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Autumn/Winter 2012 Edition

MAKING

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

Spring 2010 Issue

Making Headway is published Making Headway is published by by

Inside Inside

TheIntroduction Neuro-Rehabilitation to Autumn/Winter Strategy? Edition 22 Telling Secret Tales: Millionaire Joan’s Story 33 Making Headway the Most Poem out of Community Living 45 To The NewTop Career of the Guidance World Service 65 ABIFocus Ireland’s on Aphasia Community Based Neuro7 Rehabilitation Headway Boccia Services League 89 Rehabilitation Research Round-Up: of Executive Fatigue Function 10 after Brain Injury 11

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Welcome to the Autumn/Winter Edition of Making Headway

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ome of the most common consequences of a brain injury, particularly brain injury caused by stroke or haemorrhage are problems with communication. This edition features an article on aphasia by Sally Conneely on page 7. If you are a fan of RTE’s Secret Millionaire, you will know that Headway featured in the series’ opening episode – we went behind the scenes to find out what it the experience was like on Page 3. Folllowing the huge success of the paralympics, Headway’s own Boccia league is getting under way – you can find out about this fascinating game on page 9. Lastly, we have our usual roundup

of fundraising news, events and research. I hope you enjoy the edition, and if you would like to contribute articles, stories, interviews, ideas, please email me at stablesr@headway.ie Happy reading! Richard Stables Editor, Making Headway

Front Cover picture: Packie Bonner and the Harbour Group (Page 6) ;”The Late Late Owl by John Costello; Jim Breen, Ireland’s Secret Millionaire with Mark McDonagh (page 3); Mark Rohan and Ronan O’Neill from The Equinox Cycle ride (Page 5);The Equinox support team; Same Me, Different Me Artwork by the Harbour Group Dublin (see page 6);

A Message from the Chief Executive The current mantra throughout Government, the HSE and a raft of policy documents is towards the provision of person-centred services. From the very foundation of our organisation, Headway has placed the client and their family member or carer at the centre of what we do. From our earliest contact onwards, a comprehensive picture of each individual client’s needs is identified. One welcome further development in this direction is our creation of Community Re-integration roles with the aim of facilitating clients to participate in their wider community as independently as possible. We are now delighted to offer this service in Dublin, Cork and Limerick. However, truly person-centred services should not only be about the needs of an individual. Each person who experiences a brain injury is supported and surrounded by a network of people who are also

Lillies Bordello Fundraiser

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Lillies Bordello, in conjunction with Matt McKenzie Smith and his family, hosted a fantastic fundraising event for Headway on Friday 12th of October. The event saw the launch of our awareness video, highlighting the message of hope after injury, and starring members of one of our Harbour peer support groups, as well as the footballing legend Packie Bonner (see 6). We also officially launched Headway’s first CD single, which was written and recorded by members of another Harbour group. Produced by Kenn Davis (craftzone.ie), the CD entitled “Same Me, Different Me” is available for sale now for €5 each from our Manor St. office. The night was a huge success, and we’d like to say so many thanks to all involved.

affected by the traumatic event to varying degrees. In times of crisis and difficulty the togetherness, connectedness and support of family and friends is essential. We help to cement that connectedness through our supports and interventions for families, including counselling, education and group work. We strive to live our mission daily and a recent indepth client / stakeholder survey endorses this view – but complacency is not a trait we ever wish to display. We are continuing our process of improvement towards accreditation and we are completing the development of a new strategic plan. I am delighted that the accreditation process has required us to develop the strategic plan outwards from the client at the centre and I look forward to our continuing commitment to the person-centred approach. Kieran

Another Night at the Dogs

Following the successful night at the dogs held earlier this year in Cork, our Limerick Team held one in the Greyhound Stadium, Limerick on September 29th. A great night was had by all and all funds raised went towards the proposed new Limerick centre.

