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Jan
24

Tom was an entrepreneur from a young age and set up his own business in precision engineering by the age of 18. Like many of us, Tom had no idea what life would throw at him. Then 12 years ago, while driving for business, he suffered a brain injury after another car ran into the back of his. The impact caused damage to his front lobe. The father of five had to give up work for 8 years and let his sons run the business. During that time he worked on managing his memory problems and fatigue. You’d think a life-changing accident like this might get you down… but not Tom. His positive outlook shines through.

How did your brain injury affect you?

My memory went quite bad. The accident affected my long and short term memories. I wouldn’t have a notion how to go to a shop in my own town or where the street would be even though I’ve lived in the town about 22 years. I was getting my daughters’ names mixed up with my sisters even though I knew who they were.

How did you work on your recovery?

I was lucky I had help. Acquired Brain Injury Ireland sent a rehabilitation assistant – David Scanlon – he’s a gem. He’s a gift from god to people like myself. He was very helpful. I had to learn to read and write again. I could only go at it for 15-20 mins and he would know when I was too fatigued to continue. He was coming to me twice a week. If I’d overdone it, I wouldn’t recover for the next bit. He helped me manage my fatigue and make progress. Dave was with me about 6 years. I’m well enough now to look after myself and find out things for myself. I was always independent and able to look after myself and keep my house tidy, it’s how I was brought up.

How did you cope with your brain injury?

We are where we are. If you’re not a good patient you’ve no hope of getting better. I kept a positive outlook. I feel that it worked. I didn’t get down. I never came down my stairs without grooming. I had to learn how to keep my balance again. I was sent to a sports therapist used by the Wexford hurling team when they’re injured because he would help them back to full strength. I was lucky as well that my speech was okay. I can drive to work now after I did a test to drive with NRH. I did everything I was asked to do.

How are you today?

I’ll probably never be the same as I was. But you don’t know. Mostly I feel back to myself. I’ve no problem now watching a TV programme but in the beginning, I wouldn’t have remembered what I watched. My memory at the moment is better than a lot of people I know. With a brain injury it’s the only injury you can have and not know. I’m back to a normal routine, I have a lovely lifestyle. I was on a couple of holidays. I had to learn and try very hard with my recovery. When you’re in a learning mode, where does it stop. You crank it up.

What would you say to someone else just diagnosed with a brain injury?

No.1 – you want to listen to the people who know what they’re talking about. My GP sent me to the best of the best. No such thing as saying I can’t do that. In America they’re talking about sending people to Mars… that billion miles is going to start with a single step and the same applies to a brain injury. It might be difficult to remember things and it’s easier to say, aw I can’t do that. But you can take that first step.

What difference did our service make to your life?

Acquired Brain Injury Ireland meant a lot to me. I’d hate to think where I’d be without them. There would be a hell of a void in my life if I’d had to turn down their invitation. If I hadn’t been able to work with David it would have been a disaster for me. I do still go along to the Wexford Clubhouse and thanks to Acquired Brain Injury Ireland I am officially an artist. There was no art when I was going to school, I’d never done it before. Every Christmas I choose a piece of my art and I go to the printer and I run off a couple of 100 cards and I give them out at Christmas time. After my car accident, I said this in the high court in Dublin- I told the judge I’m with Acquired Brain Injury Ireland and if you have somebody in my position you should recommend it to them because the management choose the staff carefully for their kindness.

If you are interested in accessing our services, talk to your GP or healthcare professional about making a referral. A consent form must also be completed and returned with the referral form.

 

 

 

 

 

 

 

 

 

Jan
07

When I was only 15 years old I was sent for a scan on my sinus that turned out to be a brain tumour. I’d had blurry vision, morning headaches and facial pain and when I was diagnosed, they told me it was low grade. Five years later, doctors told me the tumour was getting bigger and that it would have to come out.

I wasn’t really taking it in.

Like any 20 year old, I was more concerned about my friend’s 21st birthday party. I didn’t really pay any heed to the seriousness of my situation – that I was going to have brain surgery. I remember I went in laughing to the anaesthetic room. But I was oblivious about what was ahead of me. When I woke up after surgery my left side was paralysed and I thought it was the anaesthetic wearing off. It’s still surreal to think that I was actually paralysed.

From wheelchair to walking

I left hospital in a wheelchair and started intensive physiotherapy programmes. Every day I did about 4 or 5 hours of physio. I think I was in survival mode because I never wanted to believe I couldn’t walk. I struggled to understand what had happened to me. If I couldn’t understand what I was going through, how could friends understand? I felt very alone and felt as though I didn’t have many people on the outside who understood.

I was in denial about my brain injury

After lots of physio, I managed to walk again but now I had a limp and left side weakness. Before my injury I loved cycling and I was keen to get back to it. But after my injury it was hard to accept that I needed to rest. I wouldn’t accept that I was different and I pushed myself very hard. It wasn’t until I did work experience in a Montessori School that it really hit me. I struggled with balance bending over young children and my concentration was really poor. When I had to do jigsaws with the children, I found them hard to do.

Sensory overload was a big thing

When all the children arrived in the mornings with all the noise and chaos, that was difficult for me. My brain was having to work harder to do normal things and I was absolutely fatigued. That was when I really came to accept that I had a brain injury.

New lease of life

I was a very sociable person before my brain injury but afterwards, I really lost my confidence. I didn’t want to leave the house. But now thanks to the Wexford Clubhouse with Acquired Brain Injury Ireland, I have a new lease of life. I’ve rebuilt my confidence to get out and about on day trips with the clubhouse.  I even started aqua aerobics and it’s now one of my favourite things. I’ve started building connections with people and I’m able to do things that I never would have done.

I wouldn’t change a thing

Brain injury recovery is one of the hardest but most rewarding things you’ll ever do in your life. It has taught me to listen to my body. It has taught me acceptance. Every time I share my story, I am healing myself another bit more. To other young people like me, I say: “You have survived a brain injury, you are not defeated, wear your scars with pride, be proud.”

Roisin attends our Wexford Clubhouse where she sees her friends every week. She continues to work on managing fatigue and building personal connections that make a strong support network for the future. She also shared her story with the Irish Independent to help raise awareness of brain injury which is often invisible to many.

Read more about our day services here. Referrals can be made by a healthcare professional and must be submitted with a consent form.

