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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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  • 05/05/2025 12:17 PM | Anonymous

    Living with Parkinson’s disease is a journey fraught with challenges that often extend beyond the physical. While the motor symptoms are well-documented, the mental health implications are equally significant and deserve urgent attention. For people with Parkinson’s, understanding the psychological landscape and actively fostering mental wellness is vital for enhancing quality of life.

    The Psychological Toll of Parkinson’s

    The reality is stark: nearly half of people with Parkinson’s will face mental health issues, including anxiety and depression. The emotional burden can be heavy, exacerbated by the uncertainties that accompany a chronic illness. The decline in dopamine not only disrupts movement but also affects mood regulation, leading to feelings of hopelessness and distress. 

    The social and emotional implications can feel isolating. Changes in lifestyle and the loss of independence can stir anxiety and depression, making it imperative to address these concerns head-on. We must shift the narrative: mental wellness is not secondary; it is a fundamental aspect of managing Parkinson’s.

    Seeking Mental Health Support

    Engaging with mental health professionals is paramount. Cognitive-behavioural therapy (CBT) has proven effective in alleviating depressive symptoms and anxiety in people with Parkinson’s. A meta-analysis found that CBT significantly reduced depression and anxiety levels in this population. 

    Peer support groups also hold immense value. Sharing experiences with others who understand the journey can alleviate feelings of isolation, creating a sense of community that fosters emotional resilience. Research indicates that participation in support groups can lead to improved mental health outcomes and a greater sense of belonging.

    Strategies for Enhancing Mental Wellness

    1. Stay Active: Regular physical activity is a powerful antidote to mental health struggles. Exercise not only combats physical symptoms but also releases endorphins—nature’s mood lifters. A systematic review highlighted that physical exercise significantly improves mood and reduces anxiety and depression in people with Parkinson’s. Activities like walking, swimming, or even gentle yoga can significantly boost mood and help manage anxiety. 

    2. Mindfulness Matters: Mindfulness and relaxation techniques can be game-changers for emotional well-being. Practices such as meditation and deep-breathing exercises promote a sense of calm and help manage stress. A study found that mindfulness-based interventions led to significant reductions in anxiety and depression among people with Parkinson’s.

    3. Nutrition for the Mind: A balanced diet is more than just physical nourishment; it’s a cornerstone of mental health. Consuming a variety of fruits, vegetables, and omega-3-rich foods can support cognitive function and enhance mood. Research indicates that a Mediterranean diet, rich in antioxidants and healthy fats, is linked to better mental health outcomes. Staying hydrated is equally vital; even mild dehydration can affect mental clarity and emotional stability.

    4. Cultivating Connections: Maintaining social ties is essential for emotional health. Engaging with friends, family, or support groups can provide a crucial lifeline, reducing feelings of loneliness. Research shows that social engagement is associated with lower rates of depression and improved quality of life in people with Parkinson’s. Participating in community activities or hobbies fosters a sense of belonging and purpose, both of which are vital for mental wellness.

    Embracing a Holistic Approach

    For people living with Parkinson’s disease, prioritizing mental wellness is not merely beneficial—it’s essential. By recognizing the interconnectedness of mental and physical health, patients can adopt a more holistic approach to their care. 

    Incorporating effective strategies—such as psychological support, physical activity, mindfulness, proper nutrition, and social engagement—can lead to greater resilience and a richer quality of life. It’s time to champion mental wellness in the conversation around Parkinson’s, paving the way for a more compassionate and comprehensive approach to living well with this condition. By embracing these steps, people with Parkinson’s can cultivate hope and purpose, navigating the challenges of Parkinson’s with strength and resilience.

    References

    - Aarsland, D., Brønnick, K., Frank, A., & Klosinski, C. (2011). Neuropsychiatric symptoms in Parkinson’s disease. *Movement Disorders*, 26(3), 353-359.

    - Cramer, H., Lauche, R., Langhorst, J., & Dobos, G. (2015). Mindfulness-based stress reduction for people with Parkinson’s disease: A randomized controlled trial. *Parkinsonism & Related Disorders*, 21(11), 1138-1144.

    - Ebersbach, G., Giesinger, I., & Schulte, M. (2010). The role of physical exercise in the treatment of Parkinson’s disease. *Movement Disorders*, 25(12), 1791-1799.

    - Kätsyri, J., Kallio, M., & Rantakokko, P. (2020). Cognitive-behavioral therapy for depression and anxiety in Parkinson’s disease: A meta-analysis. *Clinical Psychology Review*, 78, 101847.

    - Katz, R., Henneman, E., & Wendel, C. (2012). Social engagement and quality of life in Parkinson’s disease. *Parkinson’s Disease*, 2012, 1-6.

    - Shah, H., Robinson, L., & King, H. (2018). The effectiveness of support groups for patients with Parkinson's disease: A systematic review. *Neurodegenerative Disease Management*, 8(1), 21-30.