The Headway volunteers at the Night at the Dogs


Making Headway

Autumn/Winter 2012

Secret Millionaire Millionaire e-learning businessman Jim Breen featured in the first episode of the new series of Ireland’s Secret Millionaire, shown recently on RTE. Headway was one of the organisations visited by Jim in his quest to help people in Finglas. Visiting the organisation under cover as a presenter for a documentary, Jim got to know the clients in the Rehabilitative Training centre based in in Colaiste Ide. We talked to Niamh Rowe and Louisa O’Neill, two of the team based in our Finglas centre about the experience of appearing on the show. Headway (HW): So how did you first come to meet Jim? Louisa : A company called ABC Films had told us they wanted to do a documentary on what it is like for people living in Ireland now. The programme was going to be called “Generations” and one section was going to be on people with disabilities. The producer said there would be about a ten minute slot in one of the programmes. HW: What did you think about the proposal? Louisa: I was happy with it – they had a lot of questions. They wanted to know all the information about us, when we started, all about Headway and what we did. But we also had a lot of questions for them. We did express some concern that it had happened in the past that filming had been done but that nothing had been shown on the TV as a result and we didn’t want that to happen to the clients. They reassured us that that wouldn’t happen, that if they filmed they would definitely show it. So we went to the clients and consulted them. They were delighted with the idea that they’d be on TV even if it was for just 10 minutes. So on the day of the filming, what was it like when Jim and the crew turned up? Louisa: Jim came on the day of the filming. That was the first time we met him - he was the presenter. When he and the crew turned up it was very easy going. Initially, what we were told was that they would want to meet with the clients and film them in the classroom. On the day though, there was a change of plan, which was that they all of a sudden wanted to interview myself and Niamh!

to focus on the clients. I thought Jim would sit with them in the canteen, that they would have a cup of tea and that they’d be filmed in the classroom. So, when they came and said they wanted to interview me, I just panicked! HW: How did the interviews go? Niamh: It was actually very funny, very relaxed. Jim came across very easy going. He played along, said this was his first time doing this type of thing; he kept looking at the film crew asking if he was doing the right thing. Do I need to turn this way or that way? HW: Did you think he might not be very good at his job as a presenter? Niamh: No, I didn’t think he wasn’t professional. We’d been told that they’d just got an ordinary guy to do the programme as they thought it would lend more weight rather than using an established presenter. The only thing he did do, and looking back on things, it might have been a clue, was he asked one or two questions and when I fired back a whole load of information at him, he turned out to be very good and very methodical at summarising what I’d said. I actually thought to myself, “You’re very good at this!” Usually it would take anyone a while to get their head around Acquired Brain Injury and then to take in all that info that was being thrown at him... Niamh: So that went on, they interviewed myself and Louisa, then they moved into tea with the guys, at that stage all the crew were interacting with the clients, it wasn’t’ just Jim. The film crew were very good, very relaxed. There was a lot of banter going on. The clients were very relaxed and open with Jim; they were very relaxed about everything. We went down then to the classroom and then the introductions started.

Louisa: I went “I have so much work to do!” - I’d asked Niamh, “when do they want this?”, and Niamh said “in ten minutes!”, so I just went, “alright then, ok!”

Jim sat in the middle and he shook every single person’s hand and proceeded to ask them questions asking them to tell him a bit about themselves. We were told it wouldn’t take too long, but we started at 10:15 they didn’t’ leave until nearly 3:30 Some of the clients got a little upset during that process...

Niamh: I panicked, to be honest, because that wasn’t part of the plan! I thought that they were just going

HW: Was that because telling their story brought up difficult memories?

HW: How did you feel about that?

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Niamh: Yes HW: and how was Jim in that process, did he seem affected? Niamh: Yes, but he wasn’t the only one, I looked around. A lot of the crew were getting quite upset, it seemed to throw the whole lot of them. It really did. Jim was definitely affected by it. HW: Did that surprise you, the strength of their response? Niamh: Yes, because it happened quite quickly. The group were incredibly strong, very joyful and very willing to talk to the film crew, so they were very open and honest. Maybe it was because of that it was so touching to people. I’ve known these guys for nearly a year now, but for someone else coming in if you sit and listen to ten or twelve of our clients telling their stories, it’s going to affect you. There were a lot of tears... HW: How would you describe Jim’s connection with the clients? Niamh: He had a very strong connection. From the first moment, as soon as he started talking to the guys you could see he had a very strong connection. He was very moved by them. It was very evident. HW: What do you think it was about the group that appealed to him? Niamh: From what they said afterwards, they said that they were so blown away by the stories that were told, strong, moving stories. But even so, in the group that day, there was a lot of laughter, a lot of banter. I think they were genuinely blown away by how each of the clients had gone through such a traumatic event, and yet were so positive, and joyful. HW: Throughout all of this you didn’t have any suspicion that he wasn’t anything other than who he said he was? Niamh: No. Nothing at all. It didn’t surprise me that they were making a programme - but I never would have thought that it was the Secret Millionaire! HW: So how did things progress? Niamh: On the Thursday, they did a whole day shoot, and did more interviews on Thursday evening and Friday. Then at ten past eight on Tuesday morning, I got a text from ABC Films, saying that Jim was due to go back to Galway and wanted to come in to say goodbye. I knew he’d been very taken with the clients, it was quite obvious that he was, so it didn’t surprise me that he wanted to come in and say goodbye. But it did surprise me when I looked out and saw the film crew and I thought “what are you all doing back here?”

