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YOPN BLOG & INSIGHTS

What's the buzz at YOPN?  We're sharing thoughts, insights and information on a variety of topics relevant to YOPD.  We'll cover a wide range of topics, perspectives, and posts from our own team as well as from guest bloggers who care about the YOPD community.  Whether you've been diagnosed personally or have a friend or loved who is living with YOPD, you're sure to find a conversation starter, idea or helpful comment in one of our posts!

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  • 12/17/2024 12:24 PM | Anonymous

    Each year, the International Parkinson and Movement Disorder Society (MDS) hosts its Congress, which brings together medical professionals from all over the world who are focused on researching and treating Parkinson’s disease and other movement disorders. This year, the 2024 MDS Congress took place in Philadelphia, PA, from September 27 to October 1. Below, some key research updates presented at the event, particularly those related to clinical trials in Parkinson’s. 

    Trial on Parkinson’s and Cognition: A Phase 2 Randomized Clinical Trial of TAK-071, an Acetylcholine M1 Receptor Positive Allosteric Modulator, in Parkinson Disease with Cognitive Impairment.  

    • TAK-071 is a molecule designed to boost the activity of muscarinic receptors, which interact with acetylcholine, a brain chemical crucial for motor control. Acetylcholine also plays an essential role in cognition and balance.  
    • This phase 2 trial looked at whether TAK-071 could improve both walking and cognition in people with Parkinson’s who have cognitive impairments. While the drug did not improve walking, it did show promise in improving cognitive function and was generally safe and well-tolerated. 
    • Key Takeaway: TAK-071 could potentially be useful in improving cognitive function in people with Parkinson’s, though it didn’t have an effect on walking. 

    Trial on a New Carbidopa/Levodopa Formulation: A Post Hoc Efficacy Analysis of Phase 3 Trials of Continuous Subcutaneous Foslevodopa/Foscarbidopa in Patients with Parkinson’s Disease.  

    • A new subcutaneous (under the skin) formulation of carbidopa/levodopa, recently approved by the FDA, was analyzed in this abstract. Data from two clinical trials, involving a total of 385 people with Parkinson’s, were combined. Results showed that this new treatment improved motor function, daily activities, sleep, and quality of life compared to the standard oral version of carbidopa/levodopa. 
    • Key Takeaway: This newly FDA-approved subcutaneous carbidopa/levodopa formulation offers a new treatment option for people with Parkinson’s experiencing fluctuations between "ON" and "OFF" time, and it may improve motor control, daily activities, and sleep compared to the oral version. 

    Trial on Adaptive Deep Brain Stimulation (DBS): Adaptive vs Conventional Chronic Deep Brain Stimulation: Results from a Randomized Pilot Trial in Parkinson’s Disease.  

    • Deep Brain Stimulation (DBS) is a common treatment for Parkinson’s, where electrical impulses are delivered to certain areas of the brain. Adaptive DBS, a new version of this technology, can sense the brain’s electrical activity and adjust the stimulation in real-time to improve its effectiveness. In this study, 15 people with Parkinson’s were given both adaptive and conventional DBS to compare their experiences. Although motor scores were similar, 90% of patients preferred the adaptive DBS. 
    • Key Takeaway: Patients preferred adaptive DBS over conventional DBS, and this could become a more personalized treatment option in the future. 

    Trial on Antibodies to Slow Parkinson’s Progression: Effect of Prasinezumab on Parkinson’s Disease Motor Progression in a Long-term Open-label Extension of the PASADENA Trial.  

    • People with Parkinson’s have clumps of a protein called alpha-synuclein in their brains, and these clumps are thought to contribute to the disease. Prasinezumab is an antibody designed to bind to alpha-synuclein and help remove it. The drug was tested in the PASADENA trial with people who had newly diagnosed Parkinson’s and mild symptoms. Although the trial didn’t meet its main goals, it showed some improvements in motor function. A long-term extension of the trial further showed that patients receiving the antibody had slower progression of motor symptoms compared to a control group. 
    • Key Takeaway: Prasinezumab, an antibody against alpha-synuclein, could slow the progression of motor symptoms in Parkinson’s disease. 

    Trial on a Cell-based Therapy for Parkinson’s Disease: NouvNeu001, A Phase 1 Stage Chemically Induced Human Dopaminergic Progenitor Cell Therapy for the Treatment of Mid- to Late-stage Parkinson’s Disease (Cai, M et al.) 

  • 12/17/2024 12:18 PM | Anonymous

    In my new book, Voices of Resilience: Conversations with Parkinson's Disease Warriors, Caregivers, and Advocates, I take readers on journeys of over 200 other advocates, PwP (People with Parkinson's), caregivers, and many who inspire me daily. 

