Spring/Summer 2014 Edition
MAKING
Bringing positive change in the lives of those affected by Acquired Brain Injury
Making Headway is published Making Headway is published by by
Inside Inside
Introduction The Neuro-Rehabilitation to Spring/Summer Strategy? Edition 2 2 Recovery Telling Tales: Playlist Joan’s Story 3 3 Brain Making Awareness the Most Week out Pics of Community and Pieces Living 4 6 Coping To Thewith Top of Sight theLoss World After Brain Injury 6 7 Sexuality ABI Ireland’s afterCommunity Brain Injury Based Neuro9 Research Rehabilitation Round-Up Services 8 11 Rehabilitation of Executive Function after Brain Injury 11
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A Message from the Chief Executive The founding chairman of Atlantic Philanthropies, the great and generous Chuck Feeney says “good buildings for good minds can make a big difference in the lives of a lot of people”. In Dublin, we have just moved into our new building which will house the range of services we offer, including assessments and the full range of supports from client and family therapy to Day Rehab Services and social clubs.
We have been lucky and now we are all rightly proud of our new building in Blackhall Green. The end result is a combination of co-operation between Headway, the HSE, the social lender Clann Credo, various suppliers and professional advisers, most of whom offered their services at greatly reduced rates.
Front Cover picture: Front Cover Photos (Clockwise from Top L): Some of the Heawday Dublin Team outside the new building in Blackhall Green; The boat built by Headway Limerick is launched on the Shannon; Aidan O’Brien; Headway Dublin building; Rachel McGeehan (L) and AnneMarie Conlon in the Color Run, Dubai; Elisa O’Donovan crossing the finish line in the Hurley Hoey 10k run.
In the first instance, we wanted to find a home that our clients would feel proud of, that was welcoming and sympathetic to the needs of clients. We wanted a building that would make a statement of the right of people with brain injury to appropriate and adequate accommodation for rehabilitative services.
The founding members will be happy to see the development and the extra space will allow us deal with increasing demand, to some degree.
Secondly, we wanted our staff to feel proud, comfortable and inspired to use the premises to their maximum effect on behalf of the clients we serve.
Readers are most welcome to come and visit.
There is still work to do but the response from all, so far, has been fantastic.
Kieran
Thank you Thank you Thank you! In this edition we have a lot of people to thank for their amazing support. In no particular order: Cian MacCarthy organised a head shave and leg wax and raised an amazing €7,800 for Headway services in Cork; Rachel McGeehan raised €600 when she did the Color Run in Dubai in December; We received a very generous donation from St. Benildus College in January for which we are extremely grateful; Gerry Garvey held a five-a-side fancy dress football match last October and raised €900; Pat Nagle organised a darts tournament last November in Brady’s pub, Tallaght and raised nearly €1,400! Keith O’ Sullivan did The Great Fjord Swim in Killary Harbour and raised nearly €300; Callie Walsh donated four brand new iPads and cases for our clients to use in Ballincollig; Lorraine Cronin and her classmates in St, Marys High School, Midleton raised €45 in their mini company “Tree Rings”. And thanks also to Toyota who featured our website in their safety campaign, Marketing Network for their continued support, Briain Colgan from Norton Colgan Architects who did an amazing job for us in our new building in Dublin and Accenture who
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organised the inaugural code-a-thon with UCC from which our App was developed. And lastly thank you to all our other supporters and donors who are continuing to help bring positive change in the lives of people affected by brain injury.
