Nerves & Tremor support community

for every parkinsons survivor

I wrote my granddaughter's birthday card in my own handwriting for the first time in three years. Full-size letters. No shaking. My husband watched me do it from across the kitchen table and didn't say a word because he was afraid if he spoke he'd break whatever was happening. Twelve weeks ago my neurologist was preparing to increase my Levodopa for the fourth time. At my last appointment he ran my motor assessment three times because he did not believe the first two. My name is Caroline Moore. I am 71. Parkinson's disease for six years. Twelve weeks earlier I was sitting across from my neurologist and he was telling me my motor scores had declined again. Worst they had ever been. He said if the next assessment did not stabilize, he was adding a second medication on top of the Levodopa. A dopamine agonist. Possibly amantadine. His call. But something was getting added. I walked out of that office sick to my stomach. I did not want more pills. I did not want to add drugs that came with their own list of side effects I had watched other patients deal with in the waiting room. Hallucinations. Impulse control problems. Swelling. I had read what dopamine agonists do to some people. I had seen the faces of the wives sitting in those chairs. And more Levodopa scared me worse. My brother-in-law had gone on Levodopa at 62. By year five the dyskinesia was so bad his wife could not take him to church anymore. By year seven she was feeding him. He was gone at 69. Not dead. Gone. Sitting in a chair in the living room staring at nothing. I was already on Carbidopa-Levodopa. Three times a day. My neurologist had increased the dose twice in the last two years. Three pills a day and my symptoms were still getting worse. But underneath the pills my body was falling apart. My handwriting had shrunk so small my husband could not read my grocery lists anymore. I had been writing lists for him for forty-three years of marriage. Now he squinted at the paper and guessed. The afternoon crash had become my whole life. By 2 PM I was done. Folded into my recliner. Eyes closed. Not sleeping. Just unable to move. My granddaughter would come over after school and I would be in that chair and she would whisper to my husband, "Is Grammy sick?" Every single time. The brain fog had gotten so thick I could not follow a conversation past the third sentence. My husband would be telling me something and I would nod and smile and have no idea what he had just said. I stopped answering the phone because I was afraid I would lose the thread and whoever was calling would know something was wrong. The constipation. Every single day. Forty-five minutes in the bathroom every morning. I was reaching for laxatives the way I used to reach for my coffee. My husband found the bottles under the sink. He did not say anything. He did not need to. My sleep was gone. I was thrashing. Acting out dreams. Kicking my husband in the middle of the night. He started sleeping in the guest room. He said it was for his back. We both knew it was not for his back. My sense of smell had disappeared. I could not smell my own coffee. I could not smell the gardenias in the front yard that I had planted twenty years ago. I blamed it on allergies for six months before I admitted what it was. And I was exhausted. The kind of exhausted that does not go away with a night's sleep. The kind that lives in your bones. My body was falling apart from the inside out and my doctor's answer was more pills on top of the pills that were already not enough. I was not doing it. So I started trying things on my own. CoQ10. Two months. Nothing. Turmeric. Two months. Nothing. I tried magnesium from Amazon. Two different brands. Nothing. Vitamin D. Six weeks. Nothing happened. B12. Lion's mane. Alpha lipoic acid. Every supplement anyone in a Parkinson's Facebook group had recommended. I bought them all. Nothing moved my symptoms. Not one of them. I tried exercise classes specifically for Parkinson's. I walked every morning. I did the stretches. I followed every protocol the physical therapist gave me. My neurologist told me at the follow-up that my body was just progressing the way Parkinson's progresses. That the medication adjustments were the only tool he had left. I was 71 years old. I had been diagnosed for six years. I had tried everything I could find and nothing worked. My body was breaking down. My doctor wanted to add more drugs for the rest of my life. I was starting to think there was no way out. Then my daughter came home for a weekend. Her name is Jennifer. She is 44. Lives in Nashville with her husband and three kids. She calls me every Sunday. Jennifer is my heart. Has been since the day she was born. She had been watching me get worse for two years. She would ask me every Sunday how I was feeling and I would tell her the truth because I do not know how to be anything but honest with that girl. She drove down that weekend and she sat me down at my kitchen table with her