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They said they’d like to film Jim saying goodbye, and they asked me to go into the room. Then Jim said “I haven’t been honest with you” and I thought “oh no!, I’m going to get into trouble, I started thinking what if this is all a joke or something, so I did panic! When he said I’m the Secret Millionaire I thought “now you’re spoofing”. I had seen and heard of the programme but you never think it’s going to happen. Then I was just dumbstruck! HW: What did you think about the finished programme? Niamh : I had to watch it twice. We went to see it with the group. I didn’t really take it in. When I looked the second time, I know the guys were very moved. I thought the clients came across really well. It wasn’t just one person, it was the whole group. HW: Did you think the programme did a good job of representing our clients? Niamh :Yes, definitely. But then again they had great people to work with – I think that the clients really made the programme. HW:And what about the film crew’s reactions to our clients’ stories, what did you think about that? Louisa: I think because we see and work with the clients every day, sometimes we don’t realise the impact their stories can have. The time it really hits me is during brain awareness week when the clients do public talks. When they do that, you see the public coming in and then by the time they leave, the facial expressions are different. You know that there’s perhaps a deeper appreciation of their own life through the fact of what the clients say. HW: Overall, what would you say the experience has been like for you being on Ireland’s Secret Millionaire? Louisa: Overall, I was delighted for the clients. All of a sudden there was going to be people getting to see them. And also getting to see the programme and what we do, and the results of it. Niamh : It was a rollercoaster! When it was initially introduced, the focus was completely on the clients. For me personally, when they interviewed me, that threw me a bit, and then getting the cheque was another moment. But I’m very proud of the film. There’s been a huge amount of interest since the programme; it’s certainly had enormous impact. I got a lot of texts on the night, people who had left, exclients, family members. That was nice.


Making Headway

Poems

Autumn/Winter 2012

Mark McDonagh was one of the clients in the group visited during the filming of Ireland’s Secret Millionaire. This is his personal reflection on the experience...

Headway My life was feeling meaningless The old me had long gone, Until a group called Headway Gave me strength to carry on. They offered me a college place To get the old me back, With help from different angles To put me back on track. But during all the learning A young man came to call, Who wanted to hear my story Then tell to one and all. He said his name was Jim Breen, And he was making up a show, To document our difficulties And let everybody know. The camera crew were ready and to me Jim did chat, I told him what I’d gone through and presently where I’m at.

I could see my story touch him as he looked into my eyes, But what I didn’t [know] of Jim He held a big surprise. Behind his front of TV host was compassion, love and care, And then he shared his secret He was in fact a millionaire. The charade he played was just to see how other people live, And after eight days with us folk A gift he’d gladly give. Our Headway stories won his heart We gained his full respect, For he called back to the college And gave us a generous cheque. We thank you Jim with all our hearts There’s no one can compare, To you , our friend and gentleman The Secret Millionaire!

by Mark McDonagh

New Career Guidance Service

Charity25

Following a brain injury, returning to work can be a long process and can involve a fundamental re-examination of a person’s interests, skills and abilities. So we are delighted to offer congratulations to Samantha Whelan, Community Reintegration Officer with Headway Dublin, who has recently graduated from NUI Maynooth as an Adult Career Guidance Counsellor. Samantha is putting her new skills to good use by offering a careers guidance service to Headway clients who are looking for help in the wake of brain injury.

