Breathing and Equipment

Many people with Amyotrophic lateral sclerosis ALS disease begin to have breathing issues at some point among other ALS symptoms. 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.

We want to help you extend your ALS life expectancy considerably, and breathing assistance is an important ALS treatment, one that can help you survive and recover from neurodegenerative conditions like ALS.

Mark, above, was diagnosed with ALS in 2011. At left above Mark in 2016 with trach and 24-hour mechanical ventilation for breathing. At right above Mark in 2020, no trach. At left Mark and Lisa Manchester in 2024.

For Mark’s breathing story see video below. For most recent ALS Breathing Q&A recording, see below.

People with ALS have HEALTHY lungs: Most need mechanical breathing assistance to prevent lung shrinkage

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. NIV (non-invasive ventilation) such as CPAP, BiPap or full ventilator (Respironics, Astral, Phillips, Biwaze or Trilogy).

A few key points to remember

• The EARLIER those with ALS get mechanical assistance for breathing if they need the healthier the lungs and the longer the life expectancy. Without mechanical breathing assistance healthy lungs will shrink over time from not being fully inflated which can exacerbate breathing problems even more
• Mechanical assistance for breathing will prevent CO2 build up in your lungs. CO2 buildup is dangerous. Some PALS who had years left to live, die in their sleep because of this.
  • Signs of CO2 build up are one or more: fatigue, brain fog, delirious, nausea, vomiting, confusion, fast heart rate, redness or tingling of skin, convulsions
• With ALS you want ROOM AIR, not oxygen, except in very few cases
• Oxygen for those with ALS can cause hyperventilation–and increase in respiration rate and air hunger
• Oxygen levels can be normal yet CO2 can be high. Supplemental oxygen can cause build-up of CO2
• Oxygen is contraindicated for those with ALS because it tells the body “I already have enough oxygen” and will cause the lungs to shrink.
• Oxygen IS appropriate for pneumonia
• 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.
• Ask your Respiratory Therapist during a monthly visit to bring the CO2 machine. There are also some CO2 home testers, and the prices are coming down. Check online.
• The most accurate test of 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.
• Warning: Make sure the indoor air in your home has CO2, CO, radon monitors. Occasionally people have small gas leaks and this can affect your breathing and your health.

Exercises to Maintain Healthy Lungs

• Breathe through your nose as much as possible. This helps your body make nitic oxide.
• Humming
• Ommmmm (aum) meditation
• Breath Stacking (can use cough assist or ambu bag for this)
• Breathing out completely
• AmbuBag
• Spirometer
• WimHof and other methods with Avi Greenberg (HealingALS.org/events)
• BODs method with Betsy (HealingALS.org/events)
• Vagus Nerve Stimulator – Pulsetto once in the morning and once at night. Helps anxiety and breathing. Link to Pulsetto.
• Ask your respiratory therapist for exercises to do at home.
• EMST75 or EMST150 Expiratory Muscle Strength Trainer https://emst150.com/product/emst150/
• The Breather. Link on Amazon.
• Cough Assist machine exercises. You are entitled to a cough assist machine always if you mechanical ventilation.
• USE the Cough Assist machine daily to many times per day. This empties out the lungs completely of mucous to prevent pneumonia.
• The Vest is only about 70% as effective as a cough assist.

Preventing Pneumonia

A leading causes of death for ALS patients is pneumonia. The lungs build up with mucous and other secretions. It is essential to get these out of the lungs regularly with a cough assist or they can cause pneumonia.

• Take O2 saturation daily with finger oximeter in both laying down and sitting positions
• Use ALS standard of care recommends mechanical ventilation to keep lungs healthy and inflate to full size to prevent lung shrinkage
• Use Cough Assist device regularly. ALS Standard of care (United States) recommends using a “cough assist” device regularly to make sure the lungs are clear. Cough assist devices are usually prescribed for ALS patients along with mechanical ventilation devices:
  • are usually prescribed for ALS patients along with mechanical ventilation devices.
  • compensate for weakened cough function since ALS weakens the muscles responsible for coughing, making it difficult to clear secretions (phlegm) from the upper airway.
  • can prevent infection. Regular, daily use helps prevent the accumulation of mucus, which can lead to serious respiratory infections like bronchitis or pneumonia.
  • can improve breathing since cough assist uses positive pressure to deliver a deep breath and negative pressure to simulate a cough, which clears the lungs and improves air exchange.
  • can help maintain oxygen levels
  • can reduce hospitalizations. Consistent use is linked to fewer emergency visits and hospitalizations for breathing issues, as described on Instagram.
  • Cough assist works best when used as a daily therapy (e.g., morning and evening) to keep lungs clear rather than just an emergency too
  • In general the cough assist device is superior to the cough assist vest.
• If they are not completely clear after cough assist here are some ways respiratory therapists suggest to clear the lungs:
  • In the morning, while still in bed, you can roll the person on each side and then use the cough assist to loosen phlegm
  • In the morning, as needed, you can use percussions (see video below) before cough assist to loosen phlegm
  • Some find Breathe (drops of essential oil in saline solution) in a diffuser
  • Nebulizing saline solution can be helpful.
• Do other exercises above
• Keep humidity in the room at around 50%. This is the ideal for humans.
• Low carbohydrate or ketogenic diets (see diet step) are often recommended for people with lung issues since it can assist with excess CO2 and minimize blood sugar dysregulation.

https://youtube.com/watch?v=hEABvWbGt8g%3Ffeature%3Doembed

Early Pneumonia Treatments

• If you suspect pneumonia, see your doctor or go to the emergency room immediately
• Nebulized NAC and nebulized HP can be helpful
• Some have found chlorine dioxide helpful as a prevention and an early treatment for pneumonia. Do your own research at https://theuniversalantidote.com/.

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

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.

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.

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

In case you ever need to go to the hospital:

• Print these out now and put them in your “to go” bag in case of an unexpected hospital visit:
  https://healingals.org/wp-content/uploads/ALS-Patient-Emergency-Information-1.pdf
  https://healingals.org/wp-content/uploads/EMT-ER_Information-from-ALSa-1.pdf

Click Here To View The Recording Of Step 44 2024

Check for Understanding

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

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

I 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.

I 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.

I 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.

I 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.

The information we share is for educational purposes and should not be treated as medical advice.

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