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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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  • 10/04/2024 2:03 PM | Anonymous
    What are the Symptoms of Parkinson's Disease?

    Living with Parkinson's disease, especially when diagnosed young, can throw a lot your way. Figuring out what's "normal" Parkinson's and what might be something else can feel overwhelming. That's why YOPN is breaking down the common symptoms of Parkinson's disease in a way that's easy to understand. 

    Here's the thing: Parkinson's affects everyone differently. You might experience all of these symptoms, some of them, or even none at first. The key is to be aware of what's possible and to talk to your doctor if you notice any changes. 

    The Most Recognized  PD Symptoms Are Movement Related 

    These movement related symptoms are most often associated with Parkinson’s Disease.  They are just the “Tip of the Iceberg” 

    • Tremors: This is the shaking you might think of first with Parkinson's. It usually starts in one hand or arm and tends to happen when your limb is relaxed. It might look like a pill-rolling motion with your thumb and fingers. 

    • Slowness of Movement (Bradykinesia): This can make everyday tasks feel like they take forever. It might be hard to get started moving, like getting out of a chair, or your walking might become slow and shuffling. 

    • Muscle Stiffness (Rigidity): This tightness in your muscles can make it tough to move around freely. It can affect any part of your body and sometimes be painful. 

    • Balance and Coordination: Stumbling or feeling unsteady on your feet can be a sign of Parkinson's. 

    • Automatic Movements: (Dyskinesia): This symptom, which is actually a long-term side effect of the medication, presents as wild, uncontrolled movement of the body. 

    Beyond the Visible Symptoms 

    While the visible, movement related symptoms are the more recognizable symptoms of PD, most patients report that the hardest parts of PD are the non-movement symptoms that one cannot see.  These include: 

    • Speech: You might start talking softer, slur your words, or hesitate before speaking. 
    • Loss of smell: This is often one of the first symptoms to surface 
    • Sleep Issues- Inability to fall asleep or to stay asleep, REM Behavioral Disorder 
    • Constipation/GI Issues- Constipation causes poor medicine absorption 
    • Anxiety/Depression-As disease progresses, symptoms increase, triggering these emotions  
    • Cognitive Decline- Occurs in about 30% of patients 
    • Executive Functioning Skills:  Many report the inability to multitask, prioritize and focus 
    • Apathy- experiencing the lack of motivation to get up and go 
    Remember: This list is not exhaustive, and everyone experiences Parkinson's differently. If you're noticing any of these, talk to your doctor. They can help you figure out what's going on and develop a treatment plan that works for you. 

  • 09/17/2024 10:32 AM | Anonymous

    “Alone we can do so little; together we can do so much.” 

    —Helen Keller 

    We recently shared the news that PMD Alliance and Young Onset Parkinson’s Network (YOPN)  have joined forces to offer lifetime support for those living with Young Onset Parkinson’s Disease (YOPD) and their care partners. YOPN, a startup-turned-growing-community, was launched when one woman, Anna Grill, decided that there weren’t enough resources for people with Parkinson’s who looked like her (young, still parenting, at the peak of her career), and so she decided to do it herself.  As the organization’s growth began quickly outpacing its bandwidth, Anna felt a strong responsibility to the community to secure a sustainable future for the fast-growing YOPN. We’re eager to expand our joint capacity to meet the unique needs of people who receive this life-changing young onset Parkinson’s diagnosis in the thick of life. 

    This is the story of how and why we came together. 

    The first time Anna Grill ever walked into a neurology office 17 years ago, she was 38 years old. She had an appointment with an experienced movement disorder specialist. Anna remembers sitting nervously on the examination table as she waited for the doctor to come in. When the doctor finally opened the door, she stood in the doorway and looked at Anna for what felt like a beat too long. The doctor barely sat down when she said to Anna: “You have Parkinson’s.”  