Making Headway Spring/ Summer 2014 I hope you enjoy reading this edition of Making Headway. I’m always on the lookout for stories and news. If you’d like to suggest something please send it to me at stablesr@headway.ie Happy Reading! Richard Stables, Editor, Making Headway
Making Headway
Spring/Summer 2014
Recovery Playlist By Martin Perry
We all think our lives and work are so busy and important that we can’t possibly take a break from them. We just keep running, rushing, racing on the treadmill of modern life for fear the world will fall apart if we stop. We check our voicemail every five minutes, we worry that if we forget our mobile phone when we’re out for a walk, we even check our email when on holiday. What happens when tragedy strikes? The world doesn’t stop! The world goes on without you!! Nothing is so important that it can’t be worked around. I had an accident. I was hit by a tidal wave, struck by a tornado, swept up in a storm. I was unceremoniously dumped on the ground. After 22 years of college, work, and constant growth as an adult, I was thrown on the scrap heap. I kicked for the surface, I fought for breath, fought to survive, fought to live. Slowly the tidal wave receded, the tornado passed on, the storm abated. Five months in hospital and intensive in-patient rehabilitation showed me which way was up, taught me to walk again, showed me how to survive. Since I felt fine, could speak, could recognize people, could read and comprehend, I thought journey back to life would be simple. I thought I’d be able to get back to my normal routine in a matter of days or weeks. I looked up from the heap I was in. I was a piece of flotsam washed up on the shoreline of the land of the ill. I was separated from my family who were in the land of the well, with my former life. I was adrift, but rather than just exist, I had to find the way to truly live again. Naiveté was a friend. I would happily forge ahead with no idea how high the mountain of recovery was that I had to climb on the road to the land of the well. My family were all waving at me to re-join them, but I couldn’t re-join them. There was no easy way back! I was caught in this strange limbo of being out of immediate danger yet not being back to “normal” either. How would I get back to the life before my accident? And could I? And if so, when? No one could show me the direction to strike out
for, or how long, if ever, the journey would take. I was scared. I took inspiration from other travellers who were far worse off than me but remained incredibly brave and still looked to the future. I still had a lust for life. I had to make the journey back to the land of the well, to my family. But there were questions I had to face. Most of us never really think about our identities. We are who we are. Now I had to think about my identity: Could I be the man I wanted to be, what my family needed me to be, be the man I was? “Take the first step in faith. You don’t have to see the whole staircase, just take the first step”. - Martin Luther King, Jr. I used music to track my way back to my life. The music from various significant and formative times in my adult life acted as signposts. For me, this was when I was at college (for 7 years, yikes!), through the start of my career, to becoming a husband and father. Music became my constant companion; it shone a light to lead me back home, to start my journey. Music triggered emotions, memories and reawakened my neural pathways. It is thought that music helps with memory issues associated with severe traumatic brain injuries. This is due to several factors: Association. I could associate music with important life events and the accompanying wide array of emotions. The music connection was so strong that hearing it evoked a memory of both the time and place and the significance of that memory. Mood Matching. I found that music was able to match the psychological mood I was experiencing. At the start of my recovery I was intensely focused
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on achieving the best rehabilitation possible. As such, the music that appealed was intense and driving, with little subtlety. (Yes - Heavy Metal and Rock). As my recovery continued, my taste in music became more nuanced and subtle as I settled into the “new me”. I became more interested in the soothing, calming and relaxing effects, looking for an ocean of peace - a rare thing following a brain injury. I also found that lyrics could have an intense impact on me (see the panel for some examples from my recovery). Recollection. Music encourages the brain to remember events forgotten from the past. What was striking was that in the early stages of recovery when I had no short term memory, and large chunks of my life were missing from my long term memory, I still had an ability to remember the lyrics and melodies from my past. Also where I was and what I was doing at that time.
Music has been a huge help to me on this journey of recovery. Yet I may never fully complete the journey to the land of the well. Surprisingly, I see this journey as a blessing. Not only did I survive but I have not been left on medication for the rest of my life. Nor do I have significantly reduced mobility. I can communicate my words clearly. I can live an enriching and fulfilling life. Simply living my life again has become the journey. Others can’t. I have seen such devastation during my time in hospital and in outpatient rehabilitation group therapies. There are many worse off. I appreciate the health I have! “To be truly enjoyed, sleep, riches, and health to be truly enjoyed must be interrupted”. - Johann Paul Friedrich Martin Perry
The Playlist: 7 songs that helped me through my recovery Pearl Jam - Alive This song was on my smartphone when I first ‘woke up’ in hospital. The rousing chorus of ‘I’m still alive’ still gives me goose bumps to this day. Guns N’ Roses – COMA Another song that was on my smartphone at the time. There is a line when a voice says ‘I never knew you wanted to live’ And I wanted to live! Deep Purple – Perfect Strangers This song is about coming back to those you knew in the past, who became strangers but are now well known to you again. Can you recapture the past? This emotion I struggled with as I built the connections with my family post TBI Metallica – Fade to Black To me the lyrics of Fade to Black are about grieving for the person you were, what you have lost, and learning about your own mortality. The following lines are very poignant: Things not what they used to be, Missing one inside of me, Deathly loss this can’t be real, Cannot stand this hell I feel, Emptiness is filling me, To the point of agony, Growing darkness taking dawn, I was me but now, he’s gone The Who – Behind Blue Eyes In the first year of my recovery I was extremely emotionally volatile. I could lose (and regain) my temper very quickly, other times I would burst into laughter. I had little control on my emotions. The following lines were very apt: When my fist clenches, crack it open, Before I use it and lose my cool, When I smile, tell me some bad news, Before I laugh and act like a fool Duran Duran – Ordinary World Rehearing a song from my past can stop me dead in my tracks, if the words particularly align with TBI recovery. This happened even last month with the following lines: But I won’t cry for yesterday, There’s an ordinary world, Somehow I have to find, And as I try to make my way To the ordinary world, I will learn to survive Indigo Girls – Closer to Fine To me this song is about not beating yourself up too hard as you struggle to get back what you have lost. But it is ok to question and strive. In the end there is the knowledge that you’re going to be fine; and there is a life to live.
