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Making Headway is published byInsideThe Neuro-Rehabilitation Strategy? 2Telling Tales: Joan’s Story 3Making the Most out of Community Living 4To The Top of the World 6ABI Ireland’s Community Based Neuro-Rehabilitation Services 8Rehabilitation of Executive Function after Brain Injury 11

Spring/Summer 2013 Edition

MAKINGBringing positive change in the lives of those affected by Acquired Brain Injury

Spring 2010 Issue

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Making Headway is published byInsideIntroduction to Spring/Summer Edition 2TBI – How Technology Helps 3Headway on Air –Radio Course 6Falling Through the Net - Shane’s Story 7Mark Barry’s Story 9New Pastures 10Research Round-Up: Apathy 11

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Welcome to the Spring/Summer Edition of Making Headway

May is the European Month of the Brain. It also coincides with the Irish presidency of the

European Council. To mark the occasion, we have some reflections of a European nature from Kieran, our Chief Executive. Headway will also be hosting a number of events during the month (see the back page for more details). In this edition, we also have features on the benefits of technology, the experience of returning to work and some stories from the Headway centres around the country.

I do hope you enjoy the magazine. Your comments are always welcome to me at stablesr@headway.ie

Happy reading!

Richard Stables, Editor, Making Headway

I recently attended a meeting of the European confederation of BIF (Brain Injured and Families) with colleagues from agencies from all over Europe. Whilst it was heartening to identify with the struggles of other countries, it is no great comfort to me to know that specialist services to people with brain injury across Europe are patchy, scarce or non-existent despite the

prognostications of the World Health Organisation.

At a basic level, the reasons brain injury survivors are not well provided for in Europe are,1. It is acquired suddenly2. Brain injury is not always diagnosed at first

presentation3. The medium and longer term consequences

across the life spectrum are not fully understood4. The nature of brain injury makes it hard for injured

people to speak for themselves5. Parents, carers, partners are fully employed in

caring with emerging consequences.

People with disabilities and advocacy groups across Europe are looking to the UN Convention on the Rights of People with Disabilities (CRPD) as an instrument to redress inequities and enhance their rights to be included in society.

Article 26 of that Convention requires that:

“States Parties shall organize, strengthen and extend

comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services”

Ireland is one of the last three countries in Europe not to ratify the UN Convention on the Rights of People with Disabilities.

Speaking at a recent European Disability Forum (EDF ) meeting in Dublin EDF President Yannis Vardakastanis said “ holding right now the EU Presidency, Ireland should take the opportunity and ratify the CRPD, which is the first international human rights treaty that the EU itself has ratified”.

As Irish citizens we must continue to press our public representatives to ensure the Government ratifies the treaty.

For Ireland to do this, we have to abide by the sprit as well as the letter of Article 26. Funding for community brain injury services in Ireland started from a very low base yet it continues to be subject to unilateral funding cuts. Unless this situation is reversed, people with brain injury in Ireland will continue to suffer through lack of access to vital services where they are most needed.

I look forward to the day when we can proudly say that, in Ireland at least, Brain Injury is no longer the “Cinderella” service.

Kieran

A Message from the Chief Executive

Front Cover picture: Front Page Images: Clockwise from top left: 1) Richie Reeves (staff), Tom Griffin, and Ray Keane from Headway Limerick at the Neurological Alliance Lobby day in Leinster House 2) EU Brain Month logo 3) The Neurorehabiltation Manifesto, published by the Neurological Alliance 4) Bantry Bay by Mark Barry 5) Staff from West Dublin Access Radio along with Gillian Teague (staff) and Derek Cross from Headway

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My AccidentLast September, I was cycling home from work and I collided with a Luas tram. Of course, I knew nothing about it. When I woke up two weeks later, all I had, or so I thought, were sore ribs.

In reality, I had been in a very serious accident. My appreciation of my TBI only occurred about one year afterwards. When I was a patient in the National Rehabilitation Hospital I would think, “There are a lot of sick people here – so why am I here?” This is very typical after a TBI, where your brain will subconsciously minimize the injury that you have - from a sense of survival.

