After Parkinson's Dementia Diagnosis: Engineer Turned Caregiver (Part 2)

In mid-2008, my wife was finally diagnosed with Parkinson's disease with dementia at age 49 - two years after the first signs appeared. I expected relief. Instead, I faced a new challenge: learning to fight a disease that no one could cure. This is Part 2 of a 3-part series.

Key Stages of Parkinson's Dementia Progression I Witnessed as a Caregiver

Before sharing the full story, here is a timeline of the disease progression I witnessed in my wife after diagnosis. If you are caring for someone with a similar condition, knowing what may come can help you prepare:

• Post-diagnosis despair (2008): Learning that two years of delayed diagnosis had allowed irreversible damage
• Self-directed research: An engineer studying neurology, ordering medical books, and visiting alternative medicine clinics
• Discovering functional medicine (2009): A systems-based approach that finally slowed the progression
• Mobility decline: Normal walking to shuffling gait, frequent falls, then wheelchair dependency
• Dysphagia (swallowing difficulty): Inability to eat by mouth, requiring a nasogastric tube (L-tube), later replaced by a PEG tube
• Loss of independence: Each ability lost - walking, standing, self-feeding - felt like losing her again

What Happens After a Parkinson's Dementia Diagnosis?

In mid-2008, we finally had a name for what was happening to my wife: Parkinson's disease with dementia. After two years of searching, I expected the diagnosis to bring relief. Instead, it brought a different kind of despair.

The neurologist's words still echo in my mind: the early intervention had come too late. My wife had lost two irreplaceable years. And now the disease was accelerating.

How Did an Engineer Approach a Disease No One Could Cure?

During those two lost years, watching my wife deteriorate while doctor after doctor offered no answers, something shifted inside me. I am an engineer. When a machine breaks down on a factory floor, I don't wait for someone else to fix it. I study the problem, I research, I find a solution.

I decided to apply the same approach to my wife's illness.

I began ordering books from Korean publishers, from Amazon, from anywhere I could find credible information on neurodegenerative diseases. I read about Parkinson's, about dementia, about the brain. I read medical journals that were far outside my field. I was a mechanical engineer trying to understand neurology, but I had no choice.

We visited several clinics that practiced alternative medicine. Some offered hope. None delivered results. Months passed with little improvement.

How Did Functional Medicine Change Our Fight Against Dementia?

In 2009, I came across a book on Amazon: The Ultramind Solution by Mark Hyman. It introduced the concept of functional medicine, an approach that looks at the body as an interconnected system rather than treating isolated symptoms.

Something about it made sense to me. As an engineer, I understood systems. I understood that when one part fails, the root cause is often somewhere else entirely. Functional medicine seemed to think the same way about the human body.

I made a decision. We would try it.

I found a functional medicine clinic in Bundang and began taking my wife there twice a week. It was a significant commitment in terms of travel, cost, and time, but I had run out of alternatives.

And then, for the first time in years, something changed. The relentless decline began to slow. My wife's condition started to stabilize. It was not a cure. It was not a reversal. But after watching her fall further and further every month, stabilization felt like a miracle.

What Does Physical Decline Look Like in Parkinson's Dementia?

Still, the disease did not stop. It simply slowed its pace.

My wife's steps grew shorter. Where she once walked normally, she began to shuffle - tiny, hesitant steps, as if her feet had forgotten how to leave the ground. Then came the frequent stumbles. Then the wheelchair.

Each transition felt like losing her again. Every ability she lost - walking, standing, feeding herself - was another piece of the woman I knew, quietly disappearing.

My wife, our daughter, and our dog Younggu, 2014.

Then came the swallowing difficulties. Dysphagia, the doctors called it. Food and liquid became dangerous. Every meal carried the risk of aspiration, of choking, of pneumonia. Eventually, she could no longer eat by mouth.

A nasogastric tube - an L-tube through her nose - became her lifeline. The doctor told me that long-term survival on an L-tube alone would be difficult. I heard those words, and the engineer in me woke up again. I went back to the books. I went back to researching.

Through continued functional medicine treatments and relentless study, we managed to slow the progression. Later, the L-tube was replaced with a PEG - a gastrostomy tube inserted directly into her stomach. It was more stable, more sustainable. One more problem solved, one more adaptation made.

The Promise That Keeps a Caregiver Going After 18 Years

In September 2011, I received an urgent call from Samsung Medical Center. My mother-in-law was in critical condition.

I put my wife in the car and rushed to the hospital. The entire family gathered: my father-in-law, my wife's siblings and their families, our children. We were told to say our goodbyes.

My mother-in-law, despite her condition, was remarkably calm. She spoke with each family member, one by one. When our turn came, I held her hand and said:

"Mother, you know I love Jungyeon, don't you? I will take full responsibility for her. Please don't worry."

She couldn't speak. A tracheotomy had taken her voice. But she held my wife's hand and wept. Then she took a pen and a notepad, and with trembling hands, she wrote: "Thank you. I trust only you."

Her condition seemed to stabilize, and we all believed she had passed the crisis. The family dispersed. I drove my wife home and headed to the university. On the way, my phone rang. Samsung Medical Center. My mother-in-law had passed away.

I could not bring myself to tell my wife. She had already lost so much: her words, her mobility, her independence. I could not add this. Our daughter and son and I shared the grief among ourselves, quietly, trying to protect her from one more loss.

But the promise I made that day has never left me. It is still what drives me, every single morning, eighteen years later.

What I Have Learned as a Long-Term Dementia Caregiver

People sometimes ask me how I have kept going for so long. I don't have a poetic answer. I am an engineer. I made a promise. I solve the next problem. And then the next one.

The functional medicine approach taught me something important: you cannot cure everything, but you can fight to slow things down. You can buy time. And sometimes, time is everything.

In Part 3, I will share where we are now: the move to Goyang, the ventilator, the room full of equipment I built, and what a day in our life looks like today.

Frequently Asked Questions

What is functional medicine and how can it help with Parkinson's dementia?

Functional medicine views the body as an interconnected system rather than treating individual symptoms in isolation. Instead of focusing on one organ or disease, it looks for root causes across the entire body. In our experience, functional medicine treatments helped stabilize my wife's condition after years of relentless decline. It was not a cure, but it noticeably slowed the progression — which, after watching her deteriorate month after month, felt like a breakthrough.

What does the physical decline look like as Parkinson's dementia progresses?

The decline is gradual but relentless. My wife went from normal walking to a shuffling gait, then frequent falls, then a wheelchair. Each loss of ability — walking, standing, self-feeding — felt like losing her again. Eventually, dysphagia (swallowing difficulty) made eating by mouth dangerous due to aspiration risk. She transitioned from a nasogastric tube (L-tube) to a PEG (gastrostomy tube) for more stable, long-term nutritional support.

How do long-term dementia caregivers keep going for years or even decades?

There is no poetic answer. As an engineer, I approach it practically: I made a promise to my wife and her mother, and I solve the next problem as it comes. Functional medicine taught me that you cannot cure everything, but you can fight to slow things down and buy time. Having a dedicated care team, continuing to learn, and treating each challenge as an engineering problem to solve has kept me going for over 18 years.

Written by Kwonhee Kim - engineer, professor, and full-time caregiver to his wife living with Parkinson's disease dementia since 2006.

This post reflects personal experience only and is not medical advice. See our Disclaimer.

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