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H E A D W A Y  G A U T E N G

Dedicated to assisting brain injured people and their families
MARCH 2008
Dear Members

Did you know that 42 people are killed in road accidents in South Africa every day and 25 South African’s are left disabled for life every day?  Are these horrific statistics not enough for us to make sure that we drive responsibly?  By doing so, although our family may be in the midst of the trauma that is brain injury, we can make sure that it will never happen to anyone else.  I know that before my daughter had her accident I was unaware of how many people suffered brain injuries as a result of car accidents.  When I heard of someone surviving an accident I tended to think ‘thank goodness they are still alive!’  I even had no idea when a brain injury was mentioned, what it actually entailed!  It is, therefore, up to all of us who belong to Headway to educate the public as far as we possibly can.

To this end Headway is making sure that we are going to be as proactive as possible on 20th March, which has been declared TBI (Traumatic Brain Injury) Day on the Health Calendar, and our fundraiser Elaine Blanckenberg has acquired a wonderful donation from Multichoice to screen 3 sixty second promotional adverts about Headway on DSTV during the month of March.  These will be beamed into the homes of millions of people who will thereby be made more aware of the life changing consequences of this devastating injury.  The public will be asked to play their part as well, by sms’ing donations to Headway, and hopefully we will be able to raise some funds for our organisation.  A big thank you to Graham Pfuhl, the Marketing Director of Multichoice, and to Emsie and her crew from DSTV who came to Headway and Khomelela to make us film stars for the day.  A special thank you must go to Elaine for all her hard work in acquiring this donation.  (I have included a copy of the DSTV Schedule and you will be able to pick up what times these ads are going to be shown.)

As I am discussing the implications of road accidents and brain injury, Headway would like to send condolences to the family and friends of Ashley Callie (the actress who played Lee Barker in “Isidingo”) who passed away in February having suffered a brain injury as a result of a car accident.  Our thoughts and prayers are with them at this sad time.  Unfortunately, Headway has details on file of so many of our members who have died from their injuries, and each and every one of these people was a film star in the eyes of their loved ones.

FEEDBACK FROM THE MEETING ON 24TH JANUARY:
Tamsyn Bernath, was the speaker at the HFC meeting on 24th January.  Her talk which was entitled Perception and Awareness/Denial of Deficit was as follows –

How many of you leave the house without looking in the mirror at all?  Why do we do this?  From a young age we are primed to be aware of what people around us think of our appearance and behaviour.  We are taught to conform to certain social expectations and norms, eg don’t leave the house in your pyjamas, speak to people in a polite manner, don’t take other people’s belongings, don’t burp in public etc.  After a brain injury the inherent awareness and understanding of these social rules is disturbed and sometimes lost altogether.  Certainly then, one should expect to be perceived differently if one is going to behave differently?
Some of the information to be shared tonight was gained at the Neurological Rehabilitation Conference from Professor Oliver Turnbull and some was sourced from various books and articles.  I am also going to ask you to share some experiences that you may have had and to ask questions and make comments at any time during the talk.

Firstly, I’d like to briefly define the concepts in tonight’s topic:

Perception:  understanding, appreciation, the concept formed of you by others, their grasp of you and how they ‘judge’ you.

Awareness:  attention, cognisance, consciousness, insight and interpretation (of your impairments).

Denial:  contradiction, disagreement, ignoring, refusal and rejection (of your impairments).  Denial feeds delusional beliefs and defences that limit successful rehabilitation and is seen after a wide range of brain lesions.  Denial is a psychological defence or adaptive mechanism to catastrophic loss.

Acceptance:  Acceptance implies engagement and commitment of the self and is the key to programme engagement or therapeutic alliance in the rehabilitation process.

Each of the above processes relies on decision making to a greater or lesser extent.  Some of these decisions are more natural and automatic, whereas some require conscious rational thought.  The emotional systems of the brain play a central role in the highest forms of decision-making and therefore damage to these systems can lead to devastating consequences in the personal and working lives of the brain injured person.  The person may seem cognitively functional yet may make catastrophic decisions within his/her daily life.  These emotional systems are housed in the ventro-mesial frontal cortex.  It is safe to say that close to 90% of the brain injured people in this room sustained damage to the frontal region of the brain, whether as the primary injury or as a secondary repercussion and whether the injury was defined as minor or severe.