Initially, there were quite a number of issues that I had to deal with - which I am still continuing to deal with and probably will do for a long time to come. The most significant one for me was damage to the frontal lobes of my brain, which has caused profound changes both for me and my family.

Now I have a very low tolerance to stress and I have memory issues and also difficulty in organising myself. This also is a very common experience for people who have suffered a TBI.

What I want to do in this article is explore some of the uses of technology that have enabled me to really just get through the day. It’s not a magic wand; it’s just something to enable you to have the capacity to do other things as well.

My MemoryI am certainly aware of a reduced ability in my working memory and short-term memory. For example, recently I was looking after the kids and my youngest, Jess, told me she didn’t have any homework. My wife later asked me why Jess didn’t do her homework but I just couldn’t remember (it was a legitimate reason thankfully!). Every day this happens - I will not be able to recall something that I said earlier.

What has remained intact is my semantic memory and episodic memory. Semantic memory is memory

for things like the information I learned in college. For example, I know what the mantle of the Earth is made of (peridotite). Knowing this is of no benefit at all to my life currently, but I still know that fact!

My episodic memory, my memory for life events, I feel is strongly intact (though my wife would sometimes worry that it isn’t). I have regained life memories of my children and their childhood, which is something I didn’t have a year ago in the weeks following the accident.

Organising myself has been affected by changes to my procedural memory. Procedural memory is the memory of how to do things: like make a dinner, or drive a car or plan activities - things that are quite high level in terms of execution. This is where I find technology is very, very helpful.

My strategies1) Being organizedBeing organised helps my memory. In researching this article I came across the statistic that the average person can keep seven things in their head at one time, plus or minus two. For every additional thing that you remember something else has to leave your memory. When you’ve suffered a brain injury that capacity to remember those seven things at one time is reduced. So I need to be more organised and I need to write everything down. I need to write it down once and use it often.

2) Having information in one placeI have to store information in one place so I know where it is. This means that things are always available for me to get things done. I use a calendar for most things and the calendar has reminders that automatically come up. I put in my daily tasks like daily chores, things like: are the beds made? Are the windows opened? If I was to be relied on for these tasks to happen, they just wouldn’t happen. So I have a reminder that comes up and I can check that it’s been done. I’m not stressing about it, I’m not using up cognitive energy in trying to recall it, I know my calendar will remind me at the appropriate time. It’s very simple but it’s essential to

The Impact of Traumatic Brain Injury (TBI) – How Technology HelpsI wanted to write an article on something that’s been very helpful for my recovery from a Traumatic Brain Injury (TBI). It’s also something that’s linked to my previous life, because having worked in Microsoft, I use technology quite a lot and I find I’m using it a lot more now to help me following my TBI.

Making Headway Spring/Summer 2013

By Martin Perry

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get through the day, to be participating as an active member of the family, which is what I’m trying to do.

Everything goes in my own calendar. By going onto my own personal calendar on my Smartphone it isn’t on bits of paper or a notice board, it is all kept in one place where it won’t be lost.

3) Breaking down large tasksIf I have a larger task, I break down that task into smaller bits, so I’ll actually be able to complete that task, chunk it and then move on.

4) Getting it in writingIf I’m talking to someone about things that have to happen and they tell me verbally, it will disappear from my memory. So I ask for a text message or an e-mail to be sent - so I can follow up on it. And this even applies to my children! They understand the situation, they realise it doesn’t define me, it’s just something that dad needs to remember something, otherwise it will not happen. So everything has to be written down for me and captured in some sort of system with the technology.

5) Those important numbersI have a file of important numbers that lives on my phone, for example, it might be PIN numbers, it might be the Eircom account number, or it might be the password for the Amazon account. Everything I might need is in this one file, and it’s not scattered around the place, so I have access to it. So someone can ask me a question and I can access the information, I haven’t captured it in my head because that has reduced capacity, but I know where it is kept.

6) My journalI suggest that people recovering from brain injury keep a journal. It can be very revealing when you read in, say, November a thought that you’d had in August and you go: “Wow, things have moved on!”