    When my mother passed away on January 1, 2020, due to Parkinson's disease, I set out to advocate in her memory for a cure for all those battling PD today and their families. Two years later, I realized it is no longer only about my mother and me, but how critical it is to be a family around the world together for awareness and hope for a cure. That is when I embarked on my mission to share other incredible journeys of people around the globe. 

    I have interviewed over 1,000 individuals for Parkinson's awareness and am still going. All are free at togetherforsharon.com, and the book is now available in color through the website for order. It focuses on specific journeys and will be a several-book series. 

    Some interviews include an up-close and personal discussion on advocacy and awareness with: 

    • Dan O'Brien, DOB Parkinson's Charity 
    • Mark Milow, Parkinson's Advocate 
    • Philip Ommen, Parkinson's Positivity 
    • Ali Blevins, Poets with Parkinson's 
    • Esther Labib-Kiyarash, On Advocacy 
    • Rachelle Smith-Stallman, Dance Beyond Parkinson's 
    • Neil Russell, Ran From London to Barcelona for PD Awareness 
    • Melissa Marie Livingston, Young Onset Parkinson's Disease 
    • Megan Taye, YOPD Love Letters 

    Today, the only journey that breaks my heart is the one I am unaware of. So together, let's share these journeys and ensure no one ever feels alone in this fight because I can fight… I will be right by your side until the cure is at all our doorsteps globally. 

    Stand together, keep fighting, and never give up! 

    All proceeds go directly back to the PD community and organizations listed at togetherforsharon.com

    Voices of Resilience: Conversations with Parkinson's Disease Warriors, Caregivers, and Advocates – Book I 
    https://www.togetherforsharon.com/my-book-voices-of-resilience/ 

    Voices of Resilience Book II 
    https://www.togetherforsharon.com/book-voices-of-resilience-ii/ 


  • 12/17/2024 12:13 PM | Anonymous

    To be clear, before last year, I had no experience with Improv. Like most, I grew up watching the early models, never dreaming I would be capable of doing such a thing. 

    Now, I don't ever want to be without it. Learning how to say "yes, and" to what life has to offer is giving me back some of the 'people skills' Parkinson's Disease (PD) robbed me of. It is breaking me out of social isolation and re-teaching me how to get in touch with the 'people person' I used to be. 

    Socializing became awkward with PD. Making connections with a team of supportive people while learning Improv games is the best medicine I've found yet. The more I learned, the less I focused on the negative aspects of my symptoms. I've learned to roll with whatever body part is acting up that day. Yes, and I take all those skills with me. I collect the songs, smiles, and lessons. I keep them close in my bag of tricks. I take them out when paranoia and frustration sneak in. Those thoughts of uncertainty often happen around pill time—an experience I call dosage anxiety—periods when my internal tremor can cause severe self-doubt and worry about the unknown. 

    The lessons we learn in Jam for Joy are specifically designed to help with these 'off' times. We work hard and play hard. We share our frustrations and lean into each other's unknowns. We learn and grow together within the safe space we co-create at will, readjusting the games as needed. We support each other with smiles and laughs and wish each other well until we meet again. 

    All this has made a significant difference in my symptoms. For several years, my most obvious symptom was jaw and mouth tremors, causing the all-too-common symptom of drooling at the most inopportune times. Little by little, over the past 12 months, that annoying chattering in my head is gone. Yes, and I suffered from that for the better part of 5 years. 

    My overall symptoms have improved in part because of the constant reminder of 'Yes, And' instead of 'Yes, but'. 'Yes, and' I can change how I look at that long walk, that life challenge, that new task I've never tried before. Attitude is everything. 'Yes, And' definitely gives me a head start on pushing past the obstacles; 'Yes, but' would have prevented me from ever trying. 

    Most of all, I'm learning to accept the things I can't change. Total acceptance allows me to be myself with no regrets. Letting my hair down with a great team of people who are all there for the same reason: to have fun in a place we all belong. Cultivating hope while practicing to live in the present, with full knowledge that I'm no longer alone. Along with the reassurance that in a few short days, our group will meet, play, laugh, and sometimes cry again. 

    Another miracle I've experienced: For at least 5 years, I wasn't able to type more than a couple of paragraphs at a time without extreme pain. It took a couple of months of fumbling and bumbling during my first round of the Cinema Therapy class last fall. Little by little, Dianne Brambell, Michael Quaglia, and Robert Cochrane witnessed my typing improve. Following my bliss, just as Joseph Campbell suggested, made that much of an impact on my life and my symptoms. Turning me into walking, talking, and typing proof of how the magical power of improv has changed me for the better. 