ENDS

 

Jan
07

I don’t think anyone would sit down and have a chat with me today and know I had a brain injury. My injury was always invisible.

But to those who know me best, my struggles weren’t invisible.

Back in 2008, more than 10 years ago, I became very ill out of the blue. I was just 19 years old and it started with a jerk in my leg. This was the first sign of a seizure which put me in Portlaoise Hospital on and off for weeks. I suffered multiple seizures and was transferred to Beaumont Hospital in Dublin. I was treated for many different neurological illnesses, but nothing worked. With every seizure, I was losing a part of myself and coming closer to death.

I even received the last rites twice.

Doctors were fast running out of options. As a last-ditch effort to save me, I was blindly treated for an auto immune triggered Encephalitis (brain swelling), all while in a medically induced coma. Eventually, with treatment I started to come back to life. But I was a shadow of the person I once was. I was seriously compromised. My vocabulary was non-existent, and the psychotic effects of the illness meant I was hallucinating a lot. Recovery was not going to be easy. I received intense speech and language therapy as well as occupational therapy at the NRH. I could express myself and do things for myself again. But I wasn’t ready to face the world as a 19-year-old woman.

My confidence was gone.

When I came home to Laois, I was lucky to get help and support with Acquired Brain Injury Ireland through their community keyworker, Sinead. My aim was to go back and pursue the second year of my degree. Sinead was someone I could talk to, who understood my confusion and frustration with my situation. My friends’ lives were moving on while I was struggling to keep control of mine. It helped more than anyone will ever know to have someone there who understood the ins and outs of my injury and the feelings that went along with it.

Having someone who understood me and my injury made all the difference

My ability to learn had changed too. Short term memory problems meant I had to change my approach to learning in order to get through college. Sinead helped me use different approaches to learning; the most helpful of which was mind-maps. I could approach learning visually and this tool helped me graduate from Maynooth with a 2:1 degree and saw me go on to pursue a Masters. My meetings with Sinead happened over the course of months leading up to my return to college. Without her support both psychologically and practically, I don’t think that return would have been possible.

I was so conscious of my speech for years after my brain injury and my confidence took a huge knock. I also struggled emotionally, and I suffered terribly with fatigue. I’d hit a wall and nothing would bring me back, only a long sleep. Simple things were overwhelming to me.

Over-catastrophizing was one of my favourite hobbies

The first day of my Masters, I missed my bus in Dublin and the tears came. A 22-year-old standing at a bus stop crying, thinking nothing worse could have happened, that my day was completely ruined and nothing could fix it. It was a small thing, but I remember how the anxiety that runs through you makes nothing else matter in that moment. After the brain injury, having the emotional capacity to deal with certain things was not there.

I wouldn’t be here without the support from Acquired Brain Injury Ireland

Brain injuries can be invisible and the stories and struggles behind them can be too. As a person living with an acquired brain injury, the support I received from Acquired Brain Injury Ireland was invaluable to me. In so many ways, if life deals you a brain injury, the odds are stacked against you, because the whole area is under-serviced. But Acquired Brain Injury Ireland has been helping people to get back their lives all over Ireland for so long. They have given a voice to a group of people who may be otherwise voiceless. I’m so thankful to have found a community of people who understand my story and who fight for other people like me.

www.abiireland.ie/donate

ENDS

May
28

Three years ago, Ann Cosgrave went to work like any other day. It was June and she worked full-time as a retail Ann Cosgrave from Wexford shares her story about how she acquired a brain injury after suffering a bleed to the brain suddenly at work. Ann is member of the Clubhouse and women's group in Acquired Brain Injury Ireland's Wexford service.shopping assistant. But on this particular day, everything changed. Ann found she couldn’t work the register. She was muddled and felt strange. She was told later by colleagues that she was rambling and not making sense, talking about someone dying in Eastenders.

Her manager brought her outside for fresh air and when Ann didn’t improve, she wasted no more time and brought her straight to hospital where she underwent tests. Doctors confirmed that Ann had suffered a bleed on the brain, also known as a stroke.

(There are two types of stroke. A stroke can be caused by a clot blocking blood flow to the brain or by a burst blood vessel which results in a brain bleed. One in five people will have a stroke in their lifetime.)

“I had a bleed on the brain while at work. There were no signs, no family history.”

A stroke is so-called because it strikes suddenly, often with little or no warning. Ann was lucky her colleagues acted fast and brought her to hospital. But afterwards, she felt different. She looked and seemed fine on the outside. But on the inside, she was not the same.

“I didn’t want to leave the house. I wouldn’t go anywhere. Looking back, I thought I was happy at home and happy in my own company. That was when Acquired Brain Injury Ireland came to see me. That was one and a half years ago and I’ve been going ever since.”

Thanks to the day services at our Wexford Clubhouse in Rosslare, Ann has built a great network of support through our women’s group where everyone knows each other’s stories. As Ann says herself, It’s not obvious she has had a brain injury. Like many people after stroke and other brain injuries, she finds her memory is affected sometimes and there can be some fatigue.

“I don’t have to explain anything, I can be fully myself.”

She said: “I feel better now that I’m seeing people and getting to know the other women. It’s really nice to come here to the clubhouse where everyone knows about each other. I don’t have to explain anything, I can be fully myself. It gives me really good support and a social network. Plus I really enjoy the activities like sewing and knitting. I’ve even tried my hand at pottery and I really enjoyed that and now I’m half able to do crochet.”

The mum-of-three has become a grandmother for the first time and has already set her sights on a new goal – to crochet a baby blanket with the help of her pals in the clubhouse.

Our Wexford Clubhouse in Drinagh is supported by funding from BNY Mellon and it runs five days a week. Ann joins our women’s group activities every Wednesday and additionally our Clubhouse offers activities to men as well. You can find out more about our day resource services here.

Sep
08

My name is Yvonne Rossiter. I am a 28 year old secondary school teacher from County Wexford.

On an average day in March 2015 I was in work and I felt a strange pain on my right hand side. After multiple trips to Wexford General Hospital and multiple diagnoses from possible collapsed lung to chest infections, I was told I had a Pulmonary Embolism, which is a blood clot in your lung. To dissolve this clot & to prevent any future clotting I was placed on an anti-coagulant called Warfarin for a six-month period. I had to have blood tests on a weekly basis in order to ensure that I was on the correct dose.


