Resources
Note: The content on this page and throughout this website should not be used as a substitute for medical care. For medical care or advice related to breathing muscle weakness, please seek the care of a clinician who specializes in the breathing issues of those with Neuromuscular Disease (NMD).
The following are resources recommended for learning more about breathing muscle weakness and its appropriate care and can be used to assist in medical self advocacy.
Links to Publications and Articles:
MDA Quest -
http://quest.mda.org/article/not-enough-zzzzzzs
https://www.mda.org/quest/article/be-prepared?fbclid=IwAR2u0qp9DgdEg0yEby0ZQDr_Ngba8uE2uMeUCA-rtENxIx_pHQ8dzyqWmnI
Scholarly Articles:
Patel N, Chong K, Baydur A. (2022) Methods and Applications in Respiratory Physiology: Respiratory Mechanics, Drive and Muscle Function in Neuromuscular and Chest Wall Disorders. Frontiers in Physiology, doi: 10.3389/fphys.2022.838414. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9237333/
Voulgaris, A., Antoniadou, M., Agrafiotis, M., & Steiropoulos, P. (2019). Respiratory Involvement in Patients with Neuromuscular Diseases: A Narrative Review. Pulmonary Medicine, 2019, 1–11. doi: 10.1155/2019/2734054
www.hindawi.com/journals/pm/2019/2734054/
Macauley, R. (2019). To trach or not to trach, that is the question. Paediatric Respiratory Reviews, 29, pp.9-13.
https://www.sciencedirect.com/science/article/pii/S1526054218300678
Sheers, N., Howard, M. E., & Berlowitz, D. J. (2018). Respiratory adjuncts to NIV in neuromuscular disease. Respirology, 24(6), 512–520. doi: 10.1111/resp.13431
https://onlinelibrary.wiley.com/doi/full/10.1111/resp.13431
Albdewi, M. A., Liistro, G., & Tahry, R. E. (2017). Sleep-disordered breathing in patients with neuromuscular disease. Sleep and Breathing, 22(2), 277–286. doi: 10.1007/s11325-017-1538-x
https://dial.uclouvain.be/pr/boreal/object/boreal%3A194997/datastream/PDF_01/view
Pinto, T., Chatwin, M., Banfi, P., Winck, J. C., & Nicolini, A. (2017). Mouthpiece ventilation and complementary techniques in patients with neuromuscular disease: A brief clinical review and update. Chronic respiratory disease, 14(2), 187–193. https://doi.org/10.1177/1479972316674411
Pfeffer, G., & Povitz, M. (2016). Respiratory management of patients with neuromuscular disease: Current perspectives. Degenerative Neurological and Neuromuscular Disease, Volume 6, 111-118. doi:10.2147/dnnd.s87323 https://www.dovepress.com/respiratory-management-of-patients-with-neuromuscular-disease-current--peer-reviewed-fulltext-article-DNND
Katz, S., Barrowman, N., Monsour, A., Su, S., Hoey, L. and McKim, D. (2015). Long-Term Effects of Lung Volume Recruitment on Maximal Inspiratory Capacity and Vital Capacity in Duchenne Muscular Dystrophy. Annals of the American Thoracic Society.
https://www.atsjournals.org/doi/pdf/10.1513/AnnalsATS.201507-475BC
Bach, J., & Mehta, A. (2014). Respiratory muscle aids to avert respiratory failure and tracheostomy: A new patient management paradigm. Journal of Neurorestoratology, 25. doi:10.2147/jn.s49488 https://www.dovepress.com/respiratory-muscle-aids-to-avert-respiratory-failure-and-tracheostomy--peer-reviewed-fulltext-article-JN
Bach, J. R., Sinquee, D. M., Saporito, L. R., & Botticello, A. L. (2014). Efficacy of Mechanical Insufflation-Exsufflation in Extubating Unweanable Subjects With Restrictive Pulmonary Disorders. Respiratory Care, 60(4), 477–483. doi: 10.4187/respcare.03584
rc.rcjournal.com/content/60/4/477/tab-pdf
Bach, John & Goncalves, Miguel & Hamdani, Irram & Winck, João. (2010). Extubation of Patients With Neuromuscular Weakness A New Management Paradigm. Chest. 137. 1033-9. 10.1378/chest.09-2144.
