Monday 21 October 2013

The Sound Learning Centre - Third Wednesday meeting, October

Our October 'Third Wednesday' meeting took place last week at the Crossfield Centre in South Hampstead.  A generous turnout gathered to hear the founders of The Sound Learning Centre (SLC) explain and discuss their therapies and treatments for adults and children with conditions such as dyslexia, autism and Aspergers.

SLC is based in Palmers Green, north London, and has been established for nearly 20 years, during which time they have been researching and developing techniques for addressing these, and other, sensory problems.  They have become a leading practitioner in the area (based on the work of Dr Guy Berard) and their experience is drawn upon nationally and internationally.  Principal and neurodevelopmentalist, Pauline Allen, began by drawing comparisons between people they see with these conditions and people who have suffered brain injury where, in most cases, the demonstrable effects - emotional and sensory impairments, behavioral difficulties and such like - are very similar.  During their time they have treated people with brain injury.

Whilst the presentation about their work was long and occasionally quite technical, the audience remained fascinated by a talk which really provided a perspective on how advanced and vital our brains are, and how much we take of their function for granted - especially when hit by one of the conditions treated by the Centre.  Pauline described that whilst a diagnosis, or a name for a difficult condition or behaviour, can be a blessing for a sufferer or a parent responsible for a child, this is only the start of SLC's journey.  Indeed, the SLC is more likely to disregard the 'label' and look deeper for the cause of sensory problems.  Initial investigations will assess the condition via objective tests of things like vision, hearing and primitive reflexes before moving onto treatment.

The treatments themselves are based around the idea of brain plasticity - that the brain is capable of relearning and rewiring - and reinforces that learning over time - hence overcoming or reducing the impact of acquired problems.  So for instance, objective assessment may reveal particular deficiencies or hypersensitivities in hearing, which in turn leads to emotional or behavioural difficulties.  Sound therapies, which modulate the amplitude of the high and low frequencies, can retrain the ears and begin to address or reduce some of the problems which lead to the initial diagnosis (Auditory Integration Training, AIT).  A similar process is achieved with light in Lightwave Simulation (LWS)

The SLC, as well as dealing with problems manifesting themselves in the five senses, deal with issues around balance (which is connected to the auditory system) and spatial perception (e.g. how easy it is to move in space).  As a person without brain injury or sensory impairment, the discussion about scratching an itch on one's own back - and how complicated a manoeuvre this is for the brain - brought into focus how easily a bang on the head could catastrophically change a person's life, and how frustrating it might be to be seemingly trapped in that kind of world.

The SLC is a private establishment, and the discussion after the presentation established that they were neither a medical intervention (reports derived within the SLC for clients were not generally used in medical hearings, for instance), nor a spiritual process.  However, they were convinced that the work that they did was demonstrating clear improvements in the conditions of children and adults suffering from very difficult and trying impairments.  This was backed up by, and described through, a number of case studies and media reports that formed part of the presentation.

The presentation provoked some lively discussion, and those present were invited to listen to the modulated sounds used in the auditory treatments.  Those wishing to find out more should visit the website of the centre, which is set out below.

www.thesoundlearningcentre.co.uk

It should be noted that Headway North London does not recommend particular courses of treatment or action in relation to individual circumstances.  Those considering this, or any other treatment, should take appropriate advice and make themselves aware of possible disbenefits which may exist alongside possible or claimed benefits.

Friday 11 October 2013

Radio Croydon interview - those song choices

I hope some of you were able to listen to yesterday's Brain Tumour Thursday show on Radio Croydon.  If you didn't, there's a link here to the podcast.  Listen from about 1hr 5mins.  Apparently they get upwards of 5000 listeners to the show, so there's some good exposure for Headway North London!  Thanks to Claire and Eileen for letting me loose!

For those wanting to know a bit more about my story, there's a good article here, and there are bits and pieces about my wife and I on the Headway site.

I just wanted to reflect on the songs I chose a little.  Music is such a big part of my life that it took a really long time to come to the final three.  It was also hard because I was trying to choose favourites whilst also being relevant to the topic.  I realised after I'd submitted them that they perfectly reflect the past, present and future.

'Sovereign Light Cafe' is a track from Keane's album 'Strangeland'.  It was released last year and for me, it's the band's best work.  'Sovereign Light Cafe' is the centrepiece of an album that is largely nostalgic, looking back on places and times that were influential and the moments that made people what they are.  It comes from the perspective of adult maturity and experience, of knowing who one is.  The past makes us who we are.  It chimes with me for that reason, but it has added appeal for me because the backdrop is coastal and I too was brought up on the English coast in a slightly downtrodden seaside town.