School broke for the Summer holidays & I was having the time of my life. I had a truly amazing family holiday to Iceland in July, spent the August bank holiday in Mayo with friends and was really excited as my parents were due to have a joint 50th birthday party on August 8th but unbeknownst to me, this was not meant to be.


I met a close friend for lunch on August 5th and I remember getting home that night but that is now the last thing I remember for a few weeks. I went to bed that night (August 5th) and overnight developed a large intracerebral brain hemorrhage, due to the Warfarin. I was rushed to Vincent’s University Hospital the following morning where they gave me vitamin K to counteract the blood thinning effects of the Warfarin. I was then rushed to Beaumont hospital and on Friday August 7th 2015 I had a Craniotomy, and was then placed in a medically induced coma. A piece of my skull was removed during the procedure & this was placed in my abdomen to keep the piece of bone alive & sterile.


When I woke up at the end of August I was convinced I was still in Iceland, which in a way was great as I had an extended trip! Unfortunately, my memories of this new portion of my trip were mine alone and my family had not had quite as good a trip as I had! My body took some time to adjust after waking up and I couldn’t understand why my body couldn’t do simple things like it used to, I couldn’t hold my balance or even sit upright in bed, I couldn’t read the smallest of articles or hold a pen , all things needed for teaching! As someone who is quite driven and organized, this was a very frustrating time but I was determined to get back to myself as soon as humanly possible. The first date I can properly remember was my mothers Birthday (August 19th). I had to get a friend to write on her birthday card for me but through physio & occupational therapy learnt how to read write & walk again, something which I was extremely nervous about as the piece of skull was still in my abdomen!


The staff in Beaumont hospital were outstanding, the team that looked after me from my neurosurgeon to all the nurses and careers on Adams McConnell ward were second to none & I will never be able to repay them for all they did for me.


I was sent back to Vincent’s hospital and stayed there until September 5th when I was sent home. This is when my recovery definitely accelerated as there is something about being finally able to sleep in your own bed which recovers some confidence. I returned to Beaumont on November 2nd to get the bone flap put back in place and I was home two days later. I had an extremely fast recovery from such a bleed and I returned to work before the Christmas holidays in late December 2015. I could have taken more time off work if I had of wanted to but I was so ready for everything to go back to normal & I was so happy I went back when I did. I knew I was ready.


My-lucky-horseshoe-scar-when-I-woke-upThe-scar-on-my-abdomen-where-the-bone-flap-was-placedNovember-3rd-after-the-bone-flap-was-replaced

My lucky horseshoe scar when I woke up, the scar on my abdomen where the bone flap was placed, and after the bone flap was replaced.


Recovery is not just a physical process but also psychological. As I write this article is it the one year anniversary of my brain hemorrhage and being completely honest it’s very emotional writing all this down for the first time. As I have been focused on getting life back to normal, it is only now that I am realising what I have overcome in such a short space of time and I am so proud and grateful to have recovered as quickly as I have.


August-3rd-2016-Giants-causeway

August 3rd 2016, at the Giants causeway

My intent with writing this is to show that whilst recovery times vary, there is always hope that life can return to normal in a relatively short space of time, although it may be hard to envision it when asking friends and family to read and write for you. Last year on August 5th I was in the middle of a fight for my life, whilst this year I was sitting on the Giants Causeway feeling the most comfortable I have ever been within my own body & mind.


I had a fantastic network of friends and my close family around me, which definitely helped with recovery. I am also certain that ensuring I kept a positive mindset and goal in mind kept my recovery going at speed. Very early on in my recovery I had given myself the goal of being back to work before Christmas break, and I could not be happier that I managed to reach that goal.

So, to conclude I suppose one of the main things I have taken from this experience is that whilst life is unpredictable we are still the drivers of our own ship, and even if your ship takes you on a coma tour of Iceland while family and friends worry at your bedside, there is still hope of a return to not only normality, but the ability to live the best life you can. I certainly intend to do so.

Jun
22

My name is Colm Griffin; I am from Ballyheigue, Co. Kerry. I am an Electrical Design Engineer and work in an SME. I am 35 years of age. I’ve played GAA since I was 8 and took up cycling in 2009 as an alternative as it was flexible and I could plan my cycling around work commitments.

My grandmother died aged 54 from a brain haemorrhage in 1960s.  My Dad (her son) had a surgical procedure in 1980 for his first brain haemorrhage and in 2008 had a second brain haemorrhage from which he died. In November 2014 my eldest brother had a brain haemorrhage which lead to a surgical procedure in Cork University Hospital. At the time of my brother’s surgical procedure the surgeon enquired had the rest of the siblings been scanned for any aneurysms after he learned the family history. He recommended we all be screened.  On this recommendation I was screened in the early part of last year.


From the scan it was found I had a 3mm aneurysm on the right side of my head. I had a consultation with the same surgeon that operated on my brother and after being given all the information and scenarios I decided to have an elective surgery to fix the aneurysm in my head.


 

Colm climbing mountains in the snow with his friends

Colm was very active before the surgery


Surgery and post surgery

I arrived on the 18th November 2015 in CUH and had the surgery. Then I had a blood clot during the surgical procedure which led to a stroke. The complete left side of my body was paralysed. I was operated on again immediately and the clot removed. The aftermath recovery was in an ICU ward for one week followed by four weeks with intensive rehabilitation in the neuro surgery ward in Cork University Hospital (CUH).

A family meeting was scheduled with the multi-disciplinary team in the hospital to agree a plan for my rehab but the only person to show up at the meeting was the physiotherapist. That morning while at my physio session I broke down emotionally, I was in tears as I felt like I was irrelevant to the parties that were to show at the meeting. I felt abandoned; no one gave a crap about me and my rehabilitation in the hospital. It was like; your aneurysm is fixed. Sure it’s time now to go home and sort yourself out to walk and use your left arm. I was so angry that day; I was raging inside. I walked in for a procedure to fix an aneurysm I had, in my engineering head a “Preventative Maintenance” procedure; fix it before it breaks so I’m not a burden on my family or society later in life if it breaks. So I arrived in hospital a 100% fit and healthy 35 year old man with full mobility and now the hospital system thinks I’m fixed yet I’m wobbling around with limp leg, foot and arm and hand that presently does not function at all.


