With a disease as complicated as ALS/MND, new terminology and definitions can become overwhelming and confusing. Noninvasive ventilation is one such category. The abbreviation is NIV and refers to breathing support that doesn't involve surgery. Rather, it is a mask that has several options, depending upon what the patient finds most comfortable.
The use of noninvasive ventilation has markedly increased over the past two decades, and noninvasive ventilation has now become an integral tool in the management of both acute and chronic respiratory failure, in both the home setting and in the critical care unit. Its flexibility also allows it to be a valuable complement in patient management.
Noninvasive ventilation is further divided into different categories:
- Negative Pressure Ventilation (NPV)
- Noninvasive Positive Pressure Ventilation (NIPPV)
- Continuous Positive Airway Pressure (CPAP)
- Bilevel Positive Airway Pressure (BiPAP).
Fortunately for all, a new website www.mymnd.org.uk was recently developed by the ALS/MND patients and their caregivers at SITraN. The website describes a great deal of information about each of these options from the patient perspective. Implementation of any of them must be determined by a respiratory physician (pulmonologist) with the patient's input as to comfort, purpose and intent. Most pulmonologists will recommend that noninvasive ventilation is most beneficial, and least harmful to long-term goals, for it to be used only during sleep hours.
Considering that approximately 82% of ALS/MND deaths are attributable to respiratory failure and 18% to other causes, it is highly recommended that NIV be considered early in one's diagnosis and implemented at a time and under circumstances that are best determined by an ALS/MND clinic with whom the patient has a close physical and care relationship. It is also recommended that an understanding and implementation of a diaphragm pacing system (DPS) be a further, and equally important, consideration.
For a comfortable, minimally invasive mask, ALS Worldwide suggests the Philips Respironics Dreamwear Nasal System, available here on Amazon Prime. It is a lightweight mask that uses a pillow-like cradle instead of nasal prongs to deliver air to the nose and it is quieter than traditional masks, making it an excellent option for NIV users.