I Have Parkinson's. My Doctor Says My Medication Is Working. He's Right. But For Three Years, I Was Still Disappearing... And Nobody Could Tell Me Why.
By Robert H., 71 | June 14, 2026
I want to say something I've never said to my kids.
Not because it's hard to say. Because by the time we're sitting at dinner and I open my mouth, I've already forgotten what I was going to say. So I smile and say I'm fine and they pretend to believe me and we move on.
I'm not fine.
I haven't been fine for a while. The medication works, my neurologist tells me so at every appointment and I believe him.
The tremors are managed. The numbers look good. By every measure that medicine knows how to measure, I'm stable.
But I sit in that chair by two in the afternoon and there's nothing left. Not tired like before. Something else. Just tired, always tired, no matter how many hours I sleep.
I watch my family talk at dinner and I'm there but I'm not really there. By the time I think of something to say, the conversation has already moved on.
I stopped telling them how bad it was about a year into this. I didn't want to be a burden. I didn't want to be the reason anyone canceled their plans or changed their face when they looked at me.
So I said I was fine. Every time.
This is the first time I'm not saying that.
Who I Was Before This
I spent thirty-four years as an electrical engineer. I built things, fixed things, figured things out.
My kids grew up watching me take apart anything that broke and put it back together. That was just who I was. The guy with answers. The one you called when something stopped working.
I retired at 66 and had plans. Projects in the garage. More time with the grandkids. A trip my wife and I had been putting off for fifteen years.
I was diagnosed with Parkinson's at 68.
The first year wasn't bad. The tremors started in my right hand but the medication helped.
My neurologist was straightforward and honest. He told me what to expect and what not to expect. I appreciated that. I'm not a man who does well with being handled gently.
What nobody told me, what I don't think anybody knew to tell me, was what was coming with the fog.
What The Brain Fog Actually Feels Like From The Inside
People who don't have Parkinson's think the tremors are the worst part.
They're not.
The tremors are visible. You can point to them. Explain them. Work around them.
My kids understand the tremors. They know some days are better than others. They know not to hand me things that require a steady grip.
The brain fog is different. I can't point to it. I can't explain it in a way that makes sense to someone who hasn't felt it.
The closest I've come is this: imagine waking up every morning already behind. Already running at half speed.
The words are there somewhere but getting to them takes longer than it used to. A lot longer. And some days they don't come at all.
I used to read every night before bed. History mostly. I've read maybe four books in the last two years. By the time I get to the bottom of a page I can't remember what was at the top.
I used to be the one telling stories at family dinners. Long ones. My wife would roll her eyes and my kids would laugh and I'd just keep going because I had a point and I was going to get there.
Now I start a sentence and somewhere in the middle I lose the thread and I just stop. And everyone waits. And I say never mind. And we move on.
I started avoiding phone calls. Not because I can't talk but because I can't keep up with a conversation the way I used to and I don't want the person on the other end to notice.
I told my daughter I just don't like talking on the phone anymore. That's not true. I've always liked talking on the phone.
I say I'm fine because explaining the truth is exhausting. And because I don't have words for it most days anyway. And because the people I'd tell are the same people I've spent my whole life not wanting to worry.
Nearly all day every day, the brain fog is there.
Some days worse. Some days it lifts a little around ten in the morning and I get a couple good hours. I try to make the most of those hours. By two in the afternoon I'm back in the chair.
That's been my life for three years.
What My Doctors Didn't Tell Me
I want to be fair here. My neurologist is a good doctor. He's been straight with me from the beginning and I trust him.
But there's a gap. A real one. And for three years I sat in his office and heard the same thing every time I brought up the fog and the fatigue.
"That's the disease, Robert. We're managing your motor symptoms well. The cognitive stuff is harder to treat. You need to adjust your expectations."
I adjusted my expectations. I got quieter. I stopped doing things I used to do. I accepted it.
I shouldn't have accepted it so fast. Not because my doctor was wrong, he wasn't, not exactly.
But because what he didn't know, what I didn't know, was that there was a reason for it beyond just "the disease." A specific reason. With a specific explanation.
And once I understood that explanation, things started to change.
The Part Nobody Explains
Here's what's actually happening.
Parkinson's damages the brain cells that produce dopamine. The medication replaces the dopamine.
That's why the tremors get better. I knew this. Most people with Parkinson's know this.
What I didn't know is that those same brain cells need a huge amount of energy just to do their job every single day. More energy than almost any other cells in the body.
And Parkinson's doesn't just break their ability to make dopamine. It breaks their ability to make energy first.
So even when the medication is working perfectly, even when the tremors are managed and the neurologist is satisfied and by every measure you look "stable", the brain is still running out of fuel. Every day.
And nothing in standard Parkinson's treatment was ever designed to fix that.
That's why the fog comes in. That's why the words go missing. That's why someone who was sharp their whole life starts going quiet.
It's not always the disease suddenly getting worse. Sometimes it's just the brain running out of what it needs to keep going, with nothing there to restore it.
More than half of all Parkinson's patients say the fatigue and brain fog are worse than the physical symptoms. I believe that. I've lived it.
The medication does what it does. It was never built to do this.
Why Everything I Tried Before Didn't Work
I want to explain this part carefully because it's the reason I was skeptical for so long.
In the two years before I found what I'm going to tell you about, I tried things.
B12. CoQ10. A few different supplements my daughter found and dropped off at the house without making a big deal about it, which I appreciated.
I took them. Nothing happened. I assumed that was just how it was.
Here's what I found out later. And this is the part that actually explains why those things didn't work.
The brain has a wall around it.
A protective barrier that filters out almost everything in the bloodstream before it gets in.
Medications are engineered specifically to cross it. Most supplements aren't. They circulate in your system. Some of them might do something for your body. But for the brain specifically, they never get through the door.
So it wasn't that natural things can't help. It's that most of them never got anywhere near where the problem actually is.
Once I understood that, the question changed. It wasn't "does this work." It was "can this actually get to the brain." Because if it can't get there, nothing else matters.
What I Found
I'm not a man who spends time on health forums.
But about eight months ago I found myself on one at two in the morning because I couldn't sleep and I was tired of accepting things.
Someone mentioned shilajit.
Specifically a compound in it called fulvic acid.
I did what I always do when I don't know something. I looked into it.
Not forums.
Research. Studies. The kind of thing I used to do at work when I needed to actually understand something, not just have a rough idea of it.
What I found was that fulvic acid is one of the very few natural compounds that actually crosses the blood brain barrier.
It gets directly into the brain. And once inside, it goes to work specifically on the energy problem, helping the cells that Parkinson's has been starving of fuel start producing energy again.
That's not a general wellness claim. That's a specific mechanism that addresses the exact gap nobody was addressing.
I also found something else that mattered to me specifically.
A plant called Kaunch Bean, used in traditional medicine for thousands of years, is a natural source of L-Dopa. The same active compound in my Parkinson's medication. Not a replacement.
Same compound. Different source. My body doesn't know the difference.
I'm an engineer. I like things that have a reason. This had a reason.
I told my neurologist what I was looking into. He didn't dismiss it.
He said the energy mechanism made sense to him. He had no concerns about me trying it alongside my current medication.
That was enough for me.
Why I Almost Didn't Try It
I'll be straight with you about the other thing that almost stopped me.
I already take eight pills every morning.
Some days my hands cooperate and some days they don't.
The idea of adding another capsule to that routine, fighting with a bottle cap, shaking something out into my palm, I didn't want to do it.
I'd probably skip it half the time and then it wouldn't work and I'd have another thing that didn't work.
The thing that got me was the format. Xara makes this as a gummy. Not a capsule.
A gummy that I actually look forward to taking. That sounds like a small thing. It isn't. A supplement you take every day works. A supplement that sits on the shelf because you dread it doesn't.
That was the practical thing. But it mattered.
What Changed
I want to be honest here the same way I've tried to be honest about everything else.
This didn't cure anything. The disease is still there. The medication still does what it does. My neurologist still sees me every six months and the chart still says what it says.
But something shifted around week four.
I noticed it first in the mornings.
I was getting more of those good hours, the ones where the fog lifts and I can think.
Before, I got maybe two on a good day. Now I was getting three, sometimes four. Not every day. But enough that I noticed.
I read a book. A whole one. First time in two years. I didn't mention it to anyone because I didn't want to make a thing of it. But I noticed.
My daughter called one evening and we talked for forty minutes. A real conversation.
I told a story and I got to the end of it. She didn't have to fill anything in for me. I don't think she noticed the difference. I noticed.
I'm still in the chair by two some afternoons. Some days are still hard. I'm not going to pretend otherwise.
But there are more good hours in the day than there were before.
For anyone living with this disease that is not a small thing. It is the whole thing.
Why I'm Writing This
I'm not a man who talks about himself.
I haven't told most people in my life how bad the last three years actually were.
My kids know some of it. My wife knows more. Nobody knows all of it because I never said it all out loud at once until right now.
I'm writing this because I know there are other men like me out there.
Men who are sitting in that chair by two in the afternoon saying they're fine. Men who stopped doing the things they used to do and told themselves that's just how it is now. Men who are watching their families watch them and working hard every day to not be a burden about it.
I'm not writing this to sell you anything.
I'm writing this because if I'd found this two years earlier I would have had two more years of better days. And that math is hard to sit with.
If you're reading this and you're a daughter, a son, a wife, and you recognized something in the first few paragraphs, I want you to know that he probably knows it too.
He just doesn't know how to say it.
And he's probably not going to bring it up because that's not how men like us are built.
But he'd take something that actually helped. Especially if it wasn't another pill.
See If This Could Work For Your Loved One →
What To Know If You Want To Try It
Xara is the one I use. Clinical grade fulvic acid combined with nine other ingredients, including Kaunch Bean for the natural L-Dopa support, and black pepper which helps everything else absorb better. Independently tested. Not available in stores.
