Wear Black for Brain Injury Awareness
Hamilton News – Friday, 23 February 2018
With a new brain injury occurring every 15 minutes in NZ it is important that people are aware of the impact brain injury has on the person, their family and the community. Researchers have only recently become aware that problems can persist long after the initial injury occurs.
Four years ago Jane was employed in a job she held for the past 12 and a half years. She was constantly on the go, with a busy job, juggling a career, with a busy home life, two dependent children, sporty pursuits that she shared with her husband, and social activities with friends.
That all changed 4 years ago when Jane became ill with viral meningitis and encephalitis. When her symptoms came on she was initially diagnosed with migraine and vertigo. Jane stayed home but her symptoms got worse including fever, speech difficulty and vomiting. She stayed in hospital for 3 weeks, receiving treatment and her diagnosis was clarified following an MRI scan of her brain. As the result of the inflammation of her meninges (the protective layer under the skull) and the brain tissue, Jane has what is called an Acquired Brain Injury, with long term effects. Jane continued to have follow ups with a Neurologist and was on epilepsy medication to control seizures that she had in her acute stage. This meant she could not drive for a year. The seizure medication added to her range of symptoms of extreme mental and physical fatigue, headaches “foggy head” and her struggle with being forced to slow down.
Jane had hopes that there would be some spontaneous recovery in her brain but follow up scans showed considerable damage to areas that would affect memory, concentration, planning and multi-tasking, and require management of ongoing fatigue.
Jane is a highly motivated person who has always pushed herself to achieve her goals. However, this was a hurdle that would present her greatest challenge. Jane knew she needed extra help and felt she had no clear guidance on what to expect and how to manage symptoms. Jane is not eligible for ACC and was unable to access rehabilitation services normally provided for people with brain injury acquired through physical injury.
A relative made contact with Brain Injury Waikato and they worked with Jane supporting her in her journey to both accepting and finding a new pathway.
“This has involved letting go of ‘the old me’ and learning to live with ‘the new me’, says Jane. “It is an ongoing process”.
Jane is still finding out what she can do without becoming exhausted. Brain Injury Waikato provided her with information about encephalitis and meningitis. They also referred her to a 6 week Memory and fatigue group at the DHB for people with neurological conditions which she found helpful. Jane was able to get some follow up assistance through the Neuropsychologist, facilitating the programme, and with some Occupational Therapist support.
Brain Injury is called the silent epidemic as the effects go largely unseen, but can have long term consequences which impede on the person’s quality of life. Brain Injury does not discriminate, it can happen to anyone.
Jane says comments like ‘you are looking really well’ reflect that people don’t understand. Her condition is invisible and won’t get better like a broken leg.
March is Brain Injury Awareness month and Brain Injury Waikato are working hard to increase awareness of brain injury in the community. They are also celebrating their 30th anniversary and invite people to join them at their Open Day. The theme for Awareness is “black out for brain injury” – you don’t need to black out to have concussion.
What: Open Day
When: 23 March 10:30am to 2:30pm
The event will start with a blessing and people sharing how they have benefitted from Brain Injury Waikato. Cake cutting will be at 11am. People from the public are welcome to show support by dropping in to have some cake and pick up information about Brain Injury Waikato services. Help raise awareness of brain injury by wearing a black shirt on the day.
Brain Injury Waikato – a change of name and a birthday!
Brain Injury Waikato had a name change in December 2016, from THINK! The Head Injury Network for Kiwis. They are turning 30 this year and will have a celebration with cake at the office in March 2018 during the Brain Injury Awareness Week.
A new brain injury occurs every 15 minutes in New Zealand. Brain Injury is called the silent epidemic because it goes largely unseen and the majority of clients deal with the long term consequences of brain injury which impede on their quality of life. Difficulties such as fatigue, memory loss, depression, anxiety, personality and cognitive changes impact on clients in their day-to-day functioning in a wide number of ways, including: slow processing of information, concentrating on tasks, recall of information in a functional manner, consistently planning and organising the day and problems with staying on task, sleep difficulties, poor reasoning skills and judgment that can change the individual dramatically. It is very difficult for others to understand these changes.
Brain Injury has a ripple effect. No family is ever prepared to comprehend the full magnitude of the life changes the brain injury creates. Family members have difficulty dealing with the person who has sustained the brain injury, due to emotional and behavioural problems which jeopardise their ability to hold down a job, and may also result in issues with the justice system.
