Amyotrophic lateral sclerosis (ALS) is a rare neurodegenerative disease that is characterized by the progressive deterioration of nerve cells that control voluntary muscles.
Currently, there are no effective therapies for ALS that are able to reverse the damage caused by the disease. However, there are therapies that are able to slow down the loss of function, prevent complications, and improve the well-being and preserve the independence of patients.
Here are some of the drug-related and non-drug-related treatments that can be used for patients with ALS:
As one of the two FDA-approved drugs for ALS, riluzole slows down disease progression in a subgroup of ALS patients. Riluzole works by reducing levels of glutamate, a chemical in the brain that is present at high levels in ALS patients.
Another FDA approved drug, edaravone, was found to slow down the decline in daily functioning that is associated with the progression of ALS.
Baclofen or diazepam
Baclofen or diazepam are two drugs that have been shown to help control spasticity.
Gabapentin can be used for pain treatment.
Trihexyphenidyl or amitriptyline
Trihexyphenidyl or amitriptyline can help patients swallow saliva, which is one of the major issues that arise for ALS patients.
Eventually, patients will experience significant difficulty when it comes to breathing as the muscles that control breathing become weaker. At this point, physicians can provide devices that assist in breathing, particularly at night. These include using a ventilator, in which the physician inserts a tube into a surgically created hole at the front of the neck which connects the windpipe to a respirator.
Physical therapists can help patients with a variety of issues including:
- Helping walk and other types of mobility
- Helping adjust to a brace and mobility equipment (walker, wheelchair) to maintain independence
- Practicing low-impact exercises and stretching to upkeep fitness, strength and range of motion as much as possible
Occupational therapists can also assist in helping find ways through which patients can stay independent in spite of their progressive hand and arm weakness. Again, assistive equipment and technology can help the patient perform daily activities including dressing, grooming, eating and bathing. Furthermore, occupational therapists can assist in modifying the patient’s home so that it can become more accessible.
As ALS affects several muscles including the ones that are in involved in speech, communication becomes a major issue in advanced ALS. Speech therapists can help in the following ways:
Teach patients how to incorporate techniques used by patients with speech disorders that can allow the patient’s speech to become better understood.
Assist in finding other, non-verbal modes of communication such as an alphabet board or pen and paper.
Provide information about how to borrow or rent speech-assistive devices such as tablet computers that have text-to-speech applications or computer-based equipment with a computerized speech that can help communication.
As ALS also affects muscles that help chew and swallow, it is imperative that the patient get help from a nutritionist to fulfill their nutrition requirements. A nutritional support team can work with the patient and their family to ensure that the patient is eating foods that are easy to swallow and meet their nutritional needs. Eventually, the patient will need a feeding tube as the condition progresses.
Psychological and social support
A support team that includes a social worker can assist patients with financial issues, insurance, and obtaining and paying for equipment and devices the patient needs. Furthermore, emotional support can be just as important, which can be provided by psychologists, social workers and other experts.
For ALS patients, it is important to mold to the circumstances. Hence, lifestyle changes can be beneficial for patients. This includes switching diet over to easy-to-swallow foods, particularly at the early stages of the disease as ALS starts to affect the mouth muscles.
Studies have indicated the benefits of aggressive and early nutritional therapy that significantly influence disease progression, quality of life and survival of patients with ALS. However, not all of them have shown benefits in clinical trials. Some of these dietary supplements include:
- Vitamin E
- B vitamins, such as folic acid, B6 and B12
- Zinc (particularly in patients with SOD1 mutation ALS)
- Genistein (a type of chemical)
- Melatonin (a type of hormone)
- Coenzyme Q10 (an important component of the mitochondria – the energy producers of the cell)
- Alpha-lipoic acid (an anti-oxidant)
- L-carnitine (a mitochondrial molecule)
- Herbs such as ginseng
- Red wine
- Epigallocatechin gallate (a major catechin in green tea)
Potential future treatments
There are several clinical studies that are working on developing promising drugs and therapies for ALS patients. To be eligible for a study, the patient needs to be fall under strict study criterion, which often includes a very narrow section of the ALS population. In order to enroll in a study, it is best to talk to a neurologist that specializes in ALS.