The phenomenon of denial of deficit is most common organically in those patients with right hemisphere brain damage and, more significantly for this group tonight, in patients categorised as having suffered ‘minor’ brain injuries.

Dr Murray– ‘The Walking Wounded’
Only 10-14% of survivors of brain injury have residual deficits so severe that they cannot return to normal lives.  However, the ‘walking wounded’ are those survivors that look ‘normal’ but display disabling consequences of brain injury in their personalities, thought patterns and behaviours.  Only more recently have the subtle effects of brain injury come to be better understood.  These subtle effects include restlessness, irritability, impatience and social isolation and it is possible to show changes in these brains even when they appear grossly normal and major functions have improved well and quickly.  It is in such cases that there is the greatest potential for denial and incorrect perceptions, as the person appears to have recovered fully.

It has been found that most members of the family separate emotionally from the injured person between 1-2 years after the injury and this in itself is a form of denial in order to help the family members lead what they perceive to be ‘normal lives’.

Thomas Kay – ‘Unseen Minor Head Trauma’
In Kay’s study too it was found that there was gross ignorance and neglect of the long-term consequences of minor brain injury ie where the injured person made a quick medical recovery and was discharged home without any need for formal rehabilitation.  These patients appeared relatively fine until they had to resume their responsibilities at home, work or school.  When they did so, they experienced a great amount of difficulty.  Doctors were unable to find anything wrong and they were accused of either having psychiatric problems or of malingering.  Why is this relevant to perception and awareness of deficit?  Well, Kay found that one’s sense of self is more severely affected after a  minor brain injury that a severe brain injury because the deficits experienced after a minor brain injury are unexpected and not obvious/apparent to anyone else.  Thus, without appearing or feeling any different, the injured person cannot function to the same capacity as before and suddenly cannot cope with his life, job, family etc.  Consequently confidence is lost and self doubt ensues which is not only less accurate, but far more counterproductive than self-awareness.  The breakdown of one’s sense of self following a minor head injury can lead to 1) failure, depression and the fear of going crazy, 2) conditioned anxiety, 3) rigid denial and lack of awareness and 4) psychiatric imbalance.  Kay suggests that denial and lack of awareness are the most debilitating of these syndromes as they allow few opportunities for change.  Denial or lack of recognition of deficits can be twofold – organic denial and neglect and psychologically defensive denial with refusal to accept feedback from others (exacerbated by the rigidity of thinking resulting from the brain injury).  In these cases repeated failures are common as are changes in personality that are distressing to the family and often result in stand-offs.

They found that the most effective treatment in such cases is a combination of 1) identification of the problem, 2) support – which is no doubt why you all continue to attend HFC, 3) neuropsychological rehabilitation and 4) psychological accommodation and adaptation to the problem.

Good self-awareness and a clear and accurate understanding of how one is perceived by others are difficult concepts to grasp with or without a brain injury.

Cooley and Lemert provide a vehicle for self understanding in the ‘Looking Glass Self’ where people are mirrors and reflect the images that others project into these mirrors.  1) The imagination of our appearance to the other person. 2) The imagination of his judgement of that appearance. 3) Some sort of self–feeling, such as pride or mortification.

They suggest the following : I am not what you think I am, I am not what I think I am, I am what I think you think I am.

A suggestion as to how to improve one’s perception and awareness is to foster and cultivate sensitivity to the thought of others – responsiveness to new attitudes, values and judgements – in the close and intimated interactions of the primary group.

Here are some experiences of people with brain injuries and their descriptions of their self-perception, awareness and acceptance of difficulties.

‘The acceptance of self’ was written by the victim of a motor-bike accident in October 1985.  He says that it was in rehab that he realised for the first time that other people did not view him as ‘normal’.  He said: “I was given a new, unwanted self, one that was labelled not normal”.  This came as a huge surprise to him as he felt no difference in himself.  His self-perception and the perception of a significant other had undergone enormous changes.