    Please check out www.yesandexercise.org and learn how the words 'Yes, And' can help you change your life too. 

  • 12/17/2024 12:05 PM | Anonymous

    Our incredible PD Team from St. Cyprian High in Uganda is heading home for their two-month Christmas break, and I couldn’t be prouder of them. These students live on campus for months, often only seeing their families during extended breaks. It's truly inspiring to see how excited they are to share what they've learned about martial arts and Parkinson's with their loved ones back home. 

    Today, they celebrated their year-long journey to Yellow Belt in ITF Tang Soo Do and their official status as Parkinson's advocates for Uganda with an all-American pool party! The dedication and passion these students have shown is admirable. They've worked hard in their training (far longer than any yellow belts normally would) and embraced the responsibility of raising awareness about Parkinson's in their community. Their commitment is a testament to their strength of character, resilience, and the impact they will have on the stigma of PD in Uganda. 
     
    As they go home to their families, I am grateful for each of them. Through this journey, they've shown me what it truly means to persevere and uplift others. In a year full of personal challenges for me, they have been a Godsend, a redirecting light through each stumble, and I am so thankful for the spirit and dedication they bring to my life. 
     
    The progression of this project, from a small conversation between friends so many years ago about how to impact the culture surrounding PD in Uganda through youth martial arts training to a standing program primed to continue impacting for years to come, is humbling. I’m so thankful for all of the help I’ve received along the way. Specifically, Darbe Schlosser (Motorvation Foundation), Jim Kroeger (Main Project Funder), Martin Magumbe (St. Cyprian High), Kabugo Hannington (Parkinson's Si Buko Uganda), Jerry Dollinger Jr. (Flushing Karate), and the International Tang Soo Do Federation. 
     
    The next step in this project is to expand into other schools, utilizing the continued training and leadership skills of these students as a venue for broader cultural change within Uganda. 
     
    Connecting people and providing a transformative shared experience through the power of martial arts is what it's all about! What a beautiful journey this is turning into. Stay tuned! 
     
    To learn more, visit MotorvationUSA.com/project-uganda 
  • 12/17/2024 12:00 PM | Anonymous

    I had the gift and honor of recently being the keynote and emcee of PMD Alliance's All In Summit in Austin, TX. The theme was support—and within that, two fascinating ideas: 1) rebranding Parkinson's disease to help us get what we need to live our best and 2) learning to accept the current base reality of PD. Part of that reality is accepting there currently is no cure. Another part is remembering that the decisions we make every day—physically, socially, emotionally, and spiritually—deeply affect how well we will live with PD. That's acceptance. 

    Acceptance is a journey, not a destination. For those living with Parkinson's disease (PD), it is a path, at times, littered with loss, adjustment, and unexpected growth. For many, it begins in the shadow of denial, where trembling hands or slowed movements are first ignored, rationalized, or hidden. But denial, while momentarily comforting, is a trap. It isolates, creates shame, and blocks the path to the profound gift acceptance offers: freedom. 

    True acceptance is not resignation. It is an act of courage—a declaration that life, though altered, can still be exciting, creative, and profoundly worth living. It empowers individuals with PD to step forward, not defined solely by their diagnosis but by their humanity. Acceptance reclaims identity from the grip of stigma and fear, opening doors to connection, joy, and purpose. 

    Through the lens of my work with the PD community, I've witnessed the transformative power of storytelling and improvisation. These tools, deeply rooted in our neurological wiring, invite participants to embrace unpredictability, connect authentically, and celebrate their strengths. They bridge the gap between external perceptions of PD as solely a "movement disorder" and the internal struggles of those living with it—shame, frustration, and the fear of not belonging. 

    Acceptance doesn't erase the challenges of PD, but it illuminates a path forward. It transforms isolation into belonging and despair into possibility. In a world where denial often dominates, embracing acceptance fosters resilience—not just for those with PD, but for everyone. Together, we thrive when we see one another fully, when we accept what is, and when we act with compassion to create what can be. 

    Let us all accept the gifts of support and celebrate the stories that bring us together. One way to do that is at our Christmas Movie Hero's Journey every Friday through the holiday season. It's a free, fun way to explore the stories that help shape this season. ALL are welcome. Register and find out more here: https://www.yesandexercise.org/christmas

  • 12/17/2024 11:55 AM | Anonymous

    It's hard enough to have Parkinson's. We deal with tremors, stiffness and rigidity, depression, and anxiety, and then we can add things like dementia, hallucinations, and delusions. As if we didn't have enough to deal with! Hallucinations and delusions are scary things to think about. 

