When someone is diagnosed with ALS, the focus quickly shifts from treatment to care. There’s no cure, but two interventions stand out as life-changing: noninvasive ventilation (NIV) and proper nutrition. These aren’t optional extras-they’re the backbone of survival and quality of life. For many, using NIV and getting a feeding tube can mean the difference between months and years, between struggling to breathe at night and sleeping through it, between losing weight rapidly and holding onto strength.

Why Noninvasive Ventilation Matters in ALS

ALS doesn’t just weaken your arms or legs. It slowly paralyzes the muscles that control breathing. As the diaphragm weakens, you start gasping for air-especially at night. Morning headaches, daytime sleepiness, and waking up out of breath aren’t just annoyances; they’re signs your body isn’t getting enough oxygen.

Noninvasive ventilation steps in with a simple device: a mask that fits over your nose or mouth, connected to a machine that pushes air into your lungs. It doesn’t require surgery. It doesn’t involve a tracheostomy. It works by giving your lungs a boost when your muscles can’t. Most people start with a bilevel device (BiPAP), which delivers higher pressure when you inhale and lower pressure when you exhale. This makes breathing feel more natural.

Studies show that starting NIV early can add an average of 7 months to your life. One study found that people who used NIV lived 453 days on average, compared to just 215 days without it. That’s more than a year of extra time. And it’s not just about living longer-it’s about living better. People who stick with NIV report fewer morning headaches, deeper sleep, and more energy during the day. One ALS forum survey found 87% of regular users saw a drop in morning headaches within four weeks.

When to Start NIV-And Why Timing Is Everything

Doctors don’t wait until you’re gasping for air. Guidelines from Canada, Europe, and the American Academy of Neurology recommend starting NIV when your forced vital capacity (FVC) drops below 80% of normal, or when you have symptoms like daytime sleepiness, trouble sleeping, or morning headaches. These signs often show up before your lung numbers crash.

But here’s the problem: insurance in the U.S. often won’t cover NIV unless your FVC is below 50%, your sniff nasal pressure is under 40 cm H₂O, or your maximum inspiratory pressure is below -60 cm H₂O. That means many people wait too long-until they’re already struggling. By then, the benefits are reduced. The earlier you start, the better your body adapts. And adaptation is key.

Many patients struggle at first. The mask feels tight. The air pressure feels unnatural. Skin redness and sores are common. But with support, most get through it. A 2019 study found that while only 20 out of 30 days of use was typical in the first month, by the end of a year, most people were using it 27.5 days a month. The key? Having a respiratory therapist walk you through mask fitting, pressure adjustments, and troubleshooting. Don’t give up after one bad night. It takes time.

The Two Types of NIV Devices-And Which One Fits Your Needs

Not all machines are the same. There are two main types:

  • Standard BiPAP machines: These are the most common. They’re designed for nighttime use, cost $1,200-$2,500, and need new masks every 3-6 months ($100-$300). They work great for early-stage ALS.
  • Portable ventilators like the Trilogy 100/106: These are heavier-duty, battery-powered devices that can be used day and night. They offer volume control, dual backup rates, and built-in oxygen monitoring. They weigh less than 12 pounds and last 8-12 hours on a charge. They cost $6,000-$10,000 but give you freedom to move around, eat, or sit up without being tethered to a machine. ALS users rate them 4.2 out of 5 for comfort and usability-higher than standard BiPAPs.

As ALS progresses and breathing gets harder, many people switch from BiPAP to a portable ventilator. You don’t have to wait until you’re in crisis. Talk to your care team early about your options. The Trilogy isn’t just for nighttime-it can help you breathe easier while eating, talking, or watching TV.

A therapist helping a patient adjust a portable ventilator while they sip a smoothie, sunlight and nutritional icons glowing nearby.

Nutrition in ALS: Why Weight Loss Is a Medical Emergency

Swallowing becomes harder as ALS affects the muscles in your throat. Food gets stuck. Chewing takes too long. You tire out before you finish a meal. And then you start losing weight-fast. Losing more than 5% of your body weight in a month isn’t just inconvenient. It’s dangerous.

Weight loss in ALS isn’t just about calories. It’s about survival. Studies show that people who lose weight quickly have shorter lifespans. The American Academy of Neurology says that if your BMI drops below 18.5 or your FVC falls below 50%, you’re at higher risk. That’s why nutrition isn’t a side note-it’s part of your treatment plan.

The best solution for many is a PEG tube: a feeding tube placed directly into the stomach through a small procedure. It’s not as scary as it sounds. It’s done under light sedation, takes less than an hour, and most people go home the same day. Once it’s in, you can get all your calories, protein, and fluids directly into your stomach-even if you can’t swallow.

One study found that without a PEG tube, people with ALS lost an average of 12.6% of their body weight over six months. With a PEG, that dropped to just 0.5%. That’s not a small difference-it’s the difference between staying strong enough to use your NIV machine and being too weak to even hold your head up.

