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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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