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Making Headway
Bowled Over!
The Headway South Side Bowling League started in November 2013. The 25th of February saw the end of the league and the crowning of the champion. Congratulation to Sean Young who came in first place and was presented with a trophy sponsored by the Leisureplex in Stillorgan. Cedric Hourie and Brendan Clarke came in second and third place respectively.
Spring/Summer 2014
accessible planting beds in a section of the school yard. The pupils will be working on these beds to produce fruit, vegetables and flowers throughout the year.
Clondalkin Cert Success
The bowling league was a great success and all the participants enjoyed it immensely! We are planning to commence a North Side Bowling League in the coming months. In November of last year, trainees in Clondalkin received Fetac certification in the Self Advocacy and Nutrition & Healthy Options modules run by Rehabilitiatve Trainging staff in the centre. Congratulations and well done to all!
Headway’s First CARF Survey Jason Helps Young Cork Gardeners
One of our Cork clients, Jason, is on placement with Churchfield Community Trust, based on Cork City’s north side. The trust offer training, work and enterprise skills with a particular focus on Adult Education, Woodwork, Painting and Horticulture.
Jason and his peers, along with facilitator Tommy Lysaght, worked on a horticulture project for Cork Educate Together Primary School in Cork City centre. With the support of the school parents committee, Jason and the team built a series of raised beds from larch wood and a naval-inspired sand pit. The end result is a series of beautifully crafted, hard wearing,
CARF International is an independent, nonprofit accreditor of health and human services. For over a year, Headway has been preparing to meet the quality standards set out by CARF. Now the time has finally come to submit our services to their scrutiny. Headway are being visited by a team of surveyors from CARF International in June. The team will inspect various Headway centres and talk with staff, management and most importantly our clients and trainees. Their report will indicate whether we meet the standard for accreditation and in what areas we can improve. Says Christine Flynn, Headway’s Quality and Standards Coordinator about the upcoming survey: “We have been working hard over the last year and we are confident in the preparations we have made so far. Living by CARF standards has already shown great benefit for Headway -both by ensuring the quality of the service we provide and also in evidencing the work that we do. But we know we can’t afford to be complacent and the survey is only the first step in a relationship with CARF that will keep us on track for ongoing quality improvement.” We are all eager to hear the feedback from the survey team.
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Brain Awareness Week Pics and Pieces Limerick
By Elisa O’Donovan, Headway Limerick After storms and floods aplenty over the winter months, the sun finally shone down on Limerick during Brain Awareness week. The week started off with community integration officer, Elisa O’Donovan and Headway client, Michael Lorrigan, heading to St.Clements secondary school to talk to students about road safety awareness. The talk was very well received by the students, and Michael’s own personal experience of brain injury strongly resonated with all. On Tuesday, Headway offices on Steamboat Quay opened their doors for a coffee morning, with all cakes baked by clients and carers.
Stephen Burke and John McCarthy in a quiet moment at the information stand in Wilton Shopping Centre
Carlow
After all those delicious treats, we took to the streets on Wednesday for a bit of a workout! Clients, staff and supporters donned their Headway T-shirts and jackets to walk the two bridges of Limerick as part of a brain awareness week walk. The walk drew lots of attention through the streets of Limerick, and raised some much needed awareness for Headway and brain injury.
Members of a Carlow Womens group relaxing after a talk by our Information and Support Worker, Catherine O’Hare
Dublin
Thursday saw us head for the Crescent shopping centre for a joint stall with Acquired Brain Injury, where shoppers were informed about our services. Phew, a busy, but successful week for Headway in the Mid-West!
