Friday 16 November 2018

'When I woke from surgery my left side was paralysed'

Róisín Fortune and Tom Hayden tell Arlene Harris how they rebuilt their lives after surgery and a car accident left them with acquired brain injuries

Wexford Clubhouse (for patients with Acquired Brain Injuries) at Drinagh, Wexford. Pictured are Sarah Kavanagh, local services manager Tom Hayden and Róisín Fortune. Picture: Patrick Browne
Wexford Clubhouse (for patients with Acquired Brain Injuries) at Drinagh, Wexford. Pictured are Sarah Kavanagh, local services manager Tom Hayden and Róisín Fortune. Picture: Patrick Browne

When Róisín Fortune was a teenager, she suffered from headaches and blurred vision as well as facial pain. She initially thought there was a problem with her sinuses, but a scan revealed that she had a low-grade brain tumour. For several years its progress was monitored and in 2012, the young woman was told that she would have to have surgery to remove it.

But although she survived the operation, it left her with an Acquired Brain Injury (ABI) which caused paralysis.

"When I found out I had to have surgery, I didn't really take it in," says the 26-year- old. "I went in laughing to the anaesthetic room - oblivious about what was ahead of me. But when I woke up my left side was paralysed. I thought initially that it was just the anaesthetic wearing off and that I'd be fine the following week. But it was a surreal feeling where if someone stabbed me in the left leg I wouldn't have felt it at all because of the motor damage in my brain [post surgery]."

Róisín, who has two younger brothers, completed several courses of intense physiotherapy before finally being able to walk with a splint. Then after three months of treatment at the National Rehabilitation Hospital (NRH), she was back on her feet, albeit without the same mobility she enjoyed before.

And leaving the security of the hospital was hard as her life had been altered drastically and she would now have to try and deal with the other side effects of her ABI.

"I didn't want to leave the NRH as I didn't have many people on the 'outside' who understood what I'd been through," she says. "I felt very alone; I didn't fully realise the extent of what had happened to me so how could friends understand?

"Then in 2014 I was diagnosed with epilepsy due to scar tissue on the brain. The following year I developed chronic pain and while doing work experience in a Montessori school as part of a childcare course, I realised that I had trouble doing jigsaws with the children and had a problem with my balance - this was when I finally had to face the fact that I had a brain injury. My concentration was poor, sensory overload was a big thing for me and I was very fatigued. And the chronic pain was and is awful; every morning my whole body aches and it feels like a very bad hangover or flu - as the day goes on it improves, but I have to force myself to get up or otherwise I would stay in bed all day - it can be very hard."

Six years on from her surgery, Róisín still suffers with epilepsy, pain, sensory overload (even seeing a striped shirt can cause a reaction), anxiety, flashbacks, poor balance, poor cognitive skills and memory problems. Her injuries are not visible but it is estimated that there are around 35,000 people in Ireland suffering with similar problems.

Tom Hayden is another sufferer as after being involved in a minor car accident 12 years ago, he was left with an ABI.

At first he had no idea that the shunting incident had caused damage, but after waking up with a persistent headache the following day, made an appointment with his doctor who sent him for tests. It was revealed that the sudden motion had caused permanent damage.

"A few days after the incident, I was sent to hospital where I had an MRI and lumbar puncture done," says the 68-year-old. "[It was discovered that] a brain injury affected the front and back lobe which impacted my long and short-term memory. I was also very fatigued and due to the injury I was out of work for eight years as my memory was so bad - I didn't have a notion how to get to the shop in the town where I lived for over 20 years.

"But despite this, I was content in myself. The person who crashed into me didn't mean it and when I met him, I shook his hand - that's the sort of person I am."

The Wexford man, who has five children, says his recovery was long and hard but thanks to rehabilitation, he is now able to function very well.

"I was lucky I had help as Acquired Brain Injury Ireland sent a rehabilitation assistant - David Scanlon - who was a gift from God to people like myself," says Tom. "I had to learn to read and write again and could only go at it for 15 minutes before being too fatigued to continue. He helped me twice a week for about six years.

"During my recovery I had a lot of memory problems - I was getting my daughters' names mixed up with my sisters' even though I knew who they were. I was a day patient with the NRH for about a year and did everything I was asked to do. So now I'm much better and am well enough to look after myself, keep my house tidy and drive my car.

"I think if you are not a good patient, you've no hope of getting better - I kept a positive outlook and feel that it worked. I'll probably never be the same as I was but mostly I feel back to myself. But I'd hate to think where I'd be without ABII."

Various types of rehabilitation and support are necessary to help people like Róisín and Tom deal with the effects of an ABI. And while physical recovery and treatment is the main focus in the aftermath of the injury, a multidisciplinary long term plan will usually follow.

Brain injuries can be mild, moderate or severe and they vary from person to person explains Dr Liz Ryan, senior clinical psychologist at Acquired Brain Injury Ireland.

"The issues a person experiences depend on the areas of the brain affected and the extent of the injury," she says. "Each individual will exhibit different symptoms to varying degrees, with some symptoms being relatively minor and some being lasting and requiring lifelong specialist support. Some of the difficulties a person can experience are motor difficulties, problems with memory, language, organising, attention, concentration and fatigue. The person's behaviour may be more impulsive or disinhibited and they may frequently struggle with anxiety and depression in the aftermath of a brain injury. Cognitive Behavioural Therapy is often very helpful in these cases."

Although there is no 'cure' as such for brain injury, research is ongoing and supports have seen patients make great strides. But Dr Ryan says more funding is necessary to help people deal with this life altering situation.

"The Steinberg Lab in Stanford University School of Medicine, California is currently carrying out research on the impact of stem cell transplantation for stroke recovery," says the expert. "Their preclinical data indicates that stem cell injections may enhance stroke recovery in a number of areas of a person's functioning.

"Many of our service users have continued to make significant progress in their functioning for many years with the aid of specialist rehab supports. But there certainly is not enough State funding to support living with a brain injury in the community.

"Acquired Brain Injury Ireland is the leading provider of community rehabilitation for adults of working age (18-65) living with and recovering from an acquired brain injury. But the resources available vary from county to county and are extremely stretched. People with brain injuries are often unable to access 'mainstream' mental health or counselling supports due to such services feeling ill-equipped to meet their complex needs."

The facts: What is ABI and what do you need to know?

- Acquired brain injury (ABI) is an injury to the brain acquired in the course of one's life and can be traumatic or non-traumatic as the result of a traffic accident, a fall or assault, aneurysm or haemorrhage/ stroke, concussion, tumour or damage as a result of brain surgery, seizures, a lack of oxygen to the brain (perhaps from a suicide attempt or near drowning).

- In Ireland approximately 11,000 people are admitted to hospital with a head injury, with a further 10,000 people suffering from stroke each year.

- Up to 35,000 people in Ireland between the ages of 16-65 have an ongoing disability as a result of a brain injury.

- Rehabilitation following brain injury typically involves a multidisciplinary approach including speech and language therapy, neuropsychology, occupational therapy, physiotherapy, rehabilitation assistant support working and social work.

- Brain injury is the foremost cause of death and disability in young people.

To access the services offered by Acquired Brain Injury Ireland, a referral form must be completed by a healthcare professional. For more information see abiireland.ie or call 01-280 4164.

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