After the first year following injury, which can be dramatic in terms of recovery, the rate of progress can become very incremental, so a journal is very useful in keeping track of improvements.

How I arrange my TechnologyAll the information I need is kept in one place – the Cloud. It also needs to be accessible anywhere I am at any particular time. I rely on having a Smartphone at all times, but the information is also linked via a cloud-based computing system to a computer.

I have my own computers at home I can access, but if I’m ever away, I can still access that file of important numbers or my calendar and be able to have that information to hand. The information can be accessed from anywhere I happen to be, reducing the cognitive effort in having to remember things.

The system has to be easy to use or it won’t be done. There has to be a payback from the effort required in capturing that thought. Only if this payback exists will the system get used so it’s got to be really easy to use.

And the information has to be everywhere, so it’s not

The “Cloud “ is the

Internet where all

the vital data is held.

Devices such as

laptops, tablets and

smartphones connect

to this cloud through

an application which

ensures that data is

kept synchronised

across all the devices

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Making Headway Spring/Summer 2013

actually device-centric. This is for a very good reason: since August, I’ve managed to lose two phones and break one phone! Even when this happens, I have been able to know that the information I had captured was available in the cloud. In spite of having no Smartphone for a period of time, I could survive for a number of days by accessing the information and calendar from a PC, and that when I got a new Smartphone I could quickly synch to the information and be up and running again.

The cloud based system is illustrated in the diagram opposite. I have a laptop, a tablet PC and phone all linked to the Cloud, and this information is freely available and easy to access at all times. All I need in this situation is a Hotmail ID and access to the Cloud through a system called SkyDrive. You can capture all your notes and calendar event on a Smartphone and it’s automatically synced between the PC and Smartphone.

There are other technologies out there, such as Google Drive, iCloud, Dropbox, Evernote SugarSync from other providers apart from Microsoft. It’s all readily available and it’s all free.

This does enable me to be fairly confident in remembering things. I’m not saying I am at a level which is acceptable, but it’s a lot better than not using it at all.

Using a system to capture information and calendar events eases the burden on the cognitive effort to memorise items. This means that the mind of a TBI

recoverer is freed up to be present and attentive to the current situation.

So if I have things to remember, by storing them in a system that is accessible, I can then concentrate on, and be present in the current situation.

Thank you.

We would like to say a huge thanks to Harvey Norman in Waterford, to all their wonderful staff, especially Ian O’Connell, Tony Quinn and Shane Morgan who did a Fundraiser in aid of Headway. Thanks also to Jean O’Connell .

On Easter Monday, Earls Well Riding Club in Cork held a charity fun ride in aid of Headway. They raised the sizeable sum of €1500. Julie Slattery accepted the cheque that evening from John Crowley from the club on behalf of Headway and we express our gratitude to them. Congratulations to Headway Day Rehabilitation Service client Brendan Clark for his piece in “Panorama” Community Magazine. The article focused on Brendan’s artwork, some of which has

been on display in the “United in Colour” Expo.

Thanks to Luigi Malone’s in Cork for making our annual client outings very special. We really appreciate all the hard work. The food was delicious and we will definitely be back!

Thank you, Thank you, Thank you

Headway’s Julie Slattery and John Crowley from Earls Well Riding Club

Cloud Computing – Beginners Guides

Confused about Cloud Computing? You are not alone! Try these articles and internet links to help demystify the topic.

There are good basic introductions at• http://www.dummies.com/

how-to/content/what-is-cloud-computing.html

• http://vm-associates.com/2011/07/21/definitions-dummies-cloud-computing/

Or for for more detail, the Wikipedia article at • http://en.wikipedia.org/wiki/

Cloud_computing...is very good.

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Headway on Air –Radio CourseEarlier this year, West Dublin Access Radio (WDAR) nominated an innovative Headway/WDAR joint project for the prestigious STAR Awards 2013 (Showcasing Teamwork, Awarding Recognition) organised by AONTAS the National Adult Learning Organisation. Headway’s Rehabilitative Training Officer, Gillian Teague looks back on the successful project and talks about how it came about.