    “It was awful,” Anna said. “Before I could even realize what was happening, she had her head in a prescription pad. She handed me the script, said, ‘Go fill this, come back in two weeks. If it works, it’ll confirm your diagnosis.’ I was shocked.” Anna left without taking the script.  

    Three months later, after getting her young onset Parkinson’s diagnosis from a “more level-headed doctor,” Anna turned to Dr. Google for additional support. But she couldn’t find it. She couldn’t find people with Parkinson’s who looked like her—young, female, a parent and a professional. In fact, she could barely find any resources on YOPD at all.  

    “Even without any chronic disease,” Anna said, “parents at that period of life are running around with their hair on fire. People with YOPD are often married or have young kids or they’re single and still dating. They’re not going home and putting their feet up after work; they’re getting kids’ lunches ready and going to PTA meetings and they’re in the prime of their careers.” When she looked around at most of the existing Parkinson’s organizations, she couldn’t find anything that spoke to her needs in that stage of life. When she finally got one organization to send her a newly diagnosed packet for people with young onset PD, the first image on the opening page was a silver-haired lady. This just wouldn’t cut it. Anna knew that she and people like her deserved more: to feel seen and supported in their unique needs. She decided to go out and create it herself. Eventually, Young Onset Parkinson’s Network (YOPN) was born.  

    For ten years after Anna discovered she had Parkinson’s, she and her husband kept her diagnosis to themselves. At the time, Anna was on the fast track as a sales executive at a Fortune 200 company and was the youngest and only woman on the executive team. “I didn’t want another box around me,” she said. “I was the main breadwinner of our family. I was scared of what would happen if others found out.” 

    And her fears were not irrational. “I can tell you stories about people with YOPD,” Anna told me. “While many companies follow the ADA protections and provide wonderful support and resources to their employees, others, unfortunately don’t follow the rules. I have been told about people who have been unfairly fired after coming out with their diagnosis.” This is why Anna’s commitment to providing safety and security for her YOPN members—a commitment PMD Alliance has fully embraced—is essential to her. By offering a membership structure at YOPN, only those who are registered can join programs; no employer—or anyone not in the YOPN community—can secretly spy on what’s happening.  

    Andrea Merriam, PMD Alliance’s CEO, knows how critical this is. “We feel that community and socialization is a key component of health and brain health,” she explained. “To be a member of a community, you have to be vulnerable. But to be vulnerable, you need psychological safety.” In other words, community nourishes and fortifies us, but you can’t let your guard down and reap its rewards if you’re worried about being outed. Especially for people with YOPD, Andrea explains, “You still often have your financial future, your children’s college future, your legacy up in the air.” These are high stakes matters. 

    “Exactly,” Anna said, underscoring Andrea’s point. “That feeling of being in a safe space is really important. Otherwise, you’re not going to join. I went ten years without meeting anyone with the disease. How much better could it have been for me if I had community? By providing safety, we’re bringing people to the table faster and earlier.”  

    Your diagnosis is your story. You deserve to share it if, when, and how you want. No matter where you are on this journey, we’re ready to meet you where you are. 

    Long before PMD Alliance and YOPN joined forces, they recognized the value of each organization. “What captured my attention about YOPN,” Andrea explained, “was the ‘for us, by us’ angle. What they were offering wasn’t prescriptive; it wasn’t someone external telling people how to navigate their diagnosis and their disease. It was coming from people who were living it themselves”—for YOPD, by YOPD. “That’s so aligned with PMD Alliance’s culture and values. I always felt, wow, they just get it.”  

    Anna, too, was impressed with PMD Alliance and its holistic emphasis.  “It was important to me to seek out a partner who embraced my vision for the future of YOPN,” she said. “We worked hard to build a safe, supportive, and vibrant community for those with YOPD.  From the beginning, we’ve listened to the needs and interests of those living with the disease, and created an energetic vibe that reflects their youth and spirit, and inspires them to thrive beyond their diagnosis. With YOPN, people can connect and share, while knowing they’re in a safe place in a safe community.”  