Robert Rheaume “From a Patient’s Perspective’
Robert was involved in a severe car accident in 1980.  This is what he had to say about 18 months after his accident:  “I weighed 170 pounds, no longer had trouble walking, and I had my new teeth.  I felt like a celebrity, walking around smiling and thinking ‘wine women and song, here I come!’  I thought I looked pretty good, but had trouble getting dates with girls I had known before my accident.  They had decided I was handicapped.  But that barrier didn’t last too long.  I decided all I had to do was meet new girls.  When disabled people accept and realise the harsh realities of being disabled, they accept the fact that they may never be 100% normal again.  They accept that things other people do with ease will always give them trouble.”

Tamsyn ended by saying that although you may not be the same person that you were before that is not to say that you are a ‘lesser’ or ‘worse’ person than before.
Thank you Tamsyn for this very informative and enlightening talk.

ANNIVERSARIES OF ACCIDENT/ILLNESS:
“Success is the ability to go from one failure to another with no loss of enthusiasm.”  Winston Churchill.

Faizal Ayob                             2000                Chris Herold                           1998
Stephan Benade                      1999                Martin Hill                              1979
Ari Bert                                   2004                Robert Horn                            2005
Nicky Scholtz                         2000                Dennis Kane                           2003
Michael Clark                          1998                Byron Knott                            2002
David Coulter                         2007                Bonginkosi Mposula               2005
Sylvia di Ciccio                       1995                Dylan Prinsloo                        1998
Richard Eales                          1996                Lawrence Wahl                       1999
Warwick Finlayson                 2007                Gia Webb                                2002

WELCOME TO NEW MEMBERS:
A big welcome to the following new members to Headway.  We will do everything possible to give them assistance and support.
Alberto Carrizosa and his fiancé Megan Petersen, Deborah and Harold Nowitz, Anele and Adriaan Robertson, Ian and Beverley Samson, and Pieter and Dalene Strydom and their son Pieter.

FAREWELL TO DEON LOMBARD:
Deon Lombard who was injured in a car accident in 1989 is one of the founder members of Headway and has been attending an activity day at Hyde Park since its inception.  Unfortunately, because the family have encountered major traffic problems in order to get to Hyde Park (they live on the West Rand and have to go through approximately 11 suburbs to get here) they have reluctantly decided to stop bringing Deon to Headway.  We are really going to miss Deon’s helpful and loving personality and cheerful smile, and we wish him and his parents Hansie and Mary Ann all the very best for the future.

CONDOLENCES:
Headway sends deepest sympathy to the family of Kevin Botha who passed away on 13th February.  He was injured in a car accident in June 2005 and never really regained consciousness.  Kevin was a very talented sportsman with colours in 4 sports at school, but his real love was Rugby and Water Polo.  At his memorial service, friend after friend paid tribute to him, which proved what an impact he had made on so many people, both young and old.  We especially commend his mom, Lyn whose faith and positive attitude never wavered throughout the ordeal of his injury.

Our sincere condolences also go to Maureen, wife of Walter Mkize who passed away recently after a massive seizure.  Walter was a very popular attendee at our Outreach Group, Khomelela, at Alexandra Clinic and will be sadly missed.

GET WELL SOON:
Lucky Makotedi, one of our volunteers, is recovering after a car accident, and Carolyn, another volunteer, broke her shoulder when she fell off her horse.  We wish them both a speedy recovery and look forward to seeing them back at Headway soon.

MEDICAL EMERGENCY BRACELETS:
We have done some research into these bracelets, and have established that they should be worn by any person on chronic medication, and especially if that person is a diabetic or suffers from seizures.  The cost is very reasonable, starting off at R87 for a stainless steel bracelet with a R49 levy per year.  If you would like more information on how to go about getting a bracelet, please contact me (Ann Coe) on (011)442-5733.