How the HSE can’t see how rehab is as important, if not more important than medical procedure, baffles me! If I had to go again with this medical issue I had; I wouldn’t. Not because of the care or the surgical procedure but due to the limited rehab the hospital system allows. As it stands, I can’t cycle, I can’t drive, I can’t play sport I can’t work, I can’t lift my future children up into my arms!! I understand there is risk in the operation and I signed the waver to acknowledge this. I’m no way blaming the medical professionals that have been part of my medical and rehab team. They’re just tied by the overall management and the ‘system’.


The hydrotherapy pool which I attended in CUH brought my rehab along so much yet the therapists have to try and work with two at a time in a pool no bigger than 16ft x 8ft. The rehab gym in CUH did fabulous work also in bringing my recovery along in such a short amount of time, but from my view I can see that only 3 to 4 staff can work in the gym at a time. The existing CUH rehab services require so much more financial funding to let them carry out their fantastic work, have more time with patients, adequate facilities and staff. There must also be a rehab bed allocation to keep patients until they are able to progress to the next stage of their rehab.


Colm in hospitalColm in hospital, in wheelchar in front of Christmas treesColm in hospital, picture of scar on his head

Colm in hospital after the surgery


Leaving CUH

I was discharged on the 23rd of December.  I had no contact from any member of the HSE in relation to services in the community. I understood the basics but after this it’s being pure luck with word of mouth and my own research. In the meantime, the bills are mounting up. I can’t drive for 6 months as I had a seizure after the operation. My mother has to drive me to all my appointments. My mother is applying for carers allowance (she is a pensioner) and we only found about this service through again word of mouth, right place, right time to hear it. She may not get it. Enable Ireland in Tralee have hydrotherapy pool that I can use privately at €50 a session or €20 a group session but paying is challenging when you’re getting €188 per week….you can see the issue….


I’m really just frustrated at the health system or lack of when you’re discharged from hospital.  It’s non-existent, definitely in Munster and without a doubt in Kerry, end of story when it comes to intensive rehab for patients who are able for it to get them back to where they were before their problem occurred.


Getting into the NRH

I got a bed in the NRH on 3rd February 2016. I think I probably got it because I complained and shouted the loudest. I know everyone on my rehab team in the NRH has worked so hard  getting me to where I am now and for that I’m so grateful but at the same time can’t help feeling that I haven’t got the most out of my time there. I put together all my hours on the timetables for 9 weeks of my 10.5 weeks block of rehab in the hospital. (I threw away Week 1 & 2 timetables). I basically took all my contact hours on my timetables for therapy/sessions of any kind which I have done on my rehab block and compared them against total hours available on my timetables Over 9 weeks of rehab I’ve only been engaged with all my therapies 32% of the time and the other 68% of the time is free time, idle time I like to call it. This is calculated on the basis of 8.30am – 5pm day. It doesn’t include the evening hours from 5pm till 10pm in the hospital. For the national centre, the NRH is not properly resourced and there are many limitations to what they can offer there.  I shared my thoughts with the NRH and made a few recommendations to them too based on my experience.

I made real progress with my leg and hand but finishing in the NRH means I have to start all over again in Kerry General Hospital. I do realise the progress I have made; just look at the photos from where it all started. You work as hard as you can and you’ll have good days, bad days, lazy days, angry days, and deflated days with yourself about your progress. You go through every feeling with it.

Final comments

It will be argued, that’s it’s down to yourself to get better and that is correct 100%! If I could look at the recovery being like a mountain stage of the Tour De France; yes the person has to have the will, the drive, the focus, the believe in himself to reach the top but every now and then they fall off their bike and need a hand to get back on and a push to get moving!
I have written this as brutally honest as I can be. I hope this shows the people who do control the money decisions in the HSE that rehab is an essential part of treatment that services need to be developed and funded properly in order to provide the therapists that are needed. They are the cold face of rehabilitation and they are changing people’s lives every day!

Mar
23

My name is Stephen Shortall and I hale from Durrow in Co. Laois. I attended secondary school in Kilkenny and then UCC where I studied English and Psychology in a BA, staying on to do an MA in English. I graduated in 2010 during the recession and stayed on working in UCC part time, returning to Laois at the end of my contract. I moved to Dublin in 2011 and studied IT and management in DCU through distance learning while working part time. My injury caused me to have to drop out of the degree part of the course. I am the youngest of ten, with seven brothers and two sisters. My father passed away in 1994.

While a story of much and serious injury, I assure you that what follows is not a tale of woe, nor a tale aimed at urging you to live a different life, nor a better life. It is merely a story that some of your circle of friends or family, more than you might think, will live through as well. It is a story that exemplifies the power of rehabilitation and the worth of the many who help with the path to recovery.

Unfortunately, I was not present for my injury. I have no memory of it or the time leading up to it. I have however heard many stories. I fell at approximately 11am on 31st December 2014, down a flight of stairs outside my apartment in Rathmines, Dublin. I was knocked unconscious by the concrete steps. My friends tell of how they found me in a pool of blood at the bottom and how they tried to wake me. They called the ambulance and waited with me, before accompanying me to James’s Hospital and then to Beaumont Hospital for the emergency brain surgery that followed. If one is to have a traumatic incident like this, new year’s eve on the point of midnight is not a good time. It proved difficult to get hold of a family member, made no easier by my friends not knowing any of them, but eventually my sister was found and arrived promptly. She remembers the coldness of my skin and its whiteness. I will not inundate you with stories of how each member of my large family was informed and the course of events regarding each that ensued, but they all made it to the ICU of Beaumont within a few hours.


I was kept in an induced coma, following my surgery, for six days. I had incredible swelling, so much so that my eye lids could not cover my eyes. They used to keep my eyeballs moisturised. I was intubated in case the brain swelling would cause me to stop breathing and to give the brain more of a chance to heal. My family stayed in shifts over the six days. I do not remember the seven days after the coma, but I was barely conscious.


My family were told that I may never speak, walk or even move again. Therefore, each limb that I managed to move brought celebration. Even when I scratched my nose it was noteworthy. I have been told that ‘howerya ma’ were my first words as I turned over and went back to sleep. I came back to speaking, but often there was little sense. They would have the same conversation with me several times. I could never remember or even understand why I was in hospital, why these people were keeping me here.

