Henry Portal, my uncle, in his youth
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This post is Mehmet’s website version of the first episode in the Parkinson’s series by Liat Portal, written with Dr. Minna Schmidt.
The first episode begins with Henry Portal, Liat’s uncle, and the symptoms that the family did not know how to read. It connects family memory, visible changes, Parkinson’s, medical research, and Dr. Minna Schmidt’s scientific explanation of what may be happening in the body before the disease becomes fully visible.
The Liat Show is rebuilding our world through storytelling, powered by readers. To receive new posts first and support my work, join as a free or paid subscriber on Substack and stay ahead of the next chapter before the door closes.
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How did I Get Here?
I first met Minna at The Innovation Bridge: Startup Nation to SF event. I was one of the panelists and briefly talked with the attendees. Most of these small talks were short, so I remember her face from them, but nothing from this introduction caught my attention more than the others.
The event organizers said it was excellent, and the feedback they received was fantastic. I do not tend to flatter myself on events I participate in because I think it’s a sign of insecurity rather than confidence. So I prefer to let the audience speak, and if the feedback is genuine and authentic, they will come to the next one. Otherwise, it’s just a bunch of words that make people feel high for a few minutes, but after a while, it disappears, which is exactly what dopamine does to our bodies.
A week later, Minna sent me an InMail on LinkedIn. For those who do not know what it is or do not use LinkedIn at all, InMail is a direct messaging service on LinkedIn that allows you to send private messages to users you are not directly connected with.
It always warms the heart to receive these kinds of messages. Knowing that I impacted people and my words left a mark, so they signed up to my show on Substack, it’s a feeling that is difficult for me to describe in words. It combines being proud like a parent, pleased like a teacher, satisfied like a leader, and thrilled like a performer.
While replying to Minna’s InMail, I reviewed her LinkedIn profile and learned that she is a dedicated Parkinson’s disease researcher at The Buck Institute for Research on Aging. Her impressive resume immediately stood out. She earned her degrees from top California universities, including the University of Southern California (USC), UC Santa Cruz (UCSC), and Brandeis University.
Minna holds a PhD in Biology of Aging, which sounds fascinating and frightening at the same time. We are aging, which is a fact. Some of us deny it while others accept it. But no matter where we are within that range, we have a lot to learn. Therefore, ongoing research is essential to helping us live better lives. Our ability to prevent or treat diseases that can be prevented depends on constant scientific research.
My uncle, Henry Portal, suffered from Parkinson’s disease, and writing about this topic has been on my mind several times. So, after reading Minna’s profile, I couldn’t help but share it with her and ask if she’d like to write about Parkinson’s with me. There were other topics on my healthcare pipeline list, but since this one came up, I wondered if the universe was signaling me to start with that first. She replied and said she would be honored to write with me. That was the beginning.
Henry Portal, my father’s oldest brother, was the firstborn of Zohara and Haim Portal in Marrakesh, Morocco. He was a gifted artist and painter, loved sports, especially soccer, and worked as a draftsman for a civil engineering company. His legs were his source of power. The artistic talent that flowed through his hands was rare and uniquely expressed when he painted memories of Morocco or imagined biblical scenes. His body was his greatest asset, and his artistic talent was one of a kind.
My uncle was diagnosed with Parkinson’s disease at 64 after the family noticed he was losing his balance and stumbling over objects around the house. When they looked back, the symptoms were apparently there, but they didn’t know how to read them. Henry lived with Parkinson’s for 16 years, during which the deterioration was incredibly slow and cruel, as the mind remained sharp while the body’s functions declined.
Henry’s body betrayed him in the things he loved most. Sports, painting, and biblical writing were more than hobbies; they were his sources of energy. While most people dream of retiring to focus only on what they love, he found himself retired, unable to do them, and dependent on a caregiver for basic tasks. The most embarrassing thing for him was that my aunt walked him to the synagogue; it was hard for him to accept the change in his condition. Dependence on caregivers is one of the moments when Parkinson’s becomes impossible to hide, and that visibility often comes with shame.
Henry needed research that was not yet ready for him. That gap is not accidental. Not many know that healthcare investments are one of the longest to produce ROI because research takes many years. As a matter of fact, several decades is a reasonable amount of time in many scientific fields; however, everything depends on research results and on providing researchers with the resources they need to continue their work.
Funding is the most crucial part of our current healthcare system, and we tend to ignore it. So I’ll write it clearly: if you want to prevent an illness or solve a healthcare problem, whether it’s having medicine for a disease or the ability of doctors performing surgeries to help you heal, we need to invest in research for at least a few decades until researchers find a breakthrough for further study. Following their results, more research can lead to the development of commercialized medications or surgeries to cure people.
If we want to find a cure in 10 years, we should have invested in research at least 10, 20, or 30 years ago. We tend to ignore that part, but researchers are the most crucial link in the chain that eventually delivers us medications, treatments, and better ways to prevent disease. And when researchers stop studying, healthcare stops progressing.
Therefore, it’s essential to get to know researchers and follow their work because they are the real idols and heroes of this planet. Without further ado, I’ll start by introducing Dr. Minna Schmidt, a scientist at the Buck Institute for Research on Aging, whose work explores how exercise and gut health can slow or even counter some of the damaging processes behind Parkinson’s.
