Headway-Gauteng

Way back in July 2007 I started writing about how doctors and other professionals can try and predict what the outcome might be for a patient who has suffered a serious brain injury. I started off by discussing the Glasgow Coma Scale which is a universal system that rates the severity of a person’s injury via his ability to open his eyes, move and speak. The more severe the injury, the lower his performance, and the lower the number he is assigned. A low number suggests a very serious injury, and little likelihood of total recovery. In the Newsletter of August 2007 I wrote about Post Traumatic Amnesia after an injury and how it can be used as a guide to determine cognitive outcome within the first year. I said that there was another ‘tool’ which could also be used as a predictor of outcome, which I would discuss at a later stage. This is called The Ranchos Los Amigos Scale of Cognitive Functioning. Developed at California’s Ranchos Los Amigos Hospital, this scale is divided into eight stages, with a gradual progression from deep coma to appropriate behaviour and cognitive functioning. It’s a quick, handy universal shorthand to diagnose and communicate a patient’s level of functioning and can also be used to guide and develop individual rehabilitation programmes. The following is a brief description of its eight stages which is taken from the book “Living with Head Injury – A Guide for Families” by Richard Senelick and Cathy Ryan.

Level 1 – No Response: The patient is unconscious and does not respond to any stimuli. This comatose state can last for seconds, minutes, hours, days, weeks or even months.

Level 2 – Generalised Response: Here the patient will react – but inconsistently and without purpose.

Level 3 – Localised Response: The patient is improving. He will react more specifically to different stimuli, but his response will be inconsistent. For example, he may occasionally turn his head in the direction of a speaker’s voice. He may have a vague awareness of his body. He may inconsistently follow simple commands such as “close your eyes” or “squeeze my hand”.

Level 4 – Confused Agitated: The patient has become very active, but he is not yet able to understand what’s going on. His behaviour might become bizarre; he might cry out or try to remove his feeding tube. He may be hostile and uncooperative, but he is not acting out of malice. It’s a reaction to his overwhelming confusion.

Level 5 – Confused –Inappropriate: The patient has become less agitated; he will respond to simple commands in a more consistent manner. But if the commands are more complex, he gets confused and gives random, incorrect responses. He will not take the initiative. He will respond best to his body’s aches and pains, to his own comfort and to close family members. His memory is severely impaired and he is unable to learn new information. At this level, he is in danger of “wandering off” the ward.

Level 6 – Confused Appropriate. Things are looking up. The patient is motivated, but still depends on others to lead the way toward his goals. His reactions will be more appropriate. If he is uncomfortable he will complain. He is beginning to recognise therapy staff members and is much more aware of himself and his family. He can easily follow simple directions. His memory of the past has improved greatly but his memory of recent events is still impaired.

Level 7 – Automatic Appropriate: The patient seems to act appropriately in the hospital and at home. He is now oriented to person, place, and time in these settings. However, he goes through his daily routines automatically, like a robot. Although he can dress, wash and feed himself independently, he needs supervision to ensure his safety. His judgement and problem-solving skills are still impaired, and he cannot make realistic plans for his future.

Level 8 – Purposeful and Appropriate: At last! The patient can integrate the past with recent events. He is independent and functional in society. However, he may have subtle difficulties with reasoning, judgement and processing information – especially in high stress, unusual or emergency situations. He may be actively involved in a vocational rehabilitation programme, learning a new way to live in his new world.

This hierarchy of levels looks simple and straightforward. But in real life, not every brain injured survivor moves smoothly through each level. A patient may move from Level 2 to Level 4 and never demonstrate any true Level 3 behaviour. Or, a patient may reach Level 3 and never progress beyond that point. Even if your loved one reaches Level 8, it won’t necessarily mean he is exactly as he once was. As mentioned earlier, he will, most likely, be changed in ways that are subtle or not so subtle. To determine these ‘finely tuned” changes medical professionals must turn to other means such as Neuropsychological Testing which I will discuss in further newsletters.

We know families that keep trying and trying to get their brain injured loved one to remember the accident that started it all. They’ll coach their loved one as if the World Series were at stake. But in fact, the majority of brain injured survivors never remember their accident. This has nothing whatsoever to do with their ability to recover. Call it ironic. Call it fascinating. But also, call it normal!

