Emma’s Story

Emma was just a child when she was diagnosed with Leukaemia, and although she endured the harshest, most toxic treatments available at that time, then relapsed and experienced a Bone Marrow Transplant, she survived and went on to live a full, and eventful life for 20 years. This is because she was a child, she focused on Life, ambition, and so felt able to achieve all she could be.

After suffering from a Stroke at the age of 26, she struggled to find the same level of Energy, and Life Force. Understanding why she had the Stroke in the first place, and then learning how to rekindle that flame, using Energy, Compassion, Music and Art has been an amazing journey.

The music in this video was composed by Stuart Mitchell, it was created using Emma’s DNA.

“DNA music exists within every living organism universally and now we have the technology to unlock a symphony from within everyone for a better and more aesthetic understanding of life, ourselves and each other”.
Stuart Mitchell

The music was then played through a Cymascope, created by John Stuart Ried,
And Emma’s DNA Music became visible as a Mandala.

Dan Winter explains how Light and Sound waves SHAPE our reality.
Coherence of the Heart, Compassion, a Shareable Wave

Emmas Mandala 2 copy

In 2011, Dr Hugh Griffiths was National Clinical Director for Mental Health.

An extract taken from the information leaflet produce by the Mental Health Network

No Health without Mental Health, Our national strategy for England, clearly calls for good, patient centered treatment together with joined up, personalized pathways and systems. The economic context adds
to the emphasis that all interventions must be as efficient as possible at delivering outcomes that are cost effective and safe.
I welcome this up-to-date compendium. It supports the strategy by setting out some of the key roles of psychological and Psychiatric interventions in the treatment of long term physical illness and medically unexplained symptoms.
It has been sponsored and funded by strategic health authority mental health leads and by the Dept. Of Health, in partnership with the Mental Health Network. Their common goal has been to support the actions of health and social care commissioners, clinicians and providers to meet the whole of their patients’ mental and physical health needs – which, too often, are only partially addressed – while also improving productivity and spreading learning across disease-specific local clinical
networks.
The challenge of ensuring that patients’ needs are met holistically, effectively and efficiently is a responsibility for all of us involved in our health and social care services.
To help us do this, the authors have brought together robust clinical evidence, emerging economic analysis, and current examples of service design and delivery. With the emphasis on Quality, Innovation, Productivity and Prevention (QIPP) and the roll-out of Improving Access to Psychological Treatments (IAPT), both further service examples and additional economic evidence will inevitably emerge in the next few years.
The evidence set out in this compendium will support us in the ongoing processes of investment, integration, redesign and continual quality improvement.   

Emma had sustained an Acquired Brain Injury from a Sub-arachnoid
Haemorrhagic (Stroke). December 6th 2011. The symptoms that occur when someone has a Stroke, depends on which side of the brain is damaged. If the left side of the brain is damaged, the effects appear on the right side of the body…..if the right side of the brain is damaged, the effects appear on the left. This is because of the ‘contra-lateral’ relationship between the brain and the body.
Emma’s brain was damaged on the right……therefore; the physical results of this damage are noticeable on her left side, (Hemiplegia), and include a reduced functional capacity, activity intolerance and fatigue, muscle wastage, partial paralysis, and residual gait deviations. Associated symptoms are memory loss, depression, anxiety and an overwhelming sense of uncertainty.
Hemiplegia affects Emma’s face, her left arm and her left leg. She has difficulty with everyday activities such as walking and grasping objects.
Several variables may influence the magnitude of these deficits. These include age, gender, de-conditioning due to immobilisation, risk status, associated severity of neurological involvement, possibility of heart disease and the effect of all conditions i.e. diabetes, pulmonary disease, and osteoporosis. Medications, the degree of social support, and
the provision of rehabilitation at an early stage.
Paralysis happens when there is damage in the chain of nerve cells called the ‘motor pathway’. They run from the brain through the spinal chord into the muscles, any damage reduces the brain’s ability to control the muscles’ movement.

• Types of paralysis:
• Monoplegia – affecting only one limb
• Diplegia – affecting the same body region on both sides
of the body
• Hemiplegia – affecting one side of the body
• Paraplegia – affecting both legs and the trunk
• Quadriplegia – affecting all four limbs and the trunk

Emma has Hemiplegia down her left side.

