Living well with brain injury Call 01892 619 001

Learn more about the journeys of those we have supported. Names have been changed.

Jo – My Story

“Back in 2015 I fell from a loft.  At the time I was a highly qualified gas boiler engineer and running my own business. What occurred in a split second is one of the few events of my recent life which is indelibly printed into my memory; a memory now challenged on a daily basis by the simplest of tasks such as making a cup of tea or keeping appointments, which I do by setting the alarm on my watch in descending increments of 30 minutes.

I was rendered unconscious, but somehow managed to drive myself home.  After taking a bath and under persuasion from my partner I went to A & E where I was CT scanned, revealing a bleed on the brain. I was discharged the following day.

During the ensuing 6-7 weeks an occasional speech impediment started to occur with alarming regularity and I endured two urinary infections, as well as an attack of pneumonia. My body had gone into shock.

My traumatic brain injury had effected my frontal lobe. I remain the person I always was, but the accident changed my life.  I can no longer determine hot from cold; my 4 children, have to be pretty patient with me as I am  hypersensitive to sound which I find so distracting. The erratic memory, sleep deprivation, occasional balance problems and an admitted unpredictable temperament are challenging for me and my family.

It means I cannot continue to run my business.  Ripping the signage from my vans was one of my saddest early moments of this crisis when I knew I would never work in the business again and the vans had to be sold.

Brains Matter anchors my life and has provided me with invaluable support.  I have made good friends who understand my situation and don’t judge me.”

Robert – My Story

“While on holiday in Malta in 2015, I had a 3 metre fall from a scenic track during a leisurely, very familiar walk with my wife and my 12 year old grandchild.

I remained in a coma for 4-5 days while my wife had to wrestle with the knowledge that I had, temporarily, lost my memory and she had become a stranger to me. She also had to deal on her own with the repatriation of our grandchild.

My resulting Traumatic Brain Injury (TBI) was finally officially diagnosed by Kings College Hospital, London, after nearly 4 weeks sympathetic care in hospital in Malta. Although I now seem surprisingly able and active, my brain injury has unseen challenges. It is the hidden disability.

I now have unpredictable temperamental moments, can lose taste and smell and even my hearing has become erratic and often unexpectedly fails.

Once I had overcome the physical effects of my accident and the lengthy attention of the neuro-psychologists, my son, contacted Brains Matter.  I found that Brains Matter made the rehabilitation difference offering care that embraced our whole family.”

Stephanie – My Story

“I had a severe car accident leaving me with multiple physical fractures and a frontal lobe brain injury resulting in paralysis down my left side, complete loss of left peripheral vision and loss of smell.

I was in a coma for a little over five weeks. Once I woke, the grinding and painful rehabilitation began, learning once again how to sit, stand, walk, and even talk.

I was in hospital for eight months during which time therapists introduced me to Brains Matter.

At first, after all I had been through, I greatly lacked in confidence. I found it difficult to interact with others, preferring to cocoon myself in the corner of the room.

After a great deal of time and patience given to me by the staff, my self esteem grew and I became willing to participate in some of the social activities Brains Matter offers, for example, cooking, pottery and singing

Brains Matter has been a huge support to me. I do not know how my life would have progressed after my discharge from hospital if it hadn’t been for them.

They have helped me gain the confidence to live independently and to lead a successful life to the best of my abilities.

It is reassuring to know that this charity is always there, focused on supporting the sufferer and their carers, providing a listening ear, advice and practical support where needed.”

Mike – My Story

“On the morning of July 10th 2007, my alarm went off as usual at 6.30am. I didn’t feel well at all, but as a man of routine I went to the bathroom to start getting ready for my day. Whilst in the bathroom I collapsed head first into the bath. My wife heard me and came to see what had happened. I could see her through tunnel vision as though she was a long way away. I was sweating profusely and very grey in colour.

I was taken to hospital by ambulance and diagnosed as having a brain injury as a result of a brain haemorrhage.  I spent eight months recovering in hospital and in a clinic.

The injury had affected my concentration and memory; I could barely remember one item from a shopping list and lived by notes to remind me to do everyday tasks. I suffered from severe depression and lack of confidence.  I lost my family, my home, and my job as an Accounts Manager.

Once out of hospital I became a bit of recluse and then I found support from Brains Matter.

Their range of activities from pottery, word puzzles, trips to the theatre to courses enabled me to improve my memory and confidence. I have also made new friends.

With the support of Brains Matter, I have come a long way including passing my GCSE Maths with an A grade and becoming a Trustee for Brains Matter Charity.”

Natalie – My Story

“Back in month 2015, aged 27, I was working in London as a Recruitment Agent, a job I absolutely loved. I was working my way up the ladder, progressing well and enjoying a good social life.

One morning after chairing a big meeting, I felt really dizzy and my head started spinning I couldn’t read emails and my speech started to slur. At the time I had a cold and put my symptoms down to this.  I left work and went home and slept solidly for 48 hours. Five days later, after seeing a number of doctors, I was told that I had had two bleeds on the brain. One affecting my speech and the other affecting the executive decision making processes – the things you do automatically without thinking.

I was in hospital for six weeks during which time a heart problem was also discovered.  Eventually I was diagnosed with cerebral vasculitis which had resulted in me having two strokes and a heart attack.

A long period of treatment followed with many more hospital admissions.  My life was overtaken by medical tests and procedures.  I had MRIs, CT scans as well as heart MRIs and a brain angiogram. A brain aneurysm was discovered resulting in an emergency operation, I developed seizures along with crushing headaches and had fluid round the heart. I had chemotherapy for eight months to treat the cerebral vasculitis, was prescribed steroids and started working with a speech therapist to regain my speech as well as with an occupational therapist.

The chemotherapy wore me down: it made me feel sick and extremely depressed. I then developed dystonic reactions to the anti-sickness drug.

I lost my hair due to chemotherapy, put on 5 stone due to the steroids and had a voice of a child. I didn’t feel like myself and I could no longer remember what my life had been like before. All the parties, clubbing and work life. It all felt so unfamiliar to me. I had lost confidence and felt as if life had been sucked out of me

I needed to relearn to basic skills such as speaking, moving, crossing the road and catching public transport. I was referred to Brains Matter and through their one to one buddy service started to relearn skills and get out. The buddy made me feel normal again which was great.

Although overwhelming tiredness is still an issue, I now attend activities such as pottery and rock climbing. It gets me up in the morning and I have made some new friends as well. I’ve also gained the confidence to start a voluntary role”