    - Sofi, F., Abbate, R., Gensini, G.F., & Casini, A. (2010). Accruing evidence on benefits of adherence to the Mediterranean diet on health: A systematic review and meta-analysis. *Nutrition, Metabolism and Cardiovascular Diseases*, 20(8), 651-658.

  • 05/05/2025 12:08 PM | Anonymous

    Shedding light on the unknown Psychosocial side of PD is very important to me. I suffered with unspecified depression and anxiety alongside leg pain and gait issues for more than a decade before receiving my YOPD diagnosis. One of the most overlooked yet critical aspects of PD is its psychosocial impact, particularly the emotional toll it takes. Yet there are so many who either don’t know or would turn a blind eye to this very REAL symptom of Parkinson’s disease.   

    Waves of confused emotions fill our days and haunt our nights. While our bodies and minds struggle to maintain sufficient dopamine levels. The combined effort to stay focussed, coordinate our movements and navigate daily tasks gets overwhelming. Apathy is a slippery slope straight to despair. It is fed by the negative stigma that plagues us when we are misunderstood. Parkinson’s Disease is still largely misunderstood. This is why our stories are so important. Specifically regarding how this crap affects our minds. 

    I can tell myself all day long that I’m ok. Count my blessings and keep my chin up by always looking into the light in front of me. Standing up for our planet with love for future generations. My Mother Nature voice and persona who never gives up or gives in. 

    While I don’t give up. The lows make all of us wish to give in at times. Where is the infamous “IN” people give themselves to? I dare not dream down that doom filled path. Still, I understand what it’s like to fight waves of paranoia. Fear I might never see my children again. Or wonder if I might wake up tomorrow unable to walk or talk. 

    Yes, and I second guess every word I write, and wonder if I’m really making a difference. 

    Then I look at all we’ve shared as a community. I hear our voices remixed on the wind. It lets me know that I’m loved and accepted. Yes, and provides comforting reminders that I am not alone. 

    Doubt and worry about the future is a bloody wound on the mind's eye. Too many people with PD suffer in silence. Isolated by the very symptoms that need connection the most. Loneliness fuels self-doubt. Staying connected, sharing stories, and supporting one another isn’t just helpful—it’s essential.

    This is why telling our stories is so important. People need to know how this disease affects the mind, not just the body.

    There are days when I dont feel “fine”. It’s not easy to always look toward the light, I hold on to gratitude and draw strength from nature, from love, from holding on to hope for the future. I can’t and won't give up.

    Still, I’d be lying if I said I didn’t feel the pull of darkness at times. The lows are brutal. Facing fear and fatigue makes me wonder how long I’ll be able to function. Like many mothers with loved ones far away. I worry and fret over when I might hold my children again. It’s hard to admit how much it all scares me.

    We need to make it known mental health is a big part of this disease. Don’t ignore it. Don’t minimize it. Talk about it and support each other. Yes, and always love one another. 

    Because in the end, our voices and our stories, our light and our love will melt the fog. Join me and help us shine a spotlight on what it’s really like to live with PD. www.yesandexercise.org 

    Help us rebrand what the world knows about Parkinson’s disease. In Dr. Robert Cochrane’s Cinema Therapy classes the psysocial side of Parkinson’s is not ignored. In fact we unpack such complex emotions within the safe space created by the group. Breaking many people free from apathy and social isolation. I invite everyone to check out the link and see how Yes…and eXercise helps improve participants' wellbeing. The place where we play improv and learn life lessons that help us improve our quality of life. One day at a time. 
  • 04/29/2025 1:25 PM | Anonymous

    Soania Mathur was 27 when everything changed.  

    She was living a full life. She had just started a full-time family medical practice in Ontario, had moved with her husband of three years from a small town to a new condo in a big city, had a bustling social life, and was expecting her first child. Everything in her life was blooming. 

    But there was that little twitch in her pinky finger. It was intermittent, so she ignored it, until it became more persistent and her husband, also a physician, finally encouraged her to get it checked out.  

    In between patients at her busy practice, she zipped over to the neurologist on staff for a quick examination. It didn’t take long: he cut to the chase, telling her, “I think you have young onset Parkinson disease (YOPD).”

    It Can’t Be YOPD 

    At first, Soania didn’t believe him. “This couldn’t possibly be true,” she thought. In fact, she remembers being upset that she had entrusted him with her patients in the past, now realizing that he couldn’t be very good at his job if this was his take on her tiny tremor. But he offered to refer her to one of the best movement disorder specialists in the country, and she accepted.  

    A few months later, as Soania prepared to give birth to her first child, the specialist confirmed: it was YOPD.  

