The Dark Side of Diagnosis

In 1979 at just 18 years old, Michael J. Fox dropped out of high school in Canada and moved to Los Angeles to pursue acting. He was so broke that he was literally dumpster diving for food, taking packets of jam from the local IHOP, hiding from his landlord because he couldn't pay rent, and selling his sectional sofa off piece by piece to avoid admitting defeat and going home. He lived like this three years before, in 1982, he got a call from his agent saying he'd landed a supporting role on a show called Family Ties. The show was originally supposed to focus on the parents' lives with the children as side characters, but viewers fell so hard for Michael J. Fox's character Alex P. Keaton that after just four episodes, they restructured the entire show around him. And pretty much overnight, he became one of Hollywood's sweethearts.

Two years later when Robert Zemeckis and Steven Spielberg were casting Marty McFly for Back to the Future, they knew immediately they wanted Fox for the starring role. But the producer of Family Ties, David Goldberg, was worried that if Michael J. Fox got the role in Back to the Future he would leave Family Ties, and he worried the show wouldn't survive if that happened. So he hid the Back to the Future script from him completely. This left Zemeckis and Spielberg with no option but to cast someone else, which they did, but after only a month of shooting with this other actor they realized it wasn't working. The kid they’d gotten to play the part wasn’t fitting the role the way they had envisioned, they couldn’t seem to find a way to make it work, so they doubled down on trying to get Fox. On January 3, 1985, Goldberg finally told him about the script he'd been hiding, and Fox agreed to join on the spot, without even reading it. By January 15th, less than two weeks later, they were already filming.

The agreement was that he could do the role as long as it didn’t stop him from also shooting Family Ties. So for three months straight, he worked on Family Ties from nine in the morning until six at night, then got driven to the Back to the Future set where he'd shoot until 3 in the morning. His Teamster drivers would literally carry him to bed, where he'd get maybe four hours of sleep before starting the whole cycle again. Twenty-hour days, every day, for months. He later wrote that during this period he was "Alex, Marty, and Mike" - and that was two too many. Mike, the actual person, had to disappear.

Back to the Future exploded that July, staying number one for eleven weeks. Fox went from TV star to movie star, and offers started pouring in: Teen Wolf, The Secret of My Success, Bright Lights Big City, Casualties of War. He said yes to all of it. Between 1985 and 1991, while still filming Family Ties, he made ten feature films.

Then in 1991, while filming Doc Hollywood, he noticed his left pinkie twitching. He went to see a neurologist who assured him he'd probably just injured his funny bone. But six months later his entire left hand was trembling, his shoulder was stiff and achy, and another doctor ran tests and diagnosed him with Parkinson's disease. He was 29 years old.

The diagnostic experience

The doctor told him he had "about ten good working years left.” He used words like progressive, degenerative, and incurable. And then he told him "You don't win this, you lose".

After his diagnosis and being cautioned he had "ten good working years left", he hastily signed a three-film contract, appearing in For Love or Money (1993), Life with Mikey (1993), and Greedy (1994). And he also started drinking a lot as he grew increasingly depressed, using the alcohol to "disassociate, to escape my situation". He spent the next seven years in a sort of denial, hiding his condition, popping dopamine pills "as if they were Smarties candies" and washing them down with alcohol, working to time everything perfectly to keep his acting intact.

And…of course he was falling apart. Think about what getting a Parkinson's diagnosis actually looks like in practice. You go into the doctor's office with a small symptom, probably some shaking. They run some tests, and when they come back they tell you: you have an incurable, progressive disease. That means you will have this for the rest of your life, it will keep getting worse, and there’s not a whole lot we can do for you. We have medications to help manage the symptoms, so we will write a prescription for you today, which should help with the shaking at least for a while. Here’s a list of symptoms you can expect:

• Tremor (rhythmic shaking, especially at rest)
• Slowness of movement (bradykinesia)
• Muscle stiffness/rigidity
• Balance problems and falls
• Reduced facial expression (mask-like face)
• Decreased blink rate
• Small handwriting (micrographia)
• Soft or fading voice
• Difficulty turning over in bed
• Less arm swinging while walking
• Difficulty with swallowing
• Drooling
• Loss of smell (often appears years before diagnosis)
• Constipation (can precede motor symptoms)
• REM sleep behavior disorder (acting out dreams)
• Depression and anxiety
• Apathy (lack of motivation)
• Cognitive problems (from mild difficulties to dementia)
• Hallucinations and delusions
• Fatigue/exhaustion
• Low blood pressure when standing (orthostatic hypotension)
• Sexual dysfunction
• Urinary problems
• Pain
• Excessive sweating
• Restless leg syndrome
• Excessive daytime sleepiness
• Visual symptoms

When you notice these symptoms, please let us know, and we can run more tests and decide if we need to adjust your medication. You should talk to your loved ones about this. Here are some resources for you.

We all take the way this is handled medically as a given, but let’s actually think about what just happened. You walked into the doctor’s office with a seemingly small symptom, a tremor, and walked out with a life sentence, from someone you've been conditioned to trust as an authority on your health. And you're already in pathostasis, you have to be, the symptoms prove it. Your body has been stuck in pathostasis long enough that it's starting to break down in visible ways. So at the exact moment when reducing your pathostatic load would be most critical, you just got a massive threat on top of an already overloaded system.

Which begs the question: what does it mean to receive a diagnosis? We treat it as a benign thing. Someone has a condition, you educate them about that condition so that they can manage it more effectively. Within the existing model, this makes perfect sense. You can't work on something you don't know exists.

