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CHILDREN WITH DISABILITY: CHRONIC NEUROLOGICAL CONDITIONS

1. What is chronic neurological conditions?

Chronic neurological conditions are among the most common in older adults. Stroke, epilepsy, multiple sclerosis, Parkinson's Disease, Alzheimer's Disease, and vascular dementia are pervasive in this population. In addition, 21% of older adults have both heart disease and diabetes, the chronic conditions that are most associated with stroke, the leading cause of neurological deficits. 

2. Identify the problem

Damage to either the peripheral or CNS is a well-defined cause of neuropathic pain. Considering the altered patterns of brain activity in neurological disease with pain may provide insight into pain processing in the brain in chronic disease. In contrast to the many neurological diseases with associated pain symptoms, some neurological conditions are associated with diminished pain or no pain. 

Many neurological disorders and conditions affect an individual’s functioning and result in disabilities or limit activities and restrict participation. According to the International Classifi cation of Functioning, Disability and Health (ICF), the medical model views disability as a problem of the person, directly caused by disease, trauma or other health condition that requires medical care provided in the form of individual treatment by professionals

3. Prevalence

The crude prevalence rate varied from 967-4,070 per 100000 population with an average of 2394 per 100000 population. Based on this data it is estimated that for the current population of 1.27 billion, approximately 30 million people suffer from neurological disorders in India.

The overall prevalence of epilepsy ranges from 2.7 to 41 per 1000 population, though in the majority of reports the rate of active epilepsy (i.e. at least one seizure in the preceding fi ve years) is in the range 4–8 per 1000 (5, 10). The prevalence of active epilepsy is generally lower in industrialized countries than in developing countries, which may refl ect a lower prevalence of selected risk factors (mostly infections and traumas), a more stringent case verifi cation, and the exclusion of provoked and unprovoked isolated seizures.

4. Institutional challenges

  • A diagnosis is the fi rst step towards planning for the future. There is no simple test to make a diagnosis. The diagnosis of AD is made by taking a careful account of the person’s problems from a close relative or friend, together with an examination of the person’s physical and mental state. It is important to exclude other conditions or illnesses that cause memory loss, including depression, alcohol problems and some physical illnesses with organic brain effects.

  • In 25–30% of people with epilepsy the seizures cannot be controlled with drugs. Epilepsy surgery is a safe and effective alternative treatment in selected cases. Investment in epilepsy surgery centres, even in the poorest regions, could greatly reduce the economic and human burden of epilepsy. There is a marked treatment gap with respect to epilepsy surgery, however, even in industrialized countries. Attention to the psychosocial, cognitive, educational and vocational aspects is an important part of comprehensive epilepsy care. Epilepsy imposes an economic burden both on the affected individual and on society, e.g. the disorder commonly affects young people in the most productive years of their lives, often leading to avoidable unemployment.

  • Uncertainty over the cause or development of MS implies that prevention is not currently a realistic option. Furthermore, there are no curative treatments available for MS (9). A number of disease- modifying drugs have been developed in the past 20 years, however, which reduce the number of attacks in the relapsing/remitting form of the disease. The extent to which eventual disease burden and disability are limited by use of the drugs is less clear. 

5. Individual Challenges

  • Dementia affects every person in a different way. Its impact can depend on what the individuals were like before the disease: their personality, lifestyle, signifi cant relationships and physical health.

  • Epilepsy is among the disorders that are strongly associated with signifi cant psychological and social consequences for everyday living (19). People with hidden disabilities such as epilepsy are among the most vulnerable in any society. While their vulnerability may be partly attributed to the disorder itself, the particular stigma associated with epilepsy brings a susceptibility of its own. Stigmatization leads to discrimination, and people with epilepsy experience prejudicial and discriminatory behaviour 

  • Multiple sclerosis has a profound impact on patients’ social roles and the well-being of their families. Varying degrees of functional decline typically accompany MS. Because the onset is usually at about 30 years of age, the loss in productivity of people with MS can be substantial. Such functional decline will often interfere with the opportunities for people with MS to perform their customary roles. For example, physical disability — complicated by fatigue, depression and possibly cognitive impairment — contributes to an unemployment rate as high as 70% among people with MS.

6. Diagnosis and  Treatment

  • The treatment modalities used are: 

  • EEG (Electroencephalogram): EEG is the name commonly used for electroencephalography. EEG records the electrical activity of the brain. 