laptop. "Mom. I have been reading. I want you to look at what I found." She had a folder of studies. Actual medical studies. Peer-reviewed. Journals I had never heard of but the names looked real. Brain. Lancet Neurology. Movement Disorders. Journal of Neurochemistry. She had been reading for weeks. "Mom, listen to me. Your medication is not fixing what is actually wrong with you. Let me explain what I learned." I owed her that much. I sat. She pulled up a diagram on her laptop. "Deep in your brain there is a tiny region called the substantia nigra. Its only job is to make dopamine. Dopamine is the chemical that tells your muscles to move, keeps your energy up, keeps your thinking clear, keeps you present. In Parkinson's, the cells in that region die. By the time the first tremor shows up, fifty to sixty percent of them are already gone. The shaking is not the beginning, Mom. It is the receipt." I nodded. I knew some of this. "Your medication, the Levodopa, replaces the dopamine those dying cells can no longer produce. That is the entire job. It calms the tremor. It helps the muscles move. And for a while it works. But here is the part nobody told you." She looked at me. "It does not protect a single one of those cells from dying. Not one. The cells keep dying at the same rate whether you take the medication or not. That is why the dose goes up every year. Every year more cells are gone. Every year you need more of the drug to get the same result. You are not treating the disease, Mom. You are renting a workaround. And the rent goes up every year." I set my tea down. "So what is actually killing the cells?" She pulled up another page. "Two things. And nobody is addressing either one." "The first is oxidative stress. Free radicals. Unstable molecules that attack your brain cells day after day, corroding them like rust eating through metal. Your substantia nigra is under constant attack. Every day the rust spreads. Every day more cells corrode. The Levodopa does nothing about the rust. It replaces the dopamine while the factory that makes the dopamine keeps rusting out." She pulled up another diagram. "The second is mineral depletion. Your brain runs on trace minerals. Magnesium. Zinc. Selenium. Dozens more. They are the raw materials your brain cells need to produce energy, defend themselves, stay alive. Parkinson's drains them. The medication drains them faster. And nobody is measuring any of it because mineral panels are not part of a standard Parkinson's workup. Your neurologist has never tested you for a single one." She was right. He never had. "Mom, this is what you have been feeling all along. Every symptom. The fatigue. The fog. The constipation. The crashing at 2 PM. The sleep problems. The smell going away. Every single one is downstream of the same two things. The rust corroding your brain cells and the minerals draining away while nobody looks." She looked at me like she was about to cry. "And your medication is not touching either one. Levodopa replaces what is already lost. It does not fight the rust. It does not replace the minerals. It holds one line on the chart, the tremor line, the one the neurologist watches. The other line, the one I watch every Sunday on the phone, your energy, your clarity, your presence, your you, that line has been falling the entire time and nothing you are taking is holding it up." I had never heard any of this from my neurologist. Not in six years. Not in four dose increases. Not in a single one of those twelve-minute appointments. "So what am I supposed to do?" She pulled up another page. This one had a picture of black resin seeping from a rock face high in the mountains. "There is a compound called fulvic acid. It is found in a substance called shilajit, a resin that seeps from rocks in the Himalayas. Ayurvedic healers used it for five thousand years specifically for a body breaking down from the inside." She showed me the research. "Mom, here is the part that matters. There is a wall around your brain called the blood-brain barrier. It is there to protect you. But it blocks almost everything out. That is why your turmeric never worked. It bounced off the wall. Your CoQ10 never arrived. Your magnesium, your B12, your lion's mane, almost none of it ever crossed that wall. You have been swallowing supplements for two years that never reached the part of you that is dying." I stared at her. "Fulvic acid is one of the only compounds on earth that crosses that wall. It carries over eighty trace minerals directly past the barrier and into the brain cells that are starving. It fights the free radicals doing the rust damage. And it fuels the mitochondria, the tiny engines inside every brain cell that produce all their energy. The engines Parkinson's is shutting down." She showed me the papers. Peer-reviewed research. Not Facebook posts. Real studies from real journals. She showed me research on fulvic acid crossing the blood-brain barrier. She showed me studies on its antioxidant capacity against the exact type of oxidative stress