For example, findings from the Brain Injury Incidence and Outcomes New Zealand in the Community (BIONIC) study, undertaken by researchers at the Auckland University of Technology in the Hamilton (urban) and Waikato (rural) regions (March 2010 – 2011) revealed that at 12-months post injury, sleep difficulties and post-concussive symptoms were reported by 40-50% of adults and children had a nearly three-fold risk of clinically significant behavioural difficulties compared to children free from brain injury.
Edward (name changed), understands the difficulties of living with a brain injury. On the night of Valentine’s Day, 1978, Edward had been partying with his friends in Tasmania. He was a passenger in his car when it collided with an oncoming car with its headlights burned out. Edward does not remember how long he was in the hospital, but he knows that he was in a coma for 13 weeks. His first memory involves a tea lady: “He can talk,” he remembers the tea lady complaining, “but he’s just too lazy.”
The physical effects of the accident were easy for him to see; his entire left side, once dominant, “wouldn’t work.” His more hidden deficits, though more difficult to recognise, became clear to him over time. He could not remember things he had done one hour ago. Edward couldn’t remember his wife, son or brother who had come over from N.Z.
After rehabilitation Edward came back to Auckland in 1979 and realised that, without the physical skills he had lost, his life would be drastically different. According to the specialist he will be institutionalised for the rest of your life. Family was too helpful – Edward didn’t want to succumb to what they wanted to do for him. He moved in with a friend and then later decided to move to Hamilton and bought a house.
It didn’t take Edward long to realise there wasn’t enough done in Hamilton or the Waikato for people who have sustained a brain injury. He went to Auckland and attended a meeting there to look at the kind of support they have. He couldn’t remember much about the meeting, but knew Waikato need a group for people who have sustained a brain injury.
One of the reasons’ being Social Welfare – they would phone and ask for documents, when Edward showed up for a meeting, he wouldn’t have the documents or other papers they asked him to bring because he couldn’t remember it. He used to volunteer at Social Welfare and realised no one had any knowledge about brain injury. Social Welfare wouldn’t or didn’t want to believe he had memory problems as a result of his brain injury, he realised he really needed an advocate.
Edward started the first Support Group meeting in 1983 in Hamilton. They had a big turnout. People didn’t really speak up and acknowledge they had a brain injury – it was sort of a stigma to say you have a brain injury.
The Brain Injury Waikato office was established in 1987, because there was a big need to have someone to advocate on behalf of people who have sustained a brain injury as employees at ACC, social welfare and other government departments had no idea about the problems people with a brain injury experience i.e. fatigue, memory loss, slow processing of information, mood swings and more.
Edward became President of the Society and was on the board for several years. He became the first life member of the Society, and still volunteers where he can.
“It is really good to know the Brain Injury Waikato staff are there when you need support. So a big thank you to Marion and Ella and all those who work quietly behind the lines” says Edward.
Brain injury does not discriminate, it can happen to anyone. Statistics show that those under 35 make up 70% of all brain injuries. A mild brain injury which includes a concussion may have long term effects that are not so mild after all.
Brain Injury Waikato affiliated to the National Office, Brain Injury NZ Incorporated with all the other Brain Injury Associations and Head Injury Societies around the country. In line with this, the Board felt it would be a good business decision to change their name to Brain Injury Waikato Incorporated as it would be a more inclusive name. They remain autonomous and still carry out the business as usual providing services to people and families affected by brain injury.
Brain Injury Waikato have a community based Seminar focused on the many aspects of Living with a Brain Injury for Health professionals and Service Providers and anyone interested in brain injury. This year they are focusing on Children and the impact of brain injury as well as adults. The topics for adults are around the rehabilitation pathway for the ‘whole person’ and a community based rehabilitation model.
This Seminar will give Service Providers and Health Professionals a better understanding of brain injury when working with clients and families whose life has been changed as a result of a brain injury. It will further raise awareness of brain injury and the impact on the person, their family and the community.
This seminar is on 16 June 9.30 till 3pm, Chartwell Room, Hamilton Gardens. Registrations from 8.30am. Another public seminar will be scheduled later in the year for adults with a focus on concussion.
COMMUNITY WAIKATO INTERVIEW
16 May 2017, Community Waikato, FM89
Listen to the podcast of an interview with Marion on Free FM89 hosted by Community Waikato. To listen click the play button on the audio player below.
BRAIN INJURY WAIKATO’S MILESTONE
1 March 2017, Hamilton Press
A brain injury can occur every 15 minutes in New Zealand and is often referred to as the silent epidemic.