    This joining of forces offers both organizations a missing piece, bringing them into a wholeness that will serve the full spectrum of individual needs across the Ecosystem© of Parkinson’s and movement disorders. “It feels like 1+1 =3,” Anna said, describing the amplified power of this partnership. As Andrea said, “This is such a win for all of us”—for PMD Alliance, for YOPN, and most importantly, for the YOPD community. 

    “We have long been aware of the unique needs of the young onset community,” Andrea said. “And at PMD Alliance, we want to meet people where they are, to listen and ask rather than tell them, This is what we offer. Rather than shoving a square peg in a round hole. We’ve long been aware that their needs are different, that a lot of them are still working, that they have different schedules and need webinar options in the evenings after work, not during the day. With the infrastructure and programs that we had, it didn’t serve those needs.” By joining with YOPN, PMD Alliance can finally make sure that everyone has a space within our community.  

    This joining of forces also provides lifelong support for people living or loving someone with YOPD. “Once you’re diagnosed with YOPD, we always consider you early onset. But at some point in your journey,” Anna said, “what we’re talking about”—with dating and parenting and navigating a career—“will be less relevant. PMD Alliance will be able to provide additional resources—a full path.” PMD Alliance will be there when you’re ready to learn not just about the unique needs of young people with Parkinson’s, but financial assistance programs, deep dives into treatment options, advanced care planning, and more. We also have an extensive on-demand video library for care partners and, if you’re looking to engage with your community and start your own support group or gathering, we have a robust training program to empower you.  

    Since its inception, YOPN has been committed to helping people navigate their disease and thrive today. This means offering fitness and nutrition programs, educational workshops, mind-body tools, and connection. Because, for Anna, supporting people with YOPD in living full, joyful lives has not just been a nonprofit motto; it’s personal. “This is a very complex disease,” she said, “and I’m not willing to wait for a cure to be happy. I’m focused on being well today. If you’re not, you’re going to miss out on life.” Anna has always believed that research and finding a cure is vital, but when she started YOPN, she wasn’t sure she could impact research in the way she can impact lives today. “I’m just trying to make the most of what I have to give while I can.”  

    This sense of living well right now is at the heart of PMD Alliance’s mission, too. There’s a beloved support group leader, Cindy Bittker, and she has a mantra: “Until there’s a cure, there’s community.” This is a pillar of PMD Alliance’s work. “Yes, let’s find a cure,” Andrea said. “I’m so glad there are researchers toiling away. But until they do, there are a lot of people who need help right now. It can be both and. I’m not a Ph.D. researcher; instead of passively waiting for the scientists to figure it out, what can I do? What can we do right now?”  

    By coming together, PMD Alliance and YOPN have made a commitment to the YOPD community: together, we will continue forging a path for everyone living with the disease, including those who get the words—You have Parkinson’s—at the most unexpected stage of life. 

    We will listen to your stories and what you most need and wish for. We will see you and seek to meet you where you are. 

    And though your life may not look like what you imagined, it is still yours—a precious gift. We will walk alongside you, doing everything in our power to help you thrive. 

    In joining forces, we hope the YOPD community will flourish—not tomorrow; today. 

  • 08/26/2024 11:48 AM | Anonymous

    YOPN has had the good fortune of hosting many wonderful guests during our speaker series events. A crowd favorite is Dr. Laurie Mischley.  

    For those who are not familiar with her, she has been a practicing ND (Naturopathic Doctor) for over 20 years and is the founder of the Seattle Integrative Medicine center in Washington state.  What makes her especially relevant to our community is that she focuses her practice and her research work solely on Parkinson's Disease.  Based on the results of her many research studies, she is certain that every one of us with PD can positively impact the number of "good years" we have with the disease through exercise and diet.

