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NEVER THE SAME PERSON AGAIN

"LIFE" CONTINUES: DIFFERENTLY !

While I was in the hospital trying to remember details of what happened to me with little success, my wife kept an upper lip acting like I looked O.K. ! But, when I was finally strong enough to go downstairs to the children's visiting room, the first sinificant signs of emotional troubles for ME and my children showed up.

€ They had great difficulty looking at my still disfigured face and that bandage ! The black and blue complection was scarey to them and their uneasy behavior showed their stress !
• Those ten days in the hospital I had no therapy nor recognition that my injuries were more than "a bump on the head" !

Soon after I was discharged I returned to work as a public relations manager for a major paper company facility in town. I even drove to and from work. BUT, I was still far from easy to look at and I wore a neckbrace for my badly twisted neck muscles. Physicial fatigue as well as emotional fatigue plagued me daily for months --- again, not medicially attended to !
€ Every day and nearly every action was difficult -- BUT, I do not think even I was really aware of it at all . My superiors were cooperative and there was no concern expressed when I would come to work late or leave early when I could not function. My family TRIED to understand my sudden mood changes and I think everyone felt it would go away as I "healed".

I DID NOT ! My undiagnosed/untreated "BRAIN INJURY" was still --- "JUST A BUMP ON THE HEAD" !


 FIRST SIGNIFICANT OUTWARD SIGN

ABOUT SIX MONTHS after the accident the "break" finally came !

€ The mill nurse's office was across the hall from mine. It was her habit to bring me a cup of coffee in the morning if I was to busy to come to the 10 a.m traditional coffee break for our section of he adminstration building.
• This one morning I did not show up so she came over with a cup of coffee. Only my door was locked shut, My secretary, who knew my schedule of coming and going, etc., had no idea where I was. It was not me to leave my office without telling her where I could be contacted.
• They banged on my door repeatedly, No answer ! After noontime, the nurse caled my wife who also had no idea of my where-abouts !

• Neither did I {And I still do not know !}



Shortly after 4 p.m., I walked into my house not speaking my wife and headed up to my bedroom, slamming the door behind me .
• A few minutes passed and Kay came up to see what was wrong with me. She found me on the bed in a fetal position crying hysterically. The doctor was called and I was prescribed a knock out pill to calm me down.
• The next day he had me see see a nuerologist at a Vermont medical facility. After extensive testig he determined I was suffering from post traumatic syndrome from the accident. NOT, brain injury !

• After several visits and after Kay related how beligerent I was getting to be more and more with the family especially and most often after a stressful day at work -- he decided I needed now to see a psychiatrist for mental/emotional problems. NOT, brain injury !
› Months of visits would produce temporary results. Then the psychiatrist dumped me as the insurance payments were not coming in fast enough ! While under his "care" I was a passenger in the same van when another driver missed a curve on a narrow country road....rolling over several times. We all were able to escape with bumps and bruises...except me !

• The emotional problems get worse !


THE STRUGGLE GOEs downhill !

Relationships with my family began to fall apart as we reached a point NO ONE wanted to be in the same room with me. The kids were in tears when I would blow my cool because they laughed to loud. I would break out in tears at the dinner table tryig to hold the anxieties in -- then yell and leave the table and hide in my room. Everyone was in tears !

€ My work went spirialing downhill. I would forget more and more even the most minimal tasks. Reports were not done -- even though I said I knew I did them. One day my secretary found out why when I had to leave the office for a meeting and she got a call from corporate headquarters asking her to check if I had sent this sensitive one. She checked my file drawer in my desk where I routinely put "to do" stuff on a priority basis.
• To her horror the drawer was full of "missing materials" that I said I had done. I didn't remember them being there !

Finally the expected came about. The company's patience ran out and a servance was agreed upon !
€ My career was over ! I was a nobody for the first time. "Friends" increasingly abandoned me, my family ! Finances eventually were gone ! After all -- there were still bills to pay and food to buy ! Few offerred to help !
• I was changed and there became less and less that could handle the "new me !