LIVING WITH TEMPORAL LOBE EPILEPSY:
Beverley Samson, one of our members sent me her story about how she lives and copes with Temporal Lobe Epilepsy. In a response to our Questionnaire a fair amount of you requested that we include accounts in our newsletter of what happened to other members and how they are coping with their lives post injury. Therefore, every month from now on I will try and find a slot in our newsletter for these stories. Fortunately I have lots of these on record due to the fact that at one stage we were going to publish a book about brain injury (temporarily put on hold!) and several members sent in heart warming and inspirational accounts. Beverley’s story is as follows -
“A well known saying states that 2 year olds are the "terrible twos". How true! Mother says ‘stop bouncing on your bed’, and the two year old continues to do it with a vengeance! Well I was no different. However, I slipped and bashed my head on the windowsill giving myself a shiner of a black eye. This caused the initial damage and at the age of 12 years, at the start of puberty, I began to get seizures which I still have 40 years later.

The first one was in the December school holidays in 1967. I was standing in my bedroom and the next thing I remember I was in the lounge at the other end of the house. Mom came into the room and when I asked her how I had got there she said she would not accept such cheek from me and I was given a hiding. She had asked me to tidy my cupboard before I went back to school, and I had apparently told her that if she wanted it done to do it herself. I guess I must have thought it, so verbalised it but do not remember any of it!

I matriculated and started working at the Africana Museum (now Museum Africa) in 1975. I worked at the Museum in a clerical post until 31 March 1982. On 13 April 1982 I started working at the Johannesburg Hospital in the Human Resources Department. In 1991 I was promoted to Chief Administration Clerk and by the time I left I had 22 staff from 6 departments for whom I was responsible. On 31 March 2008 I was boarded for ill health for a number of other health problems as well.

My care givers were firstly my parents and siblings, then my friends, one of whom is now my husband Ian Samson. My work colleagues were also amazing in their acceptance of the problem and assisted me with whatever I needed. I was having 27 days in every month where I had between 1 and 3 attacks. In August 2005 I had a Temporal Lobectomy in which the damaged tissue was removed from my brain. As the seizures come from both sides I still have them, but fortunately have experienced a 97% reduction in the number of days on which they occur. As all people with seizures know stress is one of the worst catalysts to spark one.

My motto for life is "get up dust yourself off and carry on". We all have to learn that a seizure is not the end of the world and seeing the injured at Headway is a good way to remind oneself that there are other people who are a lot worse off. I feel we should all be grateful for what we can do and especially thankful for our caregivers. They have problems that we may not even be aware of, so appreciate them folks we are blessed to have them in our lives.”

THANKS FROM ERIC DELMONT:
The ‘dust has settled’ somewhat after what seems like a whirlwind of farewell parties for Eric. He has asked me to include the following –

‘I just want to thank everybody for the wonderful love, support and friendship that I have received from our members, our management, our volunteers and our therapists. I do not know how many thousands of times I have said, or heard, the word LOVE used at Headway. This word is used because it is meant. Although I no longer work at Headway my heart will always remain there. On leaving I was given a beautiful journal and the words within will remain embedded within my very soul. I thank you all for allowing me to be a part of a truly wonderful organisation. The people of Headway taught me the meaning of the word bravery.’

ANNIVERSARIES OF ACCIDENT/ILLNESS:
Success is never final. Failure is never fatal. It’s courage that counts. Winston Churchill.

WELCOME TO NEW MEMBERS:
Headway would like to extend a very warm welcome to Irene and Joel Zeijlstra, and Miles and Patricia Orbell. We hope that their time with us will be happy and fruitful.

GET WELL SOON:
We heard that Barbara Altria, one of our founder volunteers, now retired, was in a nasty car accident, her vehicle having been written off. We are so relieved to hear that you were not badly hurt Barbara, and hope that the bumps and bruises will soon be a thing of the past.

Mike Shilletto, an attendee at Headway, has had a spell in hospital recently. Glad to see you back at Headway, Mike.

We are pleased to hear that Charles McRobert is also regaining his strength having suffered a severe illness with all sorts of complications. The family has really been through a tough time, and we hope that everything will soon return to normality.

THANK YOU TO CLIVE HARDING:
At this point I would like to say a special thank you to Clive who has been a fantastic and reliable volunteer over the years. Clive has now retired and we really miss his input and cheerful presence at our centre. Clive was renowned for his generosity in organising small gifts over Easter and Christmas for the attendees and staff of Headway. Each Christmas gift came with a riddle and in order to receive the gift one had to guess what was inside the wrapped parcel. Naturally this involved a lot of feeling, squashing and shaking of said gift. It was always great fun and even if you didn’t come up with the right answer someone would always help out and the present would eventually become yours. When it came to the running of the Durban July, Clive would get everyone to ‘draw’ a horse and then the first 4 places would again receive a small monetary amount donated by Clive. Somehow or other Clive and I seemed to be in cahoots as I have won this for the last couple of years! Go well Clive and thanks for everything.