    You are more likely to experience these things the longer you have PD, have dementia or memory problems, and some medications can cause them. A hallucination is when a person sees, hears, feels, smells, and even tastes something that isn't real or that other people aren't experiencing. (Parkinson's UK) 

    About 20-40% of people with PD will have hallucinations or delusions. They can also experience illusions—seeing things that are there but not as they appear. An example of this is clothes in a closet looking like people. There is also something called delirium. This is reversible, and it involves attention and concentration. Both or one of these are altered and can lead to changes in behavior and thinking. It usually develops quickly and resolves after treating the underlying condition, like an infection. (Parkinson's Foundation) 

    A delusion is a strongly held thought or belief that isn't based on evidence. They can include paranoia, jealousy, grandiose beliefs, and wrongly identifying places and objects. (Parkinson's UK) 

    We've already established that experiencing a hallucination or delusion is genuinely frightening. You can experience several types of hallucinations. Auditory and visual hallucinations can be the scariest of them. Auditory hallucinations are things you hear, but other people around you cannot. These can be voices, music, doors opening and closing, etc. Visual hallucinations are things like seeing people, animals, or anything you can see in real life or dreams. No one else in the room can see them. Tactile hallucinations include things like the feeling of bugs crawling on you. You can feel like someone or something is near you when there is nothing there. (Parkinson's UK) 

    Experiencing a hallucination for the first time is remarkably frightening and confusing. If you start to hallucinate, you should tell your neurologist/doctor/movement disorder specialist so that they can help determine what's causing them and help either manage them or get rid of them. If you experience a hallucination, try not to panic. Take some deep breaths and tell yourself that you will be okay. Hallucinations cannot hurt you or others, and they will pass. Keep a diary of when they happen and give that information to your neurologist. There are some things that you can do to help. 

    Focus your attention on an activity to distract yourself from the hallucination. This can be anything like reading, doing a puzzle, watching TV, or playing a video game. Engage with the hallucination—write about it, draw it, or talk about it with someone. Practice breathing techniques like box triangle breathing. Exercise. (Parkinson's UK) 

    You don't have to let hallucinations control you. Like PD, we have the choice to control it or not. You don't have to do this alone. There are groups, places, and therapists who can help. Reach out, and don't go through this alone. You are not crazy, and it's not your fault. 

    Delusions are the other issue that we may experience. Aren't we lucky? 

    They can be more challenging to deal with than hallucinations, and they may involve the people you love. If you experience paranoia, you might think that someone is trying to hurt you in some way. You may also think that people are conspiring against you in some way. You may experience jealousy regarding a spouse or other people close to you. You may think your spouse is having an affair. You may experience grandiose thoughts and think you have superpowers or that you have a relationship with a famous person. You may not recognize the people and objects around you. (Parkinson's UK) 

    Delusions are very problematic for those who care for us. We may not realize that we are experiencing them. It's essential for those who care for us to know what delusions and hallucinations look like so that if we can't tell our neurologist, they can. If you're fortunate, you can experience both hallucinations and delusions. (Parkinson's UK) 

    Other things we can do to help ourselves are: 

    • Meditation 
    • Create a Good Memory box or book 
    • Get as much sleep as you can (I know, that's not easy) 
    • Improve lighting to reduce shadows 
    • Your diet is also very important—Eat healthy meals and snacks! 
    • Talk to your loved ones—They want to help. (Parkinson's UK) 

    All in all, it sucks to have PD, and the chance that we might experience hallucinations and/or delusions makes it even worse. However, we must remember that we are not alone on this journey. We are a strong, loving, supportive community, and we are in this together. There are so many of us that you can reach out to. This disease can be brutal, but it can also lead to many positive things. So, take this article as it was meant to be taken—informative and, I hope, not too scary. I am here for you, as are many other people. Don't be afraid. Be informed. 

    Dianne Bramble is a Registered Nurse in Ottawa, Ontario, Canada. She left nursing and got her certification in Health Coaching, Cognitive Behavioral Therapy, and Personal Training. Dianne's focus is on people with chronic conditions like Parkinson's. She's 56, married with two kids, a dog, and a horse. She was diagnosed with Parkinson's in September 2013. Her blogs will focus on mental and physical health. 

  • 12/16/2024 4:39 PM | Anonymous

    It was a casual remark made by a good friend over lunch that got me started. After 12 bumpy years of Parkinson’s disease (PD), I completed deep brain stimulation (DBS) surgery at Mount Sinai West in New York. I quickly saw improvement in my dyskinesia, dystonia, and cognition. My good friend Gary remarked in amazement at the improvement created by the pulsing electronic device buried in my chest, “It’s like you’re some kind of superhero who gained his powers through DBS!” 

