Let's face ALS patients together!

Abstract

Amyotrophic lateral sclerosis (ALS) is a devastating neurodegenerative disorder that diffusely affects motor neurons and develops symptoms such as muscle atrophy, muscle weakness, dysarthria, dysphagia, respiratory dysfunction. At present there is no cure and the symptoms gradually develop. For improving quality of life (QOL) in the patients with ALS, cooperation among different medical specialists is critical. There are three things to be understood for the care of patients with ALS.

First, it should be understood that a patient cannot accept the disease easily. Despite a physician's careful explanation, the patient may feel frightened by the physician's words. You should observe the perturbation of the patient, because it is not uncommon to see depressive mood in the patient, even if the patient feels positive by support from family members and caregivers. Although decision–making in advance has been recommended in the medical society, it is not uncommon to see overturning the decisions by the patient with ALS, such as transition from “no endotracheal intubation” to “inclination to it”. In such situations, medical staffs become confused by the change, but it just means that the patient has perturbation in his/her mind.

Second, think about something to improve QOL of the patient. In disease like Parkinson's disease, physician's management such as selection of drugs does improve QOL. On the other hand, the limited therapeutic options for ALS has limited effects, thus gives no significant effect on QOL and only a limited role for a physician mostly focusing on diagnosis. Rather, an approach by other medical staffs are the key for improvement of QOL in the patient with an advanced stage of ALS. Given busy daily routines for each medical personnel, it seems to be difficult to meet the needs of the ALS patient, especially those who are respirator–bound. Even in these cases, it is important to “face it” by not quickly rejecting the requests. Japan ALS Association (JALSA), a patient–centered group, has been establishing local branches and offers hints for daily activities and managements.

Lastly, I wish that all the medical staffs become interested in research. At least, please keep in mind that research and technology have been steadily progressing. Please let the physicians know about patients' hard work studying the recent progress in research and asking questions on these. Patients often talk with their nearby medical staffs, rather than with physicians, on how much they eager to have a new therapy and their intention to participate in a research project for elucidation of the disease. Now is the time to see rapid progresses in the study of the disease mechanisms. It could not be impossible to find the cause of the incurable disease without effective treatment by the recent advances of science. Cooperative effort by the patient is the necessary step for the potential achievement and now is the best time to utilize the cooperation.