Darius Rucker was/is the lead singer in an American college band called Hootie and the Blowfish.  They were huge in the early 1990s, and again Hootie are a nostalgic look back for me.  More recently, Rucker has released solo country and western albums and his last, 'Charleston SC, 1966' was released in 2011.  The first track, 'This' is about contentment in the present, an acknowledgement that all sorts of things happen in life and that, right now, despite or because of all those things, I'm okay.  It's a good place to be.

The final track is also fairly recent, from KT Tunstall's 2010 album 'Tiger Suit'.  'Lost' helped me through a difficult time when I needed to make a decision about my future.  For me, the track is a realisation that the path taken is wrong, that she's following the crowd instead of doing what she wants or feels is right - 'what did I do that for - am I am idiot?'.  It's raw and honest, and about choosing the future and having some control over it.  At the time I first heard it, I was uncomfortable where I was, and I did something radical - and have benefited from it since.

I dragged the wife I lost to concerts by all of these artists, and I drag my current wife to them as well.  My 4 year old daughter can sing 'Sovereign Light Cafe' all the way through.  They're important artists to me generally.

I also have a mantra since my wife died - there's no point worrying.  If you can do something about your worry, do it; if you can't do anything about it, then there's no point worrying.  It's worked for me.

Wednesday 9 October 2013

Why Headway is important

I've been made aware recently of the Brain Tumour Thursday programme on Radio Croydon.  The station broadcasts on the internet and, whilst many of the shows are likely to be of interest to people living in Croydon, the brain tumour programme has regular listeners from around the world.  It's presented by Claire Bullimore and her mum Eileen, Claire having survived a brain tumour herself.  I'll be discussing Headway North London on their show tomorrow, October 10.

I've been listening to their show from last week.  It discusses in some depth the issue of guilt.  As the carer of a victim of a brain tumour, I'm well aware of the guilt involved in caring and not being afflicted myself, but I'm also aware of the guilt that the victim suffered as a result of not having the energy to do the things she wanted, of not working, of letting people down, of not being the person she was or wanted to be.  The guilt ripples out as well, to family and friends.  Whilst the guilt is inevitable, it is also irrational but, despite that, it is still felt.

I'm also aware that guilt isn't the exclusive domain of brain tumour sufferer.  I would be surprised if anyone suffering from a disease or condition that diminishes what they would consider their normal self didn't experience some kind of guilt.  There's no doubt that this extends to brain injury survivors - some of whom will have fallen into the brain injured category via a brain tumour!

And there, in a nutshell, is the some of the complexity of dealing with conditions such as brain injury and raising the profile of a charity like Headway.  The brain tumour community can congregate around their clear definable condition and self support, share experiences.  They do cross over into the domain of other conditions, clearly, but if you have a brain tumour, the condition is relatively easy for the lay person to comprehend or appreciate.  Other conditions are similar - strokes for instance.

Brain injury survivors don't tend to have the same circumstances.  Brain injury can be caused by all sorts of things - by falls, assaults, traffic accidents and through conditions like stroke, tumour, encephalitis or aneurysm.  Brain injury is the result of something else - and it's the something else that often forms the focus of a persons recovery.  Whilst every brain injury has similar effects, the nature and extent of those is different in every case and most of what goes on is not physically apparent.  Likewise, brain injury often comes with side effects - loss of sight or other sensory perceptions, epilepsy, difficulties of movement, difficulties with memory - many of which might be addressed individually by medical teams.

Headway tries to provide a focus for people with brain injury, however they find themselves in that community - and remember, no-one is immune from - say - a bad fall.  Headway tries to deal with the person as a whole, and not as a series of conditions or as a victim of something in the past.  It's about the person, helping them through their difficulties and the changes they need to make to their life as a result of their injury.  People who find Headway - and for many it is a case of stumbling across it - really value the interactions they have with the charity, and the local groups provide a valuable focus for discussion, debate, support and friendship.

My brain tumour victim had lots of teams dealing with her different conditions - pills for the epilepsy, memory tests for the mind, implements to help the loss of sight become more manageable and advice to see her through radiotherapy.  No-one dealt with her issues of confidence, self-esteem, frustration, worry and fear within the health service.  We had to find help for that ourselves.  Whilst we found various sources of possible support that could address these things, nowhere did it quite like Headway and no-one else understood it like they did from the context of a brain injury.  This is why supporting Headway is important, and why you should support your local branch.

Monday 23 September 2013

From a carer...

I was sorting out some electronic files on my PC at home last night, and I came across some pictures of my first wife.  She died nearly five years ago now, having sucumbed to a brain tumour.  There aren't many days that go by that I don't spend at least a moment thinking about the eight years she had with that lump in her head and not only thinking about her as a person but the process we went through during that time.

Conversely, I don't spend any time trawling through photographs that were taken during her last couple of years, but they are on my PC, kept for a reason I don't really understand and cannot express, but the sight of them was shocking.