• Then it came ! We went on public assistance -- WELFARE ! So we could eat, stay warm, and get medicial help !

€ I ended up in the county mental health program where a small but bright light emerged . No, not the psychitrists. None of the overworked ones were really any good. If they were they would be in private practice making bigger bucks !
• It came with the psychologist who was assigned my case. Months of dedicated hard work -- especially on his part kept finding dead ends. Medications the "doctors" prescribed {they tried them all} eventually made me a zoombie.
• The psychologist even had me (willingly) take a five-week "visit" in an excellent mental unit program where I did make some progress. But, the crippling drug were exchanged for "better" ones ! BUT, shortly afte I return home and back into the mental health care the bad drugs came back as well.


€ Again I lost ground.
€ One day my psychologist was at a meeting with other county professionals in other agencies -- some doing work with retarded clients. There was this gal who had done her masters on "BRAIN INJURIES". She told him I was one of "THOSE" !
• Soon she was my therapist when she transferred to mental health and for a long time there was considerable progress. I went on Social Security Disabilty which opened the door to my wige getting part-time work as Deputy Village Clerk. Things began to improve somewhat after my therpist had many tests done that confirmed my emotionial situation problems were basically from being "BRAIN INJURED" compouded by too many years of being misdiagnosed...and improperly treated especially by the type of drugs that were used that harmed rather than helping me improve.

€ BUT, her own life was being challenged by a divorce slowly crept into her treatment and when I realized her approach was distancing me from my wife even further {and the kids}, I quit the program and went cold turkey on my drugs. All were flushed down the toliet in one big burst !
• You know ! I began to think for myself -- I could now without drugs blocking that ability !


BRAIN INJURY ASSOCIATION

TO THE RESCUE !


THERE IS LIGHT AT THE END OF THE TUNNEL


† SHE WAS INITIALLY AN ANGEL

THEN

A FRIEND
€ THE LIGHT at the end of the tunnel grew even brighter when Kay and I joined the New York State and National Brain Injury Associations.
• We helped form a Support Chapter in our home town with the assistance of a wonderful lady. She worked from her home for the state association helping form local support groups. The units were run by its own members who were brain injury survivors, their families, friends, and interested people who were often medicial professionals.

• Kay was the chairman. Me -- well, I seemed to generate into a so-called "counselor". I say that only the actual brain injured people know what it is all about better than anyone else.
• And operating under the same principle as "AA", we found that only a brain injured person can help another brain injured person in a very special needed way.

• It seems "WE" can gain the confidence of other brain injured better. The same is found with survivor's family members. AT the same time, it is important not to separate sharing of views between the two classifications !

€ It works !

• There were both family members and brain injury survivors from nearly all age groups involved. Remarkably we all gained alot just sitting around a table expressing our feelings from each others perspective. Some survivors were in lesser stages of injury like me to a couple that had more serious problems.

• BUT we all had one thing in common:

BRAIN INJURY CONCERNS !

• And that made the UNIFYING difference !

• Being able to share how a brain injury affected each one of us also enabled us to realize we were not alone in this problem. Thusly, we helped each other immensily in a most positive way.


THE COMMONS !

€ Yes, we all had a lot of things in common ! One that seemed to affect US ALL was the LOSS OF "FRIENDS" It seemed it did not matter if you are a survivor or family member, this affected US the most generally !

• Afterall, the brain injured person does not act the same anymore. Why, you never knew what some of US would say or do. Or, how "stupid" we would appear if we had a panic attack in a car even when it was just a normal near miss . And God, the survivor would forget what we were talking about. WHO wants to put up with that ?
• In our group, no one noticed or cared !

§ Isolation is a horrible treatment, especially when OUR intelligence is about the same, but we JUST have some varying degrees of coping emotionally !
• When "friends" who used to call on you are seen, say even in church, avoiding US, the known isolation hurts, hurts, and hurts !