In 2011, I had met West Dublin Access Radio (WDAR) Assistant Producer Eugene Bollard who told me about a FETAC course that the radio station could deliver to Headway trainees. The course was an Introduction to Community Radio. It covered interviewing skills and recording and how to produce a show and present it. The idea was that at the end of the course, the trainees would produce a radio show which would be broadcast.

I thought the course represented a great opportunity for our trainees, so I approached them to see what the interest was like. Very quickly, I had six willing participants. We agreed that the theme of the radio show would be about each trainee’s personal story to do with their brain injury.

And so the training course commenced for one morning a week. We rotated the location between Headway Clondalkin and the WDAR studio in Ballyfermot Civic Centre. Our trainer was Frank Phelan and I co-facilitated.

It was the first time that WDAR had delivered training to people with brain injury, so Frank and I had to tailor the program to suit the learners’ needs. The group really enjoyed the training in the radio studio and we completed the course in the Spring of 2012.

This course was a challenge for some of the participants as some of them were very conscious of speech difficulties as a result of their brain injury. They had to participate in a live on air radio interview and participate in a pre-recorded radio interview.

But achieving these tasks brought real benefits. It helped towards rebuilding their self esteem and confidence. The course also built on Literacy skills and helped with integration into the local community.

In December 2012 the Headway Dublin trainees received their Level 4 FETAC Certificates in Community Radio.

Unfortunately we didn’t win the overall award, but we are so proud to have been shortlisted from 115 projects to the Leinster final and it was great recognition for both WDAR and Headway.

Thanks to the participants: Kay O Brien, Deirdre Hoey, Derek Cross, Gary Kelly, Terry O’Neill and Mujidat Jabar and also to the staff at West Dublin Access Radio.

Back: Gary Kelly, WDAR, Frank Phelan, Terry O’Neill, Trainer Gillian Teague (Headway) Front: Derek Cross, Kay O’Brien

Limerick FETAC Awards10 trainees in Headway Limerick received FETAC major awards in a special awards ceremony that took place in the Clarion Hotel on March 15th. These awards were a result of two years hard work by clients on Headway’s FAS funded vocational training programme. During the ceremony, current vocational training clients gave an insightful presentation on the variety of modules they

participate in as part of the programme.

Headway client, Tom Griffin (pictured), speaks about what the day meant for him. ‘The day was excellent.

It was such a joy and honour to get the award. We all worked very hard to achieve these awards, so to share that achievement with family and friends was very special’.

Well done to all who received awards on the day.

Tom Griffin (Headway) and Maureen Ryan (FAS)

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Making Headway Spring/Summer 2013

Falling Through the Net - Shane’s Story Not everyone’s recovery from brain injury goes smoothly. Shane describes his experience of an early return to work following a head injury, which was the start of a painful journey of self-discovery.

Up until March 2007, my life’s path seemed to be going in the right direction.

I had passed my Leaving Certificate with honours and obtained a degree in science from Sligo IT. Taking the advice of my project mentor and college lecturers, I gained a wide variety of experience throughout the different areas of the “Environmental Science” course until I eventually obtained a position as Environmental Technologist with a well known Irish food company.

The horrific car accident I was involved in, in March 2007 has been the biggest life altering event of my life. All things considered I was extremely lucky to make it out alive, which above everything else I am incredibly grateful for.

I won’t go into the accident in great detail, but it was an incident in which I was found unconscious with a large laceration to my skull and face along with cuts and bruises all over my body. The sheer pain and physical condition I was left in was unimaginable.

I come from a hard working family background. While I was at school, working on the farm and in the shop had stood me in good stead. It made the multitasking of both college and work relatively easy. The attitude to work that I grew up with was instilled into me right from the start. I knew that I had a bare determination to overcome any obstacles in my path – and failure at anything I put my mind to was never an option.

After my car accident however, coming to terms with what I had just been through and what it would bring was to be a hard blow for me, my family and friends.

