Parkinson's Health Insider

What your Parkinson's meds are missing

Behind the gates of one retirement community, Parkinson's patients with the same tremors, brain fog, and fatigue as everyone else are still sharp, still steady, and still awake past noon, and nobody outside those gates knows what they're taking. I didn't either. Until I walked through those gates to visit my mother and stumbled right into it. I wasn't looking for anything. I wasn't researching supplements. I wasn't in some Facebook group. I was a son flying down to Florida every couple of months, bracing himself every time to see how much more of his mom Parkinson's had taken since the last trip. And then one visit, it hadn't taken anything. It had given some back. This is how I found out why. And why I'm now telling everyone I know with a parent who has Parkinson's what my mother and her neighbors have been quietly passing around behind those gates for over a year. It's long. Please read all of it. If your mom or dad or husband or wife has Parkinson's, you're going to recognize every single part. My name is Dave. I'm 49. I live in Atlanta with my wife and our three kids. I sell commercial HVAC systems, which is about as exciting as it sounds. My mother's name is Joan. She's 76. Mom was a nurse for 35 years. Labor and delivery at a hospital in Dayton, Ohio. She delivered, by her count, north of 4,000 babies. She was the kind of nurse the doctors were scared of. Sharp, fast, never missed a thing. She could do the Sunday crossword in 20 minutes, in pen, while watching Jeopardy and yelling out the answers before the contestants. When my dad passed six years ago, she sold the house in Dayton and moved into a gated 55-and-over community on the Gulf side of Florida. Little stucco houses around a clubhouse and a pool. Bingo on Wednesdays. Bridge on Tuesdays. Golf carts everywhere. A guard at the gate named Luis who knows everybody's grandkids by sight. She loved it. A year after she moved in, she was diagnosed with Parkinson's. Her neurologist started her on Carbidopa-Levodopa. The tremor in her right hand calmed down. The doctor said she was doing well. "Well controlled." For a while, it was fine. Then every visit, there was a little less of her. I'd fly down every two or three months. And every time, driving from the airport to those gates, I'd make a list in my head. What's going to be different this time. Visit after visit, the list got longer. First, the tremor crept back. The meds had knocked it down, but by year two it was sneaking back in the evenings. She'd hold her teacup with both hands. At dinner she'd brace her fork against the plate to keep it steady. She stopped wearing the earrings with the little clasps because she couldn't work them anymore. Then the crossword. She'd always done it in pen. One visit I noticed she'd switched to pencil. A few visits later she wasn't doing it at all. It sat on the kitchen table, half finished. She said, "My letters are getting so small, honey. I can't fit them in the boxes." Her handwriting had shrunk to tiny little scratches. Then her words. A woman who used to rattle off medication doses without thinking would stop mid-sentence and just hang there. "Hand me the… the… oh, you know. The thing." She'd point at the remote. She'd get flustered. "Never mind, I'll get it." Then the fatigue. Nurse's hours her whole life. Up before the sun. By year three, she was asleep in her recliner by noon every time I visited. I'd sit on her couch in the afternoon, watching her sleep with her mouth open and the TV going, and think, I flew 500 miles for this. Then the freezing. She'd get up to go to the kitchen and her feet would stop dead at the doorway. Hand on the frame. Three seconds. Five. The first time, I jumped up thinking she was falling. She waved me off. "It's the Parkinson's, David. It just does that." And then the one that got me. Our kids. We brought all three of them down for Thanksgiving two years ago. Our youngest, Emma, was six. She ran into Grandma's kitchen and yelled, "Grandma!" And my mother, who delivered 4,000 babies and never once forgot a mother's name, looked at my daughter, smiled, and said, "Hi… sweetheart." Not Emma. Sweetheart. She couldn't find it. Later that night I found her sitting on the edge of her bed with her hands in her lap. She said, "I couldn't remember her name, David. My own granddaughter." I told her it happens to everybody. We both knew it didn't. Every visit to the neurologist, the same thing. "Part of the progression." A little more on the dose. "Well controlled." I'd fly back to Atlanta and sit in my car in the airport parking garage for a while before I could drive home. That was three years. You probably know that list. You might be living it right now. Then last spring I flew down for Mother's Day. I pulled up to the gate around 1:30 in the afternoon. Luis waved me through and said something I didn't think much of at the time. "Your mom's out back with the girls. She's been in a good mood lately. Lot of folks around here have." I figured he was being polite. I let myself into Mom's house. It was empty. I stood in the living room with my bag on my shoulder and felt my stomach drop. I called her cell. No answer. Then I heard laughing from out back. I looked through the sliding glass door. My mother was at the patio table with three women from the neighborhood, playing cards. At 1:30 in the afternoon. Head back. Laughing. I slid the door open. She looked up. "Oh! David! You're early. Girls, this is my son, the one in Atlanta." Then she went around the table and introduced every one of them. "This is Bev, this is Marion, and this is Dot." Every name. Right away. No hesitation. I sat down on the