    The First Stage of Grief: Denial 

    For nearly a decade, Soania tried to ignore the diagnosis. She dove into her work. She gave birth to two more daughters. She and her husband built a new home and she built up her family practice. “Intellectually, from a medical perspective,” she explained, “I accepted it. But, emotionally, I couldn’t accept it.”  

    Even as she tried to look away, her life felt colored by her diagnosis. “There was always this cloud hanging over my head, impinging on all the joyful moments I thought I should be experiencing at the time.” She found herself mired in pervasive fear: “Would I be able to take care of my newborn in the same way?” she wondered. “Would I be able to keep up with my kids as they grew older?” “Would I be there for their milestones?”  

    In the haze of her fear and without psychosocial support from her care team, she began to dislike the person she was becoming, “more of a half empty kind of person,” she said, “as opposed to the half-full, optimistic person I was before.” She knew her mindset had to change. 

    How Does Parkinson’s Impact Pregnancy? 

    In the textbooks Soania studied in medical school, the face of Parkinson’s wasn’t hers: it was a White, older male. As a young woman, giving birth, raising a family, balancing a work life, she presented questions her doctors weren’t prepared to deal with. “We still aren’t,” she said.  

    “No one really knew what to do with me,” she explained. Every pregnancy was handled differently, with no established guidelines for expecting mothers with PD or even research to understand the impact of pregnancy on her symptoms, on what to expect during delivery, or the effect on her gestating children. 

    With no guidance other than her own intuition and medical degree, Soania chose to avoid as many of her PD medications as she could during pregnancy. Her symptoms got worse and, after each pregnancy, would improve slightly, and she couldn’t quite tease out whether the intensity of symptoms was due to the drawback of her medications or the impact of pregnancy itself. There was no research to confirm either way.  

    Clinical Science: A History of Inequality 

    The history of medical research is almost entirely male: male subjects, male researchers, male-dominated data. This means that any progress made in the medical field in the past 150 years has been based almost entirely on male biology and the male experience. We are far too diverse a population to rely on such singularly-focused data. Who are we leaving behind? 

    In fact, it took until 1993 for Congress to mandate the adequate inclusion of women in National Institutes of Health (NIH) clinical trials and to lift the guidance previously banning women of child-bearing potential from participating in early phase research. For Soania and other women facing a chronic disease and craving to have a family, this was personal.

    Family-Life-Work Balance with YOPD 

    For as long as she can remember, Soania wanted to be a doctor. From a young age, her parents taught her the importance of service and charity and, so, she envisioned herself practicing medicine, in a career that called on her to give back, and with a family filled with kids. This was her dream. 

    And, for a time, she was living it: Parkinson’s on the back burner, her family and professional life in full gear. But, over time, her nonmotor symptoms like sleep disturbances and anxiety became overwhelming. Just to keep up at work with her ever-growing practice, she started overmedicating in order to function, to give immunizations, and to do physical exams. “I was running myself into the ground,” she said.  

    After twelve years of leading her beloved practice, she had to step away.  

    Soania felt the pain of being forced to give up something she loved. “Medicine became very much part of who I was,” she said, “consuming not only my physical time, but my mental time…When things are taken away from you not by choice but because they have to be, it’s a difficult pill to swallow.”  

    For the first few years after leaving her practice, she grappled with her sense of purpose and meaning and found herself missing getting to do what she had always dreamed of doing. 

    Eventually, her loss transformed into purpose. 

    Raising the Voices of Women with Parkinson’s 

    Today, Soania is active in Parkinson’s work: in charity, writing, speaking, and advocating. Along with other female physicians and advocates, she recently co-authored a paper titled, “Unmet Needs of Women Living with Parkinson’s Disease: Gaps and Controversies.”

    Together, these advocates are uplifting the voices and experiences of women with PD at all stages of their journeys, calling on the Parkinson’s medical field to include women in drug, device, genetic, and hormonal considerations. As more women and younger women continue to get diagnosed in greater numbers, they want to know: how does PD affect women’s lives, through fertility, pregnancy, menopause, and beyond? How can we stop women from being overlooked or misdiagnosed because they don’t have the traditional face of PD? Core to their concerns, though, is the mental and emotional wellbeing of women living with this diagnosis, the psychosocial supports.  

    Twenty-four years after Soania was diagnosed, women are still not getting the tailored care they deserve because not enough is known about their specific needs. Soania’s co-author, Indu Subramanian, MD, said, “It’s shocking how bad the care is for some women with Parkinson’s.” They’re on a mission to change this. As they uplift the needs of women in the PD community, it doesn’t just benefit women: more research benefits everyone impacted by the disease. 

    Helping Children Make Sense of PD 

    When a woman is diagnosed with Parkinson’s, it doesn’t just affect her, it affects her whole family. I wanted to know how Soania has talked to her children about the disease.  

    “My kids have only known me with Parkinson’s,” she said, “so it’s normal for them. My husband and I—we have always kept a very open dialogue with them and an optimistic attitude.”  

