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.
The impact of ALS on breathing is likely one of the most daunting aspects of the disease journey and one for which you and your family 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.
Among the first issues an ALS care team will address is respiratory health. “Frankly, one of the reasons we ask a lot of question about what people want or don’t want, or what they are willing to do or not do, is that we want to be able to tailor our plan for what fits for them,” says Dr. Lou Libby, pulmonologist at The Providence ALS Center at the Oregon Clinic and member of The ALS Association National Board of Trustees.
While you should always consult with medical professionals and your ALS multidisciplinary care team members about your specific concerns and questions, The ALS Association provides a wide variety of free, reliable information and resources for you, your family and caregivers.
- 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, where 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 on a fact-finding journey to understand more about the impact of ALS on his respiratory health and the kinds of decisions he and his family will face as the disease progresses.
- Breathing Difficulties factsheet, with a summary of breathing difficulties symptoms to be aware of and a summary of treatment techniques an equipment.
- 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 resource guide, which focuses on the evolving nature of respiratory challenges for people with ALS.
- Local Care Services – The Association’s nationwide network provides comprehensive programs and services for people impacted by ALS. Contact the care service 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.
- ALS Association Certified Treatment Center & Clinics – The ALS Association collaborates with some of the best ALS physicians and clinics across the nation to help ensure that people living with ALS have access to specialized care, based on the latest research and best practices.
- Care Services Webinars – Live and recorded webinars provide disease education, symptom management strategies and much more.
- Care Matters – New quarterly E-Newsletter designed to provide the latest updates and information about ALS care.
In conjunction with your medical 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.
In honor of Respiratory Care Week, Philips, a global health technology leader and provider of respiratory services and solutions to the ALS community, has generously offered a $25,000 grant. They have challenged us to raise an equal amount in support of the ALS community. Click HERE to learn more.
To learn more about how you can get involved in the fight against ALS, visit our website HERE.
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