    My Call to Action

    They say that a speaker is good if you walk away having learned one new and actionable item. Rating Dr. Mischley on that scale is a ridiculous measurement, as I walk away with 10+ new learnings every time.  Yet, I realized that while I love her talks, I've never actually tried her program. Since I'm a "walk the talk" kind of gal, I knew I had to jump in.  I also had that annoying 20 lb weight gain that so many women get between the ages of 45-55, seemingly overnight and arriving as stealthy as Ethan Hawke moves in Mission Impossible, (which by the way is mission impossible to lose!)

    I knew I had the exercise piece covered. In addition to walking my two goldendoodles every morning for 30-45 minutes, I box three times a week, weight train twice a week and do yoga once weekly.  However, my diet had room for improvement.  So I set up an intro appointment to jumpstart my journey..  

    Getting Started on the Plan

    Dr, Mischley’s team gave me a list of lab work to be done prior to my first appointment with her in  Mid-March.  We reviewed the results together.  I should point out that Dr. Mischley uses her own “PD optimum ranges" based on her research.  For instance, her acceptable level of B vitamins is higher than the typical scale.

    My results showed slightly elevated cholesterol and blood sugar levels.   That, along with my “slightly elevated” weight  gave me pause. Her next statement was surprising-  “From a Parkinson’s perspective, cholesterol is neuro protective so I’d much rather you be slightly higher than slightly lower (and of course you want the HDL to be higher and the LDL to be lower)  Huh.  That’s interesting. She continued on to say "Regarding your weight, I'd much rather you be 10 pounds overweight than 10 pounds underweight with Parkinsons as it's the folks that can't keep weight on who lose strength and have greater risk of falls.  So, while you don't want to be drastically out  of range, a little elevation is actually a good thing sometimes.  Wow that was enlightening! 

    There were, however, a few things she was concerned about:  my inflammation levels, blood sugar and concerns on Vitamin D and B deficiency. She gave me a list of supplements to address some of these concerns that included: Glutothymene (a liquid antioxidant), 2 different B vitamins, and one D vitamin. She outlined a plan that  included downloading the  free ProPD app. and to strictly follow this eating plan for 90 days.  (Please refer to the hyperlinks above for more information on both the app and the eating plan) 

    Results 

    While everybody's different, I found it easy to follow and stick to. The most interesting thing to me was that by eating the right foods, I no longer had hunger pains as the sugar levels stabilized in my body and I found myself not snacking all the time.  I also believe that eliminating dairy (or most of it), along with eliminating bread and pasta helped   in reducing my inflammation and gave me more energy.  My mind felt clearer and overall, I felt better. 

    The results by the numbers look like this:   I lost 15 lb., lowered my cholesterol by 20 points, lowered my blood sugar by two points and increased my vitamin levels to Within acceptable levels.  I am still working on the inflammatory scores but overall feel much better than I did before I started…

  • 08/12/2024 4:47 PM | Anonymous

    In my journey with Parkinson's Disease (PD), I find myself continually searching for ways to manage and overcome the challenges it brings each day. As many of us with PD know, having the condition is a lot like trying to hit a moving target and trying to 

    keep up with it requires constant adaptation. As a former competitive athlete, I often look back at the lessons I've learned on the field and have adapted them to my current life with PD, especially with goal setting.

    As a teenager in the late 70s/early 80s, I played football at Cumberland Valley High School under legendary coach Harry C. Chapman III. Coach Chapman not only taught me about the game of football, but also valuable life lessons that helped shape my approach to setting goals for myself and reaching them.

    Here are 5 goal setting principles I’ve embraced:

    Principle #1: Define Individual and Team Goals

    Coach Chapman emphasized a team-first mentality and the importance of individuals maximizing their athletic abilities for the team's betterment. He would sit down with each player at the end of the school year and set specific strength, agility and conditioning exercise goals for their summer workout program.

    With Parkinson's, I adapted this strategy to include my doctors and support system of friends and family in my health goals. When dealing with specific issues or symptoms, I would talk with my doctors about strategies to feel better, and would then share them with my support system. Communication is key, and over time, I’ve discovered that this practice has really helped unify us as a team and has been incredibly beneficial for my care.

