This week is National Respiratory Care Week, an annual event recognizing the invaluable contributions of respiratory therapists to patient care, including for people living with ALS.
While ALS progresses differently for each person living with the disease, respiratory challenges are something everyone with the disease will face during their journey. Being aware of symptoms and how you can prepare for and manage them is key to quality of life and, often, to peace of mind.
There are many different options and interventions to consider, and education and proactive planning can help to ease the stress for everyone involved. Your ALS multidisciplinary care team will work with you and your family to craft a plan for treatments and interventions needed now as well to plan for future needs, including the use of ventilators.
“We ask about it, talk about it, early on so people can think about it, learn about it and make a decision,” says Dr. Lou Libby.
Dr. Libby is a pulmonologist at The Providence ALS Center at the Oregon Clinic. He goes on to say there is no right or wrong choice, and all decisions can be adjusted later should a patient change their mind after the fact.
While you should always consult with medical professionals and your ALS multidisciplinary care team members about your specific concerns and questions, we provide a wide variety of free, reliable information and resources for you, your family and caregivers:
My ALS Journey™—An interactive, web-based tool developed for people with ALS to help take control of their journey with the disease. By creating a personalized profile, you can learn about the appropriate – and time sensitive – interventions. You can also save resources to a personal library, share with loved ones, and hear from other people living with ALS.
Books, videos and other ALS Association produced educational materials—We provide various resources so you can quickly and easily access in-depth information about ALS, including these respiratory-related materials:
- Addressing Respiratory Changes in ALS video series - Dr. Ken Menkhaus, member of the Association’s Board of Trustees who was diagnosed with ALS in 2018, visits with ALS care professionals and people living with ALS to understand more about the impact of ALS on his respiratory health.
- Breathing Difficulties factsheet - This fact sheet provides a summary of breathing difficulty symptoms to be aware of and a summary of treatment techniques and equipment options to consider.
- Respiratory Challenges in ALS - Coughing factsheet - Maintaining a clear airway is important, and coughing is a primary means to that end. This factsheet details coughing challenges for people with ALS and possible solutions.
- Adapting to Changes in Breathing When You Have ALS - This resource guide focuses on the evolving nature of respiratory challenges for people with ALS.
ALS Association Certified Treatment Center & Clinics – We work with some of the best ALS physicians and clinics across the nation to help ensure people living with ALS have access to specialized care, based on the latest research and best practices.
Local Care Services – Our nationwide network provides comprehensive programs and services for people impacted by ALS. Contact the care services team nearest you to learn about local resources and professionals in your area.
Support Groups—ALS specific support groups are a great resource for people to learn from others and to give and take the wisdom and experience that comes from living with ALS, including respiratory challenges and solutions.
Care Services Webinars—Live and recorded webinars provide disease education, symptom management strategies and much more.
Care Matters—Our quarterly E-Newsletter designed to provide the latest updates and information about ALS care.
In conjunction with your care team, these resources can help you navigate the respiratory changes ALS brings, allowing you to understand and address the challenges to live as you choose.