    In fact, Soania says that the presence of PD in her children’s lives has grown them, too. “They developed empathy. But the most important thing they’ve learned is that life isn’t perfect and you have to learn to deal with the challenges that come your way.” They’ve learned their innate power to face obstacles—that they can’t change what challenges come their way, but they can resolve to respond to them with courage.  

    Soania has also written two children’s books to help facilitate conversation around having a loved one with Parkinson’s. The last of her two books she wrote with her daughters. “Kids really fear what they don’t understand,” she explained, so she wanted to give parents and grandparents and children the age-appropriate language to begin to make sense of it. Writing with her daughters has been cathartic, a chance for them to gather together, process their experiences as mothers and daughters, and use them to uplift others who may be on a similar journey.

    Women Empowering Women 

    Changing the way the healthcare community understands the unique needs of women with PD matters. “Life with Parkinson disease can be debilitating and disabling for many, and women in particular face a set of challenges our male counterparts don’t,” Soania told me. “And this is only growing. This disease is growing in prevalence and there are going to be many women that come after us who will need and deserve optimized quality of life. This can’t be done without shining a light on their needs.” 

    While she believes medical professionals need to support the mental and emotional wellbeing of every patient, she also believes that women have the power to support each other. “Life as a woman with PD comes with a lot of stressful circumstances,” she said. “Women seeking the counsel and support of other women is really important.”  

    For the past decade, Soania has been connected to a group of women with PD who were diagnosed around the same time she was. Sharing this journey with people who truly understand it has been comforting and empowering. “When you meet someone that’s going through the same life experience you are,” she explained, “there’s a bond that forms almost automatically. It’s invaluable.”  

    This is the truth of human relationships: we are stronger together. 

  • 04/29/2025 1:04 PM | Anonymous

    Sleep isn’t something we think about – until it’s gone.

    4 out of 5 people with Parkinson’s struggle with sleep – how can we do better?

    Parkinson’s is often recognized for its movement symptoms, but it’s so much more than a tremor. It affects nearly every aspect of life, and sleep is among the first things to suffer.

    4 out of 5 people with Parkinson’s report significant sleep disturbances.

    (Journal of Sleep Research, 2025)

    We need to shift the conversation beyond movement symptoms and focus on the full reality of living with Parkinson’s. When something as essential as sleep is disrupted, it can affect every aspect of daily life. It’s crucial to recognize and address these often-overlooked aspects of Parkinson’s to provide comprehensive care and support. Let’s take a look as to what causes this.

    Sleep problems in Parkinson’s can arise for several reasons:

     Dopamine loss: Since dopamine plays a key role in regulating the sleep-wake cycle, its depletion leads to fragmented sleep and insomnia.

     Excessive daytime sleepiness: Parkinson’s disrupts the body’s internal clock, leading to overwhelming daytime fatigue and sudden sleep attacks.

       Restless legs syndrome (RLS), REM Sleep Behavior Disorder (RBD) & involuntary movements (dyskinesia and dystonia): Uncontrollable leg movements, cramps, and muscle stiffness, make falling and staying asleep challenging. RBD is challenging for both the bed-partner and the person with Parkinson’s (PwP), with the PwP often acting out their dreams or shouting out during the night.

     Medication side-effects: Levodopa and dopamine agonists can cause vivid dreams, insomnia, and even hallucinations.

    Sleep matters.

    Sleep is not just rest – it’s repair. When sleep is disrupted, memory, mood, and even motor function decline faster. That’s why understanding and addressing these issues is critical for improving the quality of life in Parkinson’s.

    So what can I do?

    If you are experiencing sleep problems, it is important to understand that it is normal and most people experience it too. It is best to discuss this with your neurologist. However, some sleep tips from experts include:

    Matt Walker’s Sleep Tips

    1.   Stick to a Schedule: Go to bed and wake up at the same time every day, even on weekends. This helps regulate your body’s internal clock.

    2.   Create a Cool Environment: Keep your bedroom temperature around 18°C for optimal sleep.

    3.   Avoid Screens Before Bed: Reduce exposure to bright lights and screens at least an hour before bedtime to help your body produce melatonin.

    4.   Limit Caffeine and Alcohol: Avoid caffeine in the afternoon and evening, and limit alcohol consumption as it can disrupt sleep.

    5.   Wind Down Routine: Establish a relaxing pre-sleep routine, such as reading or meditating, to signal to your body that it’s time to wind down.

    Andrew Huberman’s Sleep Tips

    1.   Morning Sunlight: Get outside and view sunlight within 30-60 minutes of waking up to help set your circadian rhythm.

    2.   Consistent Sleep Schedule: Wake up at the same time every day and go to sleep when you first feel sleepy.

    3.   Avoid Caffeine: Avoid caffeine within 8-10 hours of bedtime to prevent sleep disturbances.

    4.   Dim Lights at Night: Reduce exposure to bright lights, especially overhead lights, between 10 PM and 4 AM.

    5.   Use Sleep Hypnosis: Try sleep self-hypnosis techniques, such as those available on some apps, to help relax and improve sleep quality.

