“SMILING / EYES”           JANUARY 05   

 

I am a " brain injury survivor ’

I survived a car crash , a six week coma and about a years vegetative state .

I am going to tell you how, I lived through and have now generally recovered from this horrific car crash and severe traumatic brain injury.

My injury still gives me memory and thought processing problems, so I'm going to have to read this to you.

I didn't know when I left work in  December '93 that I would not reach home or live , full time , with my family for 14 months.

On my way home I had a head on car crash. My head and body were  horribly cut and bruised . My arm was badly fractured.

I was also   SEVERELY   head and brain injured.

My wife was told that probably I wouldn't survive the night.

She suffered probably worse than me that night .  I knew nothing !

Brain injuries can happen to anyone at anytime .

A brain injury is a    "permanent"    but needn’t be  a     "static"    condition .

It happens instantly .

One minute you are a person with hopes and dreams for the future and in the next minute, you are fighting to survive.

In a moment your dreams are all shattered . Your hopes are gone.

Then comes the marathon of "relearning" that some people are lucky enough to be able to make.

Others are too badly injured. They survive and simply vegetate.

For me I still found it difficult in 1996 - TWO YEARS LATER  , going to the shops and forgetting what I had gone there to buy.

Or I would get lost in my home town.

Or my memory let me down and I would forget a good friend ’s name in the middle of talking to them.

Or I had a struggle to remember phone numbers I dialled every day.

Or I was too fatigued by my head injury .

(Show diary)

Now I use my diary to remember important things and I am not embarrassed to admit to other people that my memory is badly effected by my injury.

And it was tough when good friends abandoned me because they didn’t feel comfortable around me any more.

 

OHP 1 Title of Talk

Really, I had to re-educate myself and I'm still relearning the most basic things. Even now !

 

It is such a "Long Way Back "

 

OHP 2 Contents of Talk

My talk today will cover the following areas.

First I will tell you the full extent of my injuries . How badly my body and brain were damaged .

Next I will describe my achievements both before and after my injury.

Then I will describe the different aspects of my recovery and the techniques  I use that hide my injury .

OHP3 –  Car Wreck

As I said, in Dec 1993 I had a head on car crash. This is a picture of the remains of my car.

As you can see,  I was lucky to survive. When I was first admitted to hospital , I was barely conscious.

Later I slipped into a coma for 6 weeks.

I was so bad that I had to be put on a ventilater with a tracheotomy  .

I was later helped with feeding , as chewing and swallowing were functions that had to be relearned . I was initially fed through a tube into my stomach. I still have both scars there now .

 

Then, after 6 wks , I  moved into a vegetative state .

I , then , had to relearn how to breathe without the tube which connected me to the ventilater .

I also had to relearn how to use my teeth and tongue to break food down .

I would mix savoury and sweet then eat it all together. Much to the dismay of my family !

I know that in some parts of the World this is normal but I had to relearn Western protocol.

I dribbled constantly  and  was constantly clearing my throat .

I was also completely incontinent which involved me in messy accidents but this didn’t embarrass me as I had forgotten my emotions .

I had to relearn how to re - sequence swallowing, breathing and talking .

When I ate , I couldn’t remember which side to chew my food. I constantly bit my lips and tongue as I’d forgotten where my tongue was and how food had to be moved around my mouth .

When I drank water again my sequence wasn’t correct and I’d choke if I tried eating whilst talking to someone .

It was helped initially by drinking through a straw .

Breathing whilst drinking , still gives me some trouble now , especially if I’m tired.

To give you some idea how strange it felt for me .  Try now writing your name with the wrong hand . Or next time you are eating , put your knife and fork in the opposite hands and chew in an unusual place in your mouth .

You will now start to appreciate how weird every little  thing felt for me and also , other brain damaged people.

I was like a stranger trapped inside my own body .

I was paralysed with only a vague awareness of other people around me .

Then, in early '94 I moved into a vegetative state , with veiled vision and locked-in syndrome.

I had and still have , permanent double vision which I'm learning to live with .

I lay in bed but was unable to communicate. My conscious mind tried  to make sense of things around me.

You could say that this must have been annoying and frustrating but I didn’t feel any of this as I had also forgotten my emotions.

 

OHP 4

I had a loud ringing in my right ear and the muscles in my right side and neck were very sore and stiff.  - ATTENTION DEFICIT HYPERACTIVITY DISORDER together with AUTISM were other conditions that I had to learn to cope with.

Another impairment that I experienced later was DYSLEXIA : that is reading words but not understanding their meaning.