found in Parkinson's. She showed me papers on mitochondrial support in neurodegenerative disease. All pointing at the same thing. I was quiet for a long time. "Jennifer. I tried supplements. All of them. Nothing happened." She nodded. She was ready for that. "Mom, ninety percent of what is sold as shilajit is fake. It is one of the most counterfeited substances on earth. Most of it is powder in a capsule that was never real shilajit to begin with. And the real stuff, the actual Himalayan resin, gets destroyed by high-heat processing. The fulvic acid burns off before you ever open the bottle. You are paying for an empty promise." She kept going. "Even the ones that are real and processed correctly, most are just shilajit by itself. One ingredient. The research shows the minerals need cofactors to do their job inside the brain. CoQ10 to fuel the mitochondria. Ashwagandha to lower the cortisol that is keeping your nervous system in overdrive. The shilajit opens the door. The other ingredients walk through it." She wrote a name on a piece of paper and slid it across the table. "Xara 10-in-1 Shilajit Gummies. That is the only one I found that gets every piece of it right. Pure Himalayan shilajit, not the fake powder. Low-heat processed so the fulvic acid survives. Standardized to over eighty percent fulvic acid. Ten ingredients total, including CoQ10 and KSM-66 ashwagandha. Third-party tested with the dated lab report sitting on the product page so you can read it before you buy. No fillers. No heavy metals. Do not buy the Amazon knockoffs, Mom. There are fakes everywhere. Only order from the official site." I looked at the name on the paper. I looked at my daughter. I did not have another argument. I ordered that night. Not because I fully believed her. Because I loved her. Because she had spent weeks reading for me. Because she had driven five hours to sit at my kitchen table and show me the thing nobody in six years of neurology appointments had ever mentioned. They arrived the following Wednesday. One gummy every morning with breakfast alongside my Levodopa. I changed nothing else. That was the whole thing. Week one, the constipation stopped. After six years of laxatives every morning, I walked out of the bathroom in seven minutes. I stood in the hallway and blinked. I did not connect it to the gummy at first. I thought it was a fluke. It was not a fluke. It did not come back. Week two, my afternoons came back. That 2 PM wall that had been folding me into my recliner every single day just eased. On day ten my granddaughter came over after school and I was sitting up at the kitchen table. Not in the recliner. She looked at me and said, "Grammy, you are awake!" Like it was Christmas morning. I had to turn my head so she would not see my eyes. Week three, the fog cleared. I found my words in conversation. I followed an entire phone call with Jennifer on Sunday without losing the thread. I told her a story about something her father had done thirty years ago. I got the timing right. I got the laugh. She was quiet for a moment on the other end and then she said, "Mom. You sound like yourself." I had to hang up because I could not speak. Week four, I slept through the night. No thrashing. No kicking. No acting out dreams. My husband came back to our bed. He did not say why. He just showed up with his pillow. I rolled over and put my hand on his arm and we did not say anything. We did not need to. Week five, my handwriting started coming back. I picked up a pen to write a grocery list and the letters were larger than they had been in two years. I sat at the kitchen table staring at my own handwriting like it belonged to someone I used to know. Week six, I stood over my coffee and I could smell it. I had not smelled my own coffee in over a year. The gardenias were blooming in the front yard and I walked outside in my robe at 6 AM and stood there breathing them in and crying. My husband found me in the yard. He did not ask what was wrong. He just stood next to me and put his arm around my shoulders and breathed with me. Week eight, I cooked Sunday dinner. Chicken and dumplings. From scratch. My hands cooperated with the knife. My arms did not give out rolling the dough. I stood at that stove for two hours and I was not tired. Not once. My husband sat at the table and ate and he did not say anything for a long time. Then he looked at me and said, "There she is." I put my fork down and cried into my napkin and I did not care. Week ten, my home assessment exercises had improved across the board. The finger tapping was faster. The hand movements were smoother. My gait was steadier. I walked to the mailbox and back without a single freeze. I had not done that in eight months. Week twelve, my neurologist appointment. The same neurologist. The same office. The same twelve-minute slot. Except this time, when he ran my motor assessment, he stopped. He looked at the scores. He looked at me. He looked at the scores again. He ran the assessment a second time. Same scores. He ran it a third