What is tone?:
The meaning of ‘tone’ is the amount of tension or resistance to movement in muscles. Normal tone is high enough to resist the
effects of gravity in both posture and movement, yet low enough
to allow freedom of movement. After a stroke often one or a combination of two extremes is seen.
Spasticity: – High tone – tightening
Flaccidity: – Low tone – no control
Emma had Spasticity in her left hand and leg.

What is aphasia?:
Where language, reasoning, understanding and speaking are a
problem. 40% of Stroke Survivors suffer with this. The
degree of communication deficit, both expressive and receptive
will have a significant impact on the success of any
rehabilitative programme, and alternative methods of
communication may need to be sought and practiced in
preparation for on-going therapy. Participation issues also
need to be addressed as survivors can tend to avoid situations
where attempting conversation may be unavoidable.
Emma had aphasia, she could not communicate initially and found
reasoning and understanding in social situations extremely difficult. She lost trust when those around her didn’t understand or assist her, she gave up wanting to try.
This is where the NHS failed, and NLP really helped Emma, new pathways within the brain were reconnected and Emma’s communication abilities returned.
What is dysarthria?:
This is related to aphasia, when a stroke can affect the
muscles used when talking i.e. tongue, palate and lips.
Articulation becomes difficult, speech becomes slurred,
distorted and slow so others may not be able to understand
which destroys self confidence.

Emma had difficulty articulating speech, she had slight
paralysis in the left side of her face and tongue so also had
difficulty in eating and drinking. She found it difficult to
reason and understand people, so again became introverted and
distant.

What is visual neglect?:
The ‘visual field’ is the term used to describe the whole of
your vision. Visual Neglect is a lack of awareness to one half
of your body (or space) as well as difficulties with judging
depth and movement. The damage the stroke does in the brain
impacts the visual pathways of the eye which can result in
visual field loss, blurry vision, double vision and moving
images.
Emma presented with Diabetes Type 1 post Stroke, recent eye tests revealed she has now developed Cataracts in both eyes.
With a combination of Hemiplegia on her left side, (so her left arm and leg were very weak) plus ‘Visual Neglect’ as well as Cataracts Emma struggled to judge depth and movement, so became unable to walk or balance well initially.
Bowel and bladder control   Urinary incontinence – being unable to control urination, urinary retention – trouble urinating or not completly emptying the bladder, Constipation – being unable to have a regular
bowel movement, Bowel incontinence – being unable to control
the release of stools.
These issues occur when stroke has damaged the part of the brain that controls waste removal or brain signals for it.
Emma had difficulty controlling both bladder and bowels leading to embarrassment and reluctance to venture out in public. Her self-esteem plummeted.

How is improvement in rehabilitation measured

The quality of rehabilitation for Stroke Survivors on the NHS is not very clear, or sustainable, most rehabilitation programs start too late, or not at all, or finish far too early. Each Stroke is different, and as stated before each is also affected by age, gender, etc. so there are many
‘interventions that might help some, but not others such as Functional Electrical Stimulation (FES) to robotics, plus Botox, but these only tackle some of the physical symptoms and hardly any of the emotional. Stroke Survivors have a multitude of complex issues on all levels, physical and emotional. Improvements can continue long after the Stroke, so rehabilitation and self-help techniques need to be introduced and sustained long term.
Setting Goals is very important.
Start by exploring the current limitations and understanding what they are then with help aim to reach these six goals

1. Correct balance, co-ordination and posture over time
2. Increase muscular, tendon and ligament strength and
fitness over time
3. Decrease spasticity and increase specific functional
movement return over time
4. Increase confidence and remove fear of the consequences
of exercising
5. Become progressively more self-sufficient
6. Become productive in an occupation and be happy with
life.
These goals can be achieved ‘if you want them badly enough’, so
it is necessary to engage and have the motivation and this is where Neuro Linguistic Programming can really help. 


Motivation comes from our inner dialogue, our emotional state, who we think we are, and what we believe we can become.

Emma couldn’t walk, talk, swallow or do anything for herself when she had her Stroke in 2011.                    Her Stroke was caused by a weakness in the veins in her brain, this occurred as a result of her Childhood Cancer Treatment.   Emma had received high doses of Chemo and Radiotherapy to her brain and spine, regularly throughout her formative years, so of course, inevitably damage was done. 