HELLO AND GOODBYE:
A party was held at the end of February at Headway to say farewell to Tamsyn Bernath.  Tamsyn started off being a student Speech Therapist at Headway and then became part of our therapy team, eventually taking on the position of Head Therapist in 2006.  Although Tamsyn looks like a ‘slip of a girl’ she is extremely clever, having a Masters Degree in Speech Pathology, and she proved to be a very capable therapist.  For the past year Tamsyn has also been part of our Executive Committee which has been responsible for the daily running of Headway.  Her contribution has been invaluable in all respects.  Tamsyn has taken up a post as lecturer in the Speech and Audiology Department at Wits University.  This is a favourable career move for her as she will be able to do her PhD as well.  Fortunately we are not losing touch with Tamsyn altogether as she will bring her speech therapy students to Headway in order for them to do their practical work.  Although we will miss her terribly, we wish her everything of the best for the future and look forward to basking in reflected glory when she becomes a Dr!

Luckily we have been able to employ a team of three very capable therapists who will look after the daily requirements of Headway’s group therapy.  These young women will be known to most of our attendees as they are part of Headway’s team of therapists at the moment.  This will obviously ensure that no continuity will be lost.  They are Michele Cahi (Occupational Therapist), Karyn Casey (Speech Therapist) and Jackie Fabian (Occupational Therapist).  We welcome them to Headway in their new capacity and hope that they will spend many happy years with us.

CONGRATULATIONS:
The stork has been busy again and we send special congratulations to our volunteer Janet Graham and her family, on the birth of a grandson.

NOMADS GAUTENG “ANDREW MENTIS ENDOWMENT FUND COMMITTEE”:
We are extremely honoured to be taken on by the Gauteng Nomads as their charity for 2008.  The “Andrew Mentis Endowment Fund Committee” will be raising funds by holding golf days, theatre evenings, a race day and even attendance at the implosion of a building!! to raise funds in order to buy us a wheelchair-friendly bus for Khomelela (our outreach programme in Alexandra).  At the moment our attendees at Khomelela have to rely on an expensive and unreliable taxi service in order to attend therapy sessions, so you can imagine that this will make a huge difference to their lives and ours.  Our grateful thanks go to Mike Gahagan (chairman) and his committee, for selecting our organisation and we wish them a successful year of fundraising.

THANKS FOR DONATIONS:
I continue to be astounded by the generosity of so many people, as we receive donations, both in cash and in kind, on a daily basis.

This month I would like to thank Macsteel, The Hermann Olthaver Trust, The ABSA Trust, Gold Reef City Resorts and the Assore Chairman’s fund for their very generous donations.

Our Headway offices are now ‘super cool’ because we have wonderful air conditioners.  A big thank you to Emile Cahi (husband of our therapist Michele) who donated these.  We are enjoying being cool so much that we are planning to have air conditioners fitted in the therapy room as well.  Watch this space!!

We thank Izzies Pub and Cues Pool Clubs for filling their Headway tins and Dylan Prinsloo who made sure the tins were returned to us.  We have acquired a new stock of money tins, so do come in and get yourself one to put in your favourite shop.  If your tin is out there somewhere in the big wide world please don’t forget about it.  Bring it in for us to swell our coffers!

CAREGIVERS LOOKING FOR A JOB:
These two caregivers come highly recommended by Lyn Botha, both of whom were trained at Selwyn Segal home.  Wilson has also been trained by Lynn Fernhead (Physiotherapist) to do physio exercises.  Wilson – 083 576-2634 and Zandile 083 362-5532.  Phone Lyn Botha on 082 437-0800 or (011)702-1423 if you require further references.

DO YOU NEED THESE ITEMS?
Portable suctioning unit – which you can use when you are brushing a patient’s teeth.  A hospital bed (without a mattress), a wedge (used to put under a bedridden patient’s legs).  Please phone Lyn Botha for more information – 082 437-0800 or (011)702-1423.

A hydraulic hoist and a shower chair – contact Andrea 082 901-9629.

EMPLOYMENT:
Amanda (one of our brain injured members) is looking for a job as a junior bookkeeper.  She is fully qualified.  If you can help, please phone Amanda on 082 699-6677.

KHOMELELA NEWS:
We have decided to have a slot in our newsletter to keep you updated about what is happening at our Outreach Programme in Alexandra, Khomelela.  Thank you to Thembela Mbalukwana (Manager) for writing this report and keeping us updated with the latest news from Alex.