patio step and watched them finish the hand. Mom was keeping score on a notepad. In pen. And I could read it. She was holding her cards in one hand. Her other hand was on the table. I watched it. It had a little tremor, the way it always does. But she wasn't hiding it under the table anymore. And it didn't seem to be bothering her. That was the first thing I stumbled on. The second happened an hour later. The ladies went home. Mom went to put the kettle on. And she walked through the kitchen doorway without stopping. Didn't touch the frame. Just walked through. I didn't say anything. I was too scared I'd jinx it. I went to grab a glass from the cupboard next to the coffee maker, and there was a jar on the counter I'd never seen before. Black and gold. Xara 10-in-1 Shilajit Gummies. I held it up. "Mom, what's this?" She got a look on her face. The one she used to get when I was 15 and she'd caught me in a lie. Except this time it was her. "Oh, that. Well." She sat down at the kitchen table. "Sit down, David. I'll tell you. But don't make a big deal about it." And my mother told me about Walt. Walt lives three houses down. Retired Navy. 78. He's had Parkinson's about eight years. When Mom moved in, Walt was the life of the clubhouse. By the time she was diagnosed, he'd stopped coming. His wife Bev said he slept most of the day. He'd quit playing cards because his hands shook too bad to hold them. He barely talked. "He was fading, honey," Mom said. "We all saw it. Bev would come to bridge by herself looking so tired." Then about a year and a half ago, Bev came to bridge on a Tuesday and said Walt had been awake all afternoon the day before. On the porch. Reading the paper. Talking to her. The ladies figured it was a good day. Two weeks later, Walt walked into the clubhouse for the first time in a year. Sat down at the card table. Held his cards. His hands still shook some, but he held them. And he told a story about riding out a storm on a destroyer in 1968 that had the whole table in stitches. "And David, I'm a nurse," Mom said. "I've been around sick people my whole life. I know what a good day looks like. That wasn't a good day. That was something different." So she asked Bev right there at the card table. "What are you doing with Walt?" Bev reached into her purse and pulled out a jar. She'd found it online. A shilajit gummy. She'd been giving Walt one every morning with his medication. She'd taken the ingredient list to his neurologist first, and he'd said it was fine. Nothing else changed. "And I looked at that jar," Mom said, "and I thought, well, Joan, you've tried everything else." She had. Turmeric. Fish oil. Some brain supplement she saw on TV. Nothing had done a thing. She ordered it that night. Took the ingredient list to her own neurologist the next week, because she's a nurse and she wasn't about to take anything without a doctor seeing it. He looked it over and said it was fine alongside her medication. And she started one every morning with her coffee. "The first thing I noticed was the afternoons," she said. "About two weeks in. I'd look at the clock and it'd be 3 and I'd still be up. Doing things. I hadn't been awake at 3 in two years." "Then the fog started lifting. I could find my words again. Not every time, but more. I started the crossword again. Pencil first. Then one morning I just picked up a pen." "And my evenings got better. My hands aren't perfect, David. But I'm not bracing my fork against the plate anymore." Then she told me the part that floored me. "So I told Marion," she said. "Marion's husband Fred has Parkinson's too. Then Marion told Dot. Dot's sister has it. Then somebody told the Hendersons. And the Kowalskis. And Ruth from the pool." "How many?" She counted on her fingers. "Behind these gates? I think there are nine of us with Parkinson's. Seven of us are taking it now. Maybe eight. I think Gerald just started." Seven out of nine. Behind one set of gates in Florida. All on the same Carbidopa-Levodopa as everybody else. All seeing different neurologists. And all taking the same gummy every morning that not one of those neurologists had ever brought up. "We don't talk about it outside the neighborhood," she said. "People get funny about supplements. Everyone's worried their doctor will think they're being silly. So it's just our thing. The jar club, Bev calls it." The jar club. Luis at the gate. "Lot of folks around here have been in a good mood lately." I sat at my mother's kitchen table and didn't know what to say. So I did what I do when a customer tells me their new system is working great. I went and checked. That night, after Mom went to bed, I sat on her couch with my laptop and went through everything. First, what was in it. Pure Himalayan shilajit, plus nine other ingredients. KSM-66 ashwagandha, which is studied for stress and sleep. Black pepper extract to help absorption. And kaunch bean. Kaunch bean naturally contains L-dopa, the same thing that's in Mom's medication. That's why Bev, then Mom, then every other member of the jar club took the ingredient list to their neurologists first. That's not optional. All of them got the okay. Second, the lab report. It's right on the product page. Third-party tested, dated, checked for heavy metals, which is a real problem with cheap shilajit. No fillers. I looked up the lab. It's real. Third, why this would do anything when everything else Mom tried hadn't. Here's the simplest way I can explain what I found. The medication does one job. It replaces the dopamine the brain can't make enough of anymore. That's why Mom's tremor calmed down at first. That's what her neurologist measures. By that measure, she was "well controlled." But the brain