  • Evoked Potentials (BAEP, VEP, SSEP): Evoked potentials are potentials recorded from scalp in response to a brief auditory, visual or electrical stimulation to nerves to assess the hearing (BAEP - brainstem auditory evoked potential), visual (VEP - Visual evoked potential) or sensory (SSEP - somatosensory evoked potential) pathways respectively.

  • Polysomnography (PSG): A Polysomnogram (PSG) is a painless test designed to monitor and evaluate sleep characteristics and physical stage during sleep.

  • Multiple Sleep Latency Test (MSLT): Multiple Sleep Latency test is designed to evaluate the degree of sleepiness in patients with sleep disorders. Small electrodes or sensors will be painlessly attached to different parts of your body to monitor brain waves, heart function and muscle activity. 

  • ENMG ( Electro Neuro Myography )

  • The ENMG (Electro Neuro Myography) examination is a diagnostic examination of nerve and muscle function.

  • Intra-operative Monitoring: Intra-operative electrophysiological monitoring is routinely performed during scoliosis surgery. This monitoring helps the surgeon to signal if there is any undue pressure or potential damage to the spinal cord in the potentially reversible phase.

  • Autonomic Dysfunction Tests (ADT): Tests such as sympathetic skin response to sensory and auditory stimuli, RR interval variability during posture changes, RR interval variation during respiration and during valsalva manouver are routinely performed for patients with dysfunction of autonomic nervous system. 

7. Rehabilitation

Rehabilitation is one of the key components of the primary health-care strategy, along with promotion, prevention and treatment. While promotion and prevention primarily target risk factors of disease andtreatment targets ill-health, rehabilitation targets human functioning. Rehabilitation should start as soon as possible after the diagnosis of a neurological disorder or condition and should focus on the community rehabilitation perspective. The type and provision of services is largely dependent on the individual health-care system. Therefore no generally agreed principles currently exist regarding the provision of rehabilitation and related services.
Rehabilitation is often exclusively associated with well-established and coordinated multi- disciplinary efforts by specialized rehabilitation services. While availability and access to these specialized inpatient or outpatient services are at the core of successful rehabilitation, a need also exists for rehabilitation service provision, from the acute settings through the district hospital and the community, often by health professionals not specialized in rehabilitation but working closely with the rehabilitation professionals. It is important to recognize that rehabilitation efforts in the community can be delivered by professionals outside the health sector, ideally in collaboration with rehabilitation professionals.

8. Our Role

Stigma has been defined as a deeply discrediting attribute that reduces a person to one who is in some way tainted and can therefore be denigrated. It is a pervasive problem that affects health globally, threatening an individual’s psychological and physical well-being. It prevents individuals from coming forward for diagnosis and impairs their ability to access care or participate in research studies designed to find solutions.

It is very important to keep the public aware about the neurological disorders and its possible outcomes. Education and training of primary care services will help in identifying the symptoms and to do early intervention. It will also help in reducing the global burden of such disorders.  Training that covers general skills, management and identification of symptoms and refferal guidelines will help in taking proper interventions. 

As a professional social worker, we can intervene in many ways like ensuring the assessment and monitoring of the health of communities and populations at risk to identify health problems and priorities, the formulation of public policies designed to solve identified local and national health problems and priorities, ensuring that all populations have access to appropriate and cost-effective care, including health promotion and disease prevention services, and evaluation of the effectiveness of that care.

  • Improve treatment in primary care

  • Improve referral services.

  • Plan advocacy initiatives that involve families, communities, and individuals.

  • Strengthen the community programs and link with other sectors.

9. References

  • KIMS Global, Trivandrum

Contact No: 9072881666

  •  Aster Medcity

Kuttisahib Road, Cheranelloor, South Chittoor, Kochi, Kerala 682027

Contact no: +91 484 66 99 999

Email: astermedcity@asterhospital.com

  • Indo American Hospital- Institute of Brain and Spine

Chemmanakary, Akkarappadam P.O, Vaikom 686143, Kerala, 

Contact no: 04829 - 217800

Email: info@indoamericanhospital.in, indoamericanhospital@rediffmail.com

10. Bibliography

  • Shaji KS et al. Caregivers of patients with Alzheimer’s disease: a qualitative study from the Indian Dementia Research Network. International Journal of Geriatric Psychiatry, (2002).

  • Fisher RS et al. Epileptic seizures and epilepsy. Definitions proposed by the International League against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). Epilepsia, (2005).

  • WHO, Neurological disorders : public health challenges.

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