About a week and a half after my release from hospital the phone calls began. My employers needed to know when I would return to work. I don’t think I knew how much stress I was under and my family were keen for me to move on with my life and pick up the pieces. I put my faith in my parents’ opinion and the attitude to work that they had instilled in me, so I decided to try and face my issues head on.

However, unbeknownst to myself or my parents, I was clearly still suffering severely from the aftermath of the head injury I got in the accident. In this condition, I don’t think anyone realised the struggle which I faced when returning to work was suggested. The shock and disbelief of the situation I found myself in was only the beginning of a very lonely isolated and painful number of years ahead.

My coordination and ability to focus had changed. My mind was unable to function with the number of tasks I was previously able to deal with. Trying to cope with work duties as well as trying to deal with ongoing physical and mental constraints was really difficult.

My employers did understand that I needed help. I had difficulty remembering things, so they set up reminders and checklists of duties that I could use. But I found concentration difficult and social situations at work difficult. I remember thinking every time I found myself in a group situation that I needed to get out, needed an exit – I wasn’t comfortable around people. I did also make mistakes due to lapses in concentration.

I remember other people saying to me that I didn’t look well, and that I shouldn’t be here, but in my mind I had no alternative.

I tried my utmost to regain my employers’ confidence in me, while at the same time trying to come to terms with my physical, mental and medical condition. But eventually, my employer lost the confidence, trust and ability to communicate efficiently with me and vice versa. Despite what I thought were my best efforts to prove otherwise, my condition eventually led to my employment being terminated.

This was the most difficult and painful year of my life.

After one or two short lived part time work ventures, I came to the heartbreaking conclusion that I was unable to deal with my condition on my own.Eventually I began the slow path to the discovery, identification and treatment of my short term

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memory loss, headaches and personality change which were all associated with my acquired brain injury. I saw doctors, physiotherapists and clinical psychologists all over the country. But the realisation of what had happened to me and my own awareness of how I was affected only came about gradually.

I moved to Dublin and tried again. After doing a work placement scheme with a company in Dublin city, again I found that the busy laboratory environment I was in was no place for a person in my condition. At the end of a nine month unpaid placement the company chose not to continue my employment. My whole morale and entire being was now at an all time low.

This was a dark period for me. My frustration and anxiety levels had skyrocketed and I became depressed. I did have suicidal thoughts at this time. I think I was having a nervous breakdown of sorts.

Luckily I had an excellent GP and he guided me onto the right path at this very traumatic time. I attended a counselling service for close to two years, and it was there that I got information about groups which I was previously unaware of.

Headway, BRÍ and my counsellor have helped and

taught me some very important life skills in dealing with post-traumatic stress, memory loss and headaches associated with Acquired Brain Injury. Without the help and support received from these people I do not know where I would be today.

Every day has been a struggle since the accident. Identifying and knowing that my life will never be the same as before has been a long, difficult path of heartache and discovery.

Looking back on my story, I don’t know why I tried to go back to work so quickly. I don’t know why my parents were so keen for me to get back to work; perhaps it was just their way of helping me as they saw it, trying to get me to move on.

I think that what happened as a result is that I struggled for a long time to get the right sort of help. As my doctor said to me, I think when I went back to work, I fell through the net and the right services weren’t there when I needed them.

But now I know that there is a place to turn to discuss the same challenges that other people with this condition are facing. I think this can ease the pain of a changed life somewhat.

Garden GrowthA group of Headway clients who attend the Donnybrook day rehabilitation centre have linked up with “Organics Community Education” to participate in a horticultural group for eight weeks in the beautiful surroundings of “The Heritage Garden” in Avila , St Mary’s Carmellite centre in Donnybrook.The Group will be working on creating a walled herb garden where over forty types of organic herbs will be planted and maintained by the gardeners after the course is finished.

The Heritage Garden also has an Orchard that is over two hundred years old and is an oasis of calm that all the clients hope to enjoy over the summer.