Note: The content on this page and throughout this website should not be used as a substitute for medical care. For medical care or advice related to breathing muscle weakness, please seek the care of a clinician who specializes in the breathing issues of those with Neuromuscular Disease (NMD).
The following are resources recommended for learning more about breathing muscle weakness and its appropriate care and can be used to assist in medical self advocacy.
Links to Publications and Articles:
MDA Quest -
http://quest.mda.org/article/not-enough-zzzzzzs
https://www.mda.org/quest/article/be-prepared?fbclid=IwAR2u0qp9DgdEg0yEby0ZQDr_Ngba8uE2uMeUCA-rtENxIx_pHQ8dzyqWmnI
Scholarly Articles:
Patel N, Chong K, Baydur A. (2022) Methods and Applications in Respiratory Physiology: Respiratory Mechanics, Drive and Muscle Function in Neuromuscular and Chest Wall Disorders. Frontiers in Physiology, doi: 10.3389/fphys.2022.838414. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9237333/
Voulgaris, A., Antoniadou, M., Agrafiotis, M., & Steiropoulos, P. (2019). Respiratory Involvement in Patients with Neuromuscular Diseases: A Narrative Review. Pulmonary Medicine, 2019, 1–11. doi: 10.1155/2019/2734054
www.hindawi.com/journals/pm/2019/2734054/
Macauley, R. (2019). To trach or not to trach, that is the question. Paediatric Respiratory Reviews, 29, pp.9-13.
https://www.sciencedirect.com/science/article/pii/S1526054218300678
Sheers, N., Howard, M. E., & Berlowitz, D. J. (2018). Respiratory adjuncts to NIV in neuromuscular disease. Respirology, 24(6), 512–520. doi: 10.1111/resp.13431
https://onlinelibrary.wiley.com/doi/full/10.1111/resp.13431
Albdewi, M. A., Liistro, G., & Tahry, R. E. (2017). Sleep-disordered breathing in patients with neuromuscular disease. Sleep and Breathing, 22(2), 277–286. doi: 10.1007/s11325-017-1538-x
https://dial.uclouvain.be/pr/boreal/object/boreal%3A194997/datastream/PDF_01/view
Pinto, T., Chatwin, M., Banfi, P., Winck, J. C., & Nicolini, A. (2017). Mouthpiece ventilation and complementary techniques in patients with neuromuscular disease: A brief clinical review and update. Chronic respiratory disease, 14(2), 187–193. https://doi.org/10.1177/1479972316674411
Pfeffer, G., & Povitz, M. (2016). Respiratory management of patients with neuromuscular disease: Current perspectives. Degenerative Neurological and Neuromuscular Disease, Volume 6, 111-118. doi:10.2147/dnnd.s87323 https://www.dovepress.com/respiratory-management-of-patients-with-neuromuscular-disease-current--peer-reviewed-fulltext-article-DNND
Katz, S., Barrowman, N., Monsour, A., Su, S., Hoey, L. and McKim, D. (2015). Long-Term Effects of Lung Volume Recruitment on Maximal Inspiratory Capacity and Vital Capacity in Duchenne Muscular Dystrophy. Annals of the American Thoracic Society.
https://www.atsjournals.org/doi/pdf/10.1513/AnnalsATS.201507-475BC
Bach, J., & Mehta, A. (2014). Respiratory muscle aids to avert respiratory failure and tracheostomy: A new patient management paradigm. Journal of Neurorestoratology, 25. doi:10.2147/jn.s49488 https://www.dovepress.com/respiratory-muscle-aids-to-avert-respiratory-failure-and-tracheostomy--peer-reviewed-fulltext-article-JN
Bach, J. R., Sinquee, D. M., Saporito, L. R., & Botticello, A. L. (2014). Efficacy of Mechanical Insufflation-Exsufflation in Extubating Unweanable Subjects With Restrictive Pulmonary Disorders. Respiratory Care, 60(4), 477–483. doi: 10.4187/respcare.03584
rc.rcjournal.com/content/60/4/477/tab-pdf
Bach, John & Goncalves, Miguel & Hamdani, Irram & Winck, João. (2010). Extubation of Patients With Neuromuscular Weakness A New Management Paradigm. Chest. 137. 1033-9. 10.1378/chest.09-2144.
