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What is ALS?
Despite hundreds on ongoing researches in various countries, there is still not a definite cause or cure found till date which can reverse ALS. Only option available with family is quite expensive management of this disease which is different in different stages. Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% of patients. As the weakening and paralysis continue to spread to the muscles of the trunk of the body the disease, eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent ventilator support in order to survive. Since ALS attacks only motor neurons, the sense of sight, touch, hearing, taste and smell are not affected.
In many countries, Social workers , home care and hospice nurses help patients, families, and caregivers to face multiple challenges like medical, emotional, and financial of coping with ALS, particularly during the final stages of the disease. In 90% of cases, life of patients with ALS is usually between 2-5 years, however it varies from person to person and also may extend more on agreement of Ventilator decision along with proper management. One famous example of person living with variant form of ALS is Stephen Hawkins.
There are lot of activities happening recently in social media which were organized by worldwide ALS organizations to raise disease awareness and building funds for finding cause and treatment for ALS. One such activity which recently continued to remained in news was famous "Ice Bucket Challenge", however its sad to note that the real message behind Ice Bucket Challenge didn't reached to most of Indian population.
Many countries grant complete medical facilities including cost of two ventilators-primary & backup, specially for MND(ALS) patients as its management is very expensive. While in India there is no such grant or support available. Indian Govt should also understand the precious life support for these disease patients and allows to manage our elders in home conditions if there is proven proper care team available.
In many countries, Social workers , home care and hospice nurses help patients, families, and caregivers to face multiple challenges like medical, emotional, and financial of coping with ALS, particularly during the final stages of the disease. In 90% of cases, life of patients with ALS is usually between 2-5 years, however it varies from person to person and also may extend more on agreement of Ventilator decision along with proper management. One famous example of person living with variant form of ALS is Stephen Hawkins.
There are lot of activities happening recently in social media which were organized by worldwide ALS organizations to raise disease awareness and building funds for finding cause and treatment for ALS. One such activity which recently continued to remained in news was famous "Ice Bucket Challenge", however its sad to note that the real message behind Ice Bucket Challenge didn't reached to most of Indian population.
Many countries grant complete medical facilities including cost of two ventilators-primary & backup, specially for MND(ALS) patients as its management is very expensive. While in India there is no such grant or support available. Indian Govt should also understand the precious life support for these disease patients and allows to manage our elders in home conditions if there is proven proper care team available.
