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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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  • 02/07/2024 1:22 PM | Anonymous

    YOPN empowers individuals like you to connect, share experiences, and advocate for a brighter future.

    Living with young onset Parkinson's disease (YOPD) is challenging, but you're not alone. The Young Onset Parkinson's Network empowers individuals like you to connect, share experiences, and advocate for a brighter future. One powerful way to make a difference is by becoming an advocate for Parkinson's research and legislation.

    Why Advocacy Matters:

    Increased Research Funding: By advocating for increased government and private funding, we can accelerate research into the causes, treatments, and, ultimately, a cure for Parkinson's.

    Improved Legislation: Advocacy can lead to better policies supporting YOPD patients, such as access to affordable healthcare, disability benefits, and workplace accommodations.

    Greater Awareness: Sharing your story and raising awareness about YOPD can combat stigma, build public support, and attract more resources to the fight.

    How You Can Get Involved:

    1. Educate Yourself:

    Familiarize yourself with current research efforts and policy initiatives related to Parkinson's. Outside of the resources and information provided by YOPN, organizations such as the Michael J. Fox Foundation, Parkinson's Foundation, Davis Phinney Foundation, and National Institutes of Health provide valuable material.

    2. Find Your Voice:

    Share Your Story: Write a blog post (You can share it on our website), talk to local media, or participate in awareness campaigns. Sharing your personal experience can spark empathy and inspire action.

    Contact Your Local, State, and Federal Representatives: Use resources like the American Parkinson Disease Association to find contact information and advocacy templates. Email, call, or even schedule in-person meetings to voice your concerns and ask for support for Parkinson's research and legislation.

    Join Online Communities: Participate in online forums and social media groups to connect with other YOPD advocates, share tips, and organize collective action.

    3. Take Action:

    Organize a Local Event:

    Host a Parkinson's Awareness Walk/Run: Gather your community for a fun and impactful event. Partner with local businesses, schools, or fitness groups for sponsorship and participation. (Or simply show up to local events - your attendance means a lot to the organizers.)

    Organize a Fundraising Gala or Auction: Celebrate while raising vital funds. Donate proceeds to reputable Parkinson's organizations or specific research initiatives.

    Hold a "Shake-Off" Dance Party: Combine awareness with movement, a key element in managing YOPD. Invite local dance instructors to lead sessions and encourage donations.

    Volunteer Your Skills:

    Contribute to Online Advocacy Efforts: Volunteer to share your story with YOPN and we can include it in our newsletter, on our blog, and on social media sites, as well as in our outreach efforts to advocate on your behalf.

    Volunteer to lead LIVE events: YOPN Live was launched this year. Volunteer to be a leader in your community and bring together like-minded YOPD individuals, care partners, friends, and healthcare professionals. Live events are designed to bring the virtual community together.

    Mentor YOPD Newcomers: Share your experience and offer support to newly diagnosed individuals and their families.

    Engage Online

    Join Online Advocacy Groups: Connect with other passionