ALS: Treatment Make an Appointment Refer a Patient Ask a Question Reviewed by Amen Sergew, MD (July 01, 2019) What are Treatment Options for ALS? These are management options that can help you care for you lung issues. If you have questions make sure to ask member of your team. Secretion management A variety of medications can help dry out your secretions. We may also recommend a suction machine. This is similar to what is used in dental offices to suction out saliva. Your durable medical equipment (DME) company can provide this. Oral hygiene is important to keep bacteria from building up in the mouth. Increased bacteria in the mouth can lead to pneumonia. We recommend an electric toothbrush. Also consider a toothbrush that can attach to a suction catheter if oral secretions are excessive. Also consider tongue scrapers/cleaners. Noninvasive ventilation (NIV) The earliest manifestation of diaphragm (the muscle that helps us breath in) weakness occurs during sleep. Your doctor may recommend further testing to check your oxygen levels (desaturation) at night. Noninvasive ventilation (NIV) (which can also be called Positive Airway Pressure (PAP)) can be helpful when used at night to provide support during sleep. These machines provide support for your breathing by using pressure through a mask and pushing air into your lungs. NIV prolongs life when used by ALS patients by normalizing the blood oxygen and carbon dioxide levels. NIV is used at night during sleep and in the day with naps or when you are fatigued or sleepy. The respiratory therapist at National Jewish Health will adjust the pressure settings and find the best mask fit for you. Your DME company will provide the ventilator and instruct you (and other caregivers) on the proper use of the ventilator. A company representative will visit regularly. Bring this machine and your mask to follow up appointments so that your pulmonologist and respiratory therapist can make adjustments. There are three general types of masks used with ventilators: Full-face mask covers your nose and mouth. Nasal mask is a smaller version of the full-face mask and only covers the area around the nose. Nasal pillow has soft silicon ‘pillows’ snug up to your nostrils. As with the nose mask, this mask allows speaking and, usually, wearing glasses. Learn more about Noninvasive ventilation. Breath Stacking Breath stacking is the process of opening up the collapsed portion of your lungs and can help prevent infection. It can be done using an Ambu bag or with a cough assist machine. The Ambu bag is often used early on in the disease process and is more portable. Later in the disease patients can develop a weak cough may be helped by a cough assist device. This helps improve the quality of your cough and helps prevent infections. A DME company will provide your cough assist machine and will show you how to use it. Bring this machine and your mask to follow up appointments so that your pulmonologist and respiratory therapist can make adjustments. Follow-up Follow-up with our team at National Jewish Health is recommended every 2-3 months. This can be coordinated with your other appointments. Call the ALS Team directly if you have trouble getting appointments. Spirometry measures your lung function. It will be done at every visit (if you are able to do this). We also follow the Forced Vital Capacity (FVC), which is a measure of the amount of air you can blow out. What are other Local and National Resources? Local ALS Organizations ALS Association-Rocky Mountain Chapter Website: www.alscolorado.org 10855 Dover St., Ste. 500, Westminster, CO 80021 Office: 303.832.2322 Email: firstname.lastname@example.org Resources available through ALS Association: Equipment inventory/loan closet with hospital beds, power chairs, speech devices and respiratory equipment. This is a free service and based on the needs and inventory. Connecting families to research updates and opportunities Connecting families to one another as the best way to support each other and share local resources National ALS Organizations ALS Association 1275 K Street, NW Suite 250 Washington, DC 20005 email@example.com www.alsa.org Tel: 202.407.8580 Fax: 202.289.6801 Les Turner ALS Foundation 5550 W. Touhy Avenue Suite 302 Skokie, IL 60077-3254 firstname.lastname@example.org www.lesturnerals.org Tel: 888.ALS.1107 or 847.679.3311 Fax: 847.679.9109 ALS Therapy Development Institute 300 Technology Square Suite 400 Cambridge, MA 02139 email@example.com www.als.net Tel: 617.441.7200 Fax: 617.441.7299 Project ALS 3960 Broadway Suite 420 New York, NY 10032 firstname.lastname@example.org www.projectals.org Tel: 212.420.7382 or 800.603.0270 Fax: 212.420.7387 National Institute of Neurological Disorders and Stroke BRAIN P.O. Box 5801 Bethesda, MD 20824 www.ninds.nih.gov Tel: 800.352.9424 Other Resources Provided by ALS Patients: Steve Gleason, an NFL football player, and his friends and family started Team Gleason to generate public awareness for ALS, raise funding to empower those with ALS to live a rewarding life, and ultimately find a cure. www.teamgleason.org. Other Resources: Steve Gleason, an NFL football player, and his friends and family started Team Gleason to generate public awareness for ALS, raise funding to empower those with ALS to live a rewarding life, and ultimately find a cure. The boogie board is a product that may be helpful for a person with severe trouble talking. The boogie board is a pad that allows you to write with your fingertip or stylus and erase with the push of a button. Clinical Trials For more than 100 years, National Jewish Health has been committed to finding new treatments and cures for diseases. Search our clinical trials.