47 Steps to Healing ALS

Step 44: Breathing & Equipment

Many people with ALS begin to have breathing issues at some point. Many of those who have reversed ALS or are long term survivors of ALS living quality fulfilling lives use or used breathing assistance. Knowing the information presented below can save your life. Please watch these videos BEFORE you need breathing assistance. An ounce of prevention is worth a pound of cure. Even if you get a trach, you can get it removed once you heal.

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Mark in 2016 with tracheostomy and 24-hour ventilation
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Mark in 2020, no longer has tracheostomy and uses breathing assistance only at night.

Mark, above, was diagnosed with ALS in 2011. At left Mark in 2016 with trach and 24-hour mechanical ventilation for breathing. At right Mark in 2020, no trach. For Mark’s breathing story see video below. For most recent ALS Breathing Q&A recording, see below.

People with ALS have HEALTHY lungs.

Almost everyone diagnosed with ALS has very healthy lungs. The issue is the abdominal muscles and the chest muscles are not strong enough to fully get the air in and fully get the carbon dioxide (CO2) out. NAV or non-invasive ventilation such as CPAP, BiPap or full ventilator such as Trilogy, Respironics, Astral, Phillips or Biwaze.

A few key points to remember

  • NOT getting mechanical assistance for breathing if you need it can be dangerous for PALS because it can cause shrinkage of your lungs which can exacerbate breathing problems even more
  • NOT getting mechanical assistance for breathing if you need it can cause a CO2 build up in your lungs which is dangerous. Some PALS who had years left to live, die in their sleep because of this.
  • With ALS you want ROOM AIR, not oxygen, except in very few cases
  • Oxygen can be dangerous for those with ALS because it can cause hyperventilation–and increase in respiration rate and air huger
  • Oxygen can be dangerous for those with ALS because it is not measuring CO2
  • Oxygen can be dangerous for those with ALS because it tells the body “I already have enough oxygen” and will cause the lungs to shrink.
  • Oxygen IS necessary when O2 saturation rate falls below a certain percentage. Pulmonologists disagree on this number but generally below 88. At the same time they need to monitor CO2 since CO2 buildup is often a side effect from giving oxygen.
  • Everyone diagnosed with ALS should have a home oximeter to measure O2 levels such as this one: Click here.
  • CO2 is measured by a blood test called a blood gas test. If you suspect high levels of CO2 build up (fatigue, headaches, lethargy, brain fog) see your doctor immediately and request a blood gas test. If your levels are high you need immediate non-invasive mechanical breathing assistance with room air, not oxygen using a Trilogy or a similar device.
  • Warning: Most pulmonologists and respiratory therapists (RT’s) are NOT well trained in ALS since 95% of their patients have some sort of lung disease like COPD. ALS patients have healthy lungs, therefore pulmonologists and RTs are simply not used to treating patients with muscle weakness versus compromised lungs. Unless the RT or pulmonologist specializes in ALS, you the PALS and CALS, may need to remind and educate these medical professionals.

Monthly Q&A’s for ALS Breathing Questions

  • If you are on mechanical ventilation or think you may need it, we strongly suggest you organize your schedules to attend the monthly breathing Q&A’s live. We understand that you may be in a time zone or have other circumstances where you cannot attend live, so we keep the last two ALS Breathing Q&A recordings. Please send email to HealingALS@gmail.com if you would like the last recording of a breathing Q&A.

  • Watch the videos below first so you come to the Q&A’s with the basics.
  • Get your questions answered about pros and cons and ins and outs of mechanical ventilation
  • Get information about tracheostomies. Mark had a trach for 3 years and now breathes normally without it.
  • Healing ALS sponsors ALS Breathing and Equipment Q&A the 2nd Tuesday of the month at 12pm Eastern time. Watch the video below first to get an idea of the basics. Go the the EVENTS page of HealingALS.org to Register. HealingALS.org/Events. Here is a direct link: 2nd Tuesday ALS Breathing 12pm ET

Below is an Introductory video by Stacy Mercado, Respiratory Therapist who sees almost exclusively ALS Patients. She has a wealth of experience you will want to add to your knowledge base.

The Video below is by Dr. John Bach, MD, who specializes in respiration and non-invasive ventilation and goes into detail about how to keep the lungs healthy in ALS to prevent or delay tracheostomy.

Mark Manchester lived 3 years with a tracheostomy and mechanical ventilation. You do not want to miss his breathing story.

If you need to go to the hospital.

  • Go to Step 47: Dealing with Hospitals and print out the PDFs on Hospital instructions.

Click Here To View The Recording of Step 44 2023

Check for Understanding

understand that breathing and equipment is a very important topic for any ALS patient.

understand that ALS Patients have healthy lungs, and that their breathing is often compromised due to weakness of muscles in the abdomen and chest.

understand that NOT getting breathing equipment when I need it can actually shrink my lung capacity, which in turn will make breathing progressively more difficult.

understand that breathing equipment can help with my healing by making sure I have enough air coming into my lungs and making sure CO2 is fully exhaled. This will improve my oxygen levels.

understand that room air is usually best for ALS and that oxygen is generally contraindicated for ALS since it can cause the build up of CO2. Many pulmonologists who do not regularly work with ALS patients want to put the ALS patient on oxygen and they need to look up why oxygen is usually contraindicated for ALS.

understand that if I go to the hospital, I should be able to continue with my own ventilator, or, if they insist on using the hospital ventilator that the ventiliation settings are the same as the home machine. (See Step 46: Dealing with Hospitals for further information).

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If you have checked all boxes, Congratulations! You have completed Step 44.

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