    Principle #2: Maintain Consistency and Dedication to Goals

    During the summer, Coach Chapman held consistent morning and evening workout sessions every Monday, Wednesday, and Friday, and it was understood that we would attend one session a day. The workout sessions were not easy, but they helped me realize that sustained effort leads to improvement.

    For Parksinon’s, my mantra is "Use it or lose it", as I have found out the hard way that if I don't regularly exercise specific dexterous activities, I often lose the ability to do them. This has led me to follow a daily routine of exercises to help maintain my mobility. I’ve found that if a consistent level of effort is directed toward achieving a goal over an extended period, that goal will likely be met. It also helps to have a partner to do these activities with. For example, I have a biking buddy I routinely meet up to take rides with, and we hold each other accountable for getting out there and staying active. 

    Principle #3: Establish Benchmark Testing and Reporting Procedures

    Coach Chapman regularly tested and recorded the team’s progress in key exercises and motivated us by tracking and posting our personal bests for all of us to see. For players who reached their new personal bests, he would mark their stats in his highly sought-after "blue ink." which encouraged us further.

    This taught me the importance of recording my own Parkinson's stats, including treatment outcomes, medication efficacy, exercises that help specific symptoms, and more. This practice helps me determine what treatments or medications are working and which aren’t, and to adjust when necessary. I also share this information with my support system, which keeps them informed and allows them to help in the best ways they can.

    Principle #4: Create a Culture That Fosters Competition and Teamwork

    Coach Chapman would get really fired up when testing/recording players, especially when one of us was attempting a new personal best. His enthusiasm was contagious, often resulting in the entire team gathering around to encourage a player to succeed. His approach created an environment of motivation and inspired us to push our limits and support each other.

    I believe a positive mindset can be infectious and help those around you rally in support.

    By sharing my victories and gratitude with my support system, we have created our own environment of positivity and motivation. This has helped strengthen our bond and our shared commitment to overcoming PD together.

    Principle #5: Persevere, Persevere, Persevere

    One of the best messages I learned from Coach Chapman was the power of perseverance. His football program emphasized the importance of perseverance in all activities, both on the football field and in the classroom. I will always remember him phrasing perseverance, along with persistence, mental toughness, hard work, and overcoming adversity.

    Parkinson's is a tough opponent that doesn't ease up or back down. This is where perseverance has been a key attribute in maintaining a good quality of life. I hold this message close, as I understand that very little is given to us in life, and most successes result from hard work, persistence and perseverance.

    These lessons from Coach Chapman also inspired me to create my own strategies, which led to the creation of an audiobook, "Embracing Parkinson's". In it, I team up with my movement disorder specialist, Joe Green, and we discuss our personal experiences with PD and our game plays for handling the condition. We also dive deep into strategies we developed for stress management, which has been vital in not letting PD get in the way of my personal best.

    Coach Harry C. Chapman III's principles and coaching philosophy have had a positive and lasting impact on my life, and for that, I am truly grateful.

    Thank you, Coach Chapman, for everything you have taught and instilled in me, and for giving me the tools needed to go head-to-head with my fiercest opponent: Parkinson’s Disease.

    – Frank Antonicelli -EmbracingParkinsons.com

    A special thanks to my close grade school friends and teammates #13 Harry C. “Four” Chapman IV and #72 Brian “Bull” Bullock for their contributions to the creation of this post.

    Harry C. Chapman III

    Former Head Football Coach

    Cumberland Valley High School

    I would also like to acknowledge the countless hours the early 1980's CV Football Coaching Staff -- Coach Harry Chapman, Coach Butch Bricker, Coach Bob Crobak, Coach Ron Audo, Coach Joe Correal, Coach Tom Uhrich and Coach Jim Hess -- invested in teaching young men how to compete and conduct themselves both on and off the football field.

