ALS Respiratory Support

When you’re diagnosed with ALS, one of the most important things you can do is attend an ALS clinic, where a team of specialists will guide you every step of the way. A respiratory therapist or nurse will monitor your breathing each visit and let you know when to get which respiratory devices.
​Your neurologist’s office will help you schedule your first clinic appointment. If you do not live near an ALS clinic or cannot attend one, contact your local ALS organization to ask if they can recommend a local neurologist who specializes in ALS.

​If that is not an option, ask your primary care doctor to connect you with a pulmonologist and respiratory therapist so they can monitor your breathing and prescribe respiratory equipment.
Note: If you experience respiratory issues or have any concerns between visits, contact your neurologist or clinic to ask questions or schedule a separate appointment.

How can respiratory equipment help?

Respiratory equipment is therapy for your respiratory system. You should use it on a regular basis. Regular use will help maintain your current respiratory abilities. The earlier you start, the better you will feel.

Respiratory equipment can help you sleep better, have more energy, be more comfortable, think more clearly, and even live longer.
​Using respiratory equipment will not make you dependent on it. Most equipment is noninvasive, which means the mask or interface can be taken on and off whenever you wish. You will probably find that you will want to use it because you feel better when you do.

​The one exception is if you decide to get a tracheotomy at a late stage in the disease. In this case, you would become dependent on a mechanical ventilator to breathe for you.

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What if I'm having trouble sleeping?

Sleep is important for everyone’s outlook, energy level, health, and well-being. Getting good sleep is especially important when you have ALS.
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If you find it harder to breathe when you lie down at night, propping yourself up with pillows may help. But the best solution is using a bilevel machine, which should improve your quality of sleep and help you feel more rested when you wake up.

If I'm short of breath, should I use oxygen?

No. If you are experiencing shortness of breath, it may seem logical to think you need supplemental oxygen. But it can be harmful for ALS patients. When your diaphragm weakens, it becomes more difficult to fully inhale and exhale. When this happens, you do not inhale the oxygen you need or fully exhale carbon dioxide, which can cause headaches, fatigue, and disorientation. A bilevel machine or a portable ventilator will reduce these symptoms.
If you have a respiratory disease in addition to ALS (which is a neuromuscular disease), ask your neurologist or respiratory therapist if you should use supplemental oxygen.

Will exercise help my breathing?

Exercising will not get your respiratory system into better shape. Overexerting yourself could actually lead to decreased strength. Learn more about exercising with ALS.

You may want to save your energy for other things that are important to you, such as visiting family, socializing with friends, or going out to an event. If you want to exercise, ask your neurologist or physical therapist what might be an appropriate level of exertion for you. Using the right equipment at the right time is what will help you maintain your current respiratory strength.

Keep your primary doctor

​Even after you connect with a team of ALS specialists, you should still continue to see your primary care doctor. If you get the flu, a cold, or an infection, it is especially important to see your doctor as soon as possible to get it cleared up.

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