• In our group -- it did not happen !

€ I do not mean to imply that everyone acted this way towards the survivor and/or family. Some acted exactly the opposite: they went too far out of their way to "accomodate" US !
• That can have a similiar effect as isolation does !

Just treat US as you would anybody else -- JUST THE SAME !

PLEASE !


PROFESSIONAL INFORMAION

The following in his section and the next page is taken from publcations of various brain injury organizations !
MILD BRAIN INJURIES

€ MILD BRAIN INJURIES are fraught with misunderstandingings and confusion. Although much attention has been given to severe and moderate brain injury during the past years, the development and scuitiny of diagnostic and treatment protocols for symptomatic mild brain injury (Head) has lagged) {*It has improved lately !}

• The criterias used to classify mild brain injury maybe indeed be the root of this shortcoming. While many patient who sustain mild concussions recover without complaint, emergency room staff have yet to perfect a consistent measure effective in identifying those who may suffer neuorbehavioral and somatic sequelae. Some reply on clinical signs; others pass judgement on evidence of organic damage. Relevant diagnostic criteria is greatly debated.

€ Without clear parameters for those at risk, the patient population can not be served effectively !

• We must wait for urgently needed advances in research to provide definitive answers to the questions of classification and treatment protocols.


• {Personal note:} PLEASE look at so-called MILD concussions and/or head injuries in a more serous vein instead of later finding out it is : NOT JUST A BUMP ON THE HEAD !

.  
YOU CAN HELP A BRAIN INJURED'S RECOVERY


† † † HELPFUL SUGGESTIONS

IN RELATING TO A

BRAIN {HEAD} INJURED

FAMILY MEMBER/FRIEND & RECOVERY


{NOTE: There is increasing evidence that a brain [head] injured patient in a coma is more aware of what is taking place in the room than previously believed.

OFTEN the patients body language reacts to negative things taking place like words, noise, activity, etc., adversely affects them and/or their recovery.

The SAME negative things CAN also cause negative effects when the brain injured person is NOT in a coma and for the rest of OUR lives. To this day and to a lesser degree that is often based on the stress level at the time, I am adversely affected by noise as an example, Crowds - loud types of noise - to many conversations taking place in the room -- etc.

However, the ability to cope has greatly increased in my case as time goes by !

The following WILL help you deal with the brain injured persons ability to "recover" ! They will do wonders for ALL brain injured !}


† † † THE HELPFUL SUGGESTIONS

I]

{a} Speak of familiar names, places, interests and experiences the patient has had in the past.

{b} Talk about what is happening at home, your day at work, etc. NO bad news !

{c} Use familiar photos of family, friends, pets.

{d} Give the patient things to hold that are of different textures -- flannel, silk, etc.

{e} Take the patient outside when possible !

{f} Play the radio for awhile, at other times the T.V. !

{g} To help the patient, provide a calendar and clock - one without a sweep hand is best !

II} AVOID FRUSTRATION:

€ Stimulation is needed but to much can be frustrating. The patient is thinking in slow motion. Too many people talking at once or too much T.V. is very difficut for the mind to think about. If the senses are overloaded the patient may "short-circuit" and Ή "SHUTDOWN" or ² "explode", cry or become combative. If this happens, provide a quiet enviornment to let the patient rest !


KEEP CONVERSATION SIMPLE
€ Communication is important to the patient. Although the patient may not be able to speak,, the should be kept in as normal a social enviornment as possible !

a} REMEMBER the patient is thinking in slow motion.... speak slowly as it takes the patient a long time to process what is being said and how to respond. Use short simple sentences.. Give them a chance to respond..Present only one idea at a time.

b} Try to include the patient in every conversation. Do not talk over them or down to them. They will become frustrated causing withdrawal or rebellion. Do not speak as if they are deaf. Unless this was a pre-existing condition, generally a hearing loss does not accompany a brain injury.

c} Ask simple questions: i.e., where is_,Point to_,show me_ !