    I was inspired. Over the months that followed, I developed a relatable comic book character who is perfectly fictional: the superhero with Parkinson’s disease, NeuroNinja. He gains powers in a freak collision between an MRI machine and a quantum computer. Despite his many new powers, the one foe he cannot overpower is his Parkinson’s! Like many of us, he is “unsteady and yet unshakable” in his commitment to the Parkinson’s community. 

    Over time, NeuroNinja learns to use his symptoms to shake up his enemies. Still, he may be defeated by his many symptoms. Thankfully, when NeuroNinja runs into trouble, he can regain his powers by being surrounded by the Parkinson’s community. 

    NeuroNinja faces many opponents, including Miss Folding (AKA misfolding proteins), who turns folding paper (origami) into dangerous weapons. He also battles Brain Fog, the brutish Rock Steady boxer. 

    In my excitement, I was motivated to create a script for the first issue, the origin story, instructions for visuals, and a clear picture of the finished product. I then recruited a talented comic illustrator to draw keyframes. 

    In November, I created a Kickstarter crowdfunding project to raise sufficient backing to fund illustrations, printing, and marketing. I was so gratified to receive the backing of 53 members of the Parkinson’s community. More importantly, more than 1,000 people have visited the site on Kickstarter. I am very grateful to all who backed our project and are helping to bring this comic book to life, particularly our talented illustrator. We are working on creating the finished NeuroNinja Episode #1: The Origin Story. 

    This project has kept me alert, engaged, and excited. I think and dream about NeuroNinja. 

    I do not sponsor major research like Michael J. Fox or achieve athletic feats like Jimmy Choi. In our own way, we are hoping our NeuroNinja Comics can shed light on and lift the Parkinson’s community. I also hope to partner with a Parkinson’s organization that shares our message and seeks a unique way to raise funds. Parkinson’s advocacy can take many forms, and we each can take a stand and remain “unsteady yet unshakable!” 

    Yes, I met my goal on Kickstarter. I am very appreciative to the entire Parkinson’s community. 

  • 11/07/2024 2:22 PM | Anonymous

    Exenatide Falls Short: What's Next for Parkinson's Breakthroughs?

    Recently, we received the long-anticipated results from the Phase 3 Exenatide trial, which tested the diabetes drug exenatide (Bydureon) for Parkinson’s disease. Unfortunately, the trial did not achieve its primary goal of improving motor symptoms, leaving us with 14 clinical trials in Phase 3 for Parkinson's, only two of which target disease  modification, with the remainder focused on symptom relief.

    According to the “Hope List” compiled by Dr Kevin McFarthing, which tracks Parkinson’s research worldwide, only two other drugs remain in Phase 3 with the potential to disease modification: Annovis Bio's Buntanetap and Ambroxol, a repurposed over-the-counter cough medicine.. Although there are additional drugs in earlier phases (Phase 2 and 1), they remain years from completion. However, we hope to learn soon if these two disease-modifying treatments meet researchers' expectations and could eventually make a meaningful impact for people with Parkinson's.

    What Happened with Exenatide?

    The Exenatide-PD3 study showed no significant difference in the progression of symptoms between participants taking exenatide and those on a placebo. This trial, conducted in the UK with 194 participants over 96 weeks, tested the drug's ability to slow Parkinson's progression but did not produce the desired outcome. 

    What Are the Two Other Drugs in Phase 3?

    Buntanetap

    In July, new data from a Phase 3 trial revealed that buntanetap, developed by Annovis Bio, showed promising results in improving motor function in Parkinson's patients diagnosed more than three years ago and those experiencing balance and gait issues. After six months of daily treatment, the drug halted cognitive decline, even showing improvements in patients with mild dementia. Buntanetap works by reducing toxic protein clumps tied to neurodegenerative diseases, and the trial confirmed it as safe and well-tolerated.

    Earlier, Phase 1/2 trial data laid the foundation for this Phase 3 trial, showing buntanetap's ability to outperform a placebo in enhancing cognitive and motor skills in Parkinson's patients while also reducing overall disease severity on the MDS-UPDRS scale. Additionally, treatment lowered levels of TDP-43, a harmful protein buildup similar to alpha-synuclein in Parkinson's. Based on this Phase 2 data, the FDA provided positive feedback on the company's plans to pursue a Phase 3 trial for buntanetap in patients with later-stage Parkinson's.

    Ambroxol

    The next announcement on the Phase 3 clinical trial of ambroxol as a treatment for Parkinson's disease is expected this autumn. Led by Professor Anthony Schapira at University College London (UCL),  the trial has faced delays due to necessary drug reformulations and finalising contracts with research centers. This two-year, placebo-controlled study will involve 330 participants across 10-12 sites in the UK, with a focus on whether ambroxol can slow Parkinson's progression.