She was a perfectly happy, open, care-free, friendly person, and an experienced and well-liked teacher of 32 when she had the first epileptic seizure in 2000, which threw her out of bed at six in the morning.  She'd had migraines in the past, and the following couple of years saw her going in and out of hospital for monitoring, scans and tests.  At this time, the experts suspected that the brain scans were showing a 'benign cyst', but continued tumour growth and persistent niggling problems with aches and odd thoughts and visions lead to a biopsy in 2003 which diagnosed a grade 2 astrocytoma deep in the right side of the brain.

With the biopsy came brain injury; with that came growing uncertainties, decreasing self confidence, worry about upcoming appointments and scans, and concern that the normal we'd had was never going to be recaptured.  But, we had hope that it would.  Even when the headaches became intolerable, the neck movements more difficult and the sight marginally reduced, we felt that surgery to remove as much of the tumour as possible would see us return to a quieter life.  It was the end of March 2005.

Surgery and chemotherapy saw her eyesight become worse and her short term memory affected.  The medical response to this was to try to deal with the loss of sight and loss of memory as separate problems whereas the reliance on learning new techniques for overcoming sight loss and the reliance on visual cues to overcome memory loss meant they were intrinsically related.  Having had to give up work and having had her life catastrophically altered, there were also issues around self-esteem and self worth that needed to be managed; new social networks needed to be formed and new ways of stimulating her intellectually and creatively had to be found.  These issues were all related to the person, not issues to be managed independently from each other.

We found Headway by accident in early 2006.  In retrospect it was too late - we could have done with them about three years earlier - but Headway House offered a place to go, to be with other people similarly affected by brain injury, to socialise, to blog and to use the computer, to talk about her issues, to be creative and to see places that she otherwise wouldn't get to.  As the burden of care increasingly fell on me as I tried to maintain full time employment as well, Headway also offered a secure place where I did not need to worry about her and offered support for my needs as well.

In the end, the disease progressed and worsened, with complications and unpredictability, meaning that a residential home was the only viable solution for her needs.  Whilst she no longer attended Headway House, the friends she'd made there continued to support us through to her passing in 2008.  The photos I was looking through show the transformation from a bright, glowing, vital young woman to a frail, terrified, damaged person who tried very hard to smile and be positive in the face of devastating changes to what was a promising life.

I've tried to move on too, but after five years I remain haunted by it.  It doesn't dominate me, but it hides in the dark parts of my mind, raising itself in low moments and clinging onto events, songs, images, smells that will take me back to some point in that terrible journey.  The only real light from that whole period was the warmth of Headway; it was only they who really understood the comprehensive and strategic needs of a brain injured person, and they battled hard to find what she needed.

I know that the charity finds it hard all over the country to get to those people with brain injury - a hidden disease that the sufferers themselves may not know they have and GPs often miss or mistake for something more tangible.  I don't know what the answer is, but supporting your local branch is the simplest way to ensure that they can get the resources they need to find the people and to give them support.  Why not seek out yours?

Wednesday 11 September 2013

Brain injury survivors sing for love

A group of eight brain injury survivors are returning to Abbey Road studios in north London this weekend (September 13) to record The Beatles classic, 'All You Need is Love'.  

The eight, all members of Headway North London, had spent four days in August at the studios with the Nordoff Robins charity with the aim of providing some music therapy.  Between them, they chose the song, and added their own flourishes to the track, including Spanish guitar, their own poetry and a very passable David Bowie impression! 

The track is almost complete, and was played to the wider group of members at the summer picnic held at the end of August.  It was well received, and now they return to the studios to finish the piece and record a video.  Largely new to recording music, the members have sung, played the instruments and written the additional words.  The final track - to be made available on the group's website in due course - is uplifting and joyous.

Headway North London is a local group of the national charity, Headway.  Headway campaigns and lobbies for the needs of brain injured people.  Brain injury can occur through illness such as a brain tumour or a stroke, or may occur through an impact such as a traffic accident or an assault.  Brian injury is often thought of as a 'hidden disease'; even professionals sometimes miss symptoms such as emotional, sensual or cognitive impairments.

Headway North London covers the boroughs of Westminster, Camden, Islington, Haringey, Enfield, Brent and Barnet and runs support groups and meetings for their members throughut the year.  They are heavily dependent on charitable donations and the work of a small group of volunteers.

More information about the music, or about Headway North London can be obtained by calling Julie Bridgewater in the London office on 020 7625 3236.  The track will be posted on the groups website, www.headwaynorthlondon.org.

Tuesday 3 September 2013

Headway North London - The Summer Picnic 2013

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We have, for the first time in what seems like years, been blessed with a warm, sunny summer.  I spent the last weekend at the Palmers Green Festival in Enfield, an opportunity to try to get Headway North London into the public conscious whilst they are more interested in cool drinks, ice cream and fairground rides.  Not an easy sell.