The Polytunnel in the Headway Garden, Donnybrook

Clondalkin Book ClubA new book club has begun in the Clondalkin RT centre as part of the Literacy module. The group are currently reading ‘The Builders’ by Maeve Binchy – part of the Open Door series, designed to encourage emergent readers to get into the habit of reading and to assist those interested in improving their language and reading skills. The group are really enjoying this first short book and all the discussion that goes with it and they hope to move on to longer and more challenging novels in the near future. Members of the Headway Clondalkin Book Club

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Step by Step to Vocational Goals By Edel Wilson

Stepping Stones is the name of a new vocational training programme, based in Headway Cork, run by Headway and funded by FÁS. The course offers a range of modules, including Health and Fitness, Health and Safety Awareness, Career Preparation, Personal and Interpersonal Skills, Internet Skills and Home Management.

Clients are hoping to use the course to get back on the job ladder, add a qualification to their CV’s and gain an understanding of what their options are following completion of their studies.

We asked some of our clients what they thought of the training. This is what they told us..

“The Headway / FÁS course is of great benefit. The staff are very understanding and do a great job to support us and give guidance. I feel I can get my working/ academic life back on track. This course has given me the confidence to look for a job or go back to college. The other clients on the course are understanding of everybody’s situation. There is also great understanding of an A.B.I. and what happened to us and the difficulties that each person has, for example fatigue and cognitive issues.” – Shane O’ Mahony

“Currently there are 17 of us here at Carrigrohane doing the FÁS course, which we have named Stepping Stones. We all have an Acquired Brain Injury. It helps to have the camaraderie of people who are going through the same thing...

We are a great source of support to each other. Each module we complete gives us a sense of accomplishment, boosts our self esteem and gives us a feeling of being worthwhile...The tutors are invaluable to us as a source of information and help. They assist in any way that they can, for example, for some clients advice and if they cannot help themselves they will steer you to someone who can.” - Mary O’ Mahoney

“The group here in Carrigrohane Road with Headway are fantastic. We gather from morning to afternoon classes and support each other with positive comments from experienced staff. Just last week, 6th March, some of us began a boat building course ‘Meitheal Mara’, in Cork City. This is very interesting and a change to the more practical, ‘hands on’ type of learning.” – Patricia Moynihan

“The course is a powerful step for us. It prepares us for employment again. It gives us time to think about the challenges we have had to face and see how far we have come. For things we took for granted in life can now be very hard and difficult to face after our trauma. This course gives us focus.” – A. Quinn

Making Headway Spring/Summer 2013

Mark Barry’s Story Reporter:

Orlaith O Driscoll

Mark faced the first of many obstacles when he developed epilepsy as a young child. As he was so young he found this a serious challenge. He had never before encountered any form of a neurological disorder. Mark found his disorder extremely difficult to deal with, especially with reoccurring blackouts as a result of unprovoked seizures. These blackouts affected Marks ability in carrying out the routine tasks that he was used to doing and it also had a huge affect on his social behaviour. Previously he was quiet and shy and he was reluctant to mix with other children his own age so he kept to himself. However throughout his childhood

and early teen years he learned to cope.

He was doing well until at the age of fifteen he received the devastating news that he had a brain tumour.

Courtmacsherry by Mark Barry

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After receiving this news Mark had to undergo a long and serious operation that left him in a weak position mentally and physically. For quite a while after his operation Mark described the months as “fifty-fifty” when he was unaware of what the future was to hold for him. In reality his future could have gone either way. Time and patience were required for everyday activities and he had to start the process of months of recuperation.

Following this Mark came into contact with yet another barrier in his life. One day Mark was heading up the stairs and he had just reached the top when his epilepsy unexpectedly caused a blackout. He tumbled down the full flight of stairs with his head taking all of the impact. It took a few days for Mark to realize how serious his condition was but he soon learned that he had a serious brain injury, leaving him with little memory of his past and limited movement in his right limbs.

Fortunately for Mark with the assistance of a personal assistant he was introduced to Headway.

