A Nurse’s Perspective: 8 Things I Learned While Caring for Patients with ALS

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May is ALS Awareness Month, a time to help increase public awareness of this devastating progressive neurodegenerative disease.

May is ALS Awareness Month, a time to help increase public awareness of this devastating progressive neurodegenerative disease.

This blog post was written by Marquina Watts, MSN, who is a Nurse at Independence Plus.

When hearing or reading information about Amyotrophic Lateral Sclerosis (ALS), I am often reminded of how individuals are “rarely” affected by this disease. This is quite the contrary in my field of nursing. Being diagnosed with ALS is challenging, not just for the patient but also for surrounding loved ones. At times, patients with ALS are referred to as “difficult.” After having patients of my own with ALS, I found them to be misunderstood, just like their disease. Below you will find additional knowledge that I gained while providing care to patients with ALS:

  1. Do not take things for granted. What’s simple to me may not be so simple for my patients. For example, walking. When faced with the choices of taking the escalator versus the stairs, I decide to take the stairs.  I have patients who wish they could walk up the stairs.
  1. Assumptions are a “no no.” No matter how long a patient has had their diagnosis, it is not to be assumed that they are knowledgeable on all symptoms indicative of disease progression.
  1. Adaptable communication styles are essential. As patients experience a variation of symptoms, both mentally and physically, variations of conversations are sure to follow. If a patient has overt symptoms due to the progression of their ALS, it can be difficult answering questions from them, as well as from family members.  How do you tell someone that their “disease is progressing” in a manner that is professional, easy to understand, honest, and empathetic – without shattering their hope?
  1. Patients are educators as well. Patients can experience symptoms that have not yet been reported or proven to be in correlation with ALS; however, not much is known about ALS, yet, and new ALS-related symptoms may occur. Noticing different symptoms motivates me to recognize the reason, think about their diagnosis, and connect the pieces of its potential relation to ALS. Questions asked about new treatments can also open doors for learning. Education can occur at any time!
  1. Be mindful about the mind.Over the last decade, thinking and behavior changes were finally recognized as ALS symptoms. Some symptoms include forgetting conversations and/or recent occurrences; answering “yes” one minute and “no” in the next minute in response to the same question; increased aggression; and sharing comments and thoughts without consideration for others’ feelings.
  1. Basic nursing assessment skills are more important than ever!Due to muscle deterioration and decreased movement caused by ALS, patients have increased risks of respiratory compromise and impaired skin integrity. Reduced movement can lead to wounds and pressure injuries. A burn could result from a heating pad in patients with decreased sensation. Managing a patient’s airway is #1! Paying attention to details regarding my patients’ cues in combination with the readings (and sometimes sounds) on the ventilator keeps my assessment skills sharp. Being knowledgeable of the pathophysiology of ALS provides you with a better idea of what to expect, how to assess, and how to properly prioritize.
  1. Consider family dynamics. Everyone is affected by their loved one’s health status and handles it differently. Witnessing dysfunction in a family can be difficult, especially if you feel that your patient is being mistreated. Although you may have good intentions, overstepping your boundaries and speaking with family members because you may feel that they are “wrong” can potentially cause more harm than good. Remembering your role as a nurse aids you in maintaining professionalism.
  1. Recognize and respect priorities. The best care begins when it is tailored to the patient’s needs. At times my patients have refused certain treatments and interventions. Some even showed irritability as I was persistent in educating them on the benefits of the treatments and risks if treatment was bypassed. After reflecting on my patient engagements, I thought about my patients’ personal needs and wants, as well as, my role as a nurse. I quickly learned the importance of providing my patients with as much independence as possible and allowing them to direct their care. As long as my patients are safe and stable, it’s not worth the hassle to go back and forth with them about their care, potentially adding discomfort to their lives. Educate and keep it moving.

Overall, besides maintaining airways and skin integrity, mental health care is a major component that is often overlooked when planning care for patients with ALS. Honestly, it’s tough seeing my patients’ health status decline, yet I am humbled to provide care during the toughest moments of their lives. Being able to empathize with them allows me to practice with the following mindset: I will provide the best quality care possible, even on my most challenging days. At the end of the day, I am able to go home and hit the refresh button, whereas, this is my patient’s life 24/7! So during my 8-12 hours, I will do what I can to make my patient happy, safe, and comfortable.

About ALS:
ALS, also known as Lou Gehrig’s disease, is a progressive, degenerative disease of the motor neurons of the brain stem and spinal cord, characterized by a general weakening and wasting of the voluntary muscles, and eventually complete paralysis. It is presently incurable and usually is fatal within two to five years.

According to The ALS Association at www.alsa.org:

  • ALS usually strikes between the ages of 40 and 70
  • An estimated 30,000 Americans have ALS at any given time
  • Military veterans are twice as likely as the general population to develop ALS

May is ALS Awareness Month, a time to help increase public awareness of this devastating disease. Click here to find out how you can get involved.

Please note: Next week’s blog will feature a Q&A with an IPI patient diagnosed with ALS nearly three years ago at the age of 29. 


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