Categories
Neurodevelopmental Disability (NDD)

Understanding Developmental Disability

Sad but true! One in five children, in a developing nation like India, emerge into this world with their innate human capital compromised. A range of neurodevelopmental disorders (NDD) are the outcome of such compromise: learning disability, childhood epilepsy, cerebral palsy, mental retardation, attention deficit and hyperactivity disorder, autistic spectrum disorder; conditions that strike early and leave lasting impact on the child. On the occasion of the International Day of People with Disabilities (3rd December) we delve further.

What is neurodevelopmental disability?A range of conditions that follow abnormal brain development and impact on motor function (strength, dexterity, coordination); or cognitive function (intelligence, learning, aptitude); or emotions & behavior (temperament, mood swings, emotionality, aggression, hyperactive-impulsive behaviours, socialization issues etc.). In all these instances, there are demonstrable changes in the brain and its development, either structural or in it’s functioning.

Why NDD? While some humans have NDD imprinted in their biological code (through genetic, hormonal, and other neurobiological factors), for many others, the causes lie in critical stages of development, with a range of factors causing compromise. Factors that affect maternal health around conception and through pregnancy; trauma through injury, drugs (both prescription and non-prescription), alcohol, smoking; exposure of the pregnant mother to infections or toxins; and maternal malnutrition, commonly compromise this desired state of “optimality”. Factors affecting the child include birth trauma and infection through poorly planned and executed deliveries, neonatal compromise (asphyxia, jaundice, early trauma through accidents or abuse, infections, malnutrition); untreated epilepsy; other progressive neuropsychiatric disorders etc. Contributory factors include late recognition of the problem, failure to be evaluated in formal medical settings, and the failure to seek and secure early interventions.

Who is at risk?The global lesson from the “Human Genome Project” was that about 10% of all neurological conditions are explained by abnormalities in a single gene. The majority of disorders were thus deemed to be multifactorial- more than one genetic abnormality being responsible, with strong contributions from environmental events that have impact. This probably holds good for NDD as well. In general, having a parent or first degree relative affected by a neuropsychiatric or developmental condition, may double the risk of NDD.

When should we suspect NDD?At the one end of the spectrum are children with overtly manifested disability with severe problems that are apparent early and demand medical interventions. They only form the tip of the iceberg. The larger group who go undetected, are children with minimal brain dysfunction. Typically, they are slow-learners in school, who find academic progress challenging; may be clumsy and lack dexterity, with poor handwriting; or indeed demonstrate a range of emotional and behavioral patterns.

Why should we take action early? These children are often the poor performers and/or perceived troublemakers in school. Rather than receiving special attention, they are at worst punished and at best ignored, in many mainstream schools. Without adequate help and support, these children will slowly and surely slide down the educational scale, out of mainstream schooling, into special schooling systems that cannot really tap their potential. Further, children who do not receive support are likely to feel stigmatized and lose their self-confidence.

Where should I take my child, when in doubt?Your pediatrician should be the first port of call. The class teacher may also have valuable inputs. When either pediatrician or class teacher (or both) suspect a problem, more specialized inputs become necessary. Problems in learning and intelligence are best assessed by a clinical psychologist; problems in motor or other brain function (like epilepsy) by a neurologist, sometimes with the assistance of an occupational therapist; problems in behavior by psychiatrists, often with the assistance of a counselor. When language development is affected, ENT doctors supported by speech and language therapists may need to be consulted. In many instances, comprehensive assessment requires a team approach. Depending on the problem the specialists consulted may require a range of laboratory tests- brain scans, brain wave (EEG) and other electrophysiological tests; blood and urine tests including hormonal assays and so on.

How should I progress once diagnosed?

  • Your pediatrician should be your primary support
  • Your child’s school needs to be briefed transparently and kept in the loop. Don’t worry about being asked to leave. If the school cannot accept the problem and work with you, it may not be the best place for your child.
  • Identify a team of professionals; be consistent in your interactions and regular in follow up. Make sustainable plans and set realistic goals. Prepare for the marathon, not a sprint.
  • Don’t focus only on the disability; your child may also have special interests and abilities. Put focus on them too.
  • Don’t be preoccupied by academic results; focus on overall development.
  • Caregiving is challenging and tiring; share the care as a family, develop your own support networks with other parents and keep your spirit up.
Categories
Featured

The Stress Vortex

The word stress, used loosely today in society, has many connotations and can imply a range of circumstances from ordinary workplace or familial dissonance to serious mental disturbance. Crucially, what starts off as a minimal disturbance in one sphere of activity can have significant ramifications that affect many life spheres, if left unattended.

Life and society in the 21st century are profoundly stress generating. While a range of reasons may be held responsible, central to all manner of stress genesis is “the yawning gap between expectation and reality”. Modern lives have spiralled unthinkingly into a vortex, driven by predominantly Western economic models: of unremitting desire, relentless aspiration, pursuit of material gain, needless and thoughtless consumption, transient and elusive fulfilment, and unfettered hedonism. Stress is a natural accompaniment, a constant companion, as new desires replace the old, and the gap between expectation and reality remains constant, if not ever-widening.

Can we escape this vortex? Reduce, even remove, the negative factors that perpetuate stress in our lives? Transform ourselves into that epitome of self-management that others look up to?

Sources of stress

The Psychological Conflict Hypothesis: The concept of a psychological conflict comes from Freudian thought and is believed to underlie emotional stress. Freud proposed that we have both an unconscious and a conscious mind and that there were inherent conflicts between the primitive urges (Id), the unconscious (ego, current awareness) and the feedback from the moral agency (super-ego). While Freud emphasised sexual urges, psychological conflicts are generally believed to have their genesis in the dissonance that can arise between our inner urges and socially permissible actions; a dissonance that may defy resolution.

The Self Actualisation Hypothesis:

Proposed by Maslow, it assumes that each individual has to ascend different steps of the self-actualisation pyramid. At the very bottom of the pyramid are the person’s survival needs; after which appear, progressively, security needs, social needs and ego needs in that order (see box). When all these needs are addressed to a significant extent, the person achieves a state of self actualisation, of fulfilment and being content with one’s lot. Stress is a constant companion at various points on the self-actualisation pyramid and disappears when self actualisation is achieved. However, Maslow’s rather utopian view of the lasting self-actualised state of being may not hold true in the fast-paced modern world, where events often outpace individual development in most unexpected ways.

The Locus of Control Hypothesis:

An important psychological construct used to explain the development of depression, an important consequence of stress is the locus of control hypothesis. It has been observed that rats placed in connected cages soon learn to avoid the cage that habitually gives them an adverse stimulus such as an electric shock. However, when the rat receives shocks in an unpredictable manner, it becomes listless, withdrawn and inactive, a state of “learned helplessness”. This has led to the understanding that internal locus of control (where the person feels in control of his circumstances) is protective from emotional stress; while an external locus of control (being controlled by one’s circumstances), makes one vulnerable to it. In the years of post-war industrialisation this phenomenon was recognised in “assembly line workers” who had little control over the nature or pace of their work and were expected to perform a repetitive task for hours on end. Interestingly, our much vaunted IT revolution has ushered in a new generation of “assembly line workers” who operate on international time and in response to international demands, often with little control over their workspace destiny.

The Coping Hypothesis:

One point which eludes us when we are in a stressful situation is that there are, usually, only two ways out. Take for instance the example of a very short-tempered boss who reacts without provocation. One can either attempt to modify the situation (i.e. bring about a change in the boss so that he loses his temper less); or one can modify one’s own expectations (i.e. accept that boss with his short temper and learn to work around it). No prizes for guessing which is the easier pathway here. It is often said for this reason

“when you cannot modify the situation, modify your expectations”.

Coping strategies are of two kinds: i. Problem-focused coping where the attempt is to short-circuit negative emotions by modifying, avoiding or changing the threatening situation and; ii. Emotion-focused coping where the attempt to moderate or eliminate unpleasant emotions by rethinking in a positive way. Some strategies employed include relaxation, denial and wishful thinking.

In many circumstances, both approaches are combined in the effort to overcome stress.

Preventing Stress

The prevention of stress is achieved through good self management. The key to self management lies in being mindful: of oneself and the world around. Inexorably linked with this mindfulness is developing a better understanding of oneself and one’s fellowmen. Caught as one is in the vortex of modern existence, mindfulness can often be elusive, as the roller coaster of life takes us from one event to the next.

The famous Tibetan Buddhist teacher and philosopher Sogyal Rimpoche differentiates the active laziness of the West whereby unimportant tasks become responsibilities, part of a rigid schedule, and begin to dictate one’s existence (appointments, schedules, waiting times); from the passive laziness of the East, hanging out in front of the roadside stall with film music blaring, watching the world go by.

Neither, he contends, is ideal; instead, he highlights the importance of spirituality and contemplation and the need for us to devote some time in each day to examining the deeper meaning of life. In his view “Our task is to strike a balance, to find a middle way, to learn not to overstretch ourselves with extraneous activities and preoccupations, but to simplify our lives more and more. The key to finding a happy balance in modern lives is simplicity.”

It must be noted that stress clearly has its benefits. Imagine if you did not feel stressed out in advance of an interview or exam; your preparation and performance are both likely to be sub-optimal. Some stress is therefore necessary in order for human beings to “survive”. Too much stress, on the other hand, can be unproductive, even wasteful; resulting in much negative energy being expended. What we must try and achieve, therefore, is a fine balance between ambition and motivation on one hand and equanimity of mind on the other. And, while we strive to control our own destinies, by being in control of our lives and circumstances, our destiny may have other plans, that we cannot fathom; plans that we must learn to accept and live with. Perhaps, therein lies the key to effective stress management.

Heart Facts:

  • Stress impacts on the heart: it can cause myocardial infarction (heart attacks) and sudden death. It can affect the regulation of your heart beat by the central nervous system.
  • The INTERHEART study investigated the relationship between chronic stressors and Myocardial Infarction in about 25,000 people from 52 countries. After adjusting for other risk factors, those who reported “permanent stress” at work or at home had double the risk for developing a heart attack (MI).
  • The broken heart syndrome , sudden ballooning of the heart apex (left ventricle) follows acute stress. Often there is no evidence of obstructive blood vessel disease. Episodes of intense emotional or physiological stress are reported prior to presentation and maybe the triggering factor. Even when intense bouts of emotion don’t kill, they may cause long-lasting heart damage.
  • The Whitehall II study found over a two-fold increased risk for new coronary heart disease in men who experienced a mismatch between effort and reward at work. High-risk subjects were those who were competitive, hostile, and overcommitted at work, in the face of poor promotion prospects and blocked careers.
  • Cardiac syndrome X affects women more; there is angina-like chest pain and a positive response to the treadmill test with normal heart circulation. Cardiac syndrome X patients report more depression, anxiety and somatic (physical) concerns; they also have better prognosis.
  • Depression is a primary risk factor for Ischemic Heart Disease and an independent secondary risk factor for Heart Attacks. Depression also has a direct impact on cardiac risk factors such as diabetes, hypertension and obesity. Depression after myocardial infarction more than doubles the risk of death and of another heart attack. People who suffer chronic anxiety are more likely than others to suffer heart attack. Emotional trauma such as the death of a spouse, mental or physical abuse, or post-traumatic stress disorder (PTSD) increases risk of heart attack.
  • People with Type D personalities (characterised by pessimistic emotions and inability to share emotions with others) and Type A personalities (characterised by anxiety directed outward as aggressive, irritable, or hostile behaviours) are more likely than others to suffer heart attacks.
  • Freud said that happiness comes when one has pleasure in love and work. Research shows that marital stress in women and both marital and work stress in men greatly increase the risk of death due to a cardiac event. A famous doctor has observed “where can he go if he is unhappy at work and at home?” The implied, if somewhat flamboyant, answer was always “to an early grave.”
Categories
Autistic Spectrum Disorder (ASD) Featured

Overcoming Autism with Growing Brain Lab

Disorders of brain and nervous system development are among the most disabling disorders that  affect young children and their families. These include several forms of mental   retardation and learning disability, cerebral palsy, dyslexia, autism, attention   deficit and hyperactivity disorder and a spectrum of motor, cognitive, behavioral and emotional   disorders including those due to family and school stress.

Autism is one of the most important disorders that affects young children. Autism is known as a ‘spectrum disorder,’ because the severity of symptoms ranges from a mild disabilities in learning, language development and social interactions to a severe impairment, with multiple problems and highly unusual behavior. The disorder may occur alone, or with accompanying problems such as mental retardation or seizures. Autism is not a rare disorder, being the third most common developmental disorder, more common than Down’s Syndrome. Typically, about 20 in a population of 10,000 people will be autistic or have autistic symptoms. 80% of those affected by autism are boys.