In the beginning of his time with Headway he felt quiet and shy with the other clients but he soon settled in. With the services that Headway has provided him, Mark has learned how to carryout basic tasks like using public transport, getting from A to B without the assistance of someone else. On receipt of

the rehabilitation that Headway offers, Mark immediately felt an improvement in his condition and feels that he is improving all the time. Mark couldn’t stress enough how much Headway helped him come to terms with his Brain injury. He says that he is able to recall memories of days he has spent in Headway which is a dramatic improvement to his condition previous to him starting in Headway. Mark’s words alone show the positive impact Headway has had on him:

“I love it. I adore it. The days fly when I’m in Headway. I think I grow with it”

As a past time now Mark really enjoys photography, because his condition has improved greatly and thanks to his newfound independence he is now able to travel up and down to the local coastal areas taking beautiful photographs of the scenery. It shows that despite his brain injury that he has found a way to express himself through his work.

Long Strand by Mark Barry

New PasturesWe are sad to be saying goodbye to our Senior Clinical Neuropsychologist, Dr. Suvi Dockree, who is leaving Headway after eight years to take up a position in the National Rehabilitation Hospital.

When asked about her highlights with Headway, Suvi replied “All the most positive and memorable experiences for me have been client-related. I’ve learned so much from our clients, it’s been an amazing experience. I’ve seen from working with people, how pathways and

possibilities begin to open up for them after a period of time. That’s great to be able to help facilitate that and very satisfying, but they do the hardest part themselves. They are amazingly resilient.”

From a two-person team, Suvi has seen the Psychology Department in Dublin grow to a fully- fledged team with senior and basic grades, counsellors, assistants and regular trainee placements from University College Galway and Trinity College Dublin.

We all wish her well in her new role!

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Making Headway Spring/Summer 2013

Research Roundup – ApathyOne common consequence of brain injury is apathy. Apathy is the name given to the state where an injured person has lost their motivation or has lost interest in things. In extreme situations, this can result in someone not taking proper care of themselves, even to the point of not eating or washing. In less extreme cases it can mean that a person doesn’t engage readily with the world around them or does very little. Apathy is associated particularly with injuries to the frontal lobes of the brain. It can be easily mistaken for depression or a lack of effort on the part of the injured person. These articles look at some recent research on the topic - Headway Assistant Psychologists Brona Wynne and Conor Fitzgibbon guide us through them..

Lane-Brown, A. and Tate, R.L. (2011). Apathy after traumatic brain injury: An overview of the current state of play. Brain Impairment, 12(1), 43-53.

In this article Apathy and its components are outlined. Apathy is described as a decrease in behavioural, cognitive and emotional components of goal-directed behaviour. The symptoms include impaired capacity to initiate activity, decreased or absent motivation and defects in planning and carrying out the activity sequences that make up goal-directed behaviours. It is a common occurrence for individuals following brain injury, occurring in 60-70% of people post-injury. The possible consequences are widespread, negatively impacting on independence, social integration, rehabilitation outcome, vocational outcome, coping and caregiver burden. The authors highlight three components of apathy; Behavioural, Cognitive, and Emotional. The Behavioural components of apathy refer to an individual’s lack of participation and performance in goal-directed activities. The Cognitive components of apathy refer to goal-directed thought content which manifests as interest and concern in goal-related activity. This can be linked with executive functioning such as initiation and ability to sustain and focus on a task. The Emotional components of Apathy involve the level of emotional responsivity and excitement induced by negative or positive events. Individuals with apathy can present with flat affect and reduced emotional responsivity.

Roth, R.M., Flashman, L.A. & McAllister, T.W. (2007). Apathy and its treatment. Current treatment options in neurology, 9(5), 363-370.

In this article a number of treatments proposed for Apathy including pharmacological and non-pharmacological approaches are discussed. In terms of pharmacological approaches, no high quality research

is available to evaluate its effectiveness but results would indicate that depending on the severity of the apathy, dopamine agonists can increase talkativeness and activity level and decreases apathy in individuals with brain injury. However, non-pharmacological interventions have shown greater success rates overall.

Lane-Brown, A. and Tate, R.L. (2010). Apathy after traumatic brain injury: A Multiple-Baseline, Single-Case Experimental Design. Journal of Head Trauma Rehabilitation, 25(6), 459-469.