KHOMELELA’S VISIT TO THE MONTE CASINO BIRD GARDEN:

On Thursday 24th April 2008 Khomelela attendees, volunteers and therapists took an exciting trip to the Monte Casino Bird Garden in Four Ways.

It was a lovely sunny morning and we enjoyed walking around the beautiful gardens looking at different kinds of birds. Some of us even spotted snakes which we were unfamiliar with, such as anacondas. After our walk, we made our way to the amphitheatre for the show. The show was awesome and we watched the birds following instructions, flying to music and entertaining the audience. The attendees fell in love with a Vulture called Mohoholo which means “The great one” and he certainly lives up to his name!

We then had tea and sandwiches at the tea garden with everyone chatting excitedly about what we had just experienced at the show. And then, because none of us had ever been in one before, we made a quick detour to see what happens in the Casino, before making our way home.

We all had a wonderful time and would like to thank our therapist Jackie Fabian who organised this outing.
Thembela Mbalukwane

REPORT ON THE IMPLOSION:
Everyone at Headway knows that the Nomads Gauteng have taken us on as their ‘charity of choice’ for 2008 in order to raise money to buy a wheel chair-friendly vehicle for our Khomelela/Alex branch, something that is going to assist our project most significantly. It is such an honour for Headway to have been selected by these amazing Nomads - men with big hearts and so much goodwill to give, and we marvel at the energy and enthusiasm that they put into helping us and other people in need.

The Nomads have planned several exciting fund raisers for us over the year, two of which have already taken place. The first in April was The Barnyard Boma – a real ‘blast from the past’ of sixties music to get us all rocking, and a great afternoon was had by all who attended. The second event which took place just recently was the viewing of the implosion of two buildings in Braamfontein.

One early Sunday morning a huge crowd who had bought tickets for this event, gathered on the balconies of the UJ campus in Braamfontein. First we were served platters of the most wonderful snacks with coffee and tea on the side (there was also whisky and milk for a few who needed to steady their nerves.) This was followed by an auction for the privilege to actually ‘press the button’ to ‘blow down the buildings’. The generous dad of an ex St. David’s boy, Nicholas Berti, outbid everyone else, and Nick, kit out in a hard hat, went off very seriously with the engineers, to do the deed. The ‘countdown’ then came over the public address and in the words of Mike Gahagan, chairman of the Nomads fund raising committee, ‘It was an occasion when time just seemed to stand still for a few brief seconds. If only we could have had a ‘kykweer’!’ The actual explosion was a most surreal experience that sent shivers down one’s spine and within a couple of seconds Baamfontein had a new sky line.

We are eternally grateful to Mike and his wonderful team of guys for their plans to raise this significant amount for us this year.
June Cruickshanks

NEW PATRONS OF HEADWAY:
Headway has been looking for some time for a ‘patron’. Someone who is well known and would further our cause in the outside world. We are both excited and proud to announce that Gareth Cliff and Ntombi Masilela have agreed to be patrons of Headway. Everyone knows Gareth from Radio 5 and of course he is a judge on Idols. Ntombi is one of ‘Gareth’s Girls’ (his official ambassadors) and is the first black female rally driver in South Africa. We are sure that amongst other things she will really be able to help us in our endeavours to promote safety on the roads. Gareth and Ntombi were at our last Christmas function and Gareth has talked about Headway on his programme on several occasions. We thank them both so much for becoming involved with our organisation, and we are sure that with their help Headway will be raised to even greater heights. Gareth has already put a link on his website about Headway – go to www.garethcliff.com It is a brilliant website.

THANKS FOR DONATIONS:
In last month’s newsletter I mentioned that Headway was using a fair amount of photocopy paper. The next day I got a call from Anthony Stein to say that he would donate 6 boxes of photocopy paper as a birthday present for Louise. Thank you so much Anthony this will keep us in paper for quite some time – and ‘Happy Birthday, Louise!’ I hope that after all that you did get a proper birthday gift.

