When you get diagnosed with ALS, nobody hands you a plan.
In my case, it took 10 months from the first symptoms to the words “Have you heard of ALS?”
Even then, right up until the final appointment, I thought it was unlikely. I knew a little bit about ALS, but not enough to understand what was coming.
What I got from the neurologist was empathy and honesty. What I did not get was hope. The advice was to live every day as if it was my last. Do the things I wanted to do while I still could.
So I came home and wrote a list that night. A holiday to Lord Howe Island, while I could still travel. Get financial affairs in order. Sell assets that would become hard to manage. Apply for the NDIS. Contact MNDSA. The list was practical, and it mattered. But it was not a plan to fight.
That is what I wish I had been given: not a plan for dying, but a plan for living.
Photo from our trip to Lord Howe Island
Lost in the noise
After diagnosis I was like a fish out of water. I started cobbling together supplements, drugs, and vitamin combinations from random corners of the internet. People’s lists, forum posts, blog comments... with no real rhyme or reason. If it looked safe and at least a few people swore by it, it went on my list.
Four months in, I spoke to a GP who had a special interest in mitochondria. That was the first time I started to understand how energy moves through the body and why motor neurons fail in ALS. It gave me a lens to look through. Before that, my biology knowledge went back to year 10 science class, 25 years ago.
I ended up with dozens of supplements. Some I took for weeks or months and dropped. Some arrived in the mail after I had already moved on to a new body of reading and never touched. I probably burned through hundreds, maybe thousands of dollars, all because I did not have a plan.
Looking back, I wish I had spent more time first digging into how the body actually works and how ALS develops. With that understanding, I could have built a better strategy. A strategy that connected my issues with diet, lack of sunlight, high levels of stress, and metabolic health to the disease that finally showed itself.
Why a plan matters
ALS / MND clinics and organisations are filled with caring people who provide medical care, equipment, referrals, and assistive technology. They help with palliative support and practical needs, but they rarely give you hope. The focus stays on the science we can prove, which means riluzole, edaravone, and little else. Few questions are asked about diet, history, workplace, or environment.
And yet, neurologist Dr. Richard Bedlack, who has studied off-label treatments and documented cases of reversal, says hope is the one thing every reversal and slow progressor has in common. Maybe it is chance. Maybe it is design. But if hope drives you to try, and trying leads you to stumble across something that slows progression, then hope matters.
Even if you never know whether you “won.” Because in ALS, winning might mean one extra year.
This plan is for people who want to fight.
The plan I wish I had
1. Understand ALS as best we know it
Read up on how ALS develops. It is not random. Genes, environment, and time all stack together until the threshold tips. Here’s a piece I wrote that explains it. Understanding this model gives you a framework for where to focus.
2. Identify your likely risk factors
Make a list. Genetics, family history, past injuries, workplace exposures, diet, lifestyle, infections. Did you spend years around pesticides? Work in heavy industry? Play high-impact sport? Eat a lot of processed food, sugar, or carbs? These factors matter, and many are in your control.
3. Test where it makes sense
Back your hunches with data. If diet was poor, run a microbiome test. If you worked with metals or still have amalgam fillings, test for heavy metals. If you had outdoor exposure, consider tests for Lyme and co-infections. Check vitamin levels, hormones, inflammation markers. Clinics do not always order these, but you can.
Genetic testing can also matter. A genetic panel may uncover mutations linked to ALS. If you happen to carry the SOD1 gene, there is a targeted therapy (tofersen) now available. It is not a cure, and it can take time before any impact shows, but for those who are eligible it represents the most specific treatment option currently on the table.
4. Build your stack and record it
This could be supplements, dietary changes, devices, or lifestyle interventions. But do not just throw things at the wall. Record what you are taking, why you are taking it, and track your changes over time. That is why I built StackDat, to make sense of a complicated regimen.
5. Set goals and act
Listen to the clinics when they say maintain your weight, they are right. Use best practice: extra calories, high-fat additions, smoothies, whatever works.
Goals are not just physical. Mindset matters too. Get up each day and aim to win in some small way. It might be finishing a walk, keeping weight steady, or even just staying engaged. A win is still a win.
6. Share and compare
Do not do it in isolation. Share what you are trying with others in the community, online or in person. What looks like noise in one person becomes data across many. Clinical trials are another form of this: structured, monitored, and contributing to the bigger picture. Even placebo groups often do better than people who never enter a trial at all, which suggests there is value simply in the act of participating.
Conclusion
The day you get diagnosed with ALS is like being thrown into the ocean without a map. You can sink under the weight of the odds, or you can fight to swim.
But being real matters too. If you or someone you love has ALS, you are facing a terminal illness with brutal averages in both life expectancy and quality of life. Fighting back does not mean ignoring that. It does not mean you should delay practical plans for finances, children, loved ones, and end-of-life care.
You can hold both truths at once. You can prepare for reality while still pulling every lever you can to slow the disease. Hope and acceptance can live side by side. And if that gives you one more year, one more summer, one more chance to live, then it is worth it.
“I guess it comes down to a simple choice, really. You get busy living, or get busy dying.” —Andy Dufresne in The Shawshank Redemption”
