Reviewed by Amen Sergew, MD

What are Management 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.

 

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: info@alsaco.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
advocacy@alsa-national.org
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
info@lesturnerals.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
info@als.net
www.als.net
Tel: 617.441.7200
Fax: 617.441.7299

 

Project ALS
3960 Broadway
Suite 420
New York, NY 10032
info@projectals.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.

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