  • 07/31/2024 2:59 PM | Anonymous

    Travel is a fantastic way for some rest and relaxation. Before you head out for your summer adventure, consider these travel tips.

    Plan Ahead – Stress can impact your mind, body, and spirit. Take the time to plan as much of your trip as possible in advance. Don’t wait to start packing until the night before you leave. And remember to pack light!

    Give Yourself Plenty of Time -

    • If you are driving, have your stops planned out for stretching, bathroom breaks, gas, and food.
    • When traveling by air: Get to the airport early, consider getting help to carry your bags, allow yourself extra time to board the plane, and consider reserving a wheelchair if walking those long terminals may be difficult and tiring.
    • Consider train travel as a great way to reduce stress and reach your destination.
    • It is important to give yourself some downtime each day. Even a 15-minute break can be a great way to rejuvenate yourself and allow you to participate in important activities later.

    Keep Your Medications with You - Don’t pack your medications in your checked luggage, keep them in your carry on! Keep your medications in their original bottles for identification purposes. Also, make sure you have additional days of doses in case you experience a travel delay returning home.

    Stay on Your Regular Medication Schedule – If you are traveling across time zones, consider keeping your watch on your home time until you start the first new day at your destination.

    Take extra precautions where you can - Covid and other airborne illnesses can still pose a high risk for those with YOPD. Wearing an N95 mask while traveling is a simple, unobtrusive way to keep  you and your family safe.

    Hydrate, Hydrate, Hydrate – Because thirst can be affected by Parkinson’s, make sure you are keeping hydrated. If you only drink when you are thirsty, you may already be dehydrated.

    Wear Sunscreen – If you take carbidopa levodopa (Sinemet, Sinemet CR, Rytary, Duopa), this medication makes you more sensitive to the sun and heat.

    Have Fun Enjoy your time and have a safe journey!

    Angela Robb is a wife, YOPD carepartner, and caregiving advocate. You can read more about Angela & her husband, Karl’s journey with Parkinson’s at ASoftVoice.com.

  • 07/22/2024 11:42 AM | Anonymous

    Thanks, Partner!

    From my perspective, loving someone with Parkinson’s disease can’t be easy. We are cranky, stubborn, symptomatic and aggravated that we have to be any of these things. We are unpredictable in our moods and symptoms, difficult to plan around with our med schedules, eating schedules, times that we need to just rest - all of the above. We’re prone to moments of apathy and we are in need of moments of empathy-more often than most-but also just like everyone else . 

    The underside of loving someone with PD is that you never really know from day to day what face they will have on. And you're expected and encouraged to be the cheerleader, the good cop bad cop the amateur Dr, the nurse the chauffeur, the decision maker… etc. etc. 

    We’re  going to throw roadblocks in your face, we’re going to ask you to leave, we’re going to ask you to run, we’re gonna beg you to stay, we’re going to be terrified that you’ll do any of these things, and through it all we love you so much that half the time we won’t be able to think about the future without you. 

    So thank you,  if you are somebody who loves somebody with PD… anybody…spouse, partner, confidante, friend, fellow sufferer-because you’re slogging through an ocean full of garbage just to get over to that pristine part that you know loves you back…And knowing everything is different every single day you put yourself out there for us because you actually care - and believe me, we know it.

  • 07/02/2024 1:35 PM | Anonymous

    "Its harder for you to see me symptomatic than it is for me to experience the symptoms."

    Maybe your partner has communicated this or a similar message to you before. When you’re diagnosed with Young Onset Parkinson’s Disease, you learn that off times will come and go, and you get used to planning your day around expected (and unexpected!) off episodes.

    On the other hand, it’s much more difficult for loved ones to become accustomed to witnessing their partner’s struggles and not being able to help. That and plenty of other factors contribute to the stress and pressures that a lot of care partners experience.

    As the old saying goes, you can’t pour from an empty cup. It’s important to take care of yourself, take breaks, and recharge before you’re able to continue giving your partner that same level of support over time.