    Ambroxol, commonly used as an over-the-counter cough medicine, has shown promise in early trials due to its potential to enhance the enzyme GCase, which aids in breaking down protein clumps associated with Parkinson's. In a Phase 2 trial, the drug increased GCase levels, reducing toxic protein buildup in cells, which is a known factor in Parkinson's neurodegeneration. If the ASPro-PD trial confirms that ambroxol can slow Parkinson's progression, there will be a concerted effort to make the treatment available as soon as possible.

    More PD News Snapshots

    Data from Landmark Michael J. Fox Foundation Study Shows Impact of Promising Parkinson's Therapy

    In October 2024, Roche announced promising results for a new therapy, prasinezumab, which may help slow the progression of Parkinson's disease. Data from the Parkinson's Progression Markers Initiative, a long-term study by The Michael J. Fox Foundation, showed that patients treated with prasinezumab had at least 40% slower disease progression. This therapy targets a brain protein linked to Parkinson's and showed particular benefits for motor symptoms. To further explore its potential, Roche has launched the PADOVA trial with over 500 participants, bringing hope for new treatments and, eventually, a cure for Parkinson's.

    New 24-Hour Parkinson's Treatment Approved by FDA: What You Need to Know About VYALEV

    The FDA has approved VYALEV™, a new treatment for adults with advanced Parkinson's disease that provides continuous relief from motor symptoms for 24 hours through an under-the-skin infusion. This innovative medication combines levodopa and carbidopa, two common ingredients used to manage symptoms like tremors and stiffness, and it offers steady symptom control without the ups and downs associated with traditional oral medications. Designed for those who experience fluctuations in their symptoms, VYALEV™ has been shown in clinical trials to increase "on" time (periods of good movement) by an average of 2.72 hours without troublesome side effects. The treatment is delivered via a small pump, allowing for personalized dosing throughout the day and night. While it does have some mild to moderate side effects, VYALEV™ represents a significant advancement in managing Parkinson's disease and improving patients' quality of life. 

    Ophthalmic acid as an alternative to dopamine in motor control

    A team at the University of California, Irvine, has discovered that a brain molecule called ophthalmic acid can act like dopamine in controlling movement, offering a promising new direction for treating Parkinson's disease. This molecule binds to calcium-sensing receptors, improving movement in Parkinson's mouse models for over 20 hours—far longer than the 2-3 hours typical of the current dopamine-based therapy, L-dopa, which also causes side effects with long-term use. This breakthrough suggests that dopamine isn't the only neurotransmitter managing movement and opens doors to treatments that could work through a previously unknown pathway. Researchers are now exploring ways to increase ophthalmic acid levels in the brain as a potential alternative therapy.

    Cancer Drug Shows Promise in Blocking Harmful Protein Spread

    Researchers have found a protein called Aplp1 that helps harmful proteins associated with Parkinson's disease spread in the brain. Interestingly, a cancer drug already approved by the FDA can block this process in mice by targeting a related protein called Lag3. When both proteins were blocked, the spread of these harmful proteins was reduced by 90%, potentially preventing damage to the brain cells responsible for movement. This suggests that the cancer drug could be repurposed to treat Parkinson's disease. The next steps involve testing this treatment on mouse models for Parkinson's and Alzheimer's, which could lead to new therapies to slow down these diseases.

    High-intensity Exercise May Reverse Neurodegeneration in Parkinson's Disease

    A recent small study suggests that intense exercise could not only slow down but might also reverse brain damage caused by Parkinson's disease. While earlier research showed exercise improves PD symptoms, this study is the first to demonstrate actual changes in the brain. Ten participants with PD completed a six-month high-intensity aerobic exercise program, and brain scans revealed healthier dopamine-producing cells that communicated better after the program. Dopamine is crucial for movement control, and these findings indicate that exercise may directly protect and repair brain cells rather than just treating symptoms like current medications do. This study highlights the importance of exercise in managing Parkinson's, suggesting it could have a more significant impact on brain health than previously thought.

    $50M raised to advance brain stimulation device

    Inbrain Neuroelectronics has raised $50 million to advance its brain-computer interface (BCI) technology, aiming to improve treatments for neurological conditions like Parkinson's disease. Using ultra-thin graphene electrodes, this BCI can adaptively stimulate specific brain areas based on real-time activity, aiming for better outcomes with fewer side effects than current deep brain stimulation (DBS) devices. The technology, recognized as a breakthrough device by the FDA, has shown promise in clinical trials and is also being tested for other conditions like epilepsy and brain cancer. Partnering with Merck KGaA and Imec, Inbrain plans to scale production and further its impact in neurology.