And the survival benefit? Adding a PEG tube adds about 120 days to life expectancy. But here’s the catch: it works best when done before your breathing gets too weak. If your FVC is below 50%, the procedure becomes riskier. That’s why doctors push for it early-even if you’re still eating okay. Waiting until you’re starving is too late.

Putting It All Together: The Power of Combined Care

NIV and nutrition aren’t separate issues. They’re linked. If you’re malnourished, your breathing muscles weaken faster. If you’re struggling to breathe, you can’t eat well. But when you do both-start NIV early and get a PEG before your weight drops-you’re not just adding months. You’re adding quality.

A 2013 study tracking ALS patients across multiple countries found that those who received coordinated care-including NIV and PEG-lived 7.5 months longer than those who didn’t. A 2021 global analysis showed an even bigger jump: 12.3 months longer when both interventions were used together.

That’s not luck. That’s science. And it’s available to anyone who asks for it.

A split scene showing weight loss on one side and joyful mealtime with family on the other, symbolizing improved life expectancy.

What Real People Say About NIV and PEG

Online ALS communities are full of stories. One man in Ohio started NIV after his wife noticed he was snoring loudly and waking up tired. Within two weeks, his headaches vanished. He started reading again. He went to his grandson’s soccer game without needing a nap afterward.

A woman in Oregon got her PEG tube after losing 15 pounds in three months. She was scared of the procedure. But after, she gained back 8 pounds in six weeks. She started cooking again-not to eat, but to enjoy the smell, the routine, the connection. She still eats small meals by mouth, but now she doesn’t worry about choking.

Others talk about the hard parts: mask leaks, skin irritation, the emotional weight of accepting help. But the common thread? Almost everyone who stuck with it says the same thing: "I wish I’d done it sooner."

Common Barriers-and How to Overcome Them

Not everyone succeeds with NIV or PEG. Here’s why-and how to fix it:

  • Mask discomfort (63% of non-adherent users): Try different mask types-nasal pillows, full-face, hybrid. Work with your respiratory therapist to adjust straps. Silicone cushions and mask liners help with skin breakdown.
  • Difficulty exhaling (38%): Your pressure settings may be too high. A skilled therapist can adjust IPAP and EPAP levels. Some machines have ramp features that slowly increase pressure as you fall asleep.
  • Feeling like a burden: Many people resist PEG because they don’t want to be "dependent." But it’s not about giving up-it’s about keeping your strength. You’re not losing control; you’re taking it back.
  • Insurance delays: If your insurer denies NIV, ask for a letter of medical necessity from your neurologist. Cite the AAN guidelines. Appeal. Many approvals come after the first denial.

Don’t let fear or bureaucracy stop you. These tools exist because they work. And they’re not just for the end stage-they’re for living well right now.

What Comes Next?

ALS care is moving toward personalized timing. Researchers are now using AI to predict who will benefit most from early NIV based on breathing patterns, muscle strength, and even voice changes. New devices are being developed with built-in CO₂ monitors to automatically adjust pressure based on your blood gases.

But right now, you don’t need the future. You need the present. If you or someone you love has ALS, ask your care team:

  • "What’s my FVC?"
  • "Am I showing signs of breathing trouble?"
  • "Has my weight dropped more than 5% in the last month?"
  • "Can we talk about NIV and PEG now-not later?"

These aren’t scary questions. They’re survival questions. And the answers can change everything.

Can noninvasive ventilation be used during the day, not just at night?

Yes. While many people start with nighttime use, as ALS progresses, daytime breathing becomes harder. Portable ventilators like the Trilogy 100/106 are designed for full-day use. They’re lightweight, battery-powered, and allow you to sit up, eat, or talk while getting ventilatory support. Using NIV during the day can reduce fatigue, improve speech, and make eating easier.

Is a feeding tube only for people who can’t swallow at all?

No. A PEG tube isn’t just for when swallowing is impossible. It’s often used when eating becomes too tiring, slow, or risky. Many people with ALS still eat small meals by mouth but use the tube to supplement calories, protein, and fluids. This helps maintain weight and energy without forcing them to finish large meals. It’s a tool for safety and sustainability-not a last resort.

Does using NIV mean I’m giving up on other treatments?

Not at all. NIV and PEG are supportive care-they don’t cure ALS, but they help you live better with it. Many people on NIV continue physical therapy, speech therapy, and participate in clinical trials. Using these tools doesn’t mean you’re accepting defeat; it means you’re taking control of your daily life. They’re about preserving function, not ending it.

What if I’m worried about the cost of NIV or PEG?

Most insurance plans, including Medicare and Medicaid, cover NIV devices and PEG procedures when medically necessary. If you’re denied, ask for a letter of medical necessity from your neurologist citing the American Academy of Neurology guidelines. Many ALS clinics have social workers who help with appeals and equipment loans. Nonprofits like the ALS Association also offer grants for masks, tubing, and portable ventilators.

Can I still eat normally after getting a PEG tube?

Yes. Getting a PEG tube doesn’t mean you have to stop eating by mouth. Many people continue to enjoy small meals for taste, social connection, and comfort. The tube just ensures they get enough calories and nutrition even if they can’t finish a full meal. It’s a safety net, not a replacement.