I also did a couple of embarrassing things. I am told that I told the nurses to “f” off. In response to someone else in my ward who was shouting, I once pleaded with the nurses loudly that they get him whatever the hell he wanted. I told my brother that the woman that he had with him was lovely, that he should marry her. He had known the woman in question for many years and I had attended their wedding two years before my fall. I asked ridiculous questions such as, ‘what is religion’ and enquired why people marry.

My first memory is on the twelfth when the doctor took out the last of the staples in my head. I remember wanting to leave all the time. I was not allowed out of the ward for a few days more. I had no idea why these people were keeping me against my will. I would be told repeatedly, but I could not remember. At least once I packed a bag and tried to leave. I was told that if I could tell them where I was, then I could leave. Apparently ‘here’ is not a satisfactory answer. Eventually I was allowed to be brought to the café by my family. They were told to ask me questions about what I had done during the day, thereby helping my short term memory return. Once I could clearly walk, clean and feed myself, I was discharged. Beaumont is an acute hospital and my bed was needed. They had done their job. I was sent to James’s for three days and then discharged home. If my mother had not been in a place to look after me at home, the hospital would have had no choice but to keep me.

This is when my rehabilitation began, though I was convinced that it was nearly complete. I planned on being back to work in a month, maybe two. I think the swelling on the side of my head did me good. It reminded me that I was not okay and that I should at least wait until it had gone. I would sleep ten hours or more every night, napping often twice a day for two hours each. I missed being able to effectively read.


While in hospital I asked for a favourite book of mine to be brought in, thinking I would use my time with it. While I knew the words, I could not hold the beginning of the sentence in memory long enough to reach the end. I set this as my goal. I would read for an hour or two each day, Stephen Fry’s More Fool Me. In the beginning, rereading sentences until some of the meaning stuck. Though a minor task to accomplish, it was extremely tiring.


I wasn’t allowed to be alone or to cross the road unaided. I walked slowly now, all strength gone. But I was nearly back to normal, nothing that would take too long to fix. My sister in law was a nurse and she advised that I apply to Headway and to Acquired Brain Injury Ireland. In the cover letter to one of these applications the word ‘disability’ was used and I did not take the implication well. I did not want to apply. The process was also demeaning. There is something about rating the bad areas of one’s life to an anonymous party, frequently quite personal in nature, that made me quite angry. Even in asking certain questions there is an implication that the answer will confirm the presence of the issue or problem. I was incredibly enthusiastic about the assumption that all was going very smoothly and that I needed little if any help. My sister filled it all out, asking me the questions.

A case manager from ABI Ireland contacted us, as initial contact is given to the caregiver, again assuming, often quite rightly, that the patient is unable to correspond. She arranged a time to visit and I was gearing myself up to convince her that most things were well. She answered a huge amount of questions, many of which I had not thought to ask, allaying so many of my fear, putting me at ease.


I remember meeting with my consultant. My brother came with me so that I would remember everything. The consultant was really friendly. He was surprised at my progress. He showed me some brain scans taken from the night. I could see the swelling and the fractures in the skull. I had a list of questions and he answered every one. More than once he had to shrug.


For instance, when asked if the headaches would go away, he said that they might, but they might not. He went through my prescription and got rid of much of it. Apparently he visited with me every day after waking from the coma and we would speak, but I don’t remember.

The next few weeks were given to ticking boxes. Medically, visiting with referrals. ENT and rehabilitation in James’s. I performed well. My GP, whom I had to meet first weekly and then monthly, was of great help. He would talk to me and tell me stories. Oddly, an acupuncturist who my mother was visiting, asked me to take an appointment. I went with incredible scepticism, but she obviously gave me what I needed. She also practiced very ‘airy-fairy’ areas, but the talking was incredibly beneficial. She gave me books to read to which I also owe a lot. Some just on positive thinking, others on souls before birth deciding to be born to life a certain life. I love fantasy literature, maybe that is why it was restorative. Likely, now I wouldn’t engage with the subject matter, but it was what I needed at the time.

I was, with incredible luck, brought in to the National Rehabilitation Hospital for an assessment and asked to bring a bag to stay. I was not only lucky that I was given a bed in the NRH, but I was also lucky in being placed in St Patrick’s Ward, the ICU area of the brain injury section. It offered more privacy and more space than was available in the other wards They had many who were high dependency and I believe I fit in as requiring less attention. I would also be short term, only six weeks. The NRH changed everything, in ways that I did not realise they needed changing.

They tested me for everything, asking me what areas I felt I was lacking in. I said that I was afraid I would fall again, that perhaps I had fallen down the stairs because there was something lacking in my balance. They tested me and found that my balance was just fine, nothing to worry about. I was getting dizzy now and again, the room swirling around me. A vestibular physio fixed that for me. I berated myself over lapses in memory and concentration so, probably as natural protocol, I was tested for the different types of memory. There only seemed a deficiency in facial memory, planning and in concentration. It put my mind at ease.


Most of the help came in the form of talking. My occupational therapist and my social worker were incredibly important. So often it was about focusing on the future, planning and taking into account the areas that would be most difficult.


Most importantly, they got me to see that those areas of difficulty were not an example of weakness or failing, but were the natural ramifications of a traumatic injury. I met so many fellow patients in the NRH and we would talk at lunch times and around the quadrangle in between our appointments. We would trade symptoms and stories, showing each other again and again that we were not deficient or odd, simply all experiencing recuperation. There was little to do in the NRH but the wifi was good and there were some great characters there. They showed me that any difficulties I was having were perfectly normal.

An art teacher visited out ward once a week for two hours. I never considered drawing since my ill-fated junior cert art result. She taught me how to draw and I discovered that I enjoyed it. I’d like to say that I remembered that I enjoyed it, but I don’t remember enjoying it so much. It gave me a boost in confidence and did not require concentration or strength.


Drawing of an elephant drawing of a hand drawing of a horse's head and a chicken

Some Stephen’s drawings during his rehabilitation


Stephen's sculpturesWhen I left the hospital I took a sculpture class. Though the three hour classes were exhausting, having a project and the social interactions that came with the others in the class were exactly what I needed.


On being discharged from the NRH I stayed in contact with my occupational therapist and social worker. I was also given outpatient appointments with another occupational therapist. They assessed me for driving and was finally able to return to drive. I now attend counselling in Headway and am a member of a support group there.