But the good weather has allowed Headway North London to hold its summer picnic as planned, outside, on a balmy evening in beautiful Waterlow Park, Highgate.  It's a fitting venue for the charity, the park itself being a charitable donation for Londoners by Sir Sydney Waterlow in the late 19th Century.

The annual August event is always a welcome change from the usual monthly Third Wednesday meeting that it replaces - not because no-one enjoys the usual monthly social and the guest speaker that normally entertains - but because of the opportunity to breathe the outdoor air and meet old friends and new in a more relaxed, informal manner in the joyous gardens.

The picnic began at 6.30, and this year had the theme, 'With The Beatles' to celebrate 50 years since Beatlemania.  Those attending, which included clients, trustees and friends, were invited to come dressed in a Beatles-ish manner, and whilst some touchingly obliged, no-one - as far as I'm aware - was mistaken by passers-by for a young Ringo Starr.  But it was more about the getting together to celebrate the first half of the Headway year, in which Headway North London has sought to find new opportunities and new avenues for its services and meetings.

Though the possibility of a light drizzle threatened in the early stages, it passed and the three hours glided by in a haze of laughter and gentle conversation, with over twenty people contributing to the throng.  The event raised £150 for the charity, and as the light dwindled towards the end of the evening, people drifted back home with some warm memories.

The regular Third Wednesday meetings resume on September 18, at the Crossfield Centre in South Hampstead. The speaker will be announced on the Headway North London website in due course.

Intense and Inspiring..The Beatles by The ComaTones

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I've just had the pleasure of listening to a reinterpretation of 'All You Need is Love' by The Beatles.  The track begins with a Spanish guitar before a gentle female voice recites a poem about being knocked off her feet 18 years ago.  The repetitive strain of 'All You Need is Love' follows - love, love, love - before a series of voices list some of the more uplifting Beatles titles - Come Together, Here Comes the Sun, Please Please Me - in a joyous rap; then an oddly enchanting Bowie impersonation cites another personal poem over the continuing loop of all consuming love.  It's genuinely powerful and cleverly, beautifully put together.

The track - recorded by seven members of local charity Headway North London in four afternoons during August - is the culmination of a  music therapy summer project in conjunction with the Nordoff Robbins charity.  All of the members taking part are brain injured; that is, they have all suffered from some event in their lives which has affected the way their brain works which has, in turn, affected profoundly the way that they can live their lives.
Julie, the owner of the gentle female voice at the start of the track, was indeed knocked off her feet 18 years ago, but rather than it being by love, it was by a car.  She was left comatose and, all these years later, she's still fighting to ensure that people like her - now brain injured and coping with it for life - are able to take part in society, maintain their confidence and self esteem and offer something to the world as a whole.

Talking to me, Julie describes the four afternoons as, 'inspiring and intense'.  For her, just organising herself to be in a place for four consecutive days is a challenge.  The effort involved in coming up with ideas for a song, facing the pressure to sing and perform and play instruments - all in front of other people and in the presence of music professionals in a recording studio - and trying to remember to bring her harmonica for the sessions adds many layers to an already crowded and potentially confusing few days.  It would be draining for anyone, but brain injury brings with it all sorts of side effects, such as tiredness, deprivation of senses, emotional problems and a fragile self confidence.

But in recalling the experience and listening to the song now, she reflects on a hugely rewarding and powerful week, not only for her but for her band mates - she calls them The ComaTones and already dreams of a tour and merchandise.  Almost overcome by fear of his ability, the Spanish guitar player has to gather up all of his courage to play the introduction, despite being talented enough to feature in a BBC4 documentary; the opportunity drives one member to make the tortuous and difficult trip from his house to the studio each day; despite not having musical backgrounds or a singing voice, all contribute with apparent gusto, playing the bass, percussion and singing and speaking the chosen words.  During a heated debate about what they might sing, one member steps aside for a rest and sits at the piano.  Not having played since his brain injury, he belts out the theme from 'Chariots of Fire', silences the rest of the group and is amazed by his latent talent and probably reintroduces to his life the love of playing an instrument.

Brain injury is hidden to most people and misunderstood by those who might have heard of it.  You can't see it, or put a plaster over it.  Some of those affected by it don't even know they may have it.  Brain injury can come about by way of a road traffic accident, or an assault or a fall; or through disease such as a tumour or a stroke.  Brain injury is very common - it changes a person, their thoughts, their moods, the way they feel about themselves.  It is hard to acknowledge and virtually impossible to heal.  But with charities like Headway North London and Nordoff Robbins, the issues facing those with brain injuries can be addressed.  As with anything, you only need to provide the right tools in life to make ANYONE shine.  This is what these charities do, day in day out.  The wholly uplifting stories coming out of this short week for seven such people is small testament to that.  Why not check them out, and even help them out too?