We already knew, keeping Emma focused on the positive as a child had worked, she had found inner strength to recover from her Childhood experiences by staying focused, she was given goals to aim for, special outings to look forward to, the belief she would get better, and this increased her Life Energy.   All the Pediatric nurses understood how important that was, they created an atmosphere to enhance that belief system.   Just the thought and the belief she would be able to get out of hospital, see her friends, and engage in normal activities helped Emma recover.  Being told she could on a daily basis, given love and support by everyone around her gave her the courage to try….. as a Child.

However, as an adult things were SO different.   That is why I have decided to publish Emma’s story.  Our experience has shown how Adult Services do not compare to Pediatric Care, compassion has been lost. Alternative and Complimentary therapies have been literally a life line for Emma as she has gradually ‘come back to us’ from Nirvana.   We discovered the Holisitic Approach to Health and Wellbeing helped us in many different ways, Mentally, Physically, Emotionally as well as Spiritually and we now want to share what we have learned.  

Emma was placed on an Adult Medical Ward, where many of the patients were elderly women with Dementia or very ill.  After waking from her coma, Emma was placed next to an elderly lady who clearly was distressed, trying to climb out of her bed.  The doors were locked on the inside of that ward, in case patients decided to try to escape! 

Not knowing where she was, or what had happened, Emma searched frantically for my hand, and held it very tightly; she was petrified, and couldn’t communicate but as her Mum, I KNEW.   During the operation on her brain, a feeding tube had been inserted down her nose, passed the small bones in her ear.    For some reason her eardrum had been perforated and dark liquid began to ooze from her ear.   My husband and I were told by a Junior Doctor, the perforation was caused by ‘a fungal infection’ which had come from inside the ear and burst through the eardrum???  No one was admitting anything, but the same junior doctor on duty then prescribed some ear ‘drops’!!!   In my humble opinion, as a Mother, (one who had nursed Emma through her Childhood Cancer), …….putting any liquid into an ear with a burst eardrum, especially after brain surgery was an extremely dangerous thing to do, wouldn’t you say?  No one seemed to want to listen to me which I found odd, and I seemed to be ‘in the way’.  So different from how I was treated on the Pediatric Ward.    

Emma couldn’t hear well, she was confused, very frightened, she had a brain injury and a large, loose bone flap on the right side of her head which pulsed, moving under the dressings!  An argument ensued, when I refused to leave after a nurse leaned across Emma’s head to administer the ear drops…..she leaned on the bone flap …!!   I knew then I couldn’t leave Emma, I didn’t have any trust in the nursing staff, and Emma didn’t want me to go, she was so scared.

I am sorry to say, I witnessed some dreadful nursing during Emma’s stay on that Ward, and although I had heard about bad Elderly Care incidents on the T.V. like a lot of us have, I never dreamed Emma would be thrust into that situation and have to endure it without any redress.    We were used to Pediatric Care, compassionate nursing, love and support, but this was not offered to Emma because she was  ‘an Adult’.   It was a very dark time for us all, I refused to leave Emma’s side for a month.

Dr Hugh Griffiths continues in his report:

People with long-term physical health conditions will often
have psychological and emotional needs resulting from the
burden of illness-related symptoms, the disability associated
with the physical illness, and the impact of living with more
than one physical condition at any time.     For some, a mental
health disorder will also be present. In the face of such
multi-morbidity, personalized planning of care, including a
collaborative care approach, is required to facilitate
meaningful management plans 

So, understanding this, and having experienced already the benefits of Emotional support –

My husband and I were keen to find out what Care Plan was going to be given to Emma, as she had obvious Long Term care needs.  Again, it soon became clear ‘we’ were not going to be consulted, and were told if we did want to be, we would need to get ‘Legal Power of Attorney’ over our own daughter as she could NOT communicate !!!   Due to cuts in the Health service and disputes between Commissioning bodies over funding (CCG’s), Emma’s care was compromised.  We lived on the border between two counties, so the two CCG’s overarching those counties argued over who was going to ‘pay’.  I began to investigate why, and discovered a whole new can of worms.  

We did get Power of Attorney which in itself was traumatic, then tried desperately to find Emma the right Care we knew she needed but soon discovered unless we could PAY Emma wouldn’t receive the correct level of treatment.   We were witnessing the break up of the NHS first hand.