    Here are some things you can do to help manage the pressure when things start to get hard:

    Practice Self-Compassion

    Understand that even the most loving and caring people experience frustration and resentment. Give yourself permission to have these feelings, and remember that it’s okay to feel the way you do. Most importantly, understand that you’re not alone.

    Practice Gratitude 

    Focusing your attention on the good things can work wonders for your mood and your mental state. Make lists of small things that make you happy, little wins from the day, experiences and people that you’re grateful to have in your life, or a combination of it all.

    Set Aside Time For Yourself

    Prioritize finding time each week to do something for yourself. Whether it’s getting away and going to the gym, reading a book for an hour uninterrupted, going for a walk, or something else, meeting your own needs and spending time with yourself regularly can make all the difference.

    Join a Support Group

    Sometimes nothing helps more than talking to other people who are going through the exact same thing as you. If you’re not already a member of the Young Onset Parkinson’s Network, you can join for free — we’re just as much a resource for care partners as we are for those diagnosed with YOPD!

    Make a Therapy Appointment

    If group discussions aren’t your style, talking to a professional one-on-one can help you to better understand your emotions and discover more effective ways to manage them. It’s also a great outlet for venting and expressing bottled up thoughts and feelings without hurting anyone around you.

    Get Moving

    As much as “go for a run” is probably the last thing a stressed-out person wants to hear, physical exercise really does improve your mental state. That doesn’t mean you have to start training for a marathon or anything, but going for a walk, doing some yoga, or even signing up for a couple of fitness classes can have a major impact.

    Spend Time with Friends & Family 

    It’s common for care partners to forget about their lives outside of YOPD. Intentionally setting aside time to connect with your friends and family outside of your responsibilities as a care partner is a great way to remind you that YOPD isn’t all there is. It can be a great change of pace.

    Just as YOPD affects everyone in the diagnosed person's inner circle, YOPN membership is offered to all those diagnosed early with Parkinson's Disease AND those in their inner circle, or "care partner team". Spouses, parents, children, friends, and family alike are welcome in YOPN.

    Being a care partner can be a difficult and frustrating experience. But you’re here reading this because your strength and deep love and care for your partner outweigh all the negatives. So even when times are tough, don’t forget to stop and take care of yourself.

  • 06/04/2024 11:20 AM | Anonymous

    In this age of artificial intelligence,, it may not be surprising to learn that robots are putting the heat on Parkinson's Disease by providing a solution or freezing. Tremor is possibly the most popular and well-known symptom of the degenerative and chronic disease that causes loss of dopamine-producing cells and wreaks havoc on the central nervous system. You may be surprised to learn that one of the most commonly experienced symptoms is called freezing , and happens when a person with Parkinson's Disease suddenly experiences an inability to move. This not only creates balance issues, but often can happen mid-stride and result in a serious fall. 

    Two research groups, one from Harvard and another from Boston University, recently collaborated on an effort to produce a wearable device that uses robotics to combat freezing. The device includes a mechanical component that provides an assistive 'push' to help overcome freezing. In preliminary studies, people who wore the robotic device completely eliminated their freezing episodes and were able to walk aster and further than without the high-tech assistant.

    Read more about this amazing breakthrough: Robotic exosuit gives Parkinson's patient smoother stride. The Young Onset Parkinson's Network is excited to share that three esteemed researchers from the project will be joining us next month to chat with our members about gait dysfunction and how this new device can help. Learn how freezing of gait impacts movement and walking for people with Parkinson's Disease, explore the potential of next-generation wearable robotics to improve freezing of gait, and learn how you can provide the feedback researchers need to develop more impactful solutions. 

    This event is free to all YOPN members. Register online at: Preventing Freezing of Gait using Wearable Robotics in Parkinson's Disease.