    By incorporating these tips into your daily routine, you can improve your sleep hygiene and enjoy better quality sleep (n.b. click on the links above to deep dive into more sleep hygiene and how to improve your sleep tips).

    References:

    Asadpoordezaki, Z., Henley, B. M., & Coogan, A. N. (2025). Prevalence and associations of self-reported sleep problems in a large sample of patients with Parkinson’s disease. Journal of Sleep Research. https://doi.org/10.1111/jsr.14453

    Huberman Lab, Neural Network Newsletter, Improve your sleep (may 15, 2024) https://www.hubermanlab.com/newsletter/improve-your-sleep 

    Sleep – Parkinson’s Australia information hub – https://www.parkinsons.org.au/information-hub/sleep/

    Sleep playlist on Parkinson’s Australia’s YouTube Channel https://www.youtube.com/playlist?list=PLlvH9lsCa0Uuh27X-azVdPRCflB5IAY4g

  • 04/10/2025 3:10 PM | Anonymous

    There are special moments…. The little things that can and do make a difference in many lives. 

    Support and creating positive, memorable moments is critical but finding that special single moment that ensures no one feels alone in their battle with Parkinson’s is something achievable with the proper community support.

    One story I was told was from a fantastic association in Florida, and they had a meeting where all the members signed a birthday card for one individual struggling with PD. That simple act of love and kindness changed the individual who is diagnosed life forever. Years of lots spread the halls, and knowing she was alone and had support inspired me.

    Many feel you need to go big or home, but to me, the little, tiny things motivate many and change lives for the better. 

    PD affects those diagnosed but also has a significant effect on care partners, caregivers, and the entire community surrounding the individual battling PD.

    I challenge you to think of others and support one another because you will gain the same positive experiences and magical moments.

    I remember during some of mom’s most challenging times through PD symptoms like dystonia, dyskinesia, extremely progressive weight loss, and the list continues, my other lost hope and felt she was homebound since she did not want others to see what PD had done to her. My wife and my support loved my mother and tried daily to do anything and everything to help mom smile, even for a few moments. During the most challenging times and struggles, my wife, Grether, brought manicures, pedicures, and a hair syllabus to Mom’s home; some days, mom was too sick due to PD. Still, in those small moments, something little to some may cause a world of offense to the person struggling; for that moment, PD didn’t win and didn’t stop Mom from feeling like a person again despite all that PD significantly takes from a person diagnosed. I am forever grateful for those small memories where we fought back against PD and created memories that will never be taken from us since PD takes so much from those diagnosed and their loved ones daily. 

    We sometimes sit and think about how we can improve lives, and most times, that little note, card, or hug genuinely changes lives for the better…. Try it sometime and send your stories or the effects of the little things on you or your community. 

    Pass the love and positive support onward because we can all make a difference and endure those diagnosed, and the community never feels alone. 

  • 04/07/2025 12:15 PM | Anonymous

    April is Parkinson’s Awareness Month, a time to reflect on the ongoing fight against Parkinson’s disease and the impressive progress we’ve made in understanding and managing this challenging condition. It’s an opportunity to highlight how much has changed in terms of Parkinson's care—both medically and technologically—and to remind ourselves that the future looks brighter than ever for those living with PD.

    Breakthroughs in Parkinson’s Research: What's New?

    As we look back on recent advancements in Parkinson’s care, it’s clear that the landscape has changed dramatically. Researchers and healthcare professionals are discovering new ways to slow disease progression, enhance symptom management, and improve the overall quality of life for those living with Parkinson’s. Here are my top picks of the most important recent developments that will continue to make life better for those with PD.