The effects go largely unseen and have long term consequences.
But there is support available, especially in the Waikato where a regional advocacy group has just undergone a name change ahead of its 30th anniversary.
Head Injury Society Waikato is now known as Brain Injury Waikato. The change was to make the organisation easier to identify with and would be more inclusive with its national body, Brain Injury New Zealand.
Chairwoman Isy Kennedy said in the beginning people who had sustained a brain injury and their families attended support group meetings, but realised there was a need for an advocate. After discussions, the Head Injury Society Waikato was established.
“June is our Brain Injury Awareness month. We will have displays in various towns, with the cross street banners in Hamilton and Cambridge”, Kennedy said.
Seminars by a range of specialists including Neurologists, Neuropsychologists and professionals in rehabilitation will be organised.
“This year we will also invite people from the public to attend.”
COMMUNITY SPOTLIGHT: BRAIN INJURY WAIKATO – THE HEAD INJURY NETWORK FOR KIWIS’
Hamilton News – 10 June 2016 Edition
Brain injury is called the silent epidemic because it goes largely unseen and in many cases has long term consequences for the person and their family, requiring a wide range of support and medical services. The estimated cost on the health system is $100 million a year, but it is expected that this figure will rise significantly. Brain injuries, including stroke and traumatic brain injury, are the leading cause of disability and death in New Zealand.
However, the real cost in terms of rehabilitation, family impact and far reaching social implications for people whose head injury lasts a lifetime, is incalculable.
Brain injury does not discriminate; it can happen to anyone, anytime, anywhere. Statistics show that those under the age of 34 make up 70% of all brain injuries. The consequences of a mild brain injury which includes a concussion may not be mild at all. (Prof Valery Feigin AUT, 2012
A NEW BRAIN INJURY OCCURS EVERY 15 MINUTES IN NEW ZEALAND.
Brain Injury Waikato The Head Injury Network for Kiwis provides information, support, advocacy, education and raise awareness of brain injury in the community. The goal of Brain Injury Waikato is to increase the awareness and prevention of head injury throughout Waikato.
Brain Injury Waikato has organised a community based seminar focused on the many aspects of Living with a Brain Injury irrespective of the cause. Topics include: defining brain injury, behavioural issues, relationships and coping strategies, working with brain injury in the community. A wide range of specialist speakers including a Neurologist, Neuropsychologist, Senior Research Fellow, Social Worker, Speech Language Therapist, and a panel of family members sharing their perspectives of a person with a brain injury.
This seminar will bring a range of community providers, health providers and people who live with brain injury together to gain knowledge, network and share their experience.
To find out more contact Ella Scheepers, Manager, email@example.com.
Seminar: Living with a brain injury, 24 June 2016, Hamilton Gardens
Join Brain Injury Waikato for their balloon release to help raise awareness for all survivors, and loved ones lost to traumatic brain injury. This event will take place on Tuesday, 28 June 2016 at 12pm at the Brain Injury Waikato office, 11 Somerset Street, Hamilton. Contact Ella on 8391191
BRAIN INJURY – THE ‘SILENT EPIDEMIC’
Hamilton News – June 2015 Edition
Brain injury does not discriminate; it can happen to ANYONE, ANYTIME, ANYWHERE
Did you know a brain injury could change your way of thinking, your behaviour/personality and stop you from going to work, participating in sport or taking care of those you love? June is Head Injury Awareness month and Brain Injury Waikato The Head Injury Network for Kiwis is working hard to increase awareness of brain injury in the community. With more than 36,000 new brain injuries occurring every year in New Zealand (Brain Injury Outcomes New Zealand In the Community study, published in international medical journal The Lancet on 22 Nov 2012) it is important people are aware that brain injury impacts on the person, their family and the community as a whole, says Manager, Ella Scheepers. If you have any concerns after a knock on the head, see your doctor.
PLANNED ACTIVITIES INCLUDE:
Displays with home made baking in Cambridge on Friday, 12th June and Matamata on Tuesday, 16th June.
‘Living with a Brain Injury’ Seminar with the topic Concussion / Mild Traumatic Brain Injury is on Friday, 19th June at Hamilton Gardens. Cost is $75 and all welcome to attend.
‘Hats on Friday” event on Friday, 26th June. Businesses, community groups and schools are invited to participate in this event by wear a fun hat to raise awareness of brain injury. Donations are appreciated.
Contact the Brain Injury Waikato office on 07 839 1191 or email firstname.lastname@example.org for support and information.