ALS can strike any adult of any age, anywhere in the world.
Clinical research and education on best practices and choices of respiratory care for ALS.
Pamela A. Cazzolli, RN
Director
ALS Care Project
Belden Glass Tower, Canton, OH
Welcome to the ALS Care Project
This site is a resource of information about amyotrophic lateral sclerosis (ALS) and choices to improve breathing and living. Our nursing consultation program includes education on best practices and choices for ALS care; and referral of ALS patients to best healthcare providers for multidisciplinary team management of problems and resources of help in local communities.
Patient families and clinicians at home care/hospice agencies, care facilities, VA clinics, neurology offices, hospitals, ICU’s, and DME companies may CONTACT US to arrange a call or zoom meeting to discuss best care interventions and choices for achieving desired outcomes of their patients. Moreover, nurses and respiratory clinicians who desire a CEU program on best practices of respiratory management, breathing support options, or comfort care for ALS may CONTACT US.
What people need to know about ALS
Amyotrophic lateral sclerosis (ALS) is a motor neuron disease in adults that invariably results in respiratory failure unless prevented and treated with noninvasive or invasive breathing support and adequate ventilation is maintained.
Noninvasive ventilation (NIV) is the standard practice of breathing support for ALS.
NIV can be tolerated unless oral secretions become severe due to bulbar impairment (resulting in the progressive inability to swallow saliva). Therefore, use of NIV is temporary, short-term treatment for those with bulbar ALS.
In contrast, tracheostomy and invasive ventilation (TIV) can be tolerated in people with ALS, despite the severity of oral secretions, and may extend survival well beyond respiratory failure. Thus, use of TIV in persons with ALS is referred to as long-term mechanical ventilation (LTMV). ALS itself is not fatal, if TIV maintains adequate ventilation and complications are avoided.
People with ALS who are nonbulbar (having the ability to talk, swallow and clear the throat) do not need tracheostomy and invasive breathing support.
NIV can be tolerated unless oral secretions become severe due to bulbar impairment (resulting in the progressive inability to swallow saliva). Therefore, use of NIV is temporary, short-term treatment for those with bulbar ALS.
The validated Oral Secretion Scale (OSS) predicts tolerance of NIV in people with ALS. Survival correlates with NIV tolerance and hours per day that NIV is used. The Oral Secretion Scale reliably signals when to initiate hospice or transition to tracheostomy ventilation.
NIV users with nonbulbar ALS do not need a tracheostomy when upper-airway clearance is maintained.
Cazzolli PA, Brooks BR, Nakayama, Y, Lewarski JS, McKim DA, Holt SL, Chatburn RL. The Oral Secretion Scale and prognostic factors for survival in subjects with amyotrophic lateral sclerosis. Respir Care 2020; 65(8):1063-1076.
We believe that all ALS patients have the right to accurate, necessary and understandable information on ALS and options for living.
People should know that ALS ultimately results in progressive respiratory muscle weakness and that breathing failure may be prevented or treated if desired. All people with ALS should be given the choice to live, or if they so choose, to refuse or stop life-sustaining treatment and be given the right to comfort care.