Life is good now, but the support I receive is still essential. So often life seems to be about proving I am okay, proving that there is nothing wrong, nothing to see here. I made a list of goals when in NRH that I wished and felt I needed to achieve. The list became steps back to normality and to restoring self-confidence. As the year anniversary of my accident approached, the recent new year, I was focused on completing them all. It was as if, should I complete each one, then I would no longer be ‘that guy who had the brain injury’, no longer the man that needed to be cared for or seen as less than normal. So much of this existed purely in my own mind, but I have learned that it is quite common. It is something that still comes to the surface in my day to day life.

I have mentioned luck so often in this piece. Some of that is simply that there exists knowledge in the area of neuro-rehabilitation, that it is available in Ireland. But I was also lucky in that I was one of the blessed few who would avail of these services. Some never even know that they exist. I am now self-sufficient again, independent and okay. My employer is to be commended for his help during the long months during which I could not work. I owe them much I do not exaggerate when I say that I might not be here if it was not for the people who helped me to recover. I skipped a few things, you see. I sidestepped the breaking down in tears in the early days at home, wondering if it was worth proceeding. I also left out the sleep deprivation in the NRH that led to me breaking down, the psychiatrist seeing me and sleeping tablets being prescribed. There were other episodes I will continue to leave unsaid. I could give you a list of professionals who came at the right time, knew what was needed, helped me sometimes beyond the letter of their job descriptions, but that list is too long for here.


As wonderful as the NRH is, it is far too small and underfunded to serve the needs of the whole country. There is no private option available to patients with insurance. There are two main charities who deal with people in the community, Headway and Acquired Brain Injury Ireland. Though partly funded by the HSE, not all will be able to avail of their services.


There are few families that will not be touched by brain injuries at some point, be they brought on by encephalitis, stroke, accident or cancer. As important as families are in rehabilitation, as mine surely was, there are areas that they cannot cover. Many patients feel burdensome and will not complain in case it is seen as being ungrateful. As nurturing as a family member can be, it cannot be understated how beneficial a professional is, as they with a weight of experience look you in the eye and tell you that something is okay. It is somehow more acceptable to express your natural frustrations and fear to a professional than to a loved one. Many will go without these therapies that are not expensive and are cost-effective, in part due to lack of availability, in part because so many who experience a brain injury may not be able to speak up, perhaps not able to speak at all.

It’s okay, I am nearly finished. I will clamber down off my soapbox, survivor’s guilt scrawled across, and go on my way. I hope your brain remains healthy and untroubled, but now at least you are aware of what services are available, and hopefully you receive what you need if the time comes.

Mar
22

I was born in Limerick in 1977 and grew up in the Rossbrien area with three older sisters and two younger twin brothers.

In 1999, when I was 22 years old I had visited my friend in Nottingham a few times and began to really love the historical cultural city. I decided to interview for a job there and within six days I had upped sticks and moved. I started working as an assistant Quantity Surveyor and worked for four different companies, progressing to senior Quantity Surveyor with a staff of five. It was a job I dearly loved.

I loved the city of Nottingham; it provided me with a great life, both work and play. I bought my first house here in 2005, a listed four storey Georgian House and I restored in to its former glory. This became my home right up until my attack, and I still own it.


One fateful night in July 2009, when I was only 32 years old, my life though was turned upside down and changed forever. I had been out socialising in Nottingham and been to a club, as we normally would. A guy tried to befriend the group that I was in and when they were heading back to my house, this guy asked if he could join us. At the request of one of the girl’s, I said no. At this point this guy pulled me and punched me hard in the face. I fell and hit the right side of my head.


I lost consciousness for two minutes and an ambulance was called. The paramedics arrived, but I came too and insisted I felt ok, I signed a waiver to say I was ok and that’s the biggest mistake I could have made. I vomited during the night but nobody realised just how sick I was. All through the night my brain was bleeding, and the pressure that made built up so much that it further compounded my injuries. By noon the next day, I was unconscious. An ambulance was called and I was taken to Queen’s University Hospital (QUH) in Nottingham. Doctors found I had suffered bruising and bleeding in the brain and a fractured skull resulting from the fall.

I remained in a coma for a few months. All my family were sent for and they travelled over and back for months to be by my bedside. For about a month after coming out of the coma, I couldn’t speak; I also discovered at this time that I had become blind. I began responding first by moving my fingers, then toes; and then my eyes would flicker. As a result of the assault I suffered left sided hemiplegia and hemianasthesia; meaning I have reduced mobility and use of the left hand side of my body and I am confined to a wheelchair.


It’s frightening the damage you can cause to another person, the way you can blow their lives apart, its massive really. Through one reckless act, one moment of craziness, it’s just not worth it, no way.


After being released from Lindon Lodge in Nottingham after a long period of rehabilitation, my family got me a place close to home in Bruree, in Co Limerick. I spent a while there but it was felt that the facility did not meet my rehabilitation needs. My family looked for alternatives and in 2011 I joined Acquired Brain Injury Ireland, a neuro-rehabilitation residential service with 3 other clients in Clarecastle, Co. Clare. I still reside here, and it is a place that very much meets my social, recreational and educational needs along with my continued rehabilitation work.

In 2012, my Family and friends raised the €40,000 needed to fly me to China for stem cell treatment. I feel this has given me some benefits in my rehabilitation goals and I will continue to look at alternative treatments in the future.

It has been six years since I acquired my brain injury and it’s definitely been a challenging time. However I am very determined and today I attend Headway three times a week and have completed the vocational programme there.  I give talks to schools, community groups and other interested parties about my story to educate about the dangers of what can happen on a night out. I go to the gym, swimming and partake in physio with the goal of trying to improve my walk. I can walk with a tripod around my home with the guidance of staff but I hope to become more independent in this in the future.


I am extremely lucky with my support network. My parents are very supportive and have built an extension to their home to allow me to spend time there. My sisters and brothers are a great support and provide me with a social outlet. I receive great neuro-rehabilitation through the day service of Headway and especially from Acquired Brain Injury Ireland, where I truly feel at home in Clarecastle.


I was privileged to receive the Pride of Ireland Award in the summer of 2014. I was honoured with 12 other great Irish people who achieved so much in their lives also. I will continue to work extremely hard so that I become as independent as possible in the future. This is a daily battle for me but one I’m definitely up for.