Children with Autism need the care and attention of a multi-disciplinary team, including the paediatrician, neurologist, psychiatrist, physical, occupational and speech therapists,   psychologists with special training and interest in education and development,   special educators, social workers, speech therapists and nurses.  At present, there is no pharmacological therapy which can cure autism. The only consistently effective treatment for autism is a structured training program; therefore, a combination of a good school and parent training is the best known treatment. Autistic children can make significant progress if the intervention is appropriate and consistent.

Growing Brain Lab (GBL) is an innovative project at Neurokrish-Trimed.  Over a decade GBL has evolved as multidisciplinary model of assessment that addresses Learning,   Aptitude and Behaviour across motor, cognitive, emotional, and psychosocial   domains. GBL has also perfected in this timeframe a model of after-school   therapy incorporating behavioral management and Neurodevelopmental therapy.   With the advent of TRIMED and it’s integrative approach, GBL now incorporates seamlessly a range of holistic interventions targeting symptoms of various developmental disorders including Autism. Play Yoga, Mud Therapy, Reflexology, Ayurvedic Therapies all blend seamlessly into a whole in the TRIMED-GBL program. Inspired by excellence and Success Stories, GBL is today making accessible to families, modern healthcare with ancient wisdom, which is the TRIMED mantra.

Categories
Dementia Dementia & Memory Loss Featured

Dementia: A Looming Threat

Photo Credit: The Hindu: N Sridharan

A low level of awareness about dementia is most often why diagnosis is delayed and public health consciousness remains poor.

World Alzheimer’s Day (September 21) was marked this year, in India, by the release of a comprehensive Dementia India Report. Prepared by national experts, converging under the Alzheimer’s and Related Disorders Society of India (ARDSI) umbrella, it estimates that there are 3.7 million elderly currently living with dementia in India, each spending Rs. 43,000 per annum on medical care. Dementia mainly affects older people, although about two per cent of cases start before the age of 65 years. After this, the prevalence doubles every five years with over a third of all people aged 90+ years being affected. With the exponential increase in the population of the elderly (60+ years) in India, an estimated 100 million today, expected to rise 198 million in 2030 and 326 million in 2050, dementia poses a looming public health challenge, the enormity of which cannot be underscored. The report thus addresses a felt need among professionals, policy makers, dementia sufferers and their families.

What it is ?

Dementia is a neuropsychiatric disorder in which memory and other cognitive functions like thought, comprehension, language, arithmetic, judgment and insight deteriorate progressively.

While it increases in prevalence with advancing age, it is not a normal feature of ageing, a common misconception. Further, dementia is a clinical syndrome, one with many underlying causes, some potentially treatable. Of the many conditions that cause dementia, Alzheimer’s disease (AD) associated with neuro-chemical decline and waste product accumulation in the brain; vascular dementia (VaD) associated with strokes; dementia with Lewy bodies (DLB), a condition associated with Parkinson’s disease; and frontotemporal dementia (FTD), are most common.

The treatable conditions that cause dementia include infections such as syphilis, HIV and tuberculosis; hypothyroidism and other endocrinal problems; vitamin B12 and folic acid deficiency; toxic conditions of various kinds and so on. As they are potentially reversible they need to be addressed swiftly.

What the report highlights ?

The report highlights two areas of great import for dementia sufferers and their families: activities of daily living (ADL) an important measure of the human condition, and behavioural and psychological symptoms associated with dementia (BPSD), an important predictor of health related quality of life (HRQoL). Problem behaviours in dementia include agitation, aggression, calling out repeatedly, sleep disturbance, wandering and apathy.

Common psychological symptoms include anxiety, depression, delusions and hallucinations. BPSD occur most commonly in the middle stage of dementia and are an important cause of caregiver strain. They appear to be just as common in low and middle income countries as in developed ones.

The report outlines the current evidence based pharmacological treatments for dementia, especially AD and VaD: cholinesterase inhibitors (donepezil, rivastigmine, galantamine); NMDA agonists (memantine); drugs for BPSD (SSRI’s for depression and anxiety; new antipsychotics for psychotic symptoms like agitation, aggression, hallucinations; antiepileptic drugs that serve as mood stabilising agents); addressing also their cost-benefit in low-middle income countries. It also lays stress on the importance of structured caregiver interventions as part of standard treatment including psycho-educational interventions for dementia; psychological therapies such as cognitive behaviour therapy, cognitive retraining and family and caregiver counselling; as also caregiver support and respite care. Highlighting that caregiver interventions have been conclusively shown to delay institutionalisation of the person with dementia in the developed world; it observes that many new treatments in advanced stages of research hold promise for persons with dementia and their families.