    Cerevance's drug solengepras helps reduce off-time 

    In a recent trial, Cerevance's new oral drug, solengepras, showed promising results in improving the quality of life for people with Parkinson's by significantly reducing "off time"—the periods when symptoms like tremors and uncontrolled movements return despite medication. The Phase 2 trial included 141 patients who added solengepras to their standard Parkinson's treatments, with those on higher doses experiencing a reduction in off time by up to 1.6 hours, along with increased "on time" when symptoms were better managed. The drug also helped reduce sleepiness, was well tolerated with only mild side effects, and is currently being further tested in ongoing trials.

    Right-Sided DBS: Effective Parkinson's Treatment Without Speech Loss

    A recent study suggests that stimulating only the right side of the brain with deep brain stimulation (DBS) may help alleviate movement problems in Parkinson's disease without significantly impacting speech abilities. In contrast, left-side stimulation was associated with more noticeable speech difficulties. This finding indicates that unilateral DBS—stimulating just one side of the brain—could be a safer option than the traditional bilateral approach, which encourages both sides. Conducted by researchers at the University of Alabama at Birmingham, the study is part of the NIH's BRAIN Initiative and points to a promising, less invasive DBS approach that may help Parkinson's patients manage motor symptoms while preserving cognitive functions like speech.

    Potential of Device-Assisted Therapy for Advanced-Stage Parkinson's Disease

    At the 2024 International Congress of Parkinson's Disease and Movement Disorders (MDS), researchers presented promising results from the DIVE-I trial, a small study exploring a new device-assisted therapy for Parkinson's disease. The trial began in 2020 and included 12 patients experiencing movement issues. It also tested the safety and effectiveness of delivering dopamine directly to the brain via a small pump. This approach was found to control movement symptoms without causing dyskinesia, a common side effect of oral treatments. Dr. David Devos, co-founder of InBrain Pharma, highlighted the potential of this less invasive method to stabilize dopamine more effectively.

    Parkinson's therapy Bemdaneprocel shows benefits for up to 2 years

    Data from the Phase 1 exPDite trial of bemdaneprocel, a new cell therapy by Bluerock Therapeutics, showed promising results for Parkinson's disease. The therapy, which transplants dopamine-producing cells into the brain, helped patients experience more time with controlled motor symptoms ("on" time) and reduced "off" periods when medication is less effective. High-dose patients saw a 1.8-hour increase in on time and a 1.9-hour decrease in off time. Safe and well-tolerated up to 24 months post-surgery, even after stopping immune treatment, bemdaneprocel will now move to a Phase 2 trial for further study.

    Department of Defense-funded research may lead to breakthroughs for Parkinson's neuropsychiatric symptom

    Around half of people with Parkinson's disease (PD) experience neuropsychiatric symptoms like memory issues, sleep disruptions, depression, anxiety, and even hallucinations. Psychology professor Christopher R. Bishop and his team, supported by a four-year, $3 million Department of Defense grant, aim to uncover the causes behind these symptoms in PD patients. Their research, in collaboration with experts at Binghamton University, the Barrow Neurological Institute, and the University of Illinois, investigates how changes in serotonin-producing neurons contribute to these issues. They found that in Parkinson's, these neurons can start producing dopamine erratically when treated with L-DOPA, leading to serious side effects. This research seeks to pinpoint effective treatments, including existing medications, that could target serotonin-related challenges in PD. Their work highlights how Parkinson's impacts not only movement but also cognition, emotions, and sleep to enhance life quality for those affected.

    New Data Demonstrate Substantial Therapeutic Potential of Capsida's IV Gene Therapy for Parkinson's Disease

    Capsida Biotherapeutics has reported promising results for its gene therapy CAP-003, aimed at treating Parkinson's disease with GBA mutations (PD-GBA). Delivered via a simple IV, CAP-003 boosts levels of the GCase enzyme—deficient in many with this genetic mutation—by up to 250% in the brain's key areas, which is essential for brain health. Unlike other treatments, it also avoids side effects in the liver and other sensitive organs. With no safety concerns seen in animal studies, Capsida's CEO says CAP-003 could offer a safer, one-dose approach to slowing Parkinson's progression, with human trials expected in 2025. 

    New Parkinson's Drug VQ-101 Shows Promise in Early Human Trials

    Vanqua Bio's experimental drug, VQ-101, shows promise as a treatment for Parkinson's disease based on early human studies. This oral medication activates an enzyme called glucocerebrosidase (GCase), which helps remove harmful protein clumps in the brain associated with the disease. In a Phase Ia trial, VQ-101 activated GCase by over 75%, exceeding expectations, and it was well tolerated by participants with no serious side effects. The drug successfully reached the brain, suggesting it could potentially slow or stop the progression of Parkinson's in future trials.

