Headway AV has benefited numerous people since it was set up – not just survivors and those living with brain injury, but their relatives, carers and professionals who have their best interests at heart.
This is a new section to our website so we’ll be adding more individual stories as we go. If you’ve been assisted by Headway Aylesbury Vale and would like to tell your story to help others faced with the challenges that ABI brings please contact us.
Retired teacher Ian Morgan had to learn again to walk, eat properly and read after being struck down with a huge brain tumour.
The Chesham father-of-three’s life changed dramatically when a benign tumour was discovered growing on the trigeminal nerve, which controls the facial muscles. Despite a successful five-and-a-half hour operation to remove the growth, Mr Morgan had a long and difficult battle to regain his health. He soon discovered things would never quite be the same again. Almost ten years to the day since his first operation on August 5 2004, he credits Headway for helping his recovery and restoring his confidence.
Mr Morgan attends Headway Aylesbury Vale in Wedgewood Street, Fairford Leys, once a week and mainly spends his time painting. On the surface he is articulate and focussed, being able to describe his condition and the history of his health in minute detail.
However, all is not quite what it seems for him, he says. “Walking is difficult and I have to use a stick. I sometimes get number strings confused and if I am not careful, I dial the wrong phone number,” he said. “I forget where things are in my home, so they have to be kept in the same place so I know where they are. But even then I go to the wrong place to find them.” Some of this of course, he admits, could be down to old age, but Mr Morgan says his condition is mainly the result of the tumour which meant he spent more than three months in hospital in rehab.
“I had to learn to focus again so I could see properly again and to eat properly because I couldn’t use half of my mouth,” he recalled.
“I taught myself to read again by taking large print books and gradually scaling down the size of the print I was reading, until it was normal. I was at Amersham Hospital where they taught me to get my balance back and to start walking.”
The tumour was first diagnosed in 2004 after previously fit-and-healthy Mr Morgan had begun falling over for no apparent reason. He was also diagnosed as suffering from water on the brain. At one stage shortly after the diagnosis, the vicar came round and gave him the last rites because “he didn’t think I was going to last very long”.
But the operation and rehabilitation were successful and Mr Morgan was eventually discharged from hospital. Life was far from easy when he returned home, despite the good progress he had made. “People look at me and say I haven’t got brain damage. Part of my brain is still working well, but the part which is damaged affects the way I speak and the way I behave and leads me to tremendous mood swings. I get frustrated because I cannot do things I want to do,” he said. “My wife drew the brunt of my mood swings which left her at her wits’ end,” he said.
It was initially suggested that Mr Morgan seek respite help by attending old people’s groups, but he found this wasn’t suitable for him. Then he was put in touch with Headway Aylesbury Vale in 2009, and he hasn’t looked back since. “An art therapist at Headway saw my drawings and got me painting. As a result of that, I just come and paint here. It’s got my mind working because I have to work out orders of operation,” he said.
“The abstract (art) work helps me focus and recover hand skills and establish colour relationships.”
Headway offers a number of activities at its premises in Fairford Leys, including art, topical discussions, photography and socialising. It caters for survivors of Acquired Brain Injury (ABI), and believes there are about 1,500 people with ABI in the Aylesbury Vale alone.
It is the nearest Headway for Mr Morgan, a former secondary school technology teacher, who drives himself there from his home in Chesham.
Mr Morgan is a licensed local minister (LLM), serving for 25 years previously in the Diocese of Lichfield. He is coming up to ten years now licensed to St Mary’s, Old Amersham with All Saints’ Coleshill, where his wife Heather sings in the Choir. He now leads services and preaches approximately once a month at Hawridge and Cholesbury Church of England churches.
“Acquired Brain Injury can happen to anybody, but Headway has been absolutely brilliant. They have helped me re-establish the confidence in myself and have given my wife a rest.”
Headway Aylesbury Vale Chairman of Trustees Peter Preston said: We are very proud to be able to provide the staff and set of services that support Ian’s discovery of his new reality as a survivor of an acquired brain injury (ABI). It’s great to be able to help survivors and their carers to learn to manage the often dramatic changes that come with brain injury and to see the support that the whole group provides to each other.