The report differentiates risk factors into those that are non-modifiable (genetic factors for example) and those that are potentially modifiable. It highlights the extensive and evolving medical literature on the role of lifestyle diseases: diabetes and insulin resistance; high cholesterol levels; high blood pressure; increased fat intake and obesity; together the so-called metabolic syndrome as a modifiable risk factor for dementia. It is important that policy makers recognise these factors as targets for both primary (early) and secondary (after the onset) risk factor prevention. It points to the low level of awareness about dementia as an important reason why diagnosis is delayed and public health consciousness remains poor.

Worryingly, it observes that the lack of awareness extends to health professionals, formal training in dementia diagnosis and care not being a part of most medical, nursing and paramedical curricula; a matter of great concern needing immediate remediation. That stigmatisation of persons with dementia is rampant and that there is a need for raising awareness about the condition across segments of society is explicitly stated.

In India…

Assuming incremental life expectancy and a stable incidence of dementia, the report attempts to estimate the future burden of dementia both nationally and State-wise.

A twofold increase in dementia prevalence to 7.6 million by 2030 and a threefold increase to over 14 million by 2050 are thus estimated. Interestingly in the State-wise estimation, Delhi, Bihar and Jharkhand are all estimated to witness a 200 per cent or greater increment in dementia cases.

These figures have of course been calculated based on certain assumptions. When one factors in the significant disability that dementia confers on the affected person, estimated as being greater than any other health condition except severe developmental disability, the impact of this exponential rise in prevalence, even put mildly, is staggering. The report addresses the need for services to be developed: memory clinics, day care, residential care, support groups and helplines, pointing out the paucity that currently exists. Also highlighted is the severe paucity of human resources for dementia care.

A number of short-term and long-term focus goals, to improve resources; as well as scope, scale and quality of care are proposed.The report concludes with several key recommendations. The most important of these are:

  • Make dementia a national priority
  • Increase funding for dementia research
  • Increase awareness about dementia
  • Improve dementia identification and care skills
  • Develop community support mechanisms
  • Guarantee caregiver support packages
  • Develop comprehensive dementia care models
  • Develop new national policies and legislation for people with dementia

While these recommendations do address the need for dementia to be integrated into the National Policy for Older Persons (NPOP), they predominantly highlight the specific needs of dementia as a disabling and common condition among the elderly; one that can and will challenge Indian public health systems. However, the report acknowledges that dementia must be viewed in the context of other elder health problems, and within the framework of the NPOP.

Sets a gold-standard

Perhaps the greatest contribution of this Dementia India Report is in its setting a gold-standard for other disorders of ageing: quantifying the prevalence and burden of the condition; its impact on the sufferer, caregiver and society as a whole; the framework of services required in order to give succour and solace to sufferers and their families; the causes, risk factors, treatments and management models; and the State-wise national impact.

One fervently hopes that it will facilitate a powerful and futuristic policy response from the powers that be. In a country where the average age of the parliamentarian clearly falls in the “elder” category, one can only hope that it will be welcomed and adopted with the enthusiasm it richly deserves.Acknowledgements: Dr. K Jacob Roy, National Chairman of Alzheimer’s and Related Disorders Society of India (ARDSI) for permission to present this summary of the report and the use of figures.

Facts: 

  • There are 3.7 million elderly currently living with dementia in India, each spending Rs. 43,000 per annum on medical care
  • A twofold increase in dementia prevalence to 7.6 million by 2030 and a threefold increase to over 14 million by 2050 are thus estimated
  • Many new treatments in advanced stages of research hold promise for persons with dementia and their families

With the exponential increase in the population of the elderly in India, the disorder poses a challenge to public health systems.

Categories
Dementia Dementia & Memory Loss Featured Memory Problems

Perspectives in Dementia Care and Health Policy

A health policy for dementia should be comprehensive, especially spelling out the role of family, community and government.A brainstorming session on future perspectives in dementia care and health policy, at the National Dementia Summit held recently in New Delhi, is most insightful. The key prompts for this interactive session are simple and follow a 5W1H management model — who, what, why, when, where and how, in Rudyard Kipling’s “six friendly men” mould. We begin by asking who should take part in developing public policy. The large number of stakeholders becomes apparent: apart from Government, civil society agencies, medical, nursing, paramedical and other professionals, university faculty and researchers and those engaged in the care of dementia; the person affected (if able), their caregivers and families, clearly should all have a say in health policy development. Other stakeholders include the insurance sector, private care providers and agencies rendering dementia related services — pharmaceutical, nutraceutical, medical instrumentation industries; hospitals, hospices and homes. There is unanimity on whom health policy should target; everyone affected by the condition regardless of their economic or social