    • Infusion-based Therapy: One of the most exciting developments is Vyalev (also known as Produodopa in Europe, Canada, and Japan), an infusion-based therapy approved by the FDA in October 2024. Vyalev provides a continuous flow of levodopa/carbidopa, enhancing "on" time and reducing unpredictable motor fluctuations. Available in the UK and EU since February 2024, it offers more consistent symptom control, reducing the highs and lows that many Parkinson’s patients struggle with. Alongside Vyalev, the FDA approved Onapgo, a subcutaneous infusion therapy for advanced Parkinson’s, offering continuous symptom control without the peaks and valleys of traditional medications. The TOLEDO Phase 3 trial has shown that Onapgo significantly improves "on" time and reduces "off" time, marking a major milestone for advanced Parkinson’s treatment.
    • Adaptive DBS: Medtronic’s Smart Brain Stimulation, which received FDA approval, marks a significant leap forward in Parkinson’s treatment. Unlike traditional Deep Brain Stimulation (DBS), Adaptive DBS (aDBS) adjusts in real-time based on brain activity. This personalized approach offers better symptom management, fewer side effects, and longer battery life. The BrainSense Electrode Identifier (EI), part of the system, allows for more precise electrode placement, ensuring a more efficient treatment from the start. Backed by real-world trial data from the ADAPT-PD study, this approval marks a pivotal moment in personalized Parkinson’s care.
    • Advancements in Biomarker Research: In November 2024, researchers from the University of Barcelona identified ecto-GPR37 in cerebrospinal fluid as a potential biomarker for Parkinson's progression. Higher levels of this molecule were linked to slower disease progression, offering promise for personalized treatment approaches.
    • Acetyl-DL-Leucine Observations: A September 2024 study explored acetyl-DL-leucine's effects on two people with REM sleep behavior disorder (RBD), an early Parkinson's indicator. Treatment led to symptom improvement and even reversal of certain brain imaging markers after 22 months. However, cognitive decline was noted, necessitating further research to confirm these findings and understand the underlying mechanisms.
    • Crexont: The approval of Crexont, a longer-acting version of levodopa/carbidopa, marks an important step in simplifying Parkinson’s treatment regimens. It requires fewer doses, offering extended symptom relief and improving quality of life. 
    • Stem Cell Therapies: Meanwhile, progress in stem cell therapies, such as those by Bluerock Therapeutics and Aspen Neuroscience, is making strides in repairing or replacing damaged dopamine-producing cells, providing hope for those seeking more permanent solutions. Notably, Lund University’s treatment, which successfully implanted lab-grown brain cells in a patient, has led to significant improvements in both symptoms and lifestyle.
    • AskBio’s Gene Therapy: AskBio’s investigational gene therapy AB-1005 has gained Regenerative Medicine Advanced Therapy (RMAT) designation from the FDA. Early Phase Ib studies have shown promising safety and efficacy in slowing Parkinson’s progression and improving motor function. This gene therapy, which delivers a gene that supports dopamine-producing neurons, could be a game-changer for Parkinson’s patients, especially as it moves toward accelerated approval.

    Personalized Parkinson’s Care

    Parkinson’s care is moving from a one-size-fits-all approach to one that is highly personalized. As Professor Bas Bloem aptly put it, “There are 10 million types of Parkinson’s because there are 10 million people with the condition.” The shift towards personalized care means that treatment is tailored to each person’s unique needs. This includes precision medicine, wearable tech for real-time symptom tracking, and customized exercise and nutrition plans. People with Parkinson’s now have more control over their health, and this means better outcomes and more hope for the future.

    Exercise as Medicine

    Exercise continues to be a cornerstone of Parkinson’s management. However, new research shows that not all exercise is created equal. High-intensity aerobic exercise, like boxing or strength training, has been proven to improve brain function and slow disease progression. By integrating personalized exercise plans based on an individual’s symptoms, Parkinson’s patients can experience better mobility, strength, and overall health.

    Food as Medicine

    Natural compounds like turmeric, green tea, and probiotics are being explored for their potential to reduce brain inflammation and protect against Parkinson’s. Diets such as gluten- and dairy-free, Mediterranean, keto, and intermittent fasting have shown benefits for managing symptoms and supporting brain health.

    Wearables and Digital Health: Tracking and Improving Care

    The rise of wearable tech and digital health tools has opened up new ways to monitor symptoms in real-time. Devices like smartwatches, sensors, and apps are now being used to track movement patterns, sleep quality, and symptom fluctuations. This provides valuable data for both patients and doctors, enabling data-driven decisions on medication schedules, lifestyle changes, and exercise routines, making care more precise and personalized than ever before.

    Why Parkinson’s Awareness Month Matters

    Parkinson’s Awareness Month is an opportunity to reflect on how far we’ve come and get excited about where we’re heading. From personalized treatments to therapies that slow disease progression, the future of Parkinson’s care is brighter than ever. However, there’s still work to be done. Awareness is about more than just educating the public about the disease—it’s about celebrating the progress made, sharing the stories of those living with Parkinson’s, and advocating for continued research and innovation.

    For me, as someone who works every day with people living with Parkinson’s and their families, this month is a reminder of why we do what we do. The advances in research and treatment are incredible, and we’re just scratching the surface of what’s possible. Let’s celebrate the breakthroughs, share the successes, and keep pushing forward—together.

  • 04/07/2025 12:04 PM | Anonymous

    April is the month when some of my closest friends and I come together with a shared mission: to find a cure for Parkinson's Disease. For many of us, this cause is a year-round commitment. We tirelessly advocate for more funding for research by raising our voices to state leaders and across social media to make sure our message is heard.

    It's a time we remember those we’ve lost in this fight. Still, Parkinson’s Awareness month is not only a time for reflection—it is a time for action. It is time to call on government officials and healthcare leaders. We must move the public at large to stand with those affected by Parkinson's Disease. It is time to say "enough is enough." We will not be silent, we will not be ignored. Yes, and we will not rest until a cure is found.

