Brain injury and me during Action Brain Injury Week

One of the most powerful organs in our body: the brain. It controls our movement, thoughts, feelings and makes us who we are. Acquiring a brain injury can turn lives upside down, for the person directly affected and their carers. However, there is life after brain injury.

Brain injury can leave life significantly changed.

Everything you once knew may change, memories may no longer be the same, and daily tasks that were once easy can become more challenging.

IMPACT

“Our brains control everything we do, think, and feel – they control the very essence of who we are,” explains Luke Griggs, director of communications for Headway.

Action for Brian Injury Week takes place from 20–26 May, and will focus on the impact of fatigue

“Any injury to the brain can change everything we take for granted.”

Two invaluable charities supporting those affected by brain injury are Headway and The Children’s Trust.

Headway is the UK-wide charity that works to improve life after brain injury by providing vital support and information services, whilst The Children’s Trust works to support children and young people with acquired brain injury and neurodisability from across the UK, off ring both residential and community-based rehabilitation services.

Regardless if severe, moderate or minor: acquiring a brain injury can significantly impact a person’s life.

In 2013, Tyler Manley’s life changed when tumour at just seven years old, which saw her undergo 13 hours worth of surgery, followed by chemotherapy and radiotherapy.

FRUSTRATION

“Tyler had to learn how to do everything again. Even now after five years she has problems with balance and coordination, memory, fatigue and her pituitary gland has been affected so she is on numerous medications for life,” explains Tyler’s mother, Liz.

“It’s very difficult to see your child struggling and frustrated because she can’t do the things she used to. Caring for a child who has a brain injury is difficult because you don’t know how much things will going forward.”

Annually 40,000 children in the UK are left with a brain injury

After developing a condition called posterior fossa syndrome, Tyler was left unable to make any movement other than blinking.

Now aged 13, Tyler is still experiencing the effects of her initial diagnosis.

Liz continues: “It has had a massive impact: Tyler is unable to walk without a stick and gets easily fatigued. Friendships have been difficult to maintain because they are at an age when they are seeking independence and due to her problems with memory, and balance, we are unable to let her go with her peers because she is vulnerable if left alone.”

HARDSHIP

Being a young person with an acquired brain injury can come with its own challenges.

As Liz explains, Tyler is missing out on experiences that young people should have due to her brain injury – which can be incredibly isolating.

“If you imagine a brain injury: it can change speech, make processing information difficult, and lead to issues with confidence – all things that can stop people feeling that they are playing an active part in their local community,” explains Headway’s, Luke.

“Slowly, and surely, friendship circles have drifted away and they don’t want to hold their own lives back. It is socially isolating, which is a big issue for younger people with brain injuries.”

Symptoms of brain injury differ for each individual case.

For some, memory loss may be one symptom, in other cases changes to behaviour, or even identity, can be experienced.

“There can be personality changes, to the point of feeling like an entirely new person. Which is a scary concept,” adds Luke. “Brain injury survivors have explained how they identify as a new person, the old person died in their accident and a new person left the hospital to start again.”

In these times, support from organisations and experts is crucial.

GUIDANCE

Tyler received support from The Children’s Trust, who were on hand to help her and Liz during their journey.

It was three years before Liz and Tyler became aware of The Children’s Trust, but since gaining their support it has been instrumental for the family as it was challenging at first to adapt.

Liz urges: “If your child has an acquired brain injury get in touch with The Children’s Trust. They offer support and will attend meetings with you both in school and hospital.

“Knowing they are there is good to know and they will be in touch again when Tyler transitions into college which will be invaluable.

“Caring for someone with a brain injury can be difficult as they become frustrated when they can’t remember things or do the things they used to be able to do,” continues Liz.

“Fatigue also plays a massive part and you have to bear this in mind when planning anything. It’s very hard to watch someone you care about struggle with normal everyday things.”

The impact of brain injury on carers can be significant, especially dependant on the form of injuries a person has experienced.

Luke says: “If someone has got personality changes, if someone has got inhibition, lack of empathy, lack of insight; all these things that can make the person’s behaviour difficult to live with it puts people under incredible strain and pressure constantly – it’s like walking on eggshells sometimes.”

Through the hardship, guidance is available with understanding of brain injury increasing.

Headway provides a number of frontline services, such as its new Brain Injury Identity Card, with cognitive and social rehabilitation and support programmes run by a network of groups and branches across the UK.

The Children’s Trust also offers clinically-approved information covering every stage of brain injury, from being in hospital, going home, and returning to school.

Seeking out the best help, guidance and expertise for your loved one experiencing brain injury is important for adjusting to a new way of life.

Liz concludes: “Focus on the important things and take it one day at a time. Don’t dwell on what could have been– concentrate on getting the best help out there.”