Personal Trainer to Parkinson’s warriors - move to your groove. Lawn-care for the soul - mow with the flow. Ball.

Dallas, TX
Joined April 2016
My thoughts may sound harsh. But people are suffering and dying without basic treatment for Parkinson’s. Where are our priorities?
What resonates with me most about this is the self-glorification above actually putting suffering patients first. The millions spent in your institution could actually be used to treat the levodopa-starving. It’s not just U of Florida. It’s pervasive.
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What resonates with me most about this is the self-glorification above actually putting suffering patients first. The millions spent in your institution could actually be used to treat the levodopa-starving. It’s not just U of Florida. It’s pervasive.
What resonates most with me about this work featured today in USA TODAY is how directly it connects two ideas I care deeply about: levodopa for all and food as medicine. Levodopa remains the most effective symptomatic treatment for Parkinson’s disease, yet access remains inadequate in many parts of the world; this UF/IFAS–Fixel collaboration asks whether agriculture can become part of the solution by harnessing velvet beans, which naturally produce unusually high levels of L-DOPA. Jeongim Kim and her team are studying how the plant makes and regulates L-DOPA; Kelly Balmant is sequencing the velvet bean genome and examining gene expression across cultivars; and the broader team including Adegbola Adesogan, Guodong David Liu, Eduardo Vallejos, Marjatta Eilitta along w/ our team at the Norman Fixel Institute is bringing agriculture, genetics, chemistry, engineering and Parkinson’s medicine together. They are even asking whether lessons from velvet beans could eventually increase naturally occurring L-DOPA in more familiar foods such as fava beans and soybeans. This is exactly what Food is Medicine should look like: not replacing proven Parkinson’s therapies, but using science, agriculture and innovation to explore scalable new ways to improve access and ultimately move us closer to the goal of levodopa for everyone who needs it, everywhere in the world. usatodayspecial-va.newsmemor… @UF @UF_IFAS
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A potential breakthrough for dystonia sufferers!
Replying to @purposeful_pd
Gavin, I have had dystonia from PD. Muscle contractions for the last 5 years - for the last 2 years they came 4x/week. I started taking Nuplazid (for PD hallucinations) 3 weeks ago and haven’t had one contraction! To go from daily to never is astounding! I want to tell everyone!
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“The brain’s brake on movement”. First time I’ve heard any expert describe Parkinson’s this way. I’ve been begging them to understand this. Pleading. Now finally, a casual reference to it as critical to overcome. How about that!
What resonates most with me about the exciting new Parkinson’s drug solengepras (CVN424) is that it represents a genuinely novel mechanism of action and a potential new addition to our treatment armamentarium. Rather than acting directly on dopamine, this once-daily medication blocks the GPR6 receptor in the brain’s indirect motor pathway, essentially easing the foot off the brain’s brake on movement. In the Phase 3 ARISE trial involving 341 people with Parkinson’s disease, the 150 mg dose reduced daily OFF time by 1.56 hours compared with 0.95 hours on placebo, a net benefit of approximately ~30-40 minutes per day, while also increasing good ON time without troublesome dyskinesia. These are modest but meaningful improvements, particularly for patients struggling with unpredictable motor fluctuations. The study also reported improvements in daily functioning, daytime sleepiness, and quality of life, although insomnia was more common (6.2% versus 0.9% with placebo). What excites me is not that this drug is a game changer for everyone, but that we are finally expanding beyond traditional dopamine-based approaches. Every additional treatment option matters, and even 30–40 minutes of better movement each day can make a difference for some people living with Parkinson’s. One important clarification: solengepras has not yet received FDA approval. These positive Phase 3 results are an encouraging step toward a potential regulatory submission, and we should celebrate the progress while awaiting full data and FDA review.
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The playful approach to Parkinson’s, whenever possible. Not denying the suck, but flipping the challenge right back allows for deep exploration of rigidity and movement - and inevitably laughter.
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I posted this in response to a recent MJ Fox Fnd webinar on gait. I could either be upset over lack of progress/passion or I could give us all something to smile about in hopes of considering fresh possibilities/approaches. It’s OK to enjoy our work. It’s fascinating phenomena.
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Don’t give up. What feels impossible is often not. Even if you have to let your emotions go. In fact, many things actually require letting your emotions go. As always, have fun.
