ALS, or amyotrophic lateral sclerosis, is a medical condition that affects the nervous system. The cells in the nervous system that control motor function begin to degenerate, which affects muscle control.
Because ALS gets progressively worse, the disability gets more severe and patients lose a lot of independence, with the disease being terminal in most cases. ALS life expectancy is usually between two to five years.
Taking the right steps in managing ALS won’t only improve the quality of life but can also slow down disease progression.
It is important to make attempts to keep the quality of life high for patients. Fortunately, there are different ways that patients and caregivers can manage symptoms and live better.
Coping strategies for ALS patients and caregivers
When receiving an ALS diagnosis, it can be very hard to figure out how to move on with life, especially with the relatively short life expectancy of the condition.
However, there are different coping strategies that you and a caregiver can turn to that help make things easier for you and make the best use of your time. Listed below are some of these:
- Visit and converse frequently with your loved ones; whether friends or family.
- Prioritize your most important goals in life and write them down somewhere. Focus on them and put as much effort as you can into making them happen.
- Ask questions whenever you have any. Living with ALS can be scary but you can break down the unknown by asking your healthcare workers and caregiver questions.
- Take the initiative to make changes to your home that will make navigation easier for you.
- See a mental health professional if you feel like you need it.
Assistive devices and technology for ALS patients
What causes ALS is the degeneration of motor neurons, and as muscle function gets worse in the later stages of the disease, assistive technology can be very important in making up for the deficits.
Communication devices
When speech is affected in the course of ALS, the effects can be quite significant as the individual will not be able to communicate verbally which compounds their declining independence.
Fortunately, there are many communication devices that can be utilized. These include:
- Speech-generating devices, or SGDs. These devices include text-to-speech applications and voice banking systems.
- Eye-gaze devices. These track eye movements (which can remain intact late into ALS) and use them to control a computer to select words.
- Writing tablets. These are primarily utilized while fine motor function in the hands is still mostly intact.
- Brain-computer interfaces. These electronic devices use brainwaves to control a computer for communication or to control a device.
Wheelchairs
A power wheelchair can make it possible for an individual with ALS to maintain good mobility, even as the upper and lower limbs get progressively weaker.
Respiratory aids
The muscles involved in breathing are not exempt from the progression of ALS. In fact, respiratory failure is the major cause behind the low ALS life expectancy.
When respiration starts to weaken, assistance through breathing pacemakers, portable ventilators, and suction machines can be really helpful.
The importance of nutrition in ALS treatment
When diagnosed, close to 50% of patients with ALS have some degree of malnutrition. Because of weakening muscles in the face and neck, it is harder for them to chew and swallow food.
Malnutrition is prevalent in people with ALS, so it is important to pay extra attention to eating well.
Proper nutrition is a big part of ALS disease treatment. It is important to make sure that a patient still gets adequate calories and protein. A gastronomy feeding tube may be an option for patients who can no longer eat food on their own.
Physical therapy and exercise for ALS patients
Physical therapy and exercise cannot halt the progression of ALS, but it has been shown that they can slow down disease progression.
Working with a physiotherapist will also keep muscles working at their best, which can help stretch out the period of independence that a patient can enjoy before the condition approaches its later stages.
ALS is a disease that progressively worsens. A person’s muscles continue to weaken until they are no longer able to do several tasks on their own. In virtually all cases, the condition is terminal.
As a result, with an ALS diagnosis, it is important to emphasize supportive measures and improve quality of life. This can be achieved with coping strategies, assistive devices, proper nutrition, physical therapy, and so on.
If a loved one is living with ALS, isn’t it worth making sure that they are comfortable and happy as can be? This is what treatment at a proper center can facilitate.