I also , briefly, experienced ASPERGER SYNDROME , that is believing, literally, that when a nurse, said things like "it’s raining cats and dogs outside" I would expect the ground outside to be covered with a layer of cats and dogs.

OHP 5 –  Wheelchair

This is me in my wheelchair in April 1994 shortly after the accident . I didn’t realise that my brain was injured. My belief was that my only injury was a broken arm and that as soon as it was healed I would walk away and be as good as new!

 

However , A BRAIN INJURY IS FOREVER and I had to relearn how to use every sense.

 

OHP 6

I had to relearn how to talk because of DISARTHRIA .

I would slur my words.

Often , when people talk with me , they assume , QUITE WRONGLY that my affected speech is the result of a drink problem .

I cope by slowing down my speech and enunciating each word as plainly as I can .

Later I enrolled in a speech and drama presentation course as a way of looking more normal . 

Another thing I had to relearn was whether my expressions matched my feelings or what I was saying .

Sad – Won Lottery.            

Smile -  Sorry to hear about death of your best friend .

I relearned this by watching other people and copying their expressions.

Movement of my left arm and leg was difficult . I developed involuntary Parkinson type of movements because of motor co-ordination problems .

I used to resemble John Klees in his Monty Python sketches. This is what is referred to as DISPHRAXIA.

It resembles spasticity, which is the more commonly known expression.

My appearance was that I  moved and looked like a man with “disabilities”.

 

In April 1994 , I experienced problems with my PREPRIOCEPTION . That’s sensory awareness of the position of body parts .

To show you what preprioception is , close your eyes and touch the end of your nose with your index finger.

For me, this had to be relearnt as my brain

had forgotten where parts of my body were situated.   

(TOUCH FOREHEAD/CHEEK)

I practiced the correct version of this incessantly and this would be my advice now .

My hypothalmus was also badly affected

which means that , I’m still , never hungry.

If you experience this , I always advise eating regular meals at the right time , as I do .

 

My brain injury has drastically changed

OUR lives forever.

 

 

I refer to our lives as a brain injury typically affects everybody involved with the person injured.

My tip for this is to communicate your feelings and actions . Anybody who hasn’t experienced a brain injury can’t possibly imagine how confused and inadequate you  feel .

Brain injuries are always unique.

 

I had to relearn everything. Movement , expressions and emotions !

 

IT WAS NO JOKE!

 

It always seemed so hard.

 

OHP OFF

 

First I would like to try to give you some

idea what my sense of confusion was like in Jan 1994 . Don't forget I had a damaged brain with speech, lack of attention, balance and memory difficulties.

Please make sure that you have a small book, diary, piece of paper or bunch of keys and that you are working with a buddy.

Now stand and face your chair with your arms outstretched in front of you .

Now stand on one leg. Put your other foot on the chair.

Raise foot on the chair 6 inches and keep it there.

Now, balance the book, paper or keys on your head.

Stretch both arms out sideways.

Look away from your buddy so you don’t have visual contact .

 

Without moving your head, ask your buddy what their full name is, where they’ve come from today and what is meant by dyspepsia?

Now, as I said, what car did the person on your right travel in today, when did their parents marry, what is their name backwards and what disease do they have?

AND , where did I hide my biro ? 

CONFUSED? What Biro ?

Did you find that confusing? Did you remember my original questions ?

No !  Well , that is an idea of how people with even a minor brain injury may feel when asked to do the simplest thing.

Something simple like “pass me the pen please” involves the person with balance problems whilst standing , reaching out , holding the pen , breathing and swallowing  plus eye contact with other interpersonal skills.

At the time I felt like a stranger trapped inside my own body.

You could say I couldn't find my way out but that perception was beyond me.

 

My perception now is that IT WAS REALLY A TYPE OF LIVING HELL ! although at the time I had no idea what the concept of hell was !

 

I was given the chance to create a new Peter with a different character from before.

In my case : I am as you see me.

To my wife : I am a different man.

She knows me better than anybody.

 

In others, there is such an uncontrolled change that the person might not  recognise themselves either.

Yet I’m sure that, if they’re like me, deep inside, they feel the same person as they were before their trauma.

But the relearning experience is such an immense task, that I wouldn’t wish it upon my worst enemy.

 

OHP 7

Now, after my brain injury. When I became conscious again , in 1994 , my first memories were long term and of my young family .

My long term memory even remembered the wonderful views over Lake Victoria from my home in Uganda .  

I , then remembered that I no longer lived in Africa .

Then I remembered my present situation.

