What An ALS Caregiver Needs To Know

A Background On ALS

ALS, short for Amyotrophic Lateral Sclerosis, is a progressive disease that is neurologic in origin. Often called Lou Gehrig’s disease, it is characterized by an attack on the neurons in the brain that are responsible for the control of voluntary muscles. ALS is one of the motor neuron diseases where the brain and spinal cord cells are progressively damaged and then die, causing an individual to lose voluntary muscular movement. This leads to debilitating signs such as twitching and muscle atrophy, among others.

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ALS Treatment

Up until today, there is no cure for ALS, although a new drug therapy has been approved by the Food and Drug Administration believed to reduce the degeneration of the motor nerves. However, it does not reverse any damage that has already been done.


Aside from this new discovery, treatment for ALS is focused more on reducing the individual’s symptoms, helping him cope with his disabilities, and improving his way of life despite his disease. Healthcare professionals work together to create plans that involve physical and occupational therapy and providing physical and emotional needs, with the end purpose of making him feel as comfortable as possible.


People with ALS may also consult their physician about prescription drugs that they can take to decrease pain, fatigue, and muscle cramping. Depression and anxiety are also among the common problems that ALS patients deal with, and there are drugs that help control these mental health issues.

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ALS Healthcare Team Management

To maintain the integrity of their muscles, the physical therapist can suggest exercises that don’t cause over-fatigue. Occupational therapists, on the other hand, can work on supplementary aids like ramps, walkers, or braces to help patients decrease their energy expenditure when walking or doing other voluntary movements.


For their communication problems, the speech therapist plays a vital role in teaching them strategies on how to communicate more efficiently. As the disease moves towards its advanced stage, the patient will have more difficulty speaking, more so producing comprehensible language. With that, the speech therapist must train him to learn how to utilize non-verbal techniques of communication.

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The Role Of The Caregiver

As a caregiver of a person with ALS, you must realize that you have a very relevant role. Your patience, resilience, time, knowledge and sincere commitment are a requirement. Taking care of an ALS patient can be draining and frustrating too, so you should be strong enough to share strength and persistence despite the realities of his disease. According to a study on ALS support programs, “Offering interventions by the ALS care team early in the disease course and repeatedly thereafter is preferable, as care needs change over time,” Joanna Carvalho, MSc wrote. “Providing information about the content of the program and subsequently tailoring the program to the specific needs of the caregivers (i.e. caregivers choose which module at what time and which pace) may increase the perceived benefits and compliance with the intervention.”


Most caregivers of ALS individuals are proud of being able to provide support and care, but sometimes the challenges of being who you are can take a toll on you as well. Before you experience burnout because of too much work and pressure, you will need to device a plan for your own sanity and self-care. When you are prepared to take care of yourself, you are able to maintain your quality of life while trying to help others maintain theirs. The more mentally and emotionally stable you are, the better you are able to provide care for others.


Some Takeaway Tips For The ALS Caregiver


  • Knowledge Is A Powerful Tool. It is imperative that you learn extensively about ALS and how to care for ALS patients as much as you can. You can’t be effective if you approach the patient with doubt and confusion.


  • Eat Healthy, Exercise, And Get Enough Rest. For you to provide the best care, you must also be at your best. Work out once a week, make a lunch date with a good friend, and keep the stress eating under better control,” suggests psychiatrist Mark Banschick, M.D. He says that, “Building back healthy habits will give you strength.”
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  • Schedule A Day Off. Having a day off from a whole week’s work is very important as it provides the mind and body time to revitalize.


  • Be Clear And Straightforward. Your ALS patient may at one point experience cognitive and decision-making problems. Giving clear instructions may help him understand quicker. Also, telling him simpler stories or explanations prevents him from being frustrated at himself.


  • Get Help And Support. Always accept help from family and friends. It will be easier for you to vent or share your concerns with the people you care for and who care for you. “Providing regular support to a friend or a relative can entail a number of responsibilities, which, taken together, can create stress and undermine the health of caregivers,” explains Sandro Galea, M.D. “Increased life expectancy and better management of chronic care, both positive developments, have nevertheless lengthened the period of commitment for caregivers, affecting their quality of life over the long-term.”


If you think you need a deeper kind of healing, seek the help of a therapist. He can guide you into making your life more organized and stress-free. Caregiving is not an easy job, but it can be made more meaningful if you are mentally, physically, and emotionally ready for the role.

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