    While the month was chosen around the birthday of James Parkinson. We know his outdated version of PD is no longer valid. The Parkinson’s Avengers lead us with Spark the Night on April 11th with a dynamic shade of blue lights glowing around the globe. It doesn't erase the harsh reality. The number of people being diagnosed keeps multiplying while the powers that be continue to turn a blind eye. It is appallingly unacceptable. Parkinson’s awareness month is about standing together and demanding a better way. 

    While the efforts of advocates, researchers, and community leaders have grown, it is clear that we must push harder. We must raise our voices louder. We need to demand greater support from our leaders. The struggle for a cure, for better treatment options, and for access to care is not over. The stress Parkinson’s Disease puts on our future is staggering. The global Parkinson’s community continues to face the miserable truth that too often, the needs of those living with the disease are ignored by those in positions of power who are not listening. 

    We have to make them listen. The stakes couldn't be higher. We must share our stories to save our lives and our future. Knowledge is power. The more we share our individual stories about what this disease does to us. The better the researchers will learn how to fight it. We can’t fight what we don’t understand. So we must make more people understand how much their stories matter. 

    So for me. Parkinson’s Awareness month is all about growing this community. Everyone who is affected by Parkinson’s disease has a story that matters. A story that is important. From the patients to the caregivers. We all can make a difference. Yes, and we must. The future of mankind depends on it. 

    This proclamation serves to honor the tireless work of advocates, scientists, and loved ones. My wish is that it reminds us all that the battle for a cure continues. Our collective action can and does make a difference. One brutally honest story at a time. 

  • 03/24/2025 2:20 PM | Anonymous

    This month we asked our Members to share the "Things I wish I knew". Whether it's a doctor, a resource, or an experience you wish you had known about sooner - your stories help others in the community. 

    Here are some of the responses: 

    Seriously rethink your investment strategy. There is a 10% penalty for early withdrawal of IRA/401(k) funds unless you are disabled according to the federal government, which is a difficult standard to meet. You may be disabled enough to not be able to perform your usual and customary job, but that's not the standard. Even if you are disabled according to their standards, it can be a very slow process and you will need cash to bridge the gap. Like two years worth of living expenses. I wish I had stopped putting money in tax-deferred investment vehicles earlier and switched to money market accounts or high yield savings accounts or other short-term investments that would allow me to access my own money without penalty. Related: find a financial planner who is comfortable discussing disability and "early retirement". I have found that most are not equipped to deal with the curveball of YOPD. They keep wanting to treat me like a traditional client with a normal lifespan and a normal age of/path to retirement.

    I wish I could have told my future self that I would figure out how to live fully with this disease even with so many unknowns about how I was going to progress.

    Nothing. I knew there would be no financial, medical, legal, or legislative support. I was right.

    Postponing an official diagnosis is tempting but not helpful because you can waste valuable time when you could have been implementing helpful strategies like additional exercise, supplements, and so on.

    To get my finances right. Life insurance, Retirement, 401 plans, savings accounts etc. When you don’t expect to stop working at a young age you don’t think about these things as much. I wish I would have saved more and put more money into these types of accounts for mine ands my family’s future.

    I wish I would have waited a bit longer to start medications and DBS. I feel as though I rushed into things hoping for a miracle.

    I would have gone straight to a Parkinson’s Center of Excellence for my diagnosis and initial treatment, instead of my local health system. I eventually made it into the Center of Excellence and both the care and caring attitude of the team has been superb.

    I wish I had known about the overlap between menopause symptoms and YOPD and I wish the physical therapist treating me for frozen shoulder (common early menopause and common early PD symptom) had recognized the lingering weakness and stiffness in my arm was being caused by PD - I could have caught my diagnosis nearly a year earlier.

    I wish I had prioritized my physical health more, even before my PD diagnosis. As a working mom, it was easy to justify the needs of others (family/job) before my own. Nothing like a PD diagnosis to force a reframing of priorities and committing to putting my health first to make sure I'm as healthy as possible for myself and my family!

    There are so many things I wish I had known earlier. I think what would help me the most would be the assurance that I can still live a great life with this disease.

    Early on, I was afraid of the answers, so I didn't ask the questions. I didn't pursue a diagnosis as vigilantly as I could have, trying to keep my head in the sand for as long as possible. I knew I was sick and getting worse as the years passed. Other health problems arose and I became completely incapacitated before I turned 40 years old. I made much of my early adult life sicker than I needed to be, going undiagnosed and unmedicated for 20 years.

    During my diagnosis process, I was convinced life was over. No career, no college, no driving, no social life, no goals. I was certain I was doomed to a slow slide into a dark and meaningless existence.