Subsequently I began the marathon of my recovery.  -  and I've never run a marathon like this before .

My initial memories of the  rehab.  centre , are of continual dribbling , lack of speech , incontinence and having to rely on a wheelchair for mobility. I could not remember the names or the births of my children .

Yet , in time , I knew, somehow, that most things had happened to me before .

 

I was still convinced that my drive and determination would see me through to a level of recovery that I would be content with.

Then, with positive self-talk and Ann's encouragement  I walked again on a nearby common and became mobile enough to not need my wheelchair. I then had to learn again thorough bathing and shaving.

Again , it’s constant practice with a list of activities. Now I am self sufficient.

 

OHP 8

 

Then, after 14 months in hospital , in February 1995 , I was discharged , even though I still needed help .

 

I was looked after by a visiting Occupational Therapist who helped me to bath and dress : find the way around my own home, how to cook and how to shop.  She put labels on most things and used maps to help me find the way around my home town which was now completely alien to me .

I was still not independent enough to be left alone with our young daughter  .

My rehab. continued with me relearning which items were sold where in the shops in my home town.

My OT wrote lists and I had to practice locating things in  town .

In June '95 , I started attending a local rehab unit in Torquay.

In my discussion with staff at the unit, I learnt that a type of acceptable recovery for me, would probably be a  WHEN occurrence, not an  IF .

For me this was very encouraging but very sad. I wept a lot as I started to realize how badly injured I was .

I found that most people , sadly ,  don't make such a good recovery as me .

From an early stage , my drive has helped my recovery  and I can now appreciate the wider issues involved for a family that includes someone with a brain injury.

Smile       

OHP 9

You can sense my determination to get better by the number of alternative therapies I have tried.

All of them have helped me considerably on my road to recovery. 

 I had oxygen therapy , chiropractic , cranial osteopathy, deep tissue massage, reflexology, acupuncture, reiki healing, watsu, shiatsu, alexander technique, flotation therapy, and positive visualisation.

If I was again brain injured my treatment preferences would be cranial sacral therapy , acupuncture and oxygen therapy . Then I would ensure I ate a  more wholesome balanced diet and I would drink lots of water every day.

OHP Off

I’d like to now demonstrate with a volunteer what it felt like when I was paralysed.

Volunteer? Me lie down when being told off. Then other person lie down and tell me off , No gestures,raised voice or body movement.

 

OHP 10

Realism – I didn’t realize how badly injured I was. I should have been gently told how my brain injury had affected my emotions and  reactions .

Stamina / Fatigue – Nobody explained to me that I would lack stamina even though I put all my effort into recovery.

I became tired very easily – nobody told me that extreme fatigue was a consequence of brain injury.

Speech  and Body Language were all things that I had to relearn – again nobody explained why I had difficulty .

My body language is now generally, OK.

Body language is very important in Communication

“Don’t you agree?”

(Look away when addressing someone.

No, I was talking to you)

Appropriate body language – shake head

when congratulating someone.

 

Appropriateness of greetings

KISS / SHAKE HANDS

 

OHP 11

Relationships – that is how one related to friends , enemies , lovers and family – had to be relearnt .

You don’t punch a lover in an intimate moment !

Sensory Perception – that is temperature , interpersonal relationships , surface texture , noises and smells were all part of the relearning curve .

 Information Processing and coping with multiple instructions proved a challenge but this was helped by writing items down and allowing yourself plenty of time to plan a sequence .

OHP 12

Logical Reasoning was helped initially by writing down and planning each step before reacting .

Temperature control still gives me problems now .

I feel cold in the sun and hot in the snow.

What I do now is overdress and wear thermals . If I am too hot , it is easy to take something off . If you are too cold and you don’t have warmer clothes with you – you’ve got a problem !

My body clock was completely disorientated . I used to feel tired in the morning and wide awake at night .

What I did was rest at the correct times which enabled my body clock to readjust itself .

 

Concentration

Initially I found it impossible to maintain concentration when talking to someone. I was easily distracted by trivial things . Such as the sound of a door closing elsewhere or the rattle of a spoon in a teacup.

What I did when I knew that I had to give someone my full attention was meet them alone in a quiet dark room . Thereby minimising distractions.

Physical Ability - My mobility after my brain injury was always a major problem. To help me, even now , I do a series of exercises every day which are set for me by my personal trainer . Something I would recommend for everyone as they get older . Not just people with brain injuries .