Photo Credit: The Hindu : N. Sridharan

circumstances.Prevention of Risk FactorsWhen should dementia health policy become operational (at what point of time in the lifespan) we ask. The discussion among experts is animated. They point out that primary prevention i.e. the prevention of risk factors that increase the likelihood of dementia development: hypertension, obesity, high lipid factor levels and diabetes; smoking and alcohol consumption; should begin young, perhaps even in teenaged years. These being the risk factors for many chronic and lifestyle diseases, the benefits of such primary prevention will undoubtedly go far beyond dementia, to a host of other chronic and lifestyle diseases. Secondary prevention, the optimal management of risk factors once they have developed, usually begins in middle age, when risk factors surface and are first detected in individuals. Tertiary prevention, early diagnosis of dementia, even in the mild cognitive impairment stage, often mistaken to be part of normal ageing; the early treatment with drugs that can slow down the disease; and supportive interventions for the caregiver, is universally believed to be mandatory. The group is unanimous that the time for a well defined national health policy is now, when there are an estimated 100 million elders in India, 3.7 million of whom are believed to have dementia.Participants believe that a health policy for dementia should be comprehensive and cover standards for diagnosis, treatment, clinical management; spelling out clearly the role of the family, community and government. Aside from this, dementia requires considerable care, which goes far beyond cure: rehabilitation care, respite care and palliative care, all of which must be clearly outlined. Dementia is a condition with many ethical, legal and financial implications that need to be addressed; and is also the focus of much research. Participants feel strongly that such health policy development should be inclusive and bottom-up, assimilating inclusively the views of all stakeholders; not top-down, based on the views of a minority who have access to the corridors of power. International delegates point out that there is evidence today that the bottom up approach to policy making is far more likely to work that the top down one. In this context participants express their regret that much of health policy development in India remains top down, with stakeholders being seldom consulted.Discussing the focus of a health policy, there is general agreement that all essential domains of dementia care need to be addressed: thus the person, family especially the principal caregiver and community health resources all need importance. However, given dementia’s inherent nature, a disabling condition with complex medical and social needs, secondary care, even tertiary care, cannot be avoided at times of diagnosis; for management, both drugs and non-drug therapies; and complications. At the same time rehabilitation care, both in-patient and out-patient, needs emphasis. When asked to choose between these different domains of care, putting focus on one, participating experts and stakeholders are unanimous; the person, his family and the community resources they can leverage upon are a paramount focus of health policy development.We proceed to ask “who should do what?” for the person with dementia. Interestingly, the need for co-operation and partnership between government, civil society, private providers and affected families becomes immediately apparent. The government clearly has to lead on making dementia a national priority, guaranteeing support for the caregiver and developing new dementia policy and legislation, all of which need immediate and timely action. On the other hand civil society support groups and care providers clearly have their work cut out for them taking ownership for tasks like increasing awareness in the community, improving dementia identification and care skills, and developing community support systems. The development of comprehensive care-giving models will require the involvement of experts: universities and tertiary facilities, working in tandem with affected families. Research is seen as one area where all parties need to take part. The government must increase funding for dementia research; pharmaceutical agencies and industry must contribute their mite; as must universities and other academic agencies; civil society supporting and enhancing the process; families participating with enthusiasm and altruism.The development of dementia health policy, as it has unfolded here, is by no means unique to that condition. The majority of chronic diseases, a rising burden in India today, will require a similar approach: paradigms that address long term care (when cure is not an option); participation and co-operation among a range of agencies, often as different from one another as chalk is from cheese; and inclusive, bottom up health policy development. While a nodal national agency charged with this responsibility will probably be part of the answer, this discussion on dementia brings to the fore, an urgent felt need in this country, for health policy paradigms that will address the emerging epidemic of chronic and lifestyle diseases. Isn’t it time our policy makers and Kipling’s six friendly men, met?

Categories
Epilepsy & Seizures Featured

The Whole Picture – Epilepsy Care and Management

A therapeutic alliance and an interdisciplinary approach work well for patients with epilepsy.

In over 85 per cent of cases,
epilepsy can be treated successfully.