Minna:
Firstly, thank you, Liat, for welcoming me to your forum. It was really a pleasure to meet you and to become acquainted with your mission.
As Liat mentioned, I am a researcher studying Parkinson’s disease (PD) in the context of aging.
Parkinson’s is often described as a disease of the brain, but by the time the brain shows symptoms, the disease may already have been active in the body for years. The cause of PD is unknown, but it may involve processes of aging, the microbiome, the gut-brain axis (aka the vagus nerve), and other systems we still do not fully understand. It may present as movement problems (too much or too little), but it can also be hidden as problems in the gut or in the sense of smell. That is why Parkinson’s is not only a disease of what we see. It is also a disease of what may have been happening long before we knew how to look.
Clinical diagnosis of Parkinson’s is made upon presentation of distinct motor symptoms – usually bradykinesia (slowness). However, PD is a syndrome and therefore comprises many symptoms. Symptoms may start before diagnosis and develop into new ones over time. Within the brain, PD affects dopaminergic (dopamine-producing) neurons. This leads to progressively reduced control over movement, meaning that a person with Parkinson’s (PwP) may sometimes have dyskinesia (excessive movement) and at other times bradykinesia (slowness of movement).
This was the first episode in the Parkinson’s series by Liat Portal, written with Dr. Minna Schmidt. It begins with how this story found me, how my uncle Henry Portal entered it, and why Parkinson’s must be understood before it becomes fully visible.
Read the complete series:
- The Portal Into Parkinson’s: The Symptoms My Family Did Not Know How to Read
- The Visible Layer of Parkinson’s: What We See Is Only the Surface
- Back to the Future of Parkinson’s: Michael J. Fox, Ozzy Osbourne, and the Shock of Seeing It Young
- Forward to the Past: Michael J. Fox and the Disease That Was Moving Before the World Could See It
- When Visibility Becomes Infrastructure: Michael J. Fox, Fox Insight, and the Data That Changed Parkinson’s Research
- Into the Void: Ozzy Osbourne, Sharon Osbourne, and the Parkinson’s Timeline Nobody Read Correctly
- Paranoid, Fragile, and Still on Stage: Ozzy Osbourne, Sharon, and the Visibility Parkinson’s Needed
- The Buck Institute, the Microbiome, and the Data Parkinson’s Research Still Needs
The Liat Show is a multi-domain story universe unfolding across domains in real time. To receive new posts, join as a free or paid subscriber. Annual and founding members enter the story before the rest of the world understands it.
🧠 Q&A
What is this post about?
This post introduces the first episode in Liat Portal’s Parkinson’s series, written with Dr. Minna Schmidt. It begins with Henry Portal and the symptoms that the family did not know how to read.
Why does the story begin with Henry Portal?
Because Parkinson’s often becomes visible inside family life before anyone knows how to name it. Henry’s story shows how changes in balance, movement, dependence, dignity, and daily life can appear before families fully understand what they are seeing.
Who is Dr. Minna Schmidt?
Dr. Minna Schmidt is a Parkinson’s disease researcher at The Buck Institute for Research on Aging. In this series, she explains the scientific side of Parkinson’s, including aging, the microbiome, the gut-brain axis, movement symptoms, and research questions that may help scientists understand the disease earlier.
Why does this episode matter?
It matters because it shows the gap between seeing symptoms and understanding them. Families may notice changes long before diagnosis, but they may not yet have the medical language or scientific context to interpret what is happening.
What is the central idea of Episode 1?
The central idea is visibility. Parkinson’s may be active in the body before it becomes clear from the outside. When the disease finally becomes visible, it can change family understanding, diagnosis, research questions, funding, and patient participation.
Why should readers continue to the full series?
The first episode opens the doorway. Later episodes connect Henry Portal’s story to Michael J. Fox, Ozzy Osbourne, Sharon Osbourne, The Buck Institute for Research on Aging, Fox Insight, microbiome research, exercise, patient data, AI modeling, and the question of how visibility can become useful for science.
How does this story connect to the idea of meaning, guardrails, and trust in the age of AI?
This story shows that meaning begins before data becomes a system. A visible symptom inside a family is not only medical information. It is memory, interpretation, fear, uncertainty, caregiving, and lived experience. In the age of AI, trust depends on keeping human meaning connected to the signals systems learn from. The symptom, the patient, the family, the researcher, and the scientific question must remain connected so the disease does not become separated from the people living through it.
This piece is part of a wider body of work that unfolds through connected sets, series, and long-form explorations. I weave together episodes from my life with science, history, culture, health, and the systems that shape the world around us. Some pieces stand alone as entry points. Others continue lines that began long before this one and will continue to unfold over time. Each installment adds depth to the ones before it and expands the universe I am building across platforms.
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The Liat Show is a multi-domain story universe unfolding across domains in real time, powered by readers. To receive new posts, join as a free or paid subscriber on Substack and stay ahead of the next chapter before the door closes. Annual and founding members enter the story before the rest of the world understands it.
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