| Extubation_of_Patients_With_Neuromuscular_Weakness_a_New_Management_Paradigm.pdf |
Cheng, G., & Bach, J. R. (2009). Continuous Critical Care and Long-Term Noninvasive Ventilatory Support for Patients With Neuromuscular Disease. Chest, 135(1), 246-247. doi:10.1378/chest.08-1895
http://journal.chestnet.org/article/S0012-3692(09)60100-8/fulltext
Simonds, A. K. (2006). Recent Advances in Respiratory Care for Neuromuscular Disease. Chest, 130(6), 1879–1886. doi: 10.1378/chest.130.6.1879
https://journal.chestnet.org/article/S0012-3692(15)50917-3/abstract
http://journal.chestnet.org/article/S0012-3692(09)60100-8/fulltext
Simonds, A. K. (2006). Recent Advances in Respiratory Care for Neuromuscular Disease. Chest, 130(6), 1879–1886. doi: 10.1378/chest.130.6.1879
https://journal.chestnet.org/article/S0012-3692(15)50917-3/abstract
Medical Self Advocacy/Action Plan Resources:
"Take Charge Not Chances" portfolio- https://www.ventnews.org/tcnc
Breathe with MD, Inc. Clinical Considerations Form - https://breathewithmd.org/clinicalconsiderationsform.html
Breathe with MD, Inc. Respiratory Care Information Card - https://breathewithmd.org/respiratoryinfocard.html
Internet Resources:
Dr. John R. Bach - http://doctorbach.com/, http://www.breathenvs.com/
Muscular Dystrophy Canada, Respiratory Care - http://www.muscle.ca/living-with-muscular-dystrophy/respiratory-care/
Cure CMD, Breathing in CMD - https://www.curecmd.org/breathing
Pulmonary Care for Duchenne (Lung Muscles) - http://www.parentprojectmd.org/site/PageServer?pagename=Care_area_pulmonary and http://community.parentprojectmd.org/profiles/blogs/pulmonary-care-and-duchenne
International Ventilator Users Network - http://ventusers.org/
Parent Project Muscular Dystrophy, The Breath of Life: New 3-Part Pulmonary Webinar Series -
http://community.parentprojectmd.org/profiles/blogs/the-breath-of-life-new-3-part-pulmonary-webinar-series?xg
Commonly Requested Video Resources:
Using CoughAssist T70 by Philips Respironics - https://www.youtube.com/watch?v=QHdqcRYIkmU
Managing Patient Breathing with Mouthpiece Ventilation - https://youtu.be/OX4LTaELoPs
Breathe with MD, Inc. YouTube Channel - https://www.youtube.com/channel/UCD4Bz8ZIFUojIG4iDe8Syyg
"Take Charge Not Chances" portfolio- https://www.ventnews.org/tcnc
Breathe with MD, Inc. Clinical Considerations Form - https://breathewithmd.org/clinicalconsiderationsform.html
Breathe with MD, Inc. Respiratory Care Information Card - https://breathewithmd.org/respiratoryinfocard.html
Internet Resources:
Dr. John R. Bach - http://doctorbach.com/, http://www.breathenvs.com/
Muscular Dystrophy Canada, Respiratory Care - http://www.muscle.ca/living-with-muscular-dystrophy/respiratory-care/
Cure CMD, Breathing in CMD - https://www.curecmd.org/breathing
Pulmonary Care for Duchenne (Lung Muscles) - http://www.parentprojectmd.org/site/PageServer?pagename=Care_area_pulmonary and http://community.parentprojectmd.org/profiles/blogs/pulmonary-care-and-duchenne
International Ventilator Users Network - http://ventusers.org/
Parent Project Muscular Dystrophy, The Breath of Life: New 3-Part Pulmonary Webinar Series -
http://community.parentprojectmd.org/profiles/blogs/the-breath-of-life-new-3-part-pulmonary-webinar-series?xg
Commonly Requested Video Resources:
Using CoughAssist T70 by Philips Respironics - https://www.youtube.com/watch?v=QHdqcRYIkmU
Managing Patient Breathing with Mouthpiece Ventilation - https://youtu.be/OX4LTaELoPs
Breathe with MD, Inc. YouTube Channel - https://www.youtube.com/channel/UCD4Bz8ZIFUojIG4iDe8Syyg