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Peter's Tale from Dartmouth, UK
I live in Dartmouth UK
and have lived through a TBI of which I now am
very happy to give presentations about, provided of course that my expenses
are covered.
My name is Peter Buckingham and I am
going to tell you how , in 1992 I was the
survivor of a very severe brain injury.
My head injury still gives me bad memory
and thought processing problems, so I am
going to have to read this to you.
Serious injuries can happen to anyone at
anytime!
Severe injuries are all different, but they all
have similar effects .
For me I found it difficult in 1996 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 forgot a
good friend’s name in the middle of talking
to them .
Or I had to struggle to remember phone
numbers I dialed every day.
Or I was too fatigued by my head injury
and was not able to do something that I
really enjoyed. And it was tough when my friends
abandoned me because they didn’t feel
comfortable around me any more. I really
had to relearn the most basic
things.
My talk today will cover the following areas.
First I will tell what I achieved before my
injury.
Then I will describe the different phases of
my recovery.
Next , I will tell you my feelings about being
brain injured .
I will also give you my impression of
being in a vegetative state with veiled
vision and locked in syndrome . Then I will
tell you what I was able to achieve after my
injury.
In Dec 1992 I had a car crash . This is a
picture of the remains of my car. I was lucky to survive.
When I was first admitted to hospital in
Plymouth , I was in a coma and paralysed.
I was so bad that breathing and feeding
had to be carried out for me.
Then, after 6 wks , I became conscious and
moved into a vegetative state where I was
aware of things around me but couldn’t
affect them.
Next , I moved into the next stage, with
veiled vision and locked-in syndrome.
Everything appeared to me, as if I was
looking at it through a misty veil, over a
window in a cell yet I was still unable to
affect what was happening outside.
I initially, had to learn again how to
swallow.
Really I had to re-learn the most basic
things.
I was like a stranger trapped inside my
own body.
To give you some idea how strange it felt
for me , try writing your name or cleaning
your teeth with the wrong hand. That's how weird everything felt for me.
I was paralyzed although fully aware.
Then, in early '93 I moved into a vegetative
state where was aware of things around
me but couldn’t affect them.
Then , I moved into the next stage, with
veiled vision and locked-in syndrome.
Everything appeared to me, as if I was
looking at it through a misty veil, over a
window in a small room , yet I was still
unable to affect what was happening
outside.
I was still passive but could not communicate. My conscious mind tried
desperately to make sense of the puzzling
situation around me.
Another condition that I experienced was
Dyslexia, that is reading words and not
understanding or remembering what was
written. I would pick up a book and after
reading the first paragraph have forgotten
the title of the book and the plot .
I, 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.
Also I had to relearn how to talk because
of disarthria, that’s difficulty speaking because of weakness and lack of
coordination of the muscles of speech.
Another thing I had to relearn was whether
my expressions matched my feelings or
what I was saying . Puzzled – Happy?
Smile - Sad?
This is me in my wheelchair shortly after
the accident in April 1993 , with no
knowledge 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 be as good as new!
I also had to relearn how to swallow, that’s dysphagia, which still gives me some
trouble, especially if I'm tired.
My left arm and leg had difficulty
performing voluntary movements because
of motor co-ordination problems. This is what is referred to as dysphraxia. It
resembles spasticity, which is the more
commonly known expression.
I looked “HANDICAPPED”.
In April 1993 , I experienced pre-prioception, that’s sensory awareness of the position of body parts. To show you what pre-prioception is, close your eyes and touch the end of your nose with your index finger. For me, this had to be relearned as my brain had forgotten where parts of my body were situated. Then, I moved into a vegetative state where I became aware of things around me but couldn’t affect them. Next , I moved into the next stage, with veiled vision and locked-in syndrome. Everything appeared to me, as if I was looking at it through a misty veil, from a small window in a cell yet I was still unable to affect what was happening outside.
My hypothalmus was also badly affected which means that, I’m still never hungry.
I just eat at the right time.
I also lost all sense of danger. My fight or
flight mechanism didn’t appear to
work.
My brain injury has drastically changed
our lives forever.
I refer to our lives as a brain injury
normally affects everybody around the
person injured.
Brain injury is always unexpected and can
happen to anyone at any time.
I had to relearn everything. Movement and
emotions!
NO JOKE!
It always seemed so hard. First I would like to try to give you some
idea what I felt like in Jan 1993 with a
damaged brain and speech, attention, balance and memory difficulties.
Please make sure that you have a small
book, diary, piece of paper or bunch of keys.
Now stand and face your chair with your arms outstretched in front of you (and remember, as one physio always said to me,
success in this depends on how hard you try!)
AS IF YOU COULDN’T TRY HARDER.
Now stand on one leg. Put other foot on 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 over your right shoulder. Without moving your head, ask the person
on your left 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?
CONFUSED?
Did you find that confusing? Did you remember my original question? No? Well, that is an idea of how people with even a minor brain injury may feel when asked to do the simplest thing. I felt like a stranger trapped in my own body. I couldn't find my way out.
