Community support for ALS
Family support is the basic requirement of the patient. Presence of a member to cater to all the needs of the patient is a must. But it may not be always possible for members of the family to be present with the patients they have other responsibilities to fulfil and go out to work to secure financial resources. In such cases, it is mandatory to appoint paid caregivers and assistants so that the patient never remains unattended.
Since ALS is a financial burdensome disease, it is prudent to make an estimation of cost of treatment and care for the next 3-5 years. It is always helpful to have some medical insurance policy to cover a part of the expenses.
friends can bring a fresh breath of air to the lives of ALS patients. Their visit generates a feeling of social inclusion and being a part of the society. Conversations, fun and laughter with friends lighten the otherwise heavy environment surrounding the patient.
By NGO’s or not-for-profit institutions
Patients of ALS are very prone to suffering from depression because of the progressive nature of the disease and its corresponding socio-economic fallouts. Keeping their minds free of any psychological disorders is essential in improving the longevity of the patient and giving them a healthy living. NGO or not-for-profit organizations can initiate anti-depression programs by offering counselling through help-lines.
Doctors (Western medicine)
The purpose of the treatment should be to give relief to the patient and not being right or playing it safe. It is the responsibility of the doctor to guide patients to alternative treatment options (within their budgets) if they are aware of any. If alternative medicines can provide a better solution to the disease doctors should guide them towards it provided that the cost of treatment is within the budget of the patient and the method of treatment has proven track record of success or improvement, is authentic and is recognized by other credible sources.
By Pharmaceutical companies
There is huge scope for the pharmaceutical companies to do R&D for incurable diseases like ALS. Though these are uncommon diseases yet as a part of their corporate social responsibility it is possible for the corporations to justify investment with long gestation periods. Pharmaceutical companies can enlarge the sample size of their experimental drug trials, which will give some hope to the patients who otherwise see no hope anywhere. Currently, the sample size of these experimental drug clinical trials are too small and there is total opacity with regards to the procedure of enrolment. More transparency needs to be introduced in systems & processes such that the sample size for trials are truly random with an equal opportunity for selection of a patient belonging to any nationality, race, gender or religion.
By the patient
No matter how much support of comfort is provided from the environment, family and friends, it is the patient who undergoes all the process of muscle degeneration over time. The transformation from being an active and lively person to an immobile and handicapped patient is extremely depressing. Therefore, it is essential for the patient to keep himself or herself mentally active and alert by reading books or other forms of online content. They should seek spiritual support to keep their mind calmer and avoid depression.Though easier said than done, they need to look for the higher truths – the meaning of life, the purpose of life, mortality and God. Constant leanings on the disease might not necessarily be the best option. Overthinking might actually do more harm than good. ALS patients can be supportive to fellow patients by communicating brighter and bigger aspects of life. Instead of cribbing over the dark side of the disease, they can form platforms to brighten up each others life through talks, discussions, sharing experiences, finding meaning and purpose of the life and so on. Active support of friends and family is of paramount importance for this to happen. Staying positive is the crucial aspect for living a healthy life with the disease. Friends, family and the doctor should keep a check that the patient doesn’t succumb to feelings of victimization, misfortune & subsequent depression. Patients must regularly attend the therapy sessions like physiotherapy to prolong mobility. There is no point getting paranoid by doing over-research on the disease.