am faking it.
 I have been accused of being lazy and had friends think its all in my head and I should have been cured by now.
I feel blessed for being here.  I have fathered and now enjoy grand fatherhood and all of this is to me bonus life.  I do not take it for granted.

Are there days where I am beaten up and get frustrated with myself?
You bet!
Will I ever be cured?
After 30 plus years, it's doubtful.
My brain injury and possibly yours will be permanent.

It is how we learn to accept the new you that becomes paramount to overcoming and mitigating the setbacks associated with your disability,
The sooner both you and the caregiver can accept the new you, the sooner you can build bridges that can help you overcome the obstacles that life will throw your way.
Hopefully, I can point you in the right direction over the next coming weeks and months as I share with you things that worked or didn't work for me but might still benefit you.

Just today, I forgot breakfast.  Yesterday, I went to the grocery store and bought sausages, bacon, and hashbrowns and was looking forward to cooking up a nice breakfast the next day. 
It is 3:30 and I just remembered the breakfast, I didn't cook for myself today.
I got up, had coffee, did laundry, cleaned 2 bathrooms, took the dogs for a walk, went and bought some items for yard work, cut the lawn, washed windows, had a coffee and piece of pie and wrote this blog.  I'm hungry and was considering what I should cook for myself while my wife has been away for the past month caring for her ailing mother.
One thing is for certain, I gain very little weight while she is away.

Sunday, 1 April 2012

Home for the Holidays!

Over the next few days the wait for the stitches to be removed seemed like an eternity. I had a cast placed back on my right foot. It seems it had not healed properly. I got released from the hospital on December 15, 1977. A couple of days later I awoke and scratched at my recently formed scar and a little crusty material broke free. Concerned I walked into my parent's bedroom and said to dad, "I think I have an infection.he looked at me and saw that the entire side of my scalp had ballooned out. Since I had not looked in the mirror I had not seen the disfigurement that presented itself to him. Startled by my obvious situation, dad jumped out of bed and said, "We need to go to the hospital. We got to the emergency and while dad parked the car I checked into emergency. I was wearing a touque when the nurse queried me as to what my problem was. I explained my recent brain surgery and how I thought I had an infection. She asked me to remove my hat so she could have a look. She was quite taken aback when she saw me, and within seconds Dr. Cameron was being paged. It was like a t.v. Emergency show. The page was, "Dr. Cameron to emergency, stat!" Emergency staff grabbed a wheelchair, scooped me up and rushed me into an operating room. Seconds later Dr. Cameron showed up, examined my head. He asked a nurse for some novacain and froze the affected region. Moments later, he grabbed a larger needle and began draining the fluid off my scalp. He ordered up some antibiotics and sent me home. He informed my dad that he would try to get me back into surgery if the infection didn't abate. They felt that the skull would have to be removed. A plastic plate would then be inserted at a later date. Fortunately the infection cleared up, but left a sizable dent in the top of my head. A small price for being here.