IT WAS REALLY A TYPE OF LIVING HELL !
I was given the chance to create a new Peter Buckingham 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 recognize 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 so traumatic and such an immense task, that I wouldn’t wish it upon my worst enemy.
Now, after my brain injury. When I became conscious again in 1993, my first memories were long term and of my first wife with my first two children . My long term memory even remembered the wonderful views over Lake Victoria from my home in Uganda. I then remembered my present wife and new daughter. Then I began the marathon of my recovery. My initial memories of Rowans rehabilitation Centre, are of being incontinent and having to rely on a wheelchair for mobility. I could not remember the births or names of my children nor my feelings at the times of the death of my first wife or falling in love with Ann.
Yet, in time, I knew, somehow, that everything had happened to me before. I was completely confused. EG - A nurse from the Ear Nose and Throat Dept. would arrange to see me at 9.00 in the morning. She met me and arranged the appointment, but all that my brain could cope with and remember was that, being a naval nurse. She was wearing a strange uniform . Her taste in perfume was very strong , she was blonde, had small ankles and she spoke with a soft Irish accent. Image me, in my confused state, trying to locate someone like her in Derriford Main Hospital building.
I was still convinced that my drive 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 washing and shaving.
Then, in February 1994 , I returned home.
I still needed help . I was looked after by a
visiting Occupational Therapist who
helped me to bath , find the way around my
own home, cook and shop . She put labels
on most things and used maps for my
town.
I was still was not independent enough to
be left alone with my daughter Suzanne. My rehab. continued with me relearning
which items were sold where in the shops
in my town.
In June '94 , I started attending a local rehab unit in Torquay and met other people who had experienced their own brain injuries. I was lucky that it was only 1 hr from my home and that hospital cars were available for transport. 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. I found this knowledge extremely comforting. I have now regained a more paternal role within my family and I can now appreciate the wider issues involved for a family that includes someone with a brain injury.
Smile
You can see my determination to get better by the number of alternative therapies I have tried. I’ve left no stone unturned! All of them and the therapists who have included some very aware, special people, have helped me considerably on my road to recovery. These have included working with Meir Schneider, a self-healing therapist , who helped me to walk. I also had oxygen therapy which undoubtedly helped my physical healing. Others are chiropractic, cranial osteopathy, deep tissue massage, reflexology, acupuncture, reiki healing, watsu, shiatsu, Alexander technique, flotation therapy, and positive visualization.
As I said, I think that I have tried most things. If I was again brain injured my treatment preferences would be as follows :- firstly cranial sacral therapy followed by acupuncture and oxygen therapy to physically heal tissue damage in my brain . Then I would ensure I ate a more wholesome diet with health supplements followed by colonic therapy to ensure that I ingested maximum benefit from my food.
To demonstrate communication in a vegetative state. Body position is tremendously important when you are trying to communicate. When I was in a vegetative state I could not communicate in any way, yet I was aware of most things around me.
I’d like to now demonstrate with a volunteer what it feels like to be paralysed. Volunteer? lie down when being told off. No gestures, no raised voice, no body movement. Hopefully this has demonstrated what it feels like to be paralysed.
In December 1998, we had a very stressful
time when my Compensation Claim was
heard at the High Court in London. We received a favourable ruling and I do
not now need to work again.
BUT WHAT PRICE DO YOU PUT ON A DAMAGED BRAIN?
It was difficult to move forward until the claim was settled . It emphasized the negative aspects by relating to my "Disability" not my "Ability". The stress was felt by my whole family . It had a ripple effect. At this time it was assumed that I had reached the "Plateau Stage" and I would never show further improvement. These were some of the effects of my brain injury.
Realism.
I did not realise how grave my condition was. In my Veg. State stage I thought that the severity of my injuries was limited to a broken arm. I now realise that a “brain injury” can be a much more severe occurrence than any physical injury. This realisation is a very traumatic event but is part of the healing process. I found that my realisation was very emotional and very lonely. I felt very much on my own.
I often felt trapped inside my body. My disability was not visible or quantifiable. It was a real hidden disability.
Stamina / Fatigue
Chronic fatigue is one of the most
debilitating conditions that I experienced
and when fatigued, all conditions
described today became worse.
My management of this stage got better as
my awareness improved.
Speech
My speech and my conversation were severely limited by the effects of my accident. In my Vegetative State stage, I could not talk but I knew exactly what I wanted to say. Such a complicated neural activity is, still, taking a very long time to repair itself. My body language is generally, OK. Body language is very important in communication.
(Look away when addressing someone. “Don’t you agree?” No, I was talking to you) Appropriate body language – shake head when congratulating someone. Appropriateness of greetings KISS / SHAKE HANDS
Relationships
Relationships with my wife and family were
badly affected, such that I was unable to
act as a husband or father consistently. There was nothing that I could do to
improve this.
Obviously this had very negative effects on
family relationships.