Cork
In our Ballincollig centre, the Rehabilitative Training team and clients from the vocational programme set up an information stand in Wilton Shopping Centre.
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Staff in the Day Centre in Donnybrook, Dublin hosted a coffee morning for local businesses, residents and clients.
Making Headway
Spring/Summer 2014
Coping with Sight Loss After Brain Injury
Some types of Acquired Brain Injury can lead to major difficulties with eyesight. Here, Jenny Nealon (Training Officer in Clondalkin) speaks to Clondalkin trainee Aidan O’Brien about the damage to his sight as a result of his ABI and the visual aids that have helped him to maintain his independence
Aidan, what type of brain injury did you sustain?
“In 2006 I woke up one morning after coming home from a lovely holiday in Cape Town with my wife and I couldn’t see out of my left eye. It turned out that it was a stroke that I had sustained overnight in my sleep. It was very frightening and the sight has never come back in that eye. In 2009 I fell down the stairs for what I thought was no reason at all. I don’t know how I did it but I was in a bad way. The first thing the paramedics asked my wife was “has he been drinking?” I suppose they have to ask and it could have looked that way”. “I was brought to Beaumont where a brain tumour was diagnosed. Because of its location, all the surgeon could do was close up again when it was found. They tried to reduce the tumour in size with radiotherapy and this was achieved - the tumour is still there but has reduced from 6 inches to 2 inches. Unfortunately another tumour has now been discovered which I am currently undergoing treatment for. I’m feeling positive but I am very tired at the moment. However, I am still keeping myself busy with my main hobbies, which are walking and cooking”. What kinds of supports have you required since your tumour was diagnosed? “I am linked in with the NCBI (National Council for the Blind of Ireland) and they have been very supportive. I have purchased a lot of my visual aids from them which have been invaluable to me. Attending the training centre in Clondalkin has also been very helpful and has given me the opportunity to meet new people, attend social outings and keep me busy. And, of course, my family. I have needed them the most. Without Denise I would be lost. She is the love of my life. It’s been a tough time for my children too – Shona (23) and Ciaran (18) – but we are getting through it as a family”. What types of visual aids do you use? “The one I probably use the most (particularly within the Clondalkin centre) is the scanner. I got this from
a visual aids exhibition in the Mansion House. It was very expensive but my parents were brilliant and they bought it for me. My parents always say that they would like to reap the benefits of their nest egg now rather than in the future! I’m very lucky. The scanner suits my needs well – it scans printed words and then speaks the words. I can use it in the Headway centre for work sheets or at home for newspapers etc. The only thing is that it can’t scan hand writing - the words have to be printed. It’s not a big deal though because it can cope well with most things I need to read. The scanner has been invaluable to me. You can even change the language setting on it but I have had no need for that just yet!” How have visual aids helped you to keep up with your hobbies? “Well the best gadgets for this have been the ones I use for cooking. I love to cook and I didn’t want to lose that skill because of the difficulties with my sight. I have a talking weighing scales – this does what it says on the tin! You pour the ingredients to be weighed onto it and it will speak the weight. I have been able to use it for all types of cooking. It will even weigh liquids!” “I also have a talking pen which I use for identifying ingredients in the kitchen. If you have a bag of flour, for example, you place a special sticker on the bag, place the pen on the sticker and record your voice stating what the item is. The next time you scan the pen across the item, it activates and gives back your voice telling what the ingredient is”. “Another gadget I have is the colour coordinator. This is a pen that you place against items of clothing and it tells you what colour the item is. This is good for making you aware of what clothes you have and how you are putting them together”. “Another gadget that is very helpful is a little sensor that sits of the side of a cup and alerts you with a beep when you have filled with cup with hot water to the maximum level. This is a good little safety gadget”.