If you take anything from my story think how quick a punch changed my life forever and how simply that could happen. A moment of madness, it happened in seconds and is lasting a lifetime, remember that.

Feb
24

“Life is just one damn thing after another”, says Donal. For him, brain injury represents just another bump in the journey of life. His work commitments had led him to work longer and longer hours, and his marriage had spiraled towards breakdown. He was drinking in the evenings just to try to get some sleep. Life was becoming unmanageable long before the car accident that left him with memory loss, organizational difficulties, problems with impulse control and aggressive outbursts that have necessitated numerous police interventions, including three arrests.

For many people with acquired brain injury, the narrative they have established to account for their lives involves being a victim of life circumstances. Brain injury represents calamitous loss, and the journey of life is imagined as an attempt to regain or restore the former version of the self. In some cases, complete recovery is not possible, and the journey therefore appears doomed to frustration; either a resigned defeat by life’s circumstances, or an eternal quest for that version of the self that can no longer be.

The traditional treatment model is often designed to train people with brain injury to fit in with the world. Through attempting to build insight, or through skills teaching and contingency mananagement, or through use of medication, the aim often seems to be to help the person with brain injury blend back in to the world. This is increasingly at odds with a more mindfulness- based model, which emphasizes coming to understand and accept the self that you are. It can also contrast with a person-centred approach, which attempts to change the world to create a greater fit with the needs and impairments of the person. A comprehensive model of rehabilitation, then is one that combines all three approaches. It combines an understanding of survivor’s neuropsychological assets and impairments of the person with the psychological and social demands of the environment and seeks to create an individualized environment in which the person can achieve cognitive, emotional and behavioural success.


Neuropsychological assessment, interviewing the person about the impairments they experience and the demands they are facing, observing the person as he or she attempts to overcome those impairments, interviewing people who know the person well; each of these offer the clinician an insight into the world experience of the person, which is the stating point for any neuro-rehabilitation process.


Recovering from brain injury may mean discovering that other narratives are possible. Malia and Brannagan (2007) liken the process of adapting to a brain injury to a hero’s journey. The key components of a hero’s journey are having a real need for change or a more meaningful life, overcoming the challenges faced by departing from our normal state, the land of the known, encountering and embracing adventures along the way, and obtaining enormous benefit at the end of the journey, not from arriving but from having travelled. The person who perseveres and overcomes the challenges of the hero’s journey, who transcends limitations and reaches a new level of meaning, is transformed into something better. The hero becomes a role model for us all.

In Donal’s case, recovery from brain injury meant realizing that life had offered him a second chance. Donal might have been killed in the road traffic collision. Recovery involves realizing that progress is not only made by relearning old skills, but also
by organizing the environment to accommodate or compensate for difficulties now experienced. For example, Donal uses a range of daily and weekly schedules and calendars, to overcome many of the problems with memory he currently experiences. Recovery involves realizing that the person can still live a satisfying life, even though he or she has impairments as a result of the brain injury. With more time on his hands as a result of being out of work, Donal has been able to form friendships and develop the caring side to his nature that the business of his lifestyle before his injury prevented him from developing). Sometimes, there can even be positive consequences to a brain injury, which are worth amplifying. For Donal, recovery from brain injury means becoming comfortable with himself and his life. It means becoming grounded in what really matters.


It means learning to take breaks and to listen to the early signs of strain in the mind and in the body; and learning to sit with pockets of pain that his mind started to run from a long time ago.


In practice, Donal and his neurorehabilitation team have a multi-element plan. In includes adaptations to the environment (a whiteboard on his living room wall, a Google calendar which give him SMS reminders of his schedule; a Dictaphone and notebook for recording important conversations and events); a spreadsheet for organizing and managing complex tasks; a
weekly schedule of exercise to promote recovery and prevent depression; supports for budgeting and menu planning. It includes skills teaching (mindfulness; goal management; scheduling; assertiveness and conflict resolution). It includes focused strategies for avoiding or overcoming problem situations. And it involves knowing how and when to ask for help and rely on others. After a time, the Donal and his rehabilitation assistant develop this plan into a checklist, and gradually, Donal takes more responsibility for maintaining the supports he has learned keep him in a life of his choosing.

For many, a brain injury is experienced as a sudden and violent rupture in life’s journey, for which there appears to be no possible explanation. Sometimes, it seems, the only possible explanation is that there is no explanation; that we do not have the gift of writing the script for life, and that we all must at some stage accept suffering as a natural fact of human existence and face up to our challenges. It is not easy, but it is the first step on a truly heroic journey.

Feb
24

Brain injury can happen in seconds and change your life forever. We never think about this or take time to learn more about it as we don’t think it will ever happen to us. Well it happened to me six years ago, when my husband of three years suffered a stroke at thirty years young and our lives were changed completely.

On the evening of Friday 16th January 2009 my husband returned home from work and mentioned
he had a bit of a headache and had some difficulty in reading aloud a children’s book to our 15 month old son. He took a couple of pain-killers and went to bed around 10pm. At 6.30am the following morning I got up as I was quite restless as I was in my 40th week of pregnancy. I spoke to my husband to say I was going down stairs and he replied that he was going to sleep on.

At 7.30am, I heard my husband moving around upstairs and the he walked down the stairs and entered the sitting room and spoke to me with slurred speech and a fallen face. I asked him to sit down and asked his name and what the day was. He could answer all questions correctly but he was feeling funny and his arm movement was impacted. I rang D-Doc to ask what should I do and explained the symptoms and they asked if he could walk and if so, I should put him in the car and bring him to our local A&E which was close by. A few minutes later we were at the A&E and the triage nurse interviewed us and my husband struggled to answer his questions. My husband was put on a trolley and examined several times over the next few hours by doctors and nurses and around lunch time was given a CT scan. By this time my husband had lost all his ability to speech and was hemiplegic with total paralysis down his right side. The scan showed a clot in the left side of his brain and an aspirin was administered and the staff started proceedings to admit him to a ward. The doctors spoke with me and informed me that there was neurological damage in the left cerebellum but that they would need an MRI scan to complete the diagnosis. The hospital did not have its own MRI scanner and said they would make inquiries to see if this could at Beaumont hospital and possibly on Monday or Tuesday. I asked if they could send my husband’s CT scan to Beaumont Hospital and request an MRI sooner and if it was possible to transfer him to there as they had a Neurology department.

