Although ALS has a high mortality rate and the contemporary treatment doesn’t guarantee a complete cure, remedial measures can be taken along with medication to delay the progression of the disease and improve the quality of life of the patient through maintenance of his or her physical, mental, emotional, and social well-being. Family, friends, colleagues, government, and non-government organizations can contribute immensely to this end.
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.
Relatives of the patients should visit him or her often to create a sense of belonging in the patient. The person should not feel alienated by the family for his or her disease. Relatives can also help the patient to remain occupied mentally with various discussions and thoughts through the reading of newspaper, blogs, browsing websites and so on.The affected person should be showered with love, care and support so that he or she never feels like a botheration to the other family members. It is better not to get irritated at the patients as he or she gradually becomes incapable of doing so-called normal things or communicating like others.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.
Friends can bring positivity to the table by presenting them books, DVDs that talk about the spiritual and philosophical aspects of life. This will help the patients stay emotionally clam and stable to deal with the stress arising out of the deteriorating health status.
It is necessary to keep the mind of the ALS patient occupied with thoughts other than the disease. Since the brain of the patients function normally he or she is capable of taking part in family decisions, form opinion about current events of the world and society.
They should be encouraged to stay connected with the rest of the world through various online platforms like Facebook, Twitter, Instagram. They should watch television, browse the internet, read blogs. It is always helpful for them to remain someway or the other occupied with activities within their limited capacity that keep their focus away from the disease and shift it to other brighter things of the life and living.
The self-worth of the affected person often gets hurt because of his or her inability to work and earn for the family.
This loss of income makes the patient feel like a burden to the family. Office colleagues can come to the person’s rescue. Though they may not be able to fill up the financial vacuum due to job loss but they can surely offer moral and emotional support to the patient by visiting him or her frequently and discussing work and office gossips. They can make the patient feel worthy and mentally able to give them his or her valued opinion on various challenges that the colleagues encounter.
Frequent visit by the colleagues can make the patient feel appreciated and valued for whatever he or she has done while in job. Office colleagues can also help the patient and the family to find better avenues of caregiving, financial resources and support. Role of government is very crucial in dealing with rare and incurable diseases like ALS. Since private sector doesn’t find investment in R&D for such rare dieses financially viable, the government has to play a vital role as a primary source of funding for research. The government can also incentivize the private sector to undertake more research in this direction
ALS Hope Foundation is working towards creating awareness through educational programs. It pursues both basic and clinical research initiatives. The organization offers all kinds of support to the ALS patients and their families through various activities and programs
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)
Western medicine has been able to find any cure for ALS. It can only delay the myodegeneration for some time. Doctors need to understand that Western medicine is not the end of the world. They can broaden the scope of treatment by taking recourse to Ayurveda and homeopathy. There should be more research on these fields of medicine so that there is proven and tested methods of treatment of such diseases. 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