But pathostasis changes the calculation entirely. Yes, it's reversible - but it's also progressive. Not progressive the way medicine uses the term, not the way Fox's doctor meant it when he said the disease would inevitably worsen until Fox ‘lost’. Pathostasis being progressive just means the longer you spend in it, the more entrenched the dysfunction becomes. The deeper you dig the hole, the more work it takes to climb back out.

Which means early intervention matters a lot. Which for the record is WHY medicine is providing these diagnoses. They want to act fast and try to manage the condition before it gets worse. Within the current understanding, that makes perfect sense.

The nocebo effect

Let’s take a minute to look at what we know about this diagnostic effect.

In January 2022, researchers wanted to know more about what kind of side effects people were experiencing from the COVID-19 vaccination, so they conducted a big systematic review. What they did was compare the results across multiple clinical trials, of what side effects people who received the actual COVID vaccine experienced, versus those who only received a placebo injection (which was just saline, no active ingredients). They found that these placebo patients were experiencing many of the same side effects as the active vaccine group. A whopping 76% of the adverse effects people reported after their first vaccine dose were nocebo effects, which is essentially placebo's evil twin: instead of our ANS creating positive drug effects from expectation, it creates side effects and symptoms, also from expectation. So in this study over three-quarters of the side effects people experienced, the fatigue, headaches, arm soreness, etc., occurred in both groups. The symptoms were real. People genuinely felt terrible. But most of what they experienced wasn't caused by the vaccine itself. It was caused by expecting to feel terrible.

Remember from Chapter 2 what we learned about how expectation works: it creates measurable physiological changes through ANS-mediated systems. Real, documented biological changes driven by what the brain expects to happen, like the dopamine production we saw in Parkinson’s patients. That mechanism doesn't only work in the positive direction. Expectation produces positive effects by shifting ANS function, and negative expectation can produce symptoms and side effects through the exact same pathway.

So outside of these trials, millions of people received COVID vaccines, and many of those millions experienced side effects like exhaustion, headaches and body aches. And most, ¾ of those symptoms, weren't produced by the vaccine's biological mechanism, they were produced by the information they'd received about what to expect. News articles told them to plan sick days and they heard about side effects from friends and family and social media. By the time people went to get their shots, they knew exactly what symptoms they were supposed to develop. And their bodies obliged.

This isn't a new discovery. In 1961, a physician named Walter Kennedy coined the term "nocebo", from the Latin "I shall harm", to describe the negative counterpart of placebo effects. He had connected the dots: if positive expectations could produce healing, then negative expectations should be able to produce harm. He then took his hypothesis and tested it, documenting cases where inert substances produced side effects simply because patients expected them. And armed with this knowledge he warned that this phenomenon was likely contributing to adverse effects across medicine.

But the finding was largely ignored. For decades, the phenomenon he'd identified, that negative expectations could produce real, measurable harm, languished in obscurity.

Which brings us back to: what happens when we give someone a diagnosis?

When we hand someone a diagnosis - whether ‘psychiatric’ like depression or ‘medical’ like Parkinson’s, we're not just describing their current symptoms. We're teaching them what to expect. The patient learns: these are the symptoms I should notice, this is how my disorder will present, this is what my future will look like. And just like the COVID vaccine recipients who knew to expect fatigue and headaches, the brain has now been given a script.

And what’s especially problematic about this effect, given the framework we have just uncovered, is that when it comes to chronic diseases, medicine’s understanding of what they are diagnosing is limited at best. Like in Alzheimer's where they think the patient's neurons are dying despite lucid periods proving they are not, medicine says Parkinson's is caused by the death of dopamine-producing neurons in the substantia nigra. And because dead neurons can't come back, they consider the disease progressive, and irreversible. Yet as we know, Parkinson's patients show dramatic improvements with placebos - producing real dopamine, improving real motor function. And Parkinson’s patients show improvements from relaxation and mindfulness as well. That’s not how it would work if the cells were dead.

ALS is another neurodegenerative disease that’s considered progressive and incurable, but Dr. Richard Bedlack at Duke University has been documenting ALS reversal cases since 2011 and has confirmed 60 reversals to date. These are patients who met full diagnostic criteria including EMG-confirmed denervation, meaning their muscles had visibly stopped working and this could be seen on tests, and then recovered significant or complete motor function. Follow-up EMGs show reinnervation patterns. Dead neurons don't reinnervate. Dormant ones do. But because medicine doesn’t have a template for reversing or healing from chronic disease, they assumed these patients must have been misdiagnosed.

So given that, let’s go back to Michael J. Fox for just a minute. Imagine if instead of being told: this is it forever, your life as you know it is over, you are going to be dependent on the medical institution to manage your symptoms in-so-much as we are able from now on, but expect precipitous decline. Imagine instead if his doctor said something to him like this:

This shaking you are experiencing tells us that your body has been stuck in pathostasis for a while. But this is something we can manage. We caught it early, you’re really young, we know how to help.

You can finish working on the projects you are in the middle of if that’s important to you, all the choices you make will be yours to make, but we strongly recommend taking a break or at minimum hugely reducing your workload. At least for six months to a year so we can try this new protocol to get this under control, and see how your body is responding. You are in a critical window where we can give you these drugs to help your shaking, and they will work for a while, but eventually they will stop working as well, you’ll need more, or different drugs, or they can stop working entirely. The rehabilitation work you need to do to reverse this is easier now before you develop associations in your brain with these symptoms and before the cascade from these chemicals progresses too far. Here is a referral to a rehabilitation program that can teach you how to turn your prefrontal cortical control over the off switch back on, and help you recondition any associations in your brain that have already been made.

If he had been told this, instead of a life sentence, he would have had hope, agency, and a way out. Let’s look next at why his system got stuck.