Searching for the “Why”: ALS, Metabolism, and the Questions That Stay With Us

ALS metabolism research article by Dr Jerome Fryer exploring mitochondrial dysfunction and metabolic health in neurological disease

WHY?

About a year ago, I lost my mom to ALS.

Like many families who face this disease, we eventually found ourselves asking the same question that echoes through neurology clinics, research labs, and quiet living rooms everywhere:

Why?

Why her?

She appeared healthy. Strong mentally. Strong in character. Someone who carried herself with quiet resilience. She lived a full life and raised a family with more love than I probably appreciated fully at the time.

Yet ALS arrived anyway.

And once it appeared, it progressed with a certainty that medicine still struggles to interrupt.

Since her passing, my curiosity as a clinician has merged with something much more personal. I now read ALS research not just as a chiropractor and researcher, but as a son trying to better understand what happened.

When Research Becomes Personal

As part of my ongoing effort to stay current in musculoskeletal science, I subscribe to PubMed alerts for topics like:

• Spine health
• Disc degeneration
• Patient education
• Musculoskeletal research

After my mom passed, I added another keyword:

ALS.

Not because I expected answers.

But because understanding feels like movement forward.

Recently, a paper appeared that immediately caught my attention because it approached ALS from a perspective that aligns closely with how I think about health:

Metabolism.

The study suggests ALS may involve early mitochondrial failure within the hypothalamus — an area of the brain responsible for regulating metabolism, inflammation, and energy balance.

This is a very different way of thinking about ALS.

Not just as a motor neuron disease.

But potentially as a systems disease.

ALS May Begin Long Before Symptoms Appear

Traditionally, ALS has been viewed primarily as a disease affecting motor neurons. Muscles weaken because the nerves controlling them degenerate.

But this research suggests something broader may be occurring beneath the surface.

The authors identified early dysfunction in the hypothalamus, including mitochondrial impairment and neuro-immune disruption before obvious motor symptoms appear.

That matters because the hypothalamus regulates fundamental biological processes such as:

• Energy regulation
• Body weight control
• Hormonal balance
• Inflammatory signaling
• Stress responses

When this system becomes vulnerable, the effects may ripple throughout the body.

This raises an important and humbling possibility:

What if ALS begins long before we recognize it?

The Mitochondrial Question

One of the most compelling aspects of the research is its focus on mitochondria — the cellular structures responsible for energy production.

When mitochondria struggle, cells struggle.

The study suggests mitochondrial dysfunction may occur early in ALS progression, possibly contributing to the hypermetabolism and unexplained weight loss often seen in patients.

This idea resonates with me personally.

Because when I look back now, I find myself wondering whether subtle metabolic changes may have been present long before the diagnosis.

Not obvious.

Not dramatic.

Just quiet biological shifts that no one would have recognized at the time.

The Question Every Family Asks

When someone develops ALS, families naturally search for a clear cause:

Was it genetics?

Diet?

Environment?

Lifestyle?

Stress?

The difficult truth emerging from research is that ALS rarely offers a single answer.

Instead, it may involve multiple interacting systems:

• Cellular energy regulation
• Neuroinflammation
• Metabolic health
• Genetic susceptibility
• Stress response pathways

Which leads to a difficult realization:

Sometimes the answer to why is not one cause, but a convergence of vulnerabilities.

A Lesson Medicine Teaches Us — Whether We Want It or Not

One of the hardest lessons medicine teaches is that health is not always proportional to effort.

We want to believe that if someone lives reasonably well, a serious disease should not appear.

But biology does not always follow fairness.

As clinicians, we often stand on the treatment side of disease.

As family members, we stand on the uncertainty side.

And uncertainty is much harder.

What This Research Gave Me

This paper did not give me an explanation for why my mom developed ALS.

But it gave me something else:

A better way to think about the question.

Instead of asking:

What caused ALS?

We may need to ask:

What systems became vulnerable long before ALS appeared?

That shift matters.

Because it changes the conversation from searching for blame to understanding biological resilience.

How This Connects to My Clinical Philosophy

In musculoskeletal medicine, we see similar patterns.

Disc degeneration develops years before symptoms.

Joint changes occur long before pain.

Instability may exist long before injury.

Metabolic changes often precede diagnosis.

What we treat clinically is often the visible stage of a much longer biological story.

ALS may follow a similar path.

Not appearing suddenly.

But emerging from biological processes we are only beginning to understand.

This reinforces something I have come to believe strongly as a clinician:

Understanding matters just as much as treatment.

Sometimes more.

The Role of Curiosity After Loss

Some people understandably avoid reading about diseases that affected their families.

I find myself doing the opposite.

Because research feels like progress.

And progress feels like hope.

Even when answers are incomplete, direction still matters.

Each study adds another small piece to a much larger puzzle.

And puzzles eventually become pictures.

What My Mom Gave Me

My mom gave me many things.

She gave me support before I knew I needed it.

Confidence before I earned it.

And encouragement long before I understood its value.

She believed in me in a way only a parent can.

And I know she loved me more than I probably deserved.

I hope she would be proud that I am still asking questions.

Still learning.

Still trying to understand.

Still loving her.

Because curiosity was something she always encouraged.

A Dedication

This article is for my mom.

For her strength.

For her kindness.

For the quiet way she supported the people around her.

And for the love she gave me that still shapes who I am today.

If understanding ALS helps even a little in the future — for someone else’s family — then continuing to learn feels worthwhile.

Final Reflection

ALS reminds us of something important:

Medicine is very good at treating what we understand.

It is still learning how to prevent what we do not.

This research reinforces that ALS may not simply be a disease of movement, but a disease involving metabolism, cellular energy, and system resilience.

We may not yet know how to stop it.

But we are slowly learning how to understand it.

And understanding is where progress begins.

So I continue reading.

As a clinician.

As a researcher.

And always, as a son.


Reference

Scaricamazza S, Nesci V, Fenili G, et al. The hypothalamus is an early site of mitochondrial failure and neuro-immune circuit disruption in amyotrophic lateral sclerosis.

A Clinical Hunch Worth Paying Attention To

One clinical thought that has stayed with me through both my practice and my personal reading since my mom’s passing is the possible role of metabolic health in neurological vulnerability. While ALS is clearly complex and not caused by blood sugar alone, research continues to point toward energy regulation and mitochondrial function as important pieces of the puzzle.

Because of this, I have become increasingly interested in how we can better understand our own metabolic health before problems arise. One practical tool I now suggest people consider — not as a medical treatment, but as an educational experiment — is a short trial of a continuous glucose monitor (CGM).

These devices allow you to see your glucose levels in real time and observe how your body responds to:

• Different foods
• Exercise
• Sleep quality
• Stress
• Meal timing

I personally wore one for a trial period and found it incredibly insightful. It changed how I understood my own metabolism. Seeing how certain carbohydrate loads affected glucose levels — and how long it took my body to bring those levels back down — provided a level of awareness that routine bloodwork simply cannot provide.

What struck me most was not just how high glucose could rise, but how differently the body responds depending on sleep, activity, and food choices. It reinforced something we are increasingly seeing in research:

Metabolic health is dynamic, not static.

While we cannot say this prevents diseases like ALS, understanding how our body manages energy may be one small way we can better support long-term neurological and systemic health.

Sometimes awareness is the first step toward resilience.

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