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“Also, my watch states the time for me, which is obviously a massive help and is great for poached eggs on a Sunday morning!” What advice would you give to anyone who is looking for similar supports? “I would say that linking in with the NCBI is a very positive step. These gadgets can be expensive but they are so worth it, particularly the cooking equipment, which has enabled me to continue with my hobby of cooking. It has also allowed me to keep cooking for my family, which eases the work load
Headway App In our first steps into the world of smartphone technology, we are delighted to announce that we have a new “Headway” App available for download. The App, currently available for Android devices allows people on the move to
on my wife, who comes home from work late and in general has helped me to continue contributing to our family life. I suppose you could say that these gadgets and all the support I have received and helped me to survive”. Thank you to Aidan for speaking so openly. All the above equipment as well as support and information for people living with sight loss can be obtained from the NCBI, Whitworth Road, Drumcondra. Ph: 01 830 7033 www.ncbi.ie
Although it is fairly basic at the moment, we hope to be able to refine and develop the App further in future versions.
maintain a handy list of appointments or tasks, keep your most needed contacts to hand and n to record your current location on a map for future reference n n
The App was developed by Tommy Dunton, William Norris and Killian O’Connell - all students at University College Cork. They were the winners of a one day “code-a-thon” competition organised by consulting firm Accenture who also helped the students to complete the development. The App is called “Headway” - you can search for it by name on Google Play. It is free to download.
Survey reveals increased pressures on people living with a neurological condition The results of a national survey of 600 people show the serious impact of successive cuts to health services and benefits on people living with neurological conditions, says the Neurological Alliance of Ireland (NAI). The survey, carried out in early 2014 was released as part of National Brain Awareness Week. The results
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show significantly reduced access to services such as respite care and therapy; major reductions in medical card eligibility and cuts to mobility allowances, home help and home care packages. You can find out more about the survey from the NAI website at www.nai.ie
Making Headway
Spring/Summer 2014
Sexuality after Brain Injury
By Sandra Power, Assistant Psychologist, Headway Cork It has been said that “the brain is the ultimate sexual organ”. The brain is responsible for our sexual urges, thoughts, sensations, inhibitions and behaviours. So what happens to sexuality when brain injury strikes? Considering that over 55% of people who have suffered a head injury are left with some lasting consequences, we should expect that sexual functioning is also affected. Although it is a subject that couples may feel embarrassed or reluctant to address, research suggests that sexual dysfunction is common after a brain injury. One study reported that 58% of people who had suffered a traumatic brain injury reported experiencing sexual dysfunction, such as erectile dysfunction and/or reduced libido. About a half of all couples surveyed reported dissatisfaction at the frequency of intercourse following a head injury, while over 71% of people with severe head injury reported reduced sexual drive. Despite these figures, shockingly, research also suggests that most people are not asked about sexual functioning by a health practitioner following a brain injury. While sexual issues are a tangible issue for many couples, it appears that most are suffering privately. So what is meant by sexual dysfunction? Lots of factors can affect sexual functioning after a brain injury. The location of the injury, the emotional impact of the trauma and even medication can all play a role. Some research suggests that time after injury is a factor, with greater sexual dissatisfaction being reported later on in the recovery process. This is perhaps understandable, as concerns about relationships and sexuality may only surface in the later stages of recovery. Commonly reported sexual problems include: n A decrease in the desire for sex. Less commonly, a person might experience an increase in desire for sex n Loss of sensation or loss of the sense of taste and smell. n Low arousal or difficulty achieving orgasm. A person might want sex, but the body may not respond. Men might experience difficulties getting or maintaining an erection. Women may find it hard to be aroused. n Tiredness – this can result in less desire for
intimacy and sex Pain or headaches n Speech problems or problems with mobility, such as paralysis, or weakness in limbs n The side-effects of medication. Some medicines which are prescribed after brain injury can have the side effect of preventing erections in men or reducing vaginal lubrication in women. n
For some people, the problems are physical, such as weakness or paralysis, restricted movement or loss of sensation and tiredness. Some movements and positions might increase pain and parts of the body might not be aroused in response to touch. If someone’s thinking and memory skills are affected by the brain injury, they might forget to initiate sex, or they might get distracted during sex or forget contraception. Some brain injuries might lead to poor judgement about when it is appropriate to initiate sex or lead to inappropriate sexual talk. Psychological issues such as anxiety, depression and confidence can also have an effect on sexual functioning. One large scale study involving 865 people with head injuries found that over half of participants reported reduced self confidence and almost half reported a decline in sex appeal. Feeling unattractive, preoccupation with problems and increased depression were cited as some of the factors contributing to this. Prescribed medication can actually cause problems with sexual functioning. In fact, one study reported that up to 25% of cases experiencing erectile dysfunction are caused by prescribed drugs. Some of the side effects of anticonvulsants can include impotence, ejaculatory difficulties, arousal problems and impact libido. Similarly some medications used to treat anxiety and depression (called SSRI’s) can also impact libido and lead to orgasmic, erectile and ejaculatory difficulties. Many couples can find that the changes in relationship roles brought about by brain injury can pose challenges. Changing from being a partner to becoming a care giver can seem incompatible with
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a sexual relationship. In one study, partners reported “feeling wrong” about engaging in sexual activity. Another reported that “because he’s so dependent on me and I’m more like a mother to him, it doesn’t feel right that we have sex”. Partners also referred to changes in the quality of the relationship “...the emotional side feels badly damaged, I really miss the intimacy and closeness. Suddenly we had none”.