  • 11/07/2024 2:18 PM | Anonymous

    Here are my thoughts on choosing joy and gratitude when facing a currently incurable disease and how we should treat all people.

    This isn’t a pity party column.

    It’s a genuine way to highlight the syndrome. A progressive and degenerative one that is, in many ways, a brutal journey.

    It’s also to share what I’ve learned about how to deal with tough times.

    For me, the outward-facing symptoms aren’t the worst. The weird walk, effect on voice, tremors, slow movement, etc., aren’t pleasant, but they aren’t the worst things.

    It’s the hidden ones. The symptoms no one sees that you wrestle with daily or periodically. From bladder and bowel issues, struggles with swallowing, fatigue, insomnia, severe apathy, and anxiety. All of these are unseen by people but are very, very real.

    After an intense period of travel and relatively high demand, combined with grief and a virus, I feel done in.

    My natural optimism is replaced by a deep apathy that can be so severe it’s as if you don’t exist. Totally numbing. I also get something that was previously alien to me;

    Anxiety - a clinical symptom of PD due to the disruption to pathways in our brains.

    You know it will pass, and this isn’t you but the disease. However, no matter how much you tell yourself this, it’s tough. Brutally tough.

    I’ve learned that you can’t think or pray your way out of it. You have to make conscious choices.

    Read on.

    The ongoing depletion of dopamine neurons has a catastrophic effect on people with PD.

    In my case, the very rare young onset variety typically comes with more dystonia (persistent cramp), depression, and dyskinesia (involuntary movements).

    When I feel like this, it’s hard to smile. This is not just due to the face masking (rigid face muscles that make you look angry or moody) but also because nothing really feels good.

    In fact, due to the lack of dopamine, you get very little reward hits due to the lack of the hormone that gives you them. So, even good things feel neutral.

    So what do I do?

    I have to make conscious choices to be joyful and to choose gratitude.

    When you do this by disciplined choice, gradually, things change.

    I also have to rest.

    This condition doesn’t make life easy for family, work colleagues, and friends, either. I’m grateful for those who understand and give me extra grace in these times.  

    I’ll never throw in the towel; that’s not my style. Sometimes, though, in order to replenish, I need to go dark.

    If I go quiet or am slow to reply, now you know why. 

    I’m not being rude or slack; I’m simply dealing with the fight of my life. Usually, it only takes a day or so to pull out of the nose dive.

    Finally, here’s my advice to everyone, including me, when dealing with people.

    Be kind. Give the benefit of the doubt. Believe the best. You don’t know what someone is going through.

  • 11/07/2024 12:52 PM | Anonymous

    One of my Cinema Therapy students, Terri Van Bibber, said those beautiful words to me after doing her fantastic presentation at the Parkinson's Association of Northern California (PANC) conference on Saturday, Sept. 28, 2024. Terri presented as Joy - literally. She took our Turning Parkinson’s Disease Inside Out class and, from that work, came up with an unexpected way to share her story. It’s important to understand that standing on a stage in front of more than 600 people dressed as an animated character was not in her realm of possibilities when she began the course. A long series of “yes, ands” led her to this place. 

    Terri did a great job of making sure she surrounded herself with friends. In this case, she brought Sadness, Anxiety and Fear on stage with her. “What kind of friends are these?” you may be asking. Some of the best, if you learn how to listen and relate to them, rather than stigmatize and avoid them. 

    Just as the character of Joy learns in Inside Out, Terri has learned in her Parkinson’s disease (PD) journey that refusal and denial, while human, are quick paths to theParkinson’s prison - a place where people become stuck in the words “I can’t” or “I shouldn’t”. This is isolation, an absolute killer, especially when it comes to PD. 

    So what does leaning into and sharing our emotions and stories do? It gives us language where we can identify those hidden fears - the ones that have us falsely believing “it’s just me”. Having language and understanding how to present them via storytelling allows us to express ourselves and connect with others. Until there’s a cure, we have each other. And we’re better together.  

    Terri took the seeds of several ideas she learned about within our community, then cultivated and co-created them into this staged reality with the help of others. I was honored to be one of her co-creators. She received an opportunity to share her story from PANC. But rather than do a “death by powerpoint recitation of the facts” (you know the ones I’m talking about), she presented her beautiful and colorful imagination and creativity. She worked with local actors to embody the emotions so many of us hide inside for everyone to see. She showed us there’s more to Parkinson’s. And just as she wouldn’t be here without me, I wouldn’t be here without her, or all of you.

    To learn more about Cinema Therapy and the classes you can take part in, please click here.

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