Stop. Before you do anything with the words in this post, hear me clearly.
I am not a doctor. I am not a dietitian. I am not a health expert. I have ALS, and I am trying to slow it down. That’s it.
If you treat this as advice, you are playing with fire. Diet in ALS is not trivial. Get it wrong and you can speed up your decline. The research is clear: people who lose weight live shorter lives. Maintaining weight means survival, and a ketogenic diet makes that harder. It is calorie-dense, but not easy to actually eat enough of it to maintain weight.
So take this as it is meant to be: one person’s story, plus a dive into the science and case studies. This is exploration, not a prescription.
One of the reasons I even looked to a big diet change is because, leading up to my diagnosis, my gut was a mess. Too much information, maybe, but I had years of loose, diarrhea-like stools. The truth is, I never really focused on healthy eating. My diet was heavy on processed foods, sugar, and carbs, and I suspect that this way of eating was at least one of the factors that tipped me over the threshold, stacking with genetics and environment until ALS began.
The energy crisis in ALS
ALS is an energy disease as much as it is a motor neurone disease. Mitochondria, the batteries inside cells, stop working properly. They leak energy, spit out free radicals, and starve neurons until they burn out.
The ketogenic diet flips the fuel source. Instead of running on glucose, you run on ketones, and ketones are a cleaner source of energy. They make it easier for stressed mitochondria to keep producing ATP, they generate fewer free radicals, and they support the renewal of damaged mitochondria.
Research shows ketones do more than that. They calm inflammation, push overactive microglia back into a protective mode, and raise neurotrophic factors like BDNF that help neurons survive. They even reshape the gut microbiome, bringing in more good species and less of the bad, tightening up the blood–brain barrier and reducing background inflammation.
That’s the theory. It is not proven in ALS yet, but it is promising. The mechanisms make sense, and they fit the disease. This review explains the science in detail.
ALS Untangled has also looked at ketogenic diets and came to a familiar conclusion: there are plausible mechanisms and intriguing early data, but the science is not in yet. That is the case with many things they review. The weight of evidence is never absolute, but it can be enough to keep exploring.
Protein cleanup and fasting
ALS is not just about energy. It is also about garbage. Proteins like TDP-43 misfold, clump together, and choke neurons to death. Clearing them is just as important as feeding neurons energy.
In September 2025, researchers at Aarhus University discovered a new piece of machinery in cells that grinds up these clumps into smaller pieces before sending them into the trash system, autophagy. Without that grinder, the system clogs. With it, cells can finally clear toxic waste.
Why does this matter for diet? Because ketogenic states and fasting are both known to trigger autophagy. They flip the switch that tells cells to clean house. That means even if you never go full ketogenic, intermittent fasting could be one way to help your body clear out the protein garbage that drives ALS.
Read about the discovery here.
What I actually eat
It is one thing to talk theory. Here is how I make it work in practice.
- Breakfast: a nut and seed granola mix with two tablespoons of coconut oil.
- Lunch and dinner: extra-large meals from Nourish'd, usually 600–700 calories each. I boost them with side salads, carrot, cucumber, tomato, capsicum, rocket, plus cheese. I top meals with good-quality sour cream that has no additives.
- Snacks: biltong with no artificial flavours or colours, sometimes a handful of pecans.
- Drinks: only filtered water plus one coffee a day.
- Fasting: no food between 6:30pm and 8:30am most days. Recently I have added a 24-hour fast once a week, filling the calorie deficit before and after so I do not risk long-term weight loss.
The Nourish'd meals I eat are typically 15 to 35 grams of carbs each and high in protein, so on some days I probably go over 50 grams of carbs in total, which makes this more of a ‘dirty keto’ approach than a strict ketogenic diet. Even so, with intermittent fasting and my overall intake, I expect I often stay in ketosis.
When I first started experimenting, I went carnivore. Six weeks later I had dropped 10 kilos and was worried. Things stabilised once I moved toward keto with a more balanced plan. If my progression was faster and more aggressive, and if I was struggling to keep weight on, I would probably reconsider this approach.
Case evidence: one man, one diet
In 2024, doctors in New Zealand published one of the first documented cases of a patient with bulbar-onset ALS who followed a strict time-restricted ketogenic diet for 18 months. Normally, bulbar ALS kills within two years of symptoms starting.
This man ate twice a day, keeping each meal within about an hour and spacing them apart, high in fat and protein and almost no carbs. He refused riluzole.
The results shocked the researchers. His ALS function scores went up by 7% instead of dropping. Lung function improved. Fatigue and depression dropped. Quality of life climbed. Swallowing and cognition held steady. And he was still independent on his farm 45 months after symptoms began.
Not a cure. He still declined in some areas. But survival was stretched, and the slope was softer.
Others in the community: Bill Brennan
The New Zealand case study is not the only story out there. In the wider ALS community, some people swear by ketogenic diets as one of the things that has helped them.
One of the most visible examples is Bill Brennan, who founded the popular Facebook group Reversing ALS / MND. Bill promotes ketogenic eating, intermittent fasting, and targeted supplements as part of the approach he believes helped him reverse many of his ALS symptoms.
On his site he describes studying nutrition and health science in depth, logging over 20,000 hours of research, and building his own protocol. He reports regaining functions most of us are told will only ever decline: speech, swallowing, breathing, balance, muscle strength. His base protocol is a strict nutritional ketogenic diet with intermittent fasting, layered with testing for infections and toxins, gut repair, and a long list of supplements.
Whether or not you agree with every part of Bill’s program, his story highlights something important: there are people with ALS experimenting outside the clinic system, finding approaches that work for them, and crediting ketogenic strategies as part of the reason. At the same time, Bill can be a polarizing figure in the ALS space because much of his advice directly contradicts what neurologists and MND clinics tell us inside the healthcare system.
Caution and balance
The ketogenic diet is not a magic bullet. It is risky if you cannot keep your weight up. And in ALS, weight is survival. That is why I stack calories where I can, why I eat extra-large meals, why I add fat and sides.
It is also not for everyone. What worked in one man in New Zealand may not work for me, and what works for me may not work for you.
If diet was one of the factors that tipped me into ALS, then diet is also one of the levers I will keep pulling to try and slow it down. This is not advice. It is survival. And I will use every lever I can find and use safely.