  • 05/03/2024 11:52 AM | Anonymous

    In Addition to the Many Physical Challenges To Overcome, There Are Many Psychological Challenges Faced on a Daily Basis

    Living with Young Onset Parkinson's (YOPD) throws a lot your way. You might be dealing with physical symptoms, changes in your daily routine, and maybe even concerns about the future.  It's completely normal to experience a range of emotions along the way – frustration, fear, even anger. 

    Furthermore, mental health challenges are extremely common with YOPD. Studies show that anxiety and depression are much more likely to affect people with Parkinson's than the general population. Because of this, it’s especially important to stay in touch with your mental health and emotional wellbeing.

    Why are mental health challenges more common in PD folks? There are a couple of reasons. First, the changes Parkinson's brings can be stressful. As mentioned above, you might worry about work, relationships, or your ability to do the things you love. I find this is even more prevalent amongst many of those I interact with that have YOPD. Many of us hide our diagnosis for as long as we possibly can and suppress the anxiety and depression we come across. Second, the disease itself can cause changes in the brain that contribute to anxiety and depression. The neurotransmitters that are affected by PD also play a very important role in our mental health; thus emotional challenges are a common non-motor symptom of the diagnosis. The combination of these factors can make daily life especially challenging. 

    So, what can you do?

  • 04/16/2024 12:25 PM | Anonymous

    Living with Young Onset Parkinson's (YOPD) throws a lot at you. For many of us we are juggling raising a family, working, and dealing with the ins and outs of Parkinson’s. Making sure to eat a healthy, balanced diet can seem like an added burden - however, the benefits, both physically and mentally, of eating healthy are worth the investment. 

    Why Food Matters for YOPD 

    The food you choose is the fuel that keeps your body running smoothly.  Eating a balanced diet rich in essential nutrients can help manage symptoms like constipation, tremors, and fatigue, all while giving you the strength and energy  to take on the day. 

    Power Up Your Plate 

    Here are some key dietary strategies to help you live well with YOPD: 

    • Befriend Fiber: Fiber-rich foods like fruits, vegetables, and whole grains keep you feeling fuller for longer and promote gut health, which can help with constipation – a common YOPD struggle. 
    • Hydration Hero: Aim for 6-8 glasses of water daily. Staying hydrated helps your body absorb nutrients and function at its best.  
    • Bonus tip: Warm water in the morning can help stimulate your bowels. 
    • Antioxidant All-Stars: Brightly colored fruits and vegetables are loaded with antioxidants that protect your brain cells. Think berries, leafy greens, and anything orange or red! 
    • Fuel Your Moves:Don't underestimate the power of protein! Lean protein sources like fish, chicken, and beans provide essential building blocks for muscle strength, which can be especially important as you manage YOPD. 
    • Healthy Fats for the Win:Don't fear all fats! Healthy fats from sources like olive oil, nuts, and avocados can help with nutrient absorption and may even offer some neuroprotective benefits. 
    • Sugar Blues? Limit sugary drinks and processed foods. They can worsen tremors and interfere with medication absorption. 

    Tips to Make Eating Easier 

    Swallowing difficulties and tremors can make mealtime frustrating. Here are some hacks to keep things smooth: 

    • Thicken liquids with thickening agents to make swallowing easier. 
    • Chop food into bite-sized pieces 
    • Weighted Utensils can help with mitigating tremors while eating 

    Beyond the Plate: Working with Your Meds 

    Remember, timing your meals strategically can make a big difference.  Certain medications for Parkinson's can interact with food, so talking to your doctor about the best time to eat relative to your medication schedule is crucial. 

    A registered dietitian can create a personalized meal plan to address your specific needs.  Discuss any vitamin or mineral deficiencies with your doctor to ensure you're getting the right nutrients. 

    Join the YOPN Community 

    Living with YOPD can feel isolating, but you don't have to go it alone. The Young Onset Parkinson's Network (YOPN) is a fantastic resource for support, connection, and a wealth of information on managing all aspects of YOPD, including nutrition.  Join us and connect with a community that understands your journey! 

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