    What I know now is that this disease has revealed my most authentic self. I live as truthfully as I can, I speak from the heart and have no guilt over taking care of myself first. Some of what I thought was over was accurate, but what has taken their place is unpredictabily rewarding and incredible. 

    Wish I had known what a movement disorders specialist was as opposed to a basic neurologist. I was given a dopamine agonist for my early tremors and had a very bad reaction. I proved to be very sensitive to medications. Finally found the right Neurologist / movement disorders specialist who prescribed an altogether different medication with very slow incremental increase that worked.

    Yes, I wish I had known more about different doctors. Several we tried were not that good despite having been trained at prestigious hospitals etc.

    I wish it had been possible to have a team of specialists coming together to work with my son. In Arizona for example, at the Mohammed Ali Center that is how things are done. (I know about that from webinars (ZOOM sessions) with PMDAlliance which is headquartered there. I spent a huge amount of time trying to keep my son's doctors and specialists informed. For example, when my son was hospitalized, his PCP did not even come there to see him. I found only 1 movement disorders specialist who actually saw patients in the hospital. I was able to get him to agree to take him as outpatient which worked really well until the doctor retired.

    My journey to diagnosis took 14 years.  I was told by multiple neurologists to go away.  How could a young man who played basketball and soccer have a progressive neurodegenerative disease?  The doctors were baffled, but deep down I knew something was not right.  In 2022,  I had enough and finally whatever was happening to me needed care.  I took a DatScan and was told on the patient portal while I was teaching that I had Parkinson's disease.  Finally, I had an answer and thankfully medicines that worked.  I wish I knew how much a person with PD can improve with proper medical care.  I went being constantly off balance and weak to coming in 8th in a 5k race.  That's 8 out of 500 runners.  I could grab the ten foot rim while playing basketball.  I could skateboard again.  Sounds remarkable, right?  I wish I knew that when I read the message in the patient portal and the world felt like it was conspiring against me. 

    I wish I had started carbidopa levodopa on day one. My main issues are tremor in my right hand, and bradykinesia and some akinesia in my right hand, and a bit in the arm.

    I started CL around three weeks ago. This is after about thirteen months after my diagnosis. I waited partially because I didn't fully mentally debunk the myth that starting CL early causes dyskinesia earlier, even though they say that's officially debunked. I was also overly afraid of "immediate" side effects. I haven't had any side effects after taking the CL. I also haven't had any benefits, and I realize that finding the right medication is a process.

    After that lack of response, I realized that there's no point in waiting because there's no guarantee the dose and medication you're first prescribed will work. Something will almost certainly work! Don't get me wrong. But it may take time, so you're better off starting right away.

    Also, if you do end up having side effects, it's better to know that straight away, so that you and your doc can try to figure it out. The way I did it, I waited on taking CL until my bradykinesia made my typing quite hard, and my hand started going into a tremor when I do certain tasks, and I started having some more tremor frequency throughout the day (versus day one of my diagnosis).

    I assumed when I started taking CL that the bradykinesia would go away, and maybe the tremors. But neither has yet, so now this is sort of "lost time" with slightly more advanced symptoms that are having a mild, yet annoying effect on my quality of life. Whereas if I'd started CL 13 months ago, I probably would have at least the bradykinesia more under control, and maybe the tremors too.

    The worst part is that I did all of this knowing that not everyone has an immediate response to CL. So I even ignored the wisdom and advice of the PD community, in favour of my flimsy excuses. So definitely don't do that.

    Good luck!

  • 03/20/2025 11:38 AM | Anonymous

    We would like to hear from you (and your care partner) and learn your perceptions about treatment options for Parkinson's Disease. 

    For this study we will ask  you to complete a quick online survey & an online interview. STUDY LINK.

    For more information about this study please email pd-study@kieloresearch.com.

  • 03/15/2025 12:21 PM | Anonymous

    April is Parkinson's Awareness Month, and we want to shine a light on the power of shared experiences within our YOPN community. This month, we’re asking: "What would you share about your experience with YOPN with others living with YOPD?"

    Your journey, your insights, and your stories have the potential to help someone else feel more supported, informed, and connected. Whether it’s advice, resources, or moments of encouragement, we want to hear it all. Share here

    • What aspects of YOPN have made the biggest impact on your journey? 
    • Is there a resource, group, or connection through YOPN that’s been invaluable to you? 
    • Have you made a connection or new friend through YOPN? 
    • Have you gained knowledge or support you wish you had earlier in your diagnosis? 
    • Is there a piece of advice or a perspective you’d share with someone newly diagnosed?

    Your responses will help us highlight the strength of this community and provide guidance and hope to others navigating their own YOPD journey. We’ll feature your anonymous insights in blog articles, social media posts, and our monthly member update throughout Parkinson's Awareness Month.

    Let’s use this month to lift each other up and spread awareness — your voice matters.  Share with this Form.

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