They have a 60-day money back guarantee. If there's no difference after two months, every dollar back. No arguing about it.
That guarantee mattered to me. It should matter to you. A company that stands behind something like that is a company that knows what they're selling works.
Stock does run out. I've gone without it for a few weeks when that happened and noticed the difference. If you're thinking about it, don't wait on it.
I'd give it at least the full two months before deciding anything. The first two to three weeks are the adjustment period. What I described, the extra good hours, the clearer mornings, started showing up around week four. Give it the time.
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Comments
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Robert H. (author)
I've gotten more messages about this than I expected, and I want to respond to a few things people have asked. Yes, I ran this by my neurologist before starting. He had no concerns. He's not the type to just wave me off and he didn't. If your father or husband is on Carbidopa-Levodopa, this isn't a replacement for that. It works on a completely different problem. The medication handles the dopamine. This handles the energy. They're not competing.
Like · Reply · 👍52 · 4 min
Sandra K.
My father could have written every word of this. He was an electrician for forty years. Fixed everything. Never complained about anything in his life. He has Parkinson's and when I ask how he's doing he says fine and changes the subject. Reading this felt like being inside his head for the first time. Ordered tonight.
Like · Reply · 👍61 · 38 min
Thomas R.
Sandra same. My dad is a retired cop. Toughest man I know. He told me last month he was fine and I knew he wasn't but I didn't know how to push. This article is exactly what I needed to understand what's actually going on with him. The blood brain barrier part is what got me. I've been buying him supplements for two years and now I understand why none of them did anything.
Like · Reply · 👍44 · 29 min
Sandra K.
Thomas that's exactly it. It's not that nothing can help. It's that most things never even reached the right place. That one sentence changed everything for me.
Like · Reply · 👍31 · 22 min
Diane M.
I have to ask, my husband is on Carbidopa Levodopa and also takes a blood thinner. Anyone have experience with that combination?
Like · Reply · 👍18 · 1 hr
Carol P.
Diane I had the same question. I called his neurologist before ordering. She said there's no known issue between a natural supplement like this and his current medications. She actually said the fulvic acid research was real and the energy mechanism made sense to her. She was more open to it than I expected. Still, call the doctor first. Worth the five minutes.
Like · Reply · 👍37 · 52 min
Diane M.
Carol thank you. Calling his doctor tomorrow morning.
Like · Reply · 👍14 · 39 min
Patricia W.
My dad describes the fog as a fuzzy head he can't shake. He's been saying that for two years and every doctor has told him it's just the disease. Reading this man describe the exact same thing and then explain why it happens, I actually cried. Not because it's sad. Because it finally makes sense. Nobody has ever explained it to us before.
Like · Reply · 👍71 · 2 hr
Jennifer L.
Patricia I felt the same thing. My dad stopped calling me as much about a year ago. I thought he was just adjusting to things. Reading this I wonder if the real reason is the one this man described, not wanting to be noticed, not wanting to be a problem. I've been thinking about that paragraph all day.
Like · Reply · 👍49 · 1 hr
Patricia W.
Jennifer go call him. That's what I did after I read this. We talked for twenty minutes and it was the most he's said in months. I don't know if it was the conversation or the timing but I'm glad I called.
Like · Reply · 👍55 · 48 min
Anne T.
I'm a retired nurse. Worked in a neurology ward for nineteen years. The blood brain barrier explanation in this piece is accurate. It is the real reason most supplements have no effect on neurological symptoms, not because supplements can't work but because they can't get to where the problem is. I was skeptical about the product recommendation but I looked into the research on fulvic acid independently and the mechanism is documented. I ordered it for my husband three weeks ago. It's too early to say anything definitive. But he had a good morning yesterday and told me so unprompted. He hasn't done that in a long time.
Like · Reply · 👍83 · 3 hr
Margaret B.
Anne thank you for writing that. From someone with your background it carries a lot of weight. My husband has stopped telling me how his mornings are. I didn't realize that was a thing until I read that comment. Ordering today.
Like · Reply · 👍46 · 2 hr
Anne T.
Margaret I hope it helps him. We're not looking for miracles. We're looking for a few more good hours. Some days that's everything.
Like · Reply · 👍58 · 1 hr
Robert H. (author)
One more thing I want to say to everyone reading this.
If your dad is anything like me he already knows things aren't right. He's not confused about that. He's just decided that telling you won't help and will only make things harder for everyone.
He's wrong about that. But it's hard to convince a man like that.
What you can do is put something in front of him that might actually help. Not as a project. Not as a conversation. Just leave it somewhere and let him come to it. That's probably what will work.
That's what my daughter did. She didn't make it a thing. She just said she found something and thought I might want to look at it. And I did. And here we are.
Like · Reply · 👍41 · 1 hr
Disclosure: This article was created in partnership with Xara. The experience described reflects one individual's personal account. Results are not guaranteed and may vary. These statements have not been evaluated by the FDA. Xara Shilajit is not intended to diagnose, treat, cure, or prevent any disease. Always consult your healthcare provider before beginning any new supplement.
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