Peter largely grew up in Great Ormond Street children’s hospital until he was 10, when he was treated as an out patient until he was 14. His condition is Hydrocephalus, a build-up of fluid on the brain. The excess fluid puts pressure on the brain, which can damage it causing headaches, sickness, blurred vision and difficulty walking. It is controlled by a tube in the brain that drains the fluid.
With a few learning difficulties and some problems with mobility, he worked hard to be independent, learning how to fend for himself whilst growing up in first a mainstream school in London and then at a specialist boarding school. After leaving school he moved in with a family and started work as a cleaner at Charing Cross. Mencap set him up with an apprenticeship working at a major hotel group – Peter knows the London Underground and relished the challenge of finding his way! He worked as porter and in housekeeping for over 5 years.
‘There was a lot of etiquette to learn and things to remember. I was lifting big heavy rubbish bags and putting them down the chutes, as well as checking security. It was quite a tough, physical job but when you’re focused on your responsibilities, you don’t think about your disabilities and it’s amazing what you can do!’
Unfortunately there was a nasty incident at the hotel which resulted in Peter falling down some stairs. He was given an 80% chance of walking again and a 90% chance of talking again, and for 2 years, he couldn’t communicate verbally at all- he could only respond to touch.
By 2002, he had begun talking again, having moved to Aylesbury for residential care and speech therapy. ‘One of the hardest things to adjust to was going from being able to walk to being in a wheelchair, but I did get used to it as the year went by. My mind was telling me that people were staring at me, but I never challenged anyone who made me feel uncomfortable, because I didn’t know how they’d react.’
In 2003, he joined Headway, ‘They really helped me socially, encouraging me to open up and not be so scared of people. After a few years I felt more comfortable with people and a lot more confident.’
Headway has given Peter the opportunity to try new activities and the appetite to try more things – like woodwork and a computer course. He’d like to learn to walk again but takes things one day at a time.
‘I’m happy most of the time. I’ve been married now for seven years and I can’t think of anything about my life that I would like to change. I feel I’ve settled down and found some peace after some very difficult times and many hurdles to get over. My attitude is that it’s best to think about the good things, not concentrate on the bad things. Life without challenges would be very boring!’
Susan qualified as a biochemist and worked locally developing drugs for a well known brand for over 15 years. She was very active, playing hockey, netball, swimming, football and tennis. At 38, after experiencing fainting spells, she had a brain hemorrhage and collapsed, going into a coma for 6 weeks. Susan was in hospital for over 18 months before being moved to a rehabilitation centre in Oxford and was in a wheelchair for 18 months before learning to walk with a frame. She came to Headway over 10 years ago.
Susan used to live by herself in a cottage in Wendover, but now lives in a flat with a live-in carer who helps her out of bed, into the shower and to get dressed – but Susan has discovered a new side to herself after joining Headway.
‘One positive thing about my brain hemorrhage is that my recovery is being helped by all the new activities I can do at Headway – lots of painting, craft, jewellery making, sewing, making boxes and coasters and all sorts of creative things.
I also like to play games like Yahtzee and making up a quiz for everyone to do. I also like to go to the gym every week – taking care, I can now walk unaided and I no longer having to use sticks. I am happy with the progress I am making.’
Susan enjoys cooking, films and reading. ‘I used to read Patricia Cornwell, but I find her difficult to read now. I often get headaches and have problems with my eyes. For the future, I would love to get the use of my right hand back. The operation I had on it two years ago didn’t work, but I still hope something will – fortunately I am left handed!’
In addition to all these activities, Susan practises her singing with the music therapist at Headway as she’d like to join a choir at some point, and is also interested in collage and photography thanks to the art therapist. ‘The staff at Headway are very supportive and I enjoy the one-to-one activities’.
Karen Styles, Centre Manager says, ‘Susan enjoys all the activities and thrives on a routine – she is a great help with menu planning and shopping for lunches at our new facilities. She has learnt many new motor skills through these activities and is a very independent person.’