Headway is delighted to be participating in the Charity25 initiative called 2WillDo. The campaign, which benefits 25 Irish Charities, asks you to donate 2 Euro per month by texting the words 2WILLDO to 57802. It is a monthly subscription, and €1.94 out of each €2.00 goes to the group of 25 charities. For more information and terms and conditions, please see the website at www.charity25.ie We hope to put funds raised from this initiative towards the development of improved information for people affected by brain injury.

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Equinox Cycle Ride This year’s Equinox Cycle was a great success once again! Over 35 cyclists crossed the island of Ireland from Howth in Dublin to Strandhill in Sligo on the 22nd September 2012. They departed at sunrise at 7:30am and arrived 12 hours later to a beautiful sunset in Strandhill. Stopping in Maynooth, Clonard, Edgeworthstown, Carrick and Collooney before arriving to a welcoming Strandhill crowd. The cyclists where delighted to have World champion and London 2012 double gold medal winning paracyclist Mark Rohan as an ambassador who also joined the cyclists from Edgeworthstown. Mark also donated his UCI world time trial winning jersey for us to auction! So far this year the cyclists have raised over €30,000 for Temple St. Childrens’ Hospital and Headway in just 2 years of holding this event. Organizers of the event were thrilled with the responses received about how well the event was run and are looking forward to a successful 2013 Equinox Cycle. For more information visit http://equinoxcycle. com/. The Equinox cycle riders with Paralympian Mark Rohan

New Awareness Videos Headway are delighted to announce the online release of two new awareness videos produced by the Dublin peer support “Harbour” groups. In the first, Irish sporting legend Packie Bonner talks about the hidden aspects of brain injury and emphasises the message that there “is life after a brain injury” The video is available on our website at http://www.headway.ie/news/2012/10/15/packiebonner-and-the-harbour-group/

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Same Me, Different Me is a song recorded by clients and produced by Kenn Davis from craftzone.ie. Featuring members of one of the Dublin peer support Harbour groups, the song celebrates the benefits of attending Headway – and the joys of progress in recovery – “after years in the darkness, we learned to break free”. CDs of the song are on sale at €5 per copy – contact Headway to order your copy. You can also view the video of the song on our blog at http://www.headway.ie/brainblog/2012/10/15/ same-me-different-me/

Advocacy Information Day Headway Cork have recently secured funding from the Genio project to run an Advocacy Training Programme. The training will be facilitated by SHEP, the Social and Health Education Project, who are a community based training and development organisation, located in Ballincollig. As the first stage of this project, all the clients and staff from Cork were invited to an Advocacy Information Day in the Rugby club in Ballincollig on the 10th September. We had two presentations in the morning, one from Alison Ryan from the Disability Federation of Ireland and one from Gerry Rattigan and Ann Marie O’ Sullivan from the National Advocacy Service. In the afternoon we broke into workshops and groups discussed a number of issues including people’s understanding of advocacy and times when people found it difficult to speak up for themselves or felt their voice wasn’t listened to. Clients were asked for their input into what they think should be included in the upcoming advocacy training and we received great ideas which have all been passed onto SHEP. Clients were also asked about how they could envisage getting more involved in planning and decision making in Headway and again this generated great discussion, with groups even running out of time! We extend our sincere gratitude to John Garrett and the staff in the Rugby club in Ballincollig who opened their premises especially for us and did not charge us for the use of their great facility. We are also most grateful to our three speakers who provided us with interesting information, answered our questions with enthusiasm and gave us much food for thought. In particular we would like to thank the clients who attended on the day. The room was buzzing with ideas, fervour and eagerness. Altogether a productive and interesting day!


Making Headway

Autumn/Winter 2012

Focus on Aphasia By Sally Conneely, Headway Day Rehabilitation Service Officer, Dublin and William Walsh “it’s lonely, because people don’t know what aphasia is” (William Walsh).

