The COVID-19 resources you are asking for the most are described and linked below. Together, these include answers to your frequently asked questions specific to the Neuromuscular Disease (NMD) community. As always, don't use these as a substitute for medical care; instead seek medical care for respiratory involvement in NMD from a licensed clinician who specializes in the breathing issues of those with NMD.
Guides
Checklist
The Speak Foundation published a "COVID-19 Preparedness Checklist" that details information and equipment to bring with you should you contract COVID-19. Download the form from img1.wsimg.com/blobby/go/cd065915-4798-409e-aec1-fc8fb5c2266c/downloads/COVID-19%20Preparedness%20List%20(Revised).pdf?ver=1586892024603.
About Your Rights
The Office for Civil Rights (OCR) "BULLETIN: Civil Rights, HIPAA, and the Coronavirus Disease 2019 (COVID-19)" addresses entities covered by civil rights authorities (i.e. hospitals) and explains their obligations under laws and regulations that prohibit discrimination, including health care services during medical emergencies like COVID-19. This document is a result of complaints filed regarding withholding critical care and ventilator rationing. Find it at public3.pagefreezer.com/content/HHS.gov/31-12-2020T08:51/https://www.hhs.gov/sites/default/files/ocr-bulletin-3-28-20.pdf, and consider printing and taking it to your hospital visits during the COVID-19 pandemic.
Videos
Websites
Delivery Notice
As an individual living with NMD, do you get a lot of deliveries or packages? If so, consider using this "NMD-Specific Delivery Notice" beside your door to alert individuals you are staying indoors to protect against COVID-19. Just download, save the image, and print!
Guides
- The World Muscle Society published “COVID-19 and People with Neuromuscular Disorders: World Muscle Society Position and Advice.” Find it at https://www.worldmusclesociety.org/file/23c61b33-ca24-4fd4-a82f-d03b8dbaf4df/2022-04-23-WMS-Covid-19-advice.pdf. Note: COVID-19 is an evolving field. The advice in this document is subject to revision every 3 days. Look for future updates at https://www.worldmusclesociety.org/news/view/150.
- The Chest Foundation's "Care Recommendations for the Home-Based Ventilation Patient Undergoing Therapy for Known or Suspected Respiratory Viral Infection With COVID-19" guide at foundation.chestnet.org/wp-content/uploads/2020/05/Care_Recommendations_HomeBasedVentilationCOVID19.pdf addresses the concern of mechanical ventilation potentially releasing infectious particles and how to limit them.
- NMD United’s "COVID-19 Plan and Prep Guide" is on the NMD United website at https://www.nmdunited.org/covid-19-guide and discusses how to reduce and prevent the spread of COVID-19 and provides practical coping tools and life-management strategies.
Checklist
The Speak Foundation published a "COVID-19 Preparedness Checklist" that details information and equipment to bring with you should you contract COVID-19. Download the form from img1.wsimg.com/blobby/go/cd065915-4798-409e-aec1-fc8fb5c2266c/downloads/COVID-19%20Preparedness%20List%20(Revised).pdf?ver=1586892024603.
About Your Rights
The Office for Civil Rights (OCR) "BULLETIN: Civil Rights, HIPAA, and the Coronavirus Disease 2019 (COVID-19)" addresses entities covered by civil rights authorities (i.e. hospitals) and explains their obligations under laws and regulations that prohibit discrimination, including health care services during medical emergencies like COVID-19. This document is a result of complaints filed regarding withholding critical care and ventilator rationing. Find it at public3.pagefreezer.com/content/HHS.gov/31-12-2020T08:51/https://www.hhs.gov/sites/default/files/ocr-bulletin-3-28-20.pdf, and consider printing and taking it to your hospital visits during the COVID-19 pandemic.
Videos
- The MDA Facebook Live - "MDA Frontline COVID-19 Q&A with MDA’s Chief Medical Advisor Dr. Barry Bryne and MDA’s Kristin Stephenson" is available to watch on YouTube at https://www.youtube.com/watch?v=DrF6V3hI5oE&feature=youtu.be&fbclid=IwAR34SWeVCvCxN5bfkhCb2hHYQo7XXkdyIYf7xnhFYJ8-TRWVwcbT3pi4Yds.
- Michael Goldberg of the RYR1 Foundation asked Pulmonologist Dr. Oscar H. Mayer the questions many in the NMD community have been asking about COVID-19. You will hear RYR1 specifically addressed, but we believe the discussion and answers are applicable to NMD overall. Watch the video "Coronavirus (COVID-19) & RYR-1-Related Diseases: Webinar with Dr. Oscar "Hank" Mayer" on YouTube at https://www.youtube.com/watch?v=ARXFhnJJj-w&feature=youtu.be&fbclid=IwAR2lnDzE-eAsQ_mHgd1I_j4U65EmwCCWnhx99SwYR1EK1vjdnpXftODySjA.
- Andrea Klein of Breathe with MD, Inc. discusses COVID-19 with Lou Saporito, BA, RRT. Lou is a registered respiratory therapist (RRT) with over 40 years of experience. He created many of the noninvasive respiratory management techniques that permit people to avoid respiratory failure, hospitalization, intubation, and more. Watch "NMD-Specific COVID-19 Tips from Lou Saporito, BA RRT" on YouTube at https://www.youtube.com/watch?v=I_-F9jpX_Rw&t=122s.
Websites
- Parent Project Muscular Dystrophy (PDPM) has created a "PPMD COVID-19 (CORONAVIRUS) INFORMATION CENTER" with FAQs, webinar recordings, and more at www.parentprojectmd.org/care/ppmd-covid-19-coronavirus-information-center/.
- Muscular Dystrophy Canada has an "Ask the Experts" page on COVID-19. Check it out at https://muscle.ca/covid-19/ask-the-experts/.
Delivery Notice
As an individual living with NMD, do you get a lot of deliveries or packages? If so, consider using this "NMD-Specific Delivery Notice" beside your door to alert individuals you are staying indoors to protect against COVID-19. Just download, save the image, and print!
| NMD-Specific Delivery Notice |