doesn't run on dopamine alone. It runs on energy. Every word you reach for. Every hour you stay awake past noon. Every time you pick up a pen and write your granddaughter's name. A lot of that energy depends on minerals. Magnesium, zinc, selenium, and dozens of trace minerals most of us never think about. In a lot of people with Parkinson's, that side runs low. And nobody checks it. In five years, not one of Mom's doctors ever tested her for a single mineral. I started thinking of it as two tanks. The medication keeps one tank full. The dopamine. Nobody was touching the other one. The energy tank. The one that keeps you sharp and steady and awake and in the conversation. That's where shilajit comes in. It's a dark resin that seeps out of rock high in the Himalayas. People there have used it for centuries for strength and mental sharpness. It's naturally loaded with trace minerals, and it's rich in fulvic acid, which helps carry those minerals into your cells so your body can actually use them. It's what's in the jar on my mother's counter. And on Bev's counter. And Marion's. And the Hendersons'. Behind those gates. I flew home that week, and for the first time in three years, I didn't sit in the parking garage. Then the visits started changing. July. Mom picked me up at the airport. She drove. She hadn't driven to the airport in two years. On the way back, she told me every piece of neighborhood gossip in exhausting detail, and she didn't lose a single name. Luis waved us through the gate and gave me a thumbs up. September. I brought the kids. Emma, who's eight now, ran into the kitchen yelling, "Grandma!" And my mother turned from the stove and said, "Emma Grace! Come here, let me look at you. You got tall." Emma Grace. Middle name too. My wife grabbed my arm so hard she left a mark. Thanksgiving. The whole jar club came over for pie on Friday afternoon. Walt told the destroyer story again. Bev rolled her eyes. Fred and Marion argued about football. Mom did the Friday crossword at the kitchen table while everyone talked around her. In pen. Coffee cup in one hand. She finished before the pie was gone. At one point I looked around that kitchen. Seven people with Parkinson's. Every one of them awake at 3pm. Talking. Laughing. Eating pie. Telling stories. I went out on the patio and just stood there a while. February. Mom's neurologist appointment was the day after I landed, so I went with her. The doctor tapped her fingers, watched her walk down the hall, asked how she was doing. She told him about the crossword and the card games and Emma Grace. He looked at her chart. Then at her for a long moment. And he said, "Well, Joan, whatever you're doing, keep doing it." In the car, she said, "I told you." Now let me be honest with you, because Mom would kill me if I wasn't. My mother still has Parkinson's. She still takes every dose of her medication, right on schedule. Her tremor is still there, especially at night. She still freezes in a doorway once in a while. She still naps sometimes, like any 76-year-old. Walt's hands still shake. Fred still uses a cane. Nobody behind those gates is cured. The jar club will tell you that themselves. Nothing cures Parkinson's. But they're awake. They're sharp. They're present. They're doing crosswords in pen. They're playing cards on Tuesdays. They're naming their grandkids without hesitation. And every one of them started with the same two things. The medication their neurologist gave them, and the gummy their neighbor told them about. That's why I'm writing this. Because I almost didn't find out. If I'd come an hour later. If Mom had put the jar in the cupboard. If I hadn't grabbed a glass from that one shelf. I'd still be sitting in the airport parking garage after every visit, wondering how much more I'd lose next time. And I think about everybody out there with a parent or husband or wife with Parkinson's who doesn't live behind those gates. Who doesn't have a Walt three houses down. Who doesn't have a Bev at the card table. So consider this your invitation past the gate. If someone you love has Parkinson's and you're watching them fade a little more every visit, here's exactly what my mother and her neighbors did. They kept taking their medication. Every dose. That's not negotiable. They took the ingredient list to their neurologist first. Every one of them. And they added one gummy every morning with their coffee. Xara 10-in-1 Shilajit Gummies. It's one gummy after breakfast, with no extra pills. It's pure Himalayan shilajit plus nine supporting ingredients, including KSM-66 ashwagandha. It's third-party tested, with the dated lab report right on the product page. There are no fillers and no heavy metals. It comes with a 60-day money-back guarantee. If you don't see a difference in energy, clarity, and how present they are, you get every penny back. Right now it's buy 2, get 1 free. Mom told me to tell you to get the 3. "Most of us didn't see the big changes until after the first month," she said. "You don't want to run out right when it starts working." https://www.xarashilajit.com/products/xara-shilajit%C2%AE-pure-shilajit-wellness-formula P.S. I showed Mom this before I posted it. She read it at her kitchen table in her reading glasses, with a pen in her hand, correcting my grammar in the margins like she always does. At the bottom of the page, in handwriting I could actually read, she wrote: "Take it to your doctor first. Then welcome to the club." That's from her. P.P.S. If you know someone flying in every couple of months to visit a parent with Parkinson's and sitting in the airport parking garage afterward, send them this. I know that feeling. I don't have it anymore. ~ Dave, 49, Atlanta, GA