Epilepsy was once considered a manifestation of gods, demons, spirits and their disaffection with humankind. Its treatment in ancient times involved a range of rituals and exorcisms. In the 19th century, as medical science evolved, epilepsy came to be regarded as a disease of the brain but continued to be associated closely with the mind and was often treated in asylums by doctors, who were as concerned with mental illness as they were with epilepsy.In the first part of the 20th century, clear associations between the mind and epilepsy began to emerge from patient settings. That behaviours could be a manifestation of underlying epilepsy (epileptic equivalents), precede a seizure (aura or warning), and follow seizures (post-ictal states) all became part of neurological lore. That psychological states (hysteria) could manifest with seizure-like episodes, ‘psychogenic seizures’, or ‘pseudoseizures’ also were described. Anxiety, depression, psychosis, obsessions, hysteria… a wide range of mental states being a prelude to seizures, accompanying silent seizures, or following seizures were described by European neuro-psychiatrists. However, despite this rich medical literature of over two centuries, the relationship between epilepsy and the mind remains much misunderstood as also the treatment of disorders thereof.Fourteen-year-old Miss V, with a childhood history of febrile seizures, suffered from repeated episodes of jerking and being ‘absent’ that tended to cluster around her menstrual periods. She also had falling academic grades, mood swings, anxiety, disturbed digestion and poor sleep. A good student whose childhood epilepsy had been well controlled, she was bemused by the sudden outbreak of symptoms around menarche that had over a year substantially reduced her quality of life.Consultations with an array of specialists and close observation by her intelligent and attentive parents led to the understanding that the problem was not easily responsive to conventional medication; was closely linked to stress, both academic and familial; clustered around her menstrual periods; was unpredictable and at times subtle (a jerk or two while on the dining table that could otherwise pass off as a teenage mannerism); could affect her on several days in a month. Indeed, her father, a diligent record keeper, could identify as many as 50 to 60 events in a given month occurring in five to six clusters.A comprehensive care approach for such a patient would comprise:A detailed interdisciplinary history: general medical, menstrual, neurological, psychiatric, developmental, social, familial and nutritionalA detailed treatment history: drugs, doses, side-effects, impact of treatment. Investigations to exclude co-morbidities and complications.Establishment of a therapeutic alliance with the family: A firm commitment to work together with transparency, mutual respect and common goals.An interdisciplinary therapeutic programme: nutritional and medical, psychological counselling, yoga therapy, naturopathic and Ayurveda therapies for digestion, sleep and peri-menstrual symptoms.A carefully graded approach to drug treatment of epilepsy with commitment to identify the ideal drug combination and the therapeutic window thereof.After a similar approach for Miss V, one year later it was found:Episodes diminished from 50 to two to three a month.Attacks were brief and had limited impact (a couple of hours at best).Peri-menstrual periods were bearable.Mood swings and anxiety had remitted; sleep and appetite improved greatly; stress levels fallen.Is compliant with medication and regular; tolerated her drug doses well.A therapeutic alliance and interdisciplinary approach (a recommended global best practice model of epilepsy care*) appear to have worked. Miss V is firmly on the road to recovery.FAQsWhat is epilepsy? A short circuit in the brain’s electrochemical activity is a seizure. A tendency to have unprovoked seizures is epilepsy.What causes epilepsy? About 10 per cent of all patients have clear genetic causes. In others, brain trauma (in pregnancy or later life), infections (cysticercosis and tuberculosis), inflammations, tumours; brain scarring due to poor blood supply (ischemia) and degeneration contribute.Can epilepsy be treated? In over 85 per cent of cases, epilepsy can be treated successfully (either complete absence of seizures or a substantial reduction). A range of drugs, surgical treatments and brain stimulation procedures are available.Can a person with epilepsy lead a normal life? Certainly! People with epilepsy can study, hold responsible jobs, get married, have children, play sport and engage in social, cultural activities. Limitations if any are related to driving a motorised vehicle (law varies across countries), taking part in adventure sports, swimming without supervision etc.Can epilepsy be prevented? Epilepsy is not contagious. Prevention starts at conception with good maternal health and antenatal care. Good care of the newborn, appropriate nutrition, prevention of infections, head injuries especially road traffic accidents, early diagnosis and treatment of seizures are the cornerstones of prevention.What to do when a person has a seizure? Put them on their side comfortably (the recovery position), remove all dangerous objects (those that are sharp, emit heat etc.), provide a soft head rest; hold them gently until the event is over (seconds to minutes). Do not try and insert your hands into their mouth; do not hold them forcefully or try to interrupt the seizure. Giving them keys or metal to hold has no medical impact. If a seizure is prolonged, call an ambulance immediately.