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I hope you’re fortunate enough to have someone special in your life. You’re probably making each other better people. There’s no shame in needing to get better…
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One thing I’ve learned is that these transformations rarely happen alone. The presence of good human energy is required. People ❤️, inspire & relate to one another. Machines cannot. Efficiency? How about humanity? We have billions of humans under-invested/loved in-waiting.
Continually amazed by such phenomena. Generally, as Parkinson’s worsens, I get better at temporarily overcoming it. Much practice. Don’t know exactly what it’s revealing about the brain. But I like it. 😆
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Continually amazed by such phenomena. Generally, as Parkinson’s worsens, I get better at temporarily overcoming it. Much practice. Don’t know exactly what it’s revealing about the brain. But I like it. 😆
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I’ve been good about testing my limits. But the more I test, like anything, the better I will get at testing limits. Never feels like a test though. It’s experiment, flirt, compete. I can live with those Parkinson’s adjectives.🔥
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Is it time for a patient revolution, at least in Parkinson’s disease? I’d say there’s always time for that! Neuroscience has worked hard on our behalf. But have they worked smart? Have they listened, closely observed, given us priority over their own standing, spent prudently…
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Have they obtained satisfactory results? We still have countless people completely untreated for this savage condition! Although that’s as much on us as them. Not intended to indict anyone, but how long do we keep a broken system? Revolution must come from within.
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We’ve been conditioned that having neurodegenerative disease means tomorrow can only be worse than today. Perhaps true, if you are the disease. I am not. Irrespective of Parkinson’s, I choose to be better today than yesterday. PD impacts me - but my will shall always be free.
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Gavin Mogan retweeted
Replying to @AutonomicGC
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You can’t be beaten if you keep getting back up. You think Chumbawamba gonna lead us astray? Ain’t no way! 🤣
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This sounds great. How about you start this privilege of the affluent once any real effort is made to treat people who get no treatment at all for Parkinson’s. Many people get none! Do something about that then maybe start patting yourself on the back. We’re all full of shit.
Today we launch the 14th annual DBS Think Tank at UF Health and the Fixel Institute. What better way to start than by looking back at what we learned last year? DBS is deep brain stimulation, a therapy that uses implanted electrodes to modulate specific brain circuits. Chance Fleeting and colleagues captured the discussions from last year’s DBS Think Tank XIII in a newly published proceedings paper in Frontiers in Human Neuroscience. The meeting brought together clinicians, scientists, engineers, industry, ethicists and folks living w/ neuromodulation devices to debate where DBS is headed. Key points: - DBS is rapidly moving from simply asking where to stimulate toward understanding who to stimulate, when to stimulate and how to personalize therapy using brain networks and biomarkers. - Adaptive and activity-dependent DBS may allow stimulation to change in real time based on walking, symptoms and brain state, opening new possibilities for gait and other difficult-to-treat symptoms. - The future is bigger than technology. Ethics, access, post-trial responsibility, patient-centered outcomes, genetics and partnerships between academia and industry must evolve alongside the devices. My take: The DBS Think Tank has never been about everyone agreeing. It is about putting smart and passionate folks in the same room, debating what we know, challenging what we think we know and identifying what we need to do next. As we launch year 14 today, the field is shifting from stimulating a spot in the brain toward understanding and modulating circuits and networks in the right person at the right time. Here are 5 points that resonated w/ me: 1- The future of DBS will be increasingly personalized. 2- Closed-loop and adaptive systems are moving from concept toward clinical reality. 3- Brain networks may matter as much as traditional anatomical targets. 4- Innovation must be paired w/ access, ethics and responsibility to the folks receiving these devices. 5- The most important advances will likely emerge when persons w/disease, clinicians, neuroscientists, engineers and industry challenge each other and work together. Today we begin the next conversation. DBS Think Tank XIV is officially underway. Planning to attend the 2026 DBS Think Tank virtually? Open to everyone and especially persons w/ disease. Zoom registration is now open! Register today to join us online for Navigating New Frontiers: Emerging Neural Circuits in Modern Neuromodulation, Sept. 16-18. View the agenda & register: fixel.ufhealth.org/think-tan… @DBSThinkTank
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Neuroscientists publish papers. I shoot videos. I’m just out here having fun. I like to think I make you think. 🤣 I like to think I have empowered some of you.
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