A number of non-pharmacological interventions have been suggested and research has found that they should differ depending on the patient’s level of functional impairment. One case study looked at an approach for mild-moderate apathy following a brain injury in which the participant underwent motivational interviewing and external compensation in order to increase sustained activity toward goals – spending 20 minutes a day organising his bedroom, to exercise for 20 minutes 5 days a week and to spend 20 minutes 5 days per week writing down facts and personal opinions about conversation topics. Motivational interviewing included developing an awareness of the discrepancy between the participant’s desired state and current state, supporting self-belief and expressing empathy for resistance. External compensation was a daily reminder alert sent to a device the participant used as a cue to take part in the desired activity. Results demonstrated that these techniques were effective in decreasing apathy and engaging in desired goals. These results were maintained over time for the goal which most time was spent on during the intervention but not for the other two, suggesting that the duration of treatment for apathy is a predictor of the interventions success and the use of “booster sessions” may be a good idea.

12

Making Headway Autumn/Winter 2012

Contact InformationHead OfficeUnit 1-3 Manor St. Business Park, Manor St., Dublin 7Tel: (01) 810 2066 Fax: (01) 810 2070Web: www.headway.ie Email: info@headway.ie

Information and Support Line

1890 200 278email: helpline@headway.ieMonday – Friday, 9 am to 1 pm and 2 – 5 pm (local call rate)

Dublin OfficeUnit 1-3 Manor Street Business Pk, Shea’s Lane, off Manor Street, Dublin 7Tel: 01 810 2066 Fax: 01 810 2070Web: www.headway.ie Email: info@headway.ieRehabilitative Training & Day Rehabilitative Services, Employment Support, Community Reintegration, Neuropsychological Assessment, Psychotherapy, Counselling and Information and Support.

Cork OfficeUnit B3, Link Road Business Park, Ballincollig, CorkTel: 021 487 1303 Fax: 021 487 1305Rehabilitative Training & Employment Support,Rehabilitative Day Services and Community Integration.

Cork Psychology & Family Support ServicesKenny Group House, Carrigrohane Road, CorkTel: 021 434 7625 Fax: 021 434 7477Brain Injury Rehabilitation, Neuropsychological Assessment, Psychotherapy, Counselling, Family Support,and Social Work Services.

Limerick OfficeJutland Hall, Steamboat Quay, Dock Rd., LimerickTel: 061 469 305 or 061 469 306Rehabilitative Training, Vocational Training Programme,Supported Employment, Neuropsychological Assessment, Psychotherapy,Counselling and Family Support and Community Reintegration

Kerry Office (Psychological Services)Ashe Street Clinic, 36 Ashe Street, Tralee, Co. KerryTel: 087 6673857Psychotherapy and Counselling

South East Office15 Old Dublin Road, CarlowTel: 059 9134029Information and Support, Family Support

Diary Dates

Wellness DaysTo celebrate European Month of the Brain, Headway is co-hosting a series of “wellness” days which aim to promote self-management and living well with a neurological condition. The events, which will comprise talks and workshops will be: • InCorkon17thMay,OrielHouseHotel,

Ballincollig Cork • InLimerickon15thMayattheGreenhillsHotel • InKilkennyonWednesday8thMayinthe

Lyrath Hotel, Kilkenny

Art ExpoAn Art Exhibition by Headway Rehabilitative Training participants will be held in the LHQ Exhibition Space, Cork County Hall 20th May to 9th June

Info StallCome and visit our Information and fundraising stall at Limerick’s famous Milk Market on 17th May

Flora Mini MarathonJoin Team Headway and help to raise funds for Brain Injury services. Sign up for your sponsorship pack and t-shirt at www.headway.ie/runforheadway

Fundraisers WelcomeDo you have a fundraiser you’d like to organise for Headway? Contact Teresa on 01 810 2066 for more information

Find us on Facebook at www.facebook.com/Headway.ie Follow us on Twitter atwww.twitter.com/HeadwayIreland