Kohmelela was given an opportunity to talk about Brain Injury on Alex Community Radio (Alex FM) on Monday 3rd March, because March is “Brain Injury Month”.  I gave the talk and spoke about the causes, signs, symptoms and behavioural problems associated with Brain Injury.  I also spoke about the referral systems, the role of the Therapists and the services which are offered at Khomelela.

Walter Mkize, one of the first members to attend Khomelela when it was initiated passed away on 25th February.  Six attendees and I went to the funeral in KZN on 1st March.  We left Johannesburg on Saturday morning at 6 o clock and stopped in Montrose for refreshments, arriving at Walter’s house at approximately 10:45 am, where the mourners were waiting for us.  Ali Mbala paid a tribute to Walter on behalf of the attendees.  The family members, especially Maureen, Walter’s wife, were very appreciative that we had made the effort to attend the burial.  We all arrived back safely in Johannesburg at about 6 pm.  We thank Headway Management for making it possible for the Khomelela members to go to KZN to pay their last respects to Walter.

Joy Gexa, one of our attendees was filmed by the DSTV crew together with the attendees.  Her story will be part of the Headway promotional adverts on DSTV.  Joy was a professional dancer before her injury and when she came to Headway she couldn’t walk or talk.  She is no longer using a wheelchair as she can walk and stand on her own.  She dances for the group, her speech has improved a lot and she now speaks with confidence.
Thembela Mbalukwana

NEXT MEETING:
The next Headway Friendship Circle meeting will be held on 20th March at 6:00 pm at 85 – 1st Road Hyde Park.  Friends and family are welcome to attend.  A light supper will be served after the meeting.

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Editor and Compiler:  Annie Coe

Thought for the day:  “The brain is a wonderful organ.  It starts working the moment you get up in the morning, and does not stop until you get into the office”.  Robert Frost

WHY GOD MADE MUMS:

Brilliant answers given by 2nd grade school children to the following questions:

Why did God make mothers?

1. She’s the only one who knows where the scotch tape is.
2. Mostly to clean the house.
3. To help us out of there when we were getting born.

How did God make mothers?

1. He used dirt, just like the rest of us.
2. Magic plus super powers and a lot of stirring.
3. God made my mum just the same like he made me.  He just used bigger parts.

What ingredients are mothers made of?

1. God makes mothers out of clouds and angel hair and everything nice in the world and one dab of mean.
2. They had to get their start from men’s bones.  Then they mostly use string, I think.

Why did God give you your mother and not some other mum?

1. We’re related.
2. God knew she likes me a lot more than other people’s mums like me.

What kind of little girl was your mum?

1. My mum has always been my mum and none of that other stuff.
2. I don’t know because I wasn’t there, but my guess would be pretty bossy.
3. They say she used to be nice.

What did mum need to know about dad before she married him?

1. His last name.
2. She had to know his background.  Like is he a crook?  Does he get drunk on beer?
3. Does he make at least R10 000 a year?  Did he say NO to drugs and YES to chores?

Why did your mum marry your dad?

1. My dad makes the best spaghetti in the world.  And my mum eats a lot.
2. She got too old to do anything else with him
3. My grandma says that mum didn’t have her thinking cap on.

Who’s the boss in your house?

1. Mum doesn’t want to be boss, but she has to because dad’s such a nut.
2. Mum.  You can tell by room inspection.  She sees the stuff under the bed.
3. I guess mum is, but only because she has a lot more to do than dad.

What’s the difference between mums and dads?

1. Mums work at work and work at home and dads just go to work at work.
2. Mums know how to talk to teachers without scaring them.
3. Dads are taller and stronger, but mums have all the real power ‘cause that’s who you got to ask if you want to sleep over at your friends.
4. Mums have magic; they make you feel better without medicine.

What does your mum do in her spare time?

1. Mothers don’t do spare time.
2. To hear her tell it, she pays bills all day long.

What would it take to make your mum perfect?

1. On the inside she’s already perfect.  Outside, I think some kind of plastic surgery.
2. Diet.  You know her hair.  I’d diet, maybe blue.

If you could change one thing about your mum, what would it be?

1. She has this weird thing about me keeping my room clean.  I’d get rid of that.
2. I’d make my mom smarter.  Then she would know it was my sister who did it and not me.
3. I would like for her to get rid of those invisible eyes on the back of her head.