time. He had never done that in six years. Not once. He set his pen down. "Caroline. Your scores have improved. Across the board. In six years I have never seen your numbers move in this direction." He looked at me. "What are you doing?" I told him. Jennifer. The studies. The rust and the minerals. The blood-brain barrier. The wall that blocks everything. The fulvic acid that crosses it. The fake supplements on the shelf. Xara. He listened for thirty minutes without interrupting me. That was the longest he had ever spent in a room with me. In six years of twelve-minute appointments, he had never once sat and listened for thirty minutes. When I finished he sat there quiet for a minute. Then he said, "Send me the brand name. I want to look at the research." I sent him the link that afternoon. He was not adding a second medication anymore. He did not increase my Levodopa dose at that visit. First time in two years. He said in twenty-two years of neurology he had never seen a Parkinson's patient's assessment scores improve like that without a medication change. I am writing this because I know exactly what you are going through if you have Parkinson's. If you have Parkinson's disease and your symptoms have been getting worse for years despite the Levodopa, the exercise, the supplements, all of it, what is happening in your body is the same thing that was happening in mine. The neurons that make your dopamine are dying. Not because of low dopamine. Because of rust and starvation. Free radicals corroding them every day while the trace minerals they need to survive drain away and nobody measures them and nobody replaces them. Your medication replaces the dopamine that is already lost. That is all it does. It does not fight the rust. It does not replace the minerals. It does not fuel the mitochondria that keep your neurons alive. It holds one line on the chart while the line that actually feels like you disappearing keeps falling. That is why the dose goes up every year. That is why you do everything right and still get worse. That is why your wife watches you from across the kitchen and sees the change before you do. There is one compound that crosses the wall around your brain and delivers what your neurons have been starving for. Fulvic acid from pure Himalayan shilajit. The brand my daughter found me is called Xara 10-in-1 Shilajit Gummies. It is the only one I have come across that gets every piece of it right. Pure Himalayan shilajit, not the fake powder. Low-heat processed. Standardized to over eighty percent fulvic acid. Ten clinically studied ingredients including CoQ10 and KSM-66 ashwagandha. Third-party tested with the dated lab report right on the product page. No fillers. No heavy metals. One gummy every morning with breakfast alongside your medication. That is the whole thing. They stand behind it with a 60-day money-back guarantee. If you do not feel the difference in your energy, your clarity, and your presence, one email and every dollar comes back to you. A quick word on availability. They make it in small batches to keep it potent, which means they run out. When it is in stock, get it now. Right now it is up to 75% off. I am 71 years old. Twelve weeks ago my neurologist was preparing to add a second medication. At my last appointment he ran my assessment three times because he did not believe the first two. My handwriting is back to full size. I cook Sunday dinner from scratch. I smell my gardenias. I sleep through the night next to my husband. My granddaughter does not whisper "Is Grammy sick?" anymore. She runs through the front door and yells my name because she knows I will be standing up when she gets there. Jennifer gave me my life back. I want you to have yours. ~ Caroline Moore, age 71, Knoxville, Tennessee P.S. Jennifer is 44. She has been taking Xara herself for the last two months. She watched me go through six years of decline and she is not walking that road herself. She takes one gummy every morning for the brain energy and antioxidant protection. She calls it insurance. I call it my daughter being smarter than her old mama. P.P.S. Please do not stop your Levodopa the day Xara arrives at your door. Nobody should ever stop Parkinson's medication suddenly, and that conversation belongs to you and your neurologist. Add the gummy to your morning routine. Track how you feel. Let your doctor see the improvement at your next appointment. That is how my neurologist handled it with me and that is the safe way. Nobody in this story stopped a medication on their own. P.P.P.S. There are knockoffs flooding Amazon with the same looking jar and the same looking gummies. Inside is fake shilajit powder processed at high heat with the fulvic acid burned off before you ever open it. Some are contaminated with heavy metals. Most have no lab report you can actually read. The only place to get the real Xara is the official page. They sell out. When it is in stock, order. 👉 https://www.xarashilajit.com/products/xara-shilajit%C2%AE-pure-shilajit-wellness-formula