ALS community stories
Each person’s experience with ALS is different and comes with a unique set of challenges that spark inspiration and hope. It is through sharing these experiences that we can help one another.
Nurse perspectives: The gift of caring for people with ALS
May 31, 2022
“Working together with ALS patients is not only rewarding, but it’s also inspiring.” This is a sentiment heard from a number of nurses, who are an invaluable resource for those impacted by ALS. Often, their role involves not just caring for, but advocating for and empowering those affected by ALS to overcome challenges and live their lives to the fullest.
More than any other healthcare professional, nurses see first-hand how ALS affects the day-to-day lives and impacts ALS patients. While caring for someone living with ALS can be challenging, nurses often report feeling inspired and rewarded by their role in working with patients and their families.
We spoke with some of the dedicated nurses who support people living with ALS and asked them what their role as a nurse means to them.
“Working together with ALS patients is not only rewarding, but it’s also inspiring.”
“Supporting patients from diagnosis to therapy has been a rewarding experience. Often, when we call patients, they just received their ALS diagnosis and feel like they’ve lost all hope. During the calls, we get the opportunity not only to connect with the patient but connect with their family and caregivers. It’s a reminder that they aren’t alone, and they have a team of people supporting them, always.”
“Working together with ALS patients is not only rewarding, but it’s also inspiring. There are so many little things in life that become obsolete when you get the privilege to help someone learn to live with a debilitating disease. There is a deep commitment we have to the betterment of the ALS community and our ALS patients.”
“I remember speaking with a patient who had just been diagnosed with ALS. She had fallen at home and was on the floor for several hours; however, she was reluctant to start treatment. After discussions with her two sons, who felt that the disease was progressing very quickly, as a family, they decided to start treatment. This patient was able to receive treatment earlier in her diagnosis because of the involvement of all partners and the quick and efficient communication between the family, and the nursing team. Sometimes all a patient needs to know is they are loved and supported in order to take the next steps in their journey.”