We thank all of you who continue to donate groceries, with a special thank you to our stationery suppliers, Office National, and to our volunteer Margie Lockwood who donate boxes of biscuits on a regular basis. Margie has also donated some beautiful hand knitted jerseys which we are going to be given to homeless people with the blankets which have been made with the squares knitted by our attendees.

Thank you to Lana Ackerman for her donation of a treadmill. This is taking pride of place in our small ‘gym’ at the moment, and is used to supplement exercise programmes for our attendees. I even had a ‘go’ on it the other day. However, being unused to such appliances (exercise not being my forte) I switched it on ‘very fast’ by mistake and shot off the other end, much to the amusement of Gloria, our domestic helper.

Thank you so much to Debbie Lea of Airport Media for the generous donation as well as Momentum Life. Headway would not be able to keep running if it were not for the support of organisations such as these.

Thank you to Woolworth in Hyde Park who continue to donate food for our Outreach Programme, Khomelela in Alexandra.

FOR SALE:
Walker (which is height adjustable, with a seat), Exercise Cube, and Blue Exercise Ball. All these items for only R600. Please phone Nettie Kotze on 079 820-7934 or (011) 682-1838 for more information. When I phoned Nettie to confirm her details she told me a horrific story. Her house was broken in to. Her husband was murdered in front of her and her brain injured son severely beaten. She was then raped and also badly assaulted. This has resulted in her having no option but to sell the house and place her son in a home. She will therefore no longer need the above items.

QUESTIONNAIRES:
Thank you to all those who have taken the time and trouble to complete these questionnaires and return them to us. We have decided to extend the deadline to the end of June, so please if you haven’t done it yet, take some time out to fill this in. We did include a stamped self addressed envelope - no excuses about the price of postage will hold water! So far most of the comments have been complementary but we are certainly gaining insight into where we could improve our service. One thing that has come out of these questions is that nobody seems to know that we actually have a website! Go to www.headway-gauteng.org to check us out.

MEMBERSHIP ACCOUNTS:
The membership accounts have gone out this month. Unfortunately because of the increases in just about everything, our fees have had to go up. Our membership is now R120 for the year ending March 2009, and there is a voluntary donation of R20 to our Chairman’s Fund. (This fund was started by our Chairman, June Cruickshanks, specifically to help disadvantaged members with things such as transport costs and medication.) Please let me know if you no longer wish to be a member of Headway in order that I can take you off the mailing list. If there are financial reasons for not renewing your membership please also let me know as sponsorship can easily be arranged.

NEXT MEETING:
The next HFC meeting will take place on 29th May 2008 at 6 pm at 85 1st Road, Hyde Park and will take the form of a general discussion between those attending. Friends and family are welcome to attend and a snack will be served after the meeting.

Thought for the Day:
"The illiterate of the 21st century will not be those who cannot read and write, but those who cannot learn, unlearn, and relearn." - Alvin Toffler –

I wrote about moms in the last two newsletters so thought I would give men a chance now.

Why do men die first? This is a question that has gone unanswered for centuries, but, now we know -

First: If you put a woman on a pedestal and try to protect her from the rat race ... you're a male chauvinist. If you stay home and do the housework ... you're a pansy. If you work too hard ... there's never any time for her. If you don't work enough ..... you're a good-for-nothing bum. If she has a boring repetitive job with low pay ... this is exploitation. If you have a boring repetitive job with low pay ..... you should get off your lazy behind and find something better. If you get a promotion ahead of her ... that is favouritism. If she gets a job ahead of you ..... its equal opportunity.

If you mention how nice she looks ... its sexual harassment. If you keep quiet ..... its male indifference. If you cry ... you're a wimp. If you don't ..... you're an insensitive bastard. If you make a decision without consulting her ..... you're a chauvinist. If she makes a decision without consulting you, ..... she's a liberated woman. If you ask her to do something she doesn't enjoy ... that's domination. If SHE asks you ... it's a favour.

If you appreciate the female form and frilly underwear ..... you're a pervert. If you don't ... you're gay. If you like a woman to shave her legs and keep in shape ... you're sexist. If you don't ... you're unromantic. If you try to keep yourself in shape ..... you're vain. If you don't ... you're a slob. If you buy her flowers ... you're after something. If you don't ... you're not thoughtful. If you're proud of your achievements ... you're full of yourself. If you don't ... you're not ambitious. If she has a headache ... she's tired. If you have a headache ..... you don't llove her anymore. If you want it too often ... you're oversexed. If you don't ... there must be someone else.