One of the most common consequences of an acquired brain injury is a communication disorder called Aphasia. Despite the significant number of people who have the disorder, there is very little public awareness of aphasia. In an attempt to change things, William Walsh, an attendee of the Headway Donnybrook Rehabilitation Day Service shares his perspective as someone with aphasia with the help of Headway’s Sally Conneely. Aphasia is caused by damage to the language centres in the brain, found predominantly in the brain’s left hemisphere. It can be seen in people who have had a stroke, head injury, brain tumour, infection or dementia. Based on population trends, it is estimated that there are around 14, 500 people with aphasia in Ireland. In October 2008, William Walsh was admitted to the intensive care unit in St. Vincent’s Hospital having suffered a stroke. He describes how confused and scared he felt at the time: “I don’t remember anything at all… when I woke up, I didn’t know where I was… and eventually I was told I got a stroke… and I have aphasia”. Aphasia affects people in different ways. A person may either find it difficult to understand what people are saying to them, or they may have a problem expressing themselves, saying words and sentences. In some cases, people can have a mixed aphasia, which is a difficulty with both understanding and speaking. In William’s case, he has no difficulty understanding what people are saying, but he does have difficulty expressing himself. As he says: “my marbles are a hundred percent and I want to say what I want to say but it takes me a long long way to do it”. William knows exactly what he wants to say, but there is a problem with the way that messages needed to express his thoughts leave the brain. He finds himself searching for a word but may be unable to find it, and sometimes he may say a completely different word instead. When people with aphasia have difficulty understanding what is being said to them, it can

William Walsh and Sally Conneely at Headway

seem as if people are speaking a foreign language to them. In this situation, the brain has difficulty processing the incoming messages. A significant number of people with aphasia, including William, also experience difficulty reading - words and sentences on the page lose their meaning. William explains: “I can’t read and I can’t write… and I get very frustrated”. People with aphasia commonly experience difficulty with writing, spelling and numbers. William, who has a Degree in Electronics from University College Dublin, explains that he felt very frustrated in the past because of his aphasia and that it took him a long time to accept it, “it took me a long time to calm and calm and calm… eventually I’m okay, I understand what aphasia is”. Aphasia is a long-term disability with levels of recovery differing from person to person. The amount of recovery depends on the extent and location of the damage to the brain. There are many secondary effects too. If you lose the ability to communicate effectively, it can be hard to socialize, and keep up with conversation. As a result, people with aphasia can become increasingly withdrawn socially and emotionally. This can even lead to depression in some cases. William states “you get very lonely, you are on your own planet you know… people are their own people… they don’t know what aphasia is”. Despite his challenge communicating with others, William remains a very positive person and he has not allowed his aphasia to affect his confidence “I am a very happy person… a fighter”.

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Aphasia not only affects the lives of the individuals affected, but it can also have an impact on their family and friends. They can find themselves unable to understand their loved ones and do not know what to do. At times they can become overprotective of their loved ones, speaking for them and finishing their sentences. They are challenged with having to learn to adapt their own communication to be understood and to help the person with aphasia get their message across. Partners of people with aphasia may also become increasingly isolated socially, and support and counselling are crucial for their wellbeing. So how can we help someone with aphasia? What is the main message William would like readers to take away from this? William reiterates: “I want to say what I want to say… I’d tell them, just give me a minute and I’ll do it, but it has to be taken easy, very easy you know… time… I’ll get it eventually… but just give me time, that’s it you know”. As William explains, giving a person with aphasia extra time in conversation and reducing background noise can help them get their message across. As words can be difficult for people with aphasia, the Irish Association of Speech and Language Therapists recommend taking the emphasis off the words and focusing more on the message, what the person wants to communicate. They suggest using any

means of communication suitable for the person with aphasia, such as gesture or using a pen and paper for writing words or drawing images that may help get the message across. A pilot aphasia conversation group was set up in Headway Dublin in July 2012. The group offered support for people with aphasia and an opportunity to practice conversation while gaining a greater insight into aphasia and how it affected the various group members. The pilot group consisted of 5 members and it ran for an hour and a half over six week and was a great success with all group members reporting to have enjoyed the group immensely, particularly meeting other people with aphasia and learning about aphasia from each other. Importantly, Aphasia affects different people in different ways. If you know someone with aphasia, seek advice from a Speech and Language Therapist about the most suitable strategies for the person. Thanks to William Walsh, Saerlaith Murphy and the other members of Headway’s pilot Aphasia Conversation Group for their contribution to the article. We would also like to extend a special thank you to the Speech and Language Therapists who gave advice and guidance for the creation of the group..