Sensory Perception
At first my balance was so badly affected that I had to use a wheelchair to get around. This is getting better now , but still affects my mobility. It was so bad that I fell over at a critical point in an examination by a doctor, when he was making a report for my court case. I felt that this probably helped my claim but was nevertheless absurd.
Information Processing
I find now that multiple instructions are much more difficult to remember, rationalise and follow. Can you imagine how puzzling train and bus timetables can be?
Logical Reasoning in a Veg.Stage. state
My logical reasoning was also badly affected. Recognition of seasonal temperatures was a problem. I used to feel warm in the winter and cold in the sun. Temperature control still gives me problems now .
My body clock was completely disorientated. I used to feel sleepy during the day and wide-awake at night. It was just like being a young baby again. In 1998 , 5 yrs after the accident , I was readmitted to Bristol Royal Infirmary , wired up with electrodes on my head and observed whilst I slept. This was, again, to check that my sleep rhythms were alright .
Attention and Concentration.
This does not seem to have been affected as long as I ensure that I’m rested and fresh whenever I am expected to concentrate.
Physical Ability
Am now unable to run or move in a quick, purposeful way. This generally improving but is still a problem. I had no idea of balance and am still now learning to walk properly again .
Mood and Personality
I experienced no variability in mood changes. In my Veg.State. stage, I lacked any emotional variability. I couldn’t manage my own feelings.
Co-ordination
At my Veg.State. stage, I was unaware of other people’s needs. My world only included me. I felt only the need to heal myself. It was difficult to co-ordinate family life with my own needs. My need may be to relax whilst their need was to be very active. This produced conflict at what should be have been a “bonding” family time.
Thought Processing
Thoughts are now much slower in arriving at a point of decision, having processed, what are to most people, simple, logical thoughts. At a social drinks recently, I found it hard to contribute to the conversation, because while I was processing the appropriate reply, everybody else had moved on to the next subject. Damage to my frontal right lobe has caused my initiative to be, now much lower than it was. This has drastically reduced my activity level.
Inhibition
Initially, I lacked any sense of inhibition. I would discuss my marital relationship with the male tea nurse. I also spoke incredibly loudly, in a monotone as I had not relearned the importance of the use of volume and tones in conversation. My tolerance of my daughter Suzanne, whom I now love dearly, was incredibly low at the early awakening stage of my recovery, but it has improved, as my energy has returned. I do not, even now, remember her birth or 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. What has helped me is to use my diary and write everything important down .
Decision Making
I had incredible difficulty in assessing alternatives and making the correct decision because I couldn’t process the information quickly enough .
Kaizan
I have found the Kaizan approach invaluable . The Kaizan approach is a Japanese management philosophy. It suggests ‘Step by Step’ continuous improvement. I found that natural healing slowed down if I became impatient or had unrealistic goals. All thoughts and actions had to be forward and positive.
Memory
Memory is not just within your brain. Other senses 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 had to be re-educated.
Demonstration?
Hear then repeat list No's Watch then retouch items
Smell coffee, orange
Feel and guess value coins
That demonstrated aural memory, visual
memory, olfactory and tactile memory.
Over the next two years I achieved steady
improvement which is still now
happening .
Provided you exercise the brain, healing
continues.
The NHS couldn't do any more but I have
improved tremendously with Alternative therapies.
In 2000, my wife was now able to reach the
last stage of the Bereavement Cycle of
Denial, Anger, Depression, Coming to
terms 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 , I felt driven to perform daily exercises . I also felt driven to give talks. I felt a desperate need to improve.
Then in 2001, I restarted Cranial Sacral Therapy which balanced my energy levels. Restarted Driving with initial lessons and can now drive carefully around familiar roads . Felt much more "in control of myself" I am beginning to feel emotions again. Now , 8 yrs after the accident I am also reaching the last stage of the Bereavement Cycle and am now accepting my new self . I am at last content with me as I am . My wife and I are at last recognising that much good has come from my accident .
One of my strongest aims is to regain my training skills and give talks on my disability to others who are involved with people struggling with their own disability. My experience was that the whole healing process was delayed if I failed to succeed due to unrealistic ambitions. To achieve maximum healing, in my experience, it is essential that one uses and exercises the impaired part of your body, maintains a positive frame of mind and that you need maximum 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 understanding of serious injury. Everyone deserves a better quality of life if they have a disability . If I was dispirited , I would re-energise myself by recalling something that I once heard . It was said by a man in a wheelchair who could only control his upper body . He said that , "the difficult takes a little while to achieve but that the impossible takes just a bit longer ." It always helps me to get my disability into focus.
Recap Contents of Talk
Now, I’ll recap on what I have talked to you
about, today.
Firstly, I told you my achievements before
my injury. Next, I looked at what I was able to do after my injury.
Then, I described my experience of
the phases of my recovery.
Lastly, I talked about the typical effects of
my injury .
Does anybody here have any comments
they would like to make? Feel free to use as you see fit, all I want to do is help bi people.
Click here to send John Pistorius your Tale of Survival