At 9pm that evening my husband was transferred the short distance of 10 miles to Beaumont Hospital and had an MRI scan and a full diagnosis given by 11pm that night. His stroke was due to the spontaneous dissection of the carotid artery in his neck and some of the internal lining of the carotid had peeled away and travelled up to his brain and formed a clot. The MRI scan showed a black area about the size of a golf ball in the brain which had suffered from lack of blood supply. At this stage they said there was nothing they could do to reverse the damage and that the next two weeks were critical and they would monitor him closely for any other neurological changes. I came to learn later about treatments such as the clot-busting drug, thrombolysis which breaks up the blood clot with powerful blood thinners and must be administered within 3-4 hours of the stroke. I still wonder how different things might be today, if only I had brought my husband directly to Beaumont Hospital and then he may have been seen by an on-call Neurology specialist and had the CT scan sooner and then possibly be in a position to get the clot-busting drug.


A stroke is not like a broken leg – there is not time to think about what you might do and where you might go, the clock is ticking and the longer the delay before the clot is confirmed and a clot busting drug administered the more of a person is lost. Recent research claims that every 15-minute delay in receiving a clot-busting drug means stroke survivors will have about one month less of a disability-free life, while every minute sooner that they receive the drug translates into more than one extra day of healthy life.


It was difficult to even comprehend why my husband had suffered a stroke as he was young, fit and healthy, a non-smoker and only a social drinker. After all the tests and examination of family history there was no medical reason determined for why the dissection of the carotid artery had occurred – it was just a random stroke of misfortune. It came as a huge shock to me and the rest of our families and at a time we least suspected it. Our eldest son was only 15 months old and we were due our second child that week. In any case, my husband remained on the critical list for two weeks and our second son didn’t appear until things had stabilised and arrived 15 days overdue.

From day one of the stroke, I quickly had to educate myself on acquired brain injuries and neuro- rehabilitation and work closely every day with doctors, nurses and therapists to make plans and work together to look after my husband. For the first few weeks my husband could not make any audible sound and we learnt to communicate with him by asking yes/no questions to which he answered with a thumbs up/down gesture. My husband spent five weeks in Beaumont Hospital and then a further 14 weeks and the National Rehabilitation Hospital (NRH) in Dun Laoghaire. During this time he made steady recovery and regained his ability to walk through hours of intense physiotherapy. He recovered his ability to speak words and then form small sentences over these months, albeit with lots of errors and much slowed. We were so grateful that my husband got the opportunity to attend the NRH and benefit so much from the in-patient programme. By the time he returned home in May 2009, he was able to walk unassisted and even to make his way upstairs while wearing a bespoke ankle foot orthotic to help with the leg drop. His arm never recovered any motion and his speech and communication was still a major difficulty.

Once my husband was back home, it fell solely to me to coordinate and manage his neuro-rehabilitation. Every day I looked after him and my two sons, booking and attending appointments with consultants, physiotherapists, occupational therapists, speech and language therapists, etc… I wanted my husband to receive the best possible neuro-rehabilitation that he could and that was available to him. I wanted more than anything for him to regain the life he once had and I believed he could do it or at least come close.


As a carer, I learnt early on that you can’t leave it to anyone else to advocate for your loved one and that you have to take charge of it yourself no matter how daunting a task it may seem.


A year after my husband’s stoke and as I continued to look for ABI supports I met with the local case manager from Acquired Brain Injury Ireland (ABI Ireland) who became the most invaluable support to my husband and our family. ABI Ireland empowered my husband to put no limits on his rehabilitation recovery and strive to achieve his goals. They never said never. We had a close team of rehabilitation assistants (RAs) whom collaborated with my husband and I to set monthly goals and then supported him in achieving those goals. We opened up our home to the ABI Ireland team and for the next four years they became like new family members.

As a result of his stroke my husband suffered permanent mobility issues, speech and language difficulties, loss of the use of his right arm and became epileptic. However one of the biggest losses he suffered was the role of being a dad. For the first three years, he was extremely busy with his rehabilitation schedule and had little time or energy for being a parent. At this stage, we made a positive decision together to try and put his stroke behind us and get on with the rest of our lives. So, we decided to try for a third baby and two and a half years ago my husband became a father for a third time to a little girl. Due to his stroke and intense rehabilitation my husband had missed out on our first two children as infants; and this time round one of his main neuro-rehabilitation goals became regaining his role as a parent.

His rehabilitation with ABI Ireland continued for another next year and with another new focus – that of returning to work as a Device Engineer in Intel. The management and occupational health staff supported this return on a phased basis and my husband has now been back at work for the past eighteen months. After four and a half years absent, he returned on a 12- hour week and has gradually built it up to a 32-hour week. His job requires computational modelling and data processing and using skills he acquired during his PhD in Physics. His talk is a still a bit slow and his colleagues and manager have been hugely supportive of his return. Currently, he works from 8am-2pm five- days per week and then collects our two sons from primary school and minds his three children at home for the afternoon. He makes the dinner most evenings and brings our eldest son to GAA two evenings per week. Six years ago I never thought this would have been possible but today I know that the right rehabilitation at the right time can work miracles. It can change lives.


As for me, people ask me all the time how do you do it? How do you cope? I think I took on the concept that life was not over we just have a hurdle to jump and we were jumping it together. My saving graces were my children and my career; for any carer it’s important to have something that’s your own identity.


Luckily, I was on maternity leave for most of the first year after my husband’s stroke and so I was able to spend that time at home. I started as a University Lecturer a year after I completed by PhD in physics and have always had great colleagues and support from management and none more so than when I returned to work.

In the University, I was allowed be ‘me’ as opposed to a carer; it gave me a healthy perspective on life. I’ve also had the benefit of a close network of people who gave me a safe environment to talk and vent when I needed it. I think it’s important to have your own supports too when you are a carer, to keep yourself strong for the loved one you are caring for. The greatest demand on me as a carer was to be the enabler of my husband’s recovery.

Having read this story my hope for society is that one day we will have an increased societal understanding of how the brain works and a wider acceptance of non- neurotypical behaviour. I hope that people will open their minds and become educated about acquired brain injury; realising that although it is a change in brain function the person inside is still the same. Life is not over; it just took a different pathway.

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