Aphasia Resources Online Headway’s information page on communication issues following brain injury includes a video from the pilot group mentioned in the article is at http://www.headway.ie/information/abi/communicating-followingbrain-injury/ The website of the Irish Association of Speech and Language Therapists website is at http://www.iaslt.ie/ The Irish Association of Speech and Language Therapists in private practice is at http://www.iasltpp.com/ The Connect website is a good website for resources, explaining aphasia, and giving tips for good communication. http://www.ukconnect.org/ The Stroke Association’s website page on communication difficulties at http://www.stroke.org.uk/about/ communication-problems Headway UK have a good site that discuss many effects of brain injury including this information on aphasia at https://www.headway.org.uk/language-impairment-aphasia.aspx Speakability is a UK charity dedicated to providing information for those with Aphasia. http://www. speakability.org.uk/ A good American resource for explaining aphasia and its signs and symptoms. http://www.asha.org/ public/speech/disorders/aphasia.htm The Aphasia Handbook is a great resource. It provides information on life after a stroke with communication problems. It is produced in quite an aphasia friendly manner. A good resource for the client and family: http://www.ukconnect.org/publications_26_121.aspx

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Making Headway

Autumn/Winter 2012

Headway Boccia League By Kieran McCullagh, Community Reintegration Officer, Headway Headway’s Day Service Centre in Manor St began running a sports module over a year ago, developed with the help and support from Dublin City Council’s Sports and Recreation Officer Laura-Jane McGinley. The module was designed around the group’s individual needs and wants and comprised a variety of sports and activities including; chair aerobics, archery, badminton and boccia. Boccia in particular has become a firm favourite. It allows individuals the opportunity to socialise while at the same time develop new skills. Boccia is also a non-discriminative sport in that all levels of ability can play, any age group can participate, it is very easy to learn, it increases self-confidence and self-esteem and it stimulates mental capacity.

So what is Boccia?

Boccia is a non contact sport, where the game centres around a target. It can be played individually, in pairs or in teams. It is a strategic version of the game bowls and was developed in Europe as a sport for individuals with disabilities in the early 1980’s.The game is played with 13 balls (6 red, 6 blue, 1 white). The jack ball (white ball) is used to start off the game and is thrown by one of the competitors onto the court. The game calls for a high degree of muscle control, precision, attentiveness and strategic awareness with the overall aim being to land six of the coloured balls nearer to the white target ball than the opponent’s balls.

The Headway team practising their Boccia

The balls that are used are firm but pliant, have an excellent rolling quality and are easy to hold. This enables the player to focus on their skill and reduces any advantage of physical strength. The player can use a variety of techniques to drive the ball onto the court just as long as they are in control of the movement at the moment of release. In certain circumstances, where a player is not capable of propelling the ball onto court using their hands, they are permitted to use an “assistive device”. These assistive devices are

better known as ramps or chutes and any individual who is unable to release the ball down the ramp using their hand, may use a head or hand pointer. Our Day Service clients told us that they were very interested and eager to play the game not only at a recreational level but on more of a competitive level. So together, we came up with the idea of putting together a Boccia League. The league would allow Headway and other organisations the opportunity to play Boccia in a competitive manner but also encompass the fun and social aspect of the sport. The first step we took in setting up the league was to contact a variety of organisations and collect feedback on the idea. The response was exceptionally positive and the majority of organisations contacted were very enthusiastic about joining. We also contacted Brenda Hopkins from Cerebral Palsy Ireland who was equally excited about the league and very kindly agreed to run training for staff members from Headway and the other organisations contacted on how to run a boccia session effectively and competently with our respective groups. The training has now taken place in Headway’s Head Office in Manor St with The National Rehabilitation Hospital as well as staff and clients from Headway’s Day Service and Rehabilitation Training centres participating. Now that the training has been successfully completed we hope to have the league up and running within a couple of weeks. Our goal is to run the League every Friday from a location easily accessible to all participants and over a period of time, which will allow each team the chance to play against each other a number of times. The aim of the Boccia League is to have an overall champion with prizes being awarded to each team who participates. In the future we would love to develop the Boccia League even further and have it run from our centres based in Cork and Limerick as well as branch out to a variety of other organisations. We like to dream big and remember boccia fans – if you’re not in, you can’t win!!