Where to get help
If you are experiencing sexual problems, consult first with your GP to review any medical causes or supports that can be offered. Beyond that, individual and couples counselling has also been found to be very beneficial in addressing sexual issues. The National Rehabilitation Hospital (NRH) in Dublin provides a comprehensive sexual health service which is specific to issues arising as a result of head injury. This service is provided to patients of the NRH but referrals are also accepted via a GP or Consultant. There are some internet resources that offer information and practical suggestions, for example “Sexual Functioning and Satisfaction after Traumatic Brain Injury: An Educational Manual” is available
online at http://www.tbicommunity.org/resources/ publications/Sexual_Functioning_after_TBI.pdf The Headway Information and Support service can direct you to others (see the back page of Making Headway for contact details). One of the most significant things that couples can do is communicate with each other about the problems they are having and seek professional support if required. However, it is important to recognise that sexual relations are not entirely to do with sex alone. One doctor has suggested that only 5% of sexuality involves actual intercourse. The other 95% leaves plenty of room for developing intimacy and closeness with romantic gestures like dinner, flowers, compliments, or even just snuggling on the couch. Everybody has a right to a sexual life regardless of disability, brain injury or otherwise. The World Health Organisation acknowledges the importance of sexuality for happiness and quality of life. So if this is an issue for you, reach out for help. You are not alone with this problem and do not deserve to suffer in silence.
Leaflet Raises Awareness In January , we launched a leaflet to help people understand the special needs that some people with Acquired Brain Injury might have in everyday situations. The leaflet is called “Understanding People with a Brain Injury” and you can download it from our website, or request some to be sent out to you by contacting: Headway Information and Support, Blackhall Green, Off Blackhall Place, Dublin 7. Tel 1890 200 278
Thank you for Supporting our Limerick Services We’d like to extend a heartfelt thank you to everyone who responded to our “Orla” campaign in Limerick to raise funds for vital counselling services earlier in the year. We were very moved by some of your responses and touched by your generosity. It isn’t too late to help to bring positive change to families in the Limerick area who are in desperate need of counselling.
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If you can help in any way, don’t hesitate to get in touch with us at 01 60 40 800
Making Headway
Spring/Summer 2014
Research Round up: The long term impact of Brain Injury By Caragh Hesse Tyson, Assistant Psychologist, Headway Dublin Sustaining a brain injury can have wide ranging consequences for both the person and their families. The immediate effects of brain injury are relatively well reported in the literature. However, there is a need to establish the long term impact of such injuries in order to inform good practice in rehabilitation. The following three studies report on the long term psychosocial consequences of brain injury. McMillan, M.T., Teasdale, G.M., Stewart, E. (2012) Disability in young people and adults after head injury: 12-14 year follow up of a prospective cohort. Cognitive Neurology, 83, pp.1068-1091. This study aimed to determine the long-term outcomes of head injury and to examine relationships between types of injury, disability and a range of factors. The study followed up a group of people 12-14 years after being admitted to hospital with a brain injury. The study administered structured and validated questionnaires to this group of people. These were then compared to questionnaires the participants had filled out 1 year after their injury and 5 years after their injury. The questionnaires measured levels of disability, psychological well-being, alcohol use and health status. The study found some level of disability in 51% of survivors at 12-14 years after their admission to hospital with a head injury. This high occurrence is similar to rates found at one year and 5-7 years after injury. The study also found that higher levels of stress and lower levels of self esteem at 5-7 years after injury were associated with greater levels of disability at 12-14 years. However, the study found that disabilities can change over time, with one third of participants reporting an improvement in levels of disability 1-14 years after their injury. Similarly, one quarter of participants reported improvements at a late stage after their injury (between 5-14 years). The authors concluded that for some people with head injury, there is a dynamic process of change in levels of disability over time. Rutterford.N.A. & Wood, R.L. (2006) Psychosocial adjustment 17 years after severe brain injury. J Neurol Neurosurg Psychiatry, 77, pp71-73. This study aimed to evaluate the long term impact of severe head injury. Previous studies had reported poor psychosocial outcomes during the first seven years after injury. However, the authors predicted that there could be further improvements in later years. The study evaluated 80 people who had suffered a severe brain injury. They were contacted on average 17 years after their injury. Participants completed several questionnaires and were also interviewed in the company