d} Ask affirmative rather than negative questions...."Do you want a drink ?" is better than "Don't you want a drink ?"

e} Do not ask questions that require the patient to make a choice !

f} Encourage the use of appropriate greetings and social exchanges.

g} Do not tease or encourage the patient to respond inappropriately.

h} Allow the patient to search for the word THEY want. However, give them the word before they become completely frustrated or gets the wrong word which is better than for them to practice mistakes. Patients need successes in order to try. Sometimes it is better to change the subject rather than to pursue a response beyond the patients frusration tolerance level !

i} Support and encourage speech efforts. For instance, if the patient begins "I want to...", it helps to repeat the phrase since in searching the next word, the patients may have forgotton the first ones.

j} Ask the patient to name things on his tray, in his room, say what he is doing. [Sometimes they will have to repeat after you and give clues --when needed.]

l} Remember the patients inability to find a word to express themselves does NOT MEAN THEY HAVE LOST THEIR INTELLIGENCE OR KNOWLEDGE !!!

m} Speak to the patient as you would any reasoning adult

n} Do not under any circumstaces put the patient on dislay or force them to speak. Such remarks as "say it for them" may upset or embarass the patient.

o} Do no ridicule or insist that te patient give accurate responses, correct pronounciation or "talk right". There is nothing the patients wants more to do than to just that

p} Ask direct questions requiring a simple "yes" or "no" rather than those requiring complex answers.

q} encourage gestures and talking with hands when ever and if possble. Tell the patient to describe or show you what they mean, frequently this will enable the to say the word itself.

r} Be prepared for bizarre, inaccurate use of language and for swearing. [Such responses are very common in brain injure persons. Accept this WITHOUT amusement or anger. Help by providing the ciorrect word without display or emotion.]

s} Do not over-estimate the patients capability to uderstad what is said to them.

t} Do not act like you understand when you do not !

u} Do not talk for the patient unless absolutely necessary.

v} DO NOT use sarcasm or abstract jokes with the patient. They are very concrete and wil take everything you say literally.


KEEP IN TOUCH WITH THE REAL WORLD
1} Do not join in fantasies or repetitions. Do no scold if the patient talks of imaginay things. However, do not act as if you see or hear what they are imagining. Say, "You may think you may see (xxxx) but they are in Pittsburgh !

2} When the patient repeats themselves, tell them so, but talk to them in a matter of fact way.


ATTITUDES:
A} Do not overwhelm the brain injured with false optimism or empty words as "you will be alright ••• you will go back to work in no time."

B} Do not compare their speach, language or physical abilities prior to their brain injuries with those of their present condition. Look ahead, not back, and help the patient to do he same.

C} Be generous with approval of appropriate behavior, immediate feedback and reinforcement are necessary.

D} Do not laugh at the patient. Laugh with the brain injured when it is appropriate -- be careful to make sure the understand your laughter ! Often the patient is NOT able to know what is really humorous.

E} A patient may laugh or cry easily -- seemingly without reason ! They may be embarrassed by this uncontrolled behavior. Suggest another activity until they calm down.

F} The patient may "perform" inconsstently. Do not scold, tease or reprimand the brain injured when they cannot perform a certain task although you may have seen them do it previously. This can be discourging and may cause the patient to lose interest in making an effort.

G} The patient may be unable to control bowel and bladder functions. Do not scold for this.

H} Avoid making the patient feel guilty or like a baby for mistakes and accidents such as spilling something.

I} Remember that no patient's problem is exactly like anothers so avoid making comparisons.

J} DO NOT ARGUE with the brain injured. This is exhausting with them and may increase anger and resentment.

K} By your mannerisms, patience and attitude of acceptancd, create an air of relaxation. Avoid direct expressions like "relax".

L} DO NOT rely on what the brain injured patient says they can do--BE SURE ALWAYS THAT WHAT THEY DO IS DONE SAFELY AND MOST CERTAINLY "ALWAYS" CHECK WITH THEIR THERAPIST !

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