This week is National Respiratory Care Week, an annual event recognizing the profession of respiratory care and highlighting the critical work they do, including for people living with ALS. 

Even though respiratory symptoms are rarely among the first things people living with ALS experience, respiratory health is often one of the first things an ALS care team will discuss with you and your family. The topic is an important one as ALS progresses, it can become one of the most challenging parts of the disease journey.

But changes in your respiratory health are something you can and should prepare for early on. There are many different options and interventions to consider, and education and proactive planning can help to ease the stress for everyone involved.

“Whereas other people are kind of overwhelmed and need to have their options presented to them,” said Kristen McHenry, respiratory therapist at the Gary E. Shealy Memorial ALS Clinic at Eastern Tennessee State University. “And that's what we're here for. We're here to present the options and to give you informed help for you to make an informed decision.” 

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While open and active communication between you and the medical professionals on your ALS multidisciplinary care team is the most important part of managing respiratory health, we have resources and information available for you, your family, and your caregivers to help. 

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. 

My ALS Journey^™—An interactive, web-based tool developed to help you take control of your ALS journey. By creating a personalized profile, you can learn about appropriate—and time sensitive—interventions, save resources to a personal library, share with loved ones, and hear from other people living with ALS.

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Books, videos and other ALS Association produced educational materials—We have numerous resources available on our website so you can easily access in-depth information about ALS, including these respiratory health-related materials:

• Addressing Respiratory Changes in ALS video series—Dr. Ken Menkhaus, a former 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 respiratory health and the kinds of decisions he and his family will face as the disease progresses.
• 10 Things to Know: Breathing Easier with ALS—A quick guide to what you need to know about how ALS impacts respiratory health.
• Breathing Difficulties factsheet—A summary of breathing difficulties symptoms to be aware of and a summary of treatment techniques an equipment.
• Respiratory Challenges in ALS – Coughing factsheet—A look at why maintaining a clear airway is important, and how coughing is a primary means to that end.
• Adapting to Changes in Breathing When You Have ALS resource guide—A guide to the evolving nature of respiratory challenges for people with ALS.

Care Services Webinars—Live and recorded webinars provide disease education, symptom management strategies and much more. 

Care Matters—Our quarterly e-newsletter is designed to provide the latest updates and information about all aspects of ALS care.

Being proactive about planning and making decisions BEFORE they need to be made can be key to helping you live the life you choose throughout your ALS journey, and we are committed to ensuring everyone living with ALS, everywhere, has access to these important resources. 

Stay up to date on the latest information about ALS care, disease management and resources to by subscribing to our quarterly e-newsletter, Care Matters.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.

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