of a close relative. The questionnaires measured factors including employment status, relationship status, life satisfaction and community integration. The study found that 72% of participants were living independently, 41% were in either full-time or part time employment and 60% of participants were married or co-habiting. The mean rating of life satisfaction was “slightly dissatisfied� but no emotional problems were found by the study. Average community integration levels were just below those reported by people without a head injury. The authors concluded that long term outcomes following severe head injury may be better than expected from data recorded at earlier stages of recovery. Dikmen, S., Machamer, J.E., Powell, J., & Temkin, N.R. (2003). Outcome 3 to 5 years after moderate to severe traumatic brain injury. Archives of Physical Medicine and rehabilitation, 67(8), pp.507-513. The final study aimed to investigate the neuropsychological, emotional and functional status of people 3-5 years after their head injury, along with measuring their quality of life. The authors evaluated 210 adult patients with moderate to severe Traumatic Brain Injury (TBI). The study used several questionnaires and tests of neuropsychological functioning to gain information on participants. Like the previous article, their study indicated more positive findings in relation to psychosocial outcomes than those reported in earlier studies. Results indicated that 85% of the study sample was completely independent with personal care, with less than 5% being fully dependent. Similarly, 75% were financially independent and 60% were employed. Further, 40% of study participants reported no cognitive problems after 3-5 years. The authors concluded that although the immediate results of TBI have received the most attention, there are also long-term consequences of brain injury which evolve over time. Similarly to the other studies, this study predicted more positive outcomes of brain injury than those suggested by earlier studies.
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Making Headway
Spring/Summer 2014
Diary Dates Contact Information Head Office Blackhall Green, Off Blackhall Place, 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 Monday – Friday, 9 am to 1 pm and 2 – 5 pm (local call rate) Dublin Office Blackhall Green, Off Blackhall Place, 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) Ashe Street Clinic, 36 Ashe Street, Tralee, Co. Kerry Tel: 087 6673857 Psychotherapy and Counselling South East Office 15 Old Dublin Road, Carlow Tel: 059 9134029 Information and Support, Family Support
Find us on Facebook at www.facebook.com/Headway.ie Follow us on Twitter at www.twitter.com/HeadwayIreland 12
Stroke Survivors Day – April 10th
The Irish Heart Foundation annual Stroke Survivors day is being held in Croke park on April 10th. This is a free event, but you will need to register. Check out www.stroke.ie for more info.
Concert in Kilkenny Sat May 24th
The Watergate Theatre, Kilkenny present a concert in aid of Headway on Saturday May 24th at 8pm. Featuring Iarla Ó Lionáird, Mick Hanly, Michael Coady and singers and choirs from across the South and East. More information from http://watergatetheatre.com
Flora Womens Mini Marathon 2nd June
Can you #run4Headway? The race is on the 2nd June but you need to get your registration in early! Check out www.headway.ie/runforheadway for more info.
Family Members Support Groups – Dublin and Limerick These meet regularly once per month in our Dublin and Limerick centres. Keep an eye on www.headway.ie for upcoming dates.
Can you help us bring positive change? A donation can make all the difference. We are currently seeking funds for desperately needed services in Limerick, Cork and Dublin. See www.headway.ie/support for more info How to donate - Four easy ways 1. Online - Go to www.headway.ie and click on Donate. There, you can set up a once off donation or a monthly gift. 2. Post -You can send your donation to the Fundraising Department, Headway Ireland Ltd, Blackhall Green, Off Blackhall Place, Dublin 7. 3. Telephone -Teresa or Siobhan will help you make your donation. Call us on 01 810 2066. 4. Bank - you can lodge it to AIB Bank; Georges St Dunlaoghaire; Sort Code:- 93 34 06 Account:40534408. Please be sure to give your name in the reference so we can know who you are!