OHP 13

Mood Initially I had major uncontrolled mood swings but this has improved over time . What I found helpful was when I felt angry I’d remove myself from the situation and quietly rationalise my feelings. This effected my personality as I could easily appear an irritable rude person when all I was doing was analyzing my feelings in order that I could communicate sensibly .

Co-ordination and thought processing , initiative and planning were all badly effected due to damage to my frontal right lobe .

What helped was taking time to write everything down and programme my responses .

OHP 14

 

My sense of inhibition was initially vary bad . I would discuss the most intimate details of my marriage with anybody , even the tea nurse ! This was helped by preplanning my discussions and rehearsing my reactions to situations such as meeting and talking to strangers and family friends.

The tone and volume of my voice had to be relearnt as I would speak either  incredibly loudly or very softly .  I had to relearn the importance of the use of volume and tones in conversation.

My tolerance of my daughter ,  was incredibly low initially, but it has improved, as my energy has returned.

I do not, even now, remember her birth for the first two years of her life.

 

I used to think, who is this noisy, demanding child that Ann has brought with her today?

 

 

Organisational Skills

With frontal lobe damage I found it difficult to organise and prioritise my activities.

My strategy is to use my diary and write everything important down . Not easy when you’re writing is affected .

 

Decision Making

I had incredible difficulty in assessing alternatives and making the correct decisions because I couldn’t process the information quickly enough . That's the  "what if" and "but" questions.

 

OHP 15

 

Kaizan

I have found the Kaizan approach absolutely invaluable and one that I would unreservably recommend.

 

The Kaizan approach is a Japanese management philosophy that suggests ‘Step by Step’ continuous improvement.

I found that natural healing slowed down if I became impatient or had unrealistic , overambitious goals. All thoughts and actions had to be forward and positive.

 

Memory

Memory is not just a brain function .

Other senses can and do assist .

 

For example aural memory, visual memory, olfactory and tactile memory. That is, what you hear , what you see , what you smell and what you touch .

Every sense of mine had to be re-educated.

Demonstration?        Long - Short list of Nos

                       Hear then repeat lists

                            Watch then touch items. Feel and guess value coins

                              Smell items.                             

 

 

That demonstrated aural memory, visual memory,  tactile and olfactory memory.

 

In these later years I have maintained steady improvement  .

Gone are the days that my MBA was significant.

Now , I have achieved Adult Learner of the Year for the SW region and an NVQ for presentation skills which is much more relevant.

I have found that if you are positive and have the right outlook , healing does continue.

The NHS couldn't do any more but I have improved tremendously with personal drive and various alternative therapies .

 

OHP 16

In 2000 , my wife was now able to reach the last stage of the Bereavement Cycle of Denial , Anger , Depression , Coming to terms with and Acceptance . She is now able to accept me as her new husband and communications between the whole family have improved .

For me , in Summer 2000 I was still obsessed with exercises .

Even on our 5 day break in the Bahamas , to swim with dolphins , I felt a need to perform daily exercises .

I felt a desperate need to improve.

 

Then in 2001 , I restarted Cranial Sacral Therapy which balanced my energy levels.

I also restarted driving with initial lessons on an off road track  and can now drive carefully locally .

I now feel much more "in control of myself"

I am beginning to feel emotions again.

I feel that I am actually stronger as a result of the accident.

Now , a long time after the accident I have reached the last stage of the Bereavement Cycle and am now accepting my new

self .

I am , content with me as I am  .

 

One of my strongest aims is to regain my training skills and give talks on my disability ,  to others who are involved with other people , struggling with their own handicaps .

 

To achieve maximum healing , I found that , it is essential that one uses and exercises the damaged part of your body .

Strange as it may now sound , I feel stronger now as a result of my accident .

 You must maintain a positive frame of mind and you need maximum love and support from your family and friends.

 

If anybody here is interested , I am very keen to give talks on my experience, anywhere to anyone in order to help the rehabilitation of others who are recovering from serious injury.

 

Everyone , everywhere deserves a better quality of life even if they have a disability .

 

                           PAUSE

 

Reshow OHP 2 Contents of Talk 

 

 

Now, I’ll recap on what I have talked to you about, today.

First I told you the full extent of my injury .

Next I described my achievements both before and after my  injury.

Then I described the different aspects of my recovery and the strategies I’ve had to learn to live with the effects .

 

When I feel down , I always recall what was said by a man in a wheelchair at a conference in Hawaii . His injury was to his upper spine which gave him control only over his upper body .

He said that ,   " while the difficult takes time ,  the impossible  JUST  takes a little longer ."

 

It always helps me to refocus on my disability .

PAUSE

Does anybody here have any comments they would like to make ?