Categories
Bipolar Disorder Featured Unexplained Medical Symptoms

Falling men, Failing Neurons

Clinical Autonomic Dysfunction with a plethora of systemic complaints often goes unrecognised. But the right diagnosis and treatment can help speed up the recovery process.

Most of us take standing up for granted. Only when we cannot stand for some reason are we reminded of its importance. Oliver Sacks, the legendary neurologist and author, addressed this rather poignantly in his story On standing on one leg, which documented his experiences after a fall in the Alps. The human species started ‘standing on two legs’ rather late in its evolution. As a consequence, body mechanisms that enable standing — for example ‘preventing all the blood from pooling in our feet, thanks to gravity’ — developed rather late. A complex neural network rich in chemicals and hormones controls postural changes in blood pressure, as it does heart rate, body temperature, digestion, urinary and sexual function… a host of human activities performed, often unthinkingly. This complex network — the autonomic nervous system or ANS — is ‘autonomic’ i.e. ‘independent’ of our conscious control, yet to some extent modifiable. For example, we can hold our urine until we reach the bathroom, well, most of the time!V, a 64-year-old retired headmaster, came to us with a rather peculiar problem. For almost a year, he had been unable to stand up. He would collapse and transiently lose consciousness. Starting with giddiness on standing up, the problem had progressed to intolerable vertigo and eventually episodes of syncope (fainting), leaving him most comfortable when flat on his back. Not surprisingly, V had taken himself to bed, occupying supine repose, in which he was most comfortable. Not surprisingly also, this rendered him severely disabled, dependant on his wife of almost four decades, for all activities of daily life.

When we first met V, he was petrified of standing up, even with our persuasive encouragement and promise of medical support. We had to, therefore, admit him to a partner hospital, and begin attending to him there. Our detailed 360° evaluation confirmed that he had a rare but disabling condition — progressive autonomic failure — with the background of long-standing depression, under treatment with psychotropic medication and a history of generalised seizures (in remission). He had many symptoms of clinical autonomic dysfunction: his blood pressure when taken lying down was 90/50 mmHg; when he stood up, however, his blood pressure plummeted to 50/? — the diastolic so low that it was unrecordable. His postural vertigo, variable heart rate, altered patterns of sweating, pain in the neck and shoulders (coat hanger distribution), unpredictable bowel movements were all symptomatic of his underlying condition: Clinical Autonomic Dysfunction. In addition V had slurred speech and diminished swallowing ability without apparent neuromuscular weakness.

Following diagnosis, V was started on one of the few drugs that can help prevent postural fall in blood pressure. He also was enrolled into our interdisciplinary and integrative rehabilitation programme for autonomic dysfunction. Extended physiotherapy sessions including passive mobilisation, electrotherapy for pain, postural exercise paradigms, gait and balance training, and active exercise protocols delivered over three weeks. He also received acupuncture targeting his neurological symptoms and therapeutic mud for his gastro-intestinal symptoms. Sessions of Jacobson’s Progressive Muscle Relaxation as well as supportive counselling to build confidence and motivation and address caregiver distress were included. At the end of the treatment period, aided no doubt by both drug and alternative therapy approaches, V was back on his feet.

Clinical Autonomic Dysfunction with a plethora of systemic complaints often goes unrecognised as a medical diagnosis; so little being known about ANS and it being difficult to test. Many patients with autonomic symptoms are labelled as ‘psychosomatic’ and do not receive necessary medical attention, leading to avoidable delays in treatment. Indeed the ANS is perhaps one of the last frontiers of neuroscience, requiring significant research focus, as concluded in the recent TS Srinivasan-NIMHANS Conclave on the subject. Not just neurological and psychiatric, ANS symptoms can present with vertigo (ENT), cardiac (heart), respiratory (lungs), gastroenterological (abdomen), genitourinary (urinary and sexual), orthopaedic and rheumatology (bones, joints, musculoskeletal) complaints. A clinical diversity that can test the most accomplished physicians. While falling men like V could well have failing neurons, we also learn from him that people with a plethora of unexplained medical symptoms do deserve an ‘autonomic’ approach and may well benefit from therapy and rehabilitation.