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Research Round-Up: Fatigue Following a traumatic brain injury, many people have issues with fatigue. In fact, some studies show that almost three-quarters of people report fatigue issues up to 5 years after suffering a brain injury and that some people consider fatigue as one of the most challenging symptoms of brain injury. The research papers outlined in this edition of Research Roundup consider the causes and some potential treatments for fatigue following a brain injury - By Brona Wynne and Conor Fitzgibbon, Assistant Psychologists.

Cantor, J.B., Ashman, T., Gordon, W., Ginsberg, A., Engmann, C., Egan, M., Spielman, L., Dijkers, M. & Flanagan, S. (2008). Fatigue After Traumatic Brain Injury and Its Impact on Participation and Quality of Life. Journal of Head Trauma Rehabilitation, 23(1), 41-51. This study sought to examine the relationship between post-Traumatic Brain Injury Fatigue (PTBIF) and other symptoms and conditions such as depression, pain, and disturbed sleep. It also investigated potential links between PTBIF and participation in activities and quality of life. The information for the study was obtained by administering questionnaires which were sent to two groups of people, one who had a brain injury and a group without a brain injury. The results of the questionnaires were then compared and contrasted.

The study recruited 46 participants with Traumatic Brain Injury (TBI) of varying severity and compared them to 46 people without brain injury, in a task designed to test levels of attention. Results showed that the TBI group expended greater effort in maintaining performance over time, which in turn was associated with fatigue. It was recognised that this process, which was found to result in increased blood pressure for the TBI group, can lead to stress and this in turn, may eventually lead to anxiety and/or depression.

The study found that a large proportion of fatigue is directly related to the brain injury itself and that it may have little to do with other conditions such as pain or depression. Findings also showed that the prevalence and severity of fatigue was associated with healthrelated quality of life, particularly physical and mental health. It was also found that while individuals with ABI reported that fatigue impacts on their functioning, the level of their fatigue did not limit their participation in activities. However, the authors do note that whereas fatigue may not reduce the quantity of participation in various domains of life, it may lead to a decline in the quality of that participation. The authors highlighted the need for future research into the link between PTBIF and quality of participation in activities.

Sleep disturbance, which is often reported by individuals who have had a TBI, is also linked to fatigue and can happen even in the absence of anxiety or depression. This link has been supported by other research indicating that damage to specific regions of the brain can result in fatigue and sleep disturbance. It has also been supported that fatigue can be related to hormonal abnormalities that can occur as a result of a TBI.

Ziino, C. & Ponsford, J. (2006) Vigilance and Fatigue following traumatic brain injury. Journal of International Neuropsychological Society, 12 (1), 100 – 110.

Due to the lack of certainty surrounding the causes of fatigue, there has been little in the way of advancements in treatment for it. This study discusses some wellestablished, and some recently implemented methods to treat fatigue.

Our second article reports on a study which explores the possible physiological and psychological causes of fatigue and whether the two are interlinked. It is difficult to tease apart whether fatigue arises as a direct result of the injury and its neurological consequences (physiological) or as a result of secondary factors such as anxiety, depression or pain

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(psychological). Studies so far, such as the first one quoted above, have found these secondary factors play only a small role in fatigue. However, this study found that fatigue may in fact result from the additional efforts expended in meeting the demands of everyday life in the presence of cognitive challenges following injury.

Ponsford, J.L., Ziino, C., Parcell, D.L., Shekleton, J.A., Roper, M. et al. (2012). Fatigue and Sleep Disturbance following traumatic brain injury – their nature, causes and potential treatments. Journal of Head Trauma Rehabilitation, 27 (3), 224 – 233.

It is generally accepted that a person with fatigue following brain injury may need to regulate their lifestyle within their mental and physical limitations. Common strategies include reducing work hours, modifying the pace or demands of activities, reducing distraction and need for multitasking, and taking frequent breaks. It may also be necessary to address


Making Headway psychological issues using approaches such as Cognitive-Behavioural Therapy. Relaxation training and mindfulness programmes can also help to reduce fatigue and promote well-being. As sleep disturbance has been found to contribute to fatigue, it is the focus of the most recent treatment options. One such option is to take the pharmacological approach. A drug containing melatonin has been found to improve sleep quality, reduce the time taken to get to sleep and improve morning alertness and quality of life. However, more research is needed in this area before definite conclusions are drawn.

Autumn/Winter 2012

Another recently suggested treatment option is Bright Light Therapy. Light has been found to have acute alerting effects and results in reduced sleepiness. It also has arousing effects on a number of biological indicators and improves mood. Short wavelength (blue) light has been shown to be the most effective. On this basis, it has been suggested that daily, timed exposure to short wavelength light has the potential to reduce fatigue and daytime sleepiness and improve mood and also aspects of attention. Trials are currently underway to investigate this.

Thank you Thank you Thank you

Headway recently received a cheque for €2,000 from Roches Street Art Festival, Limerick. Catherine Keane, a client of the Limerick vocational training programme also displayed some of her painting in the festival and was involved in the event organisation, along with Headway’s Ritchie Reeves and Elisa O’Donovan. Thanks to all. Hannah, the niece of one our clients sent us this note together with a cheque for 185 Euro following a marathon nail painting session. Thank you Hannah and Casey for your fantastic effort in raising funds for Headway! You are stars!

Congratulations and thanks Keith O’Sullivan who completed the Great Fjord Swim in aid of Headway, swimming from Galway to Mayo across Killary Harbour. Also to Joanne Quinn, Michelle Murphy and Philip Farrell, Keith Doherty who did skydives in aid of Headway. Phew! Also thanks to Tony Connolly and Dan Garry who worked with our Limerick Team on our hugely successful Golf Classic held in Charleville earlier in the summer. Thanks to Depuy Ireland, the Irish Stock Exchange, and all our individual and corporate donors and those who have supported us by running in the various marathons and mini-marathons throughout the year. Your support has been vital – and much appreciated! Headway’s Jackie McGann receiving a cheque from DePuy Ireland

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Making Headway

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

Information and Support Line

1890 200 278

email: helpline@headway.ie

Autumn/Winter 2012

Christmas Cards

Headway Christmas cards featuring artwork by our service users will be on sale shortly - contact us to get your order in early, they will be priced at €8 per pack of 10.

Calendars

Also for sale for €10, our 2013 Calendars features artwork by Headway clients.

Monday – Friday, 9 am to 1 pm and 2 – 5 pm (local call rate) Dublin Office Unit 1-3 Manor Street Business Pk, Shea’s Lane, off Manor Street, Dublin 7 Tel: 01 810 2066 Fax: 01 810 2070 Web: www.headway.ie Email: info@headway.ie Rehabilitative Training & Day Rehabilitative Services, Employment Support, Community Reintegration, Neuropsychological Assessment, Psychotherapy, Counselling and Information and Support. Cork Office Unit B3, Link Road Business Park, Ballincollig, Cork Tel: 021 487 1303 Fax: 021 487 1305 Rehabilitative Training & Employment Support, Rehabilitative Day Services and Community Integration. Cork Psychology & Family Support Services Kenny Group House, Carrigrohane Road, Cork Tel: 021 434 7625 Fax: 021 434 7477 Brain Injury Rehabilitation, Neuropsychological Assessment, Psychotherapy, Counselling, Family Support,and Social Work Services. Limerick Office Jutland Hall, Steamboat Quay, Dock Rd., Limerick Tel: 061 469 305 or 061 469 306 Rehabilitative Training, Vocational Training Programme, Supported Employment, Neuropsychological Assessment, Psychotherapy,Counselling and Family Support and Community Reintegration Kerry Office (Psychological Services) Fairies Cross, Clounalour, Tralee, Co. Kerry Tel: 066 711 9320 Fax: 066 711 9321 Psychotherapy and Counselling South East Office 15 Old Dublin Road, Carlow Tel: 059 9134029 Information and Support, Family Support

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CD

We have a limited number of CDs of the Harbour Group single “Same Me, Different Me” (produced by Craftzone.ie) for sale at €5 per copy.

Dublin Art Exhibition – United in Colour! This year’s eagerly anticipated Art Expo in Dublin will take place on November 19th to 22nd in the Civic Offices, Wood Quay.

The Theme for this year’s show is “United in Colour” There will be a Gala Night held to mark the end of the exhibition on 22nd and works will be for sale on the night. We welcome volunteers to help us sell the Christmas cards and Calendars. If you are interested to help, please contact Helen Gaynor on gaynorh@headway.ie or 01 810 2083

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


Making Headway Autumn/Winter 2012  

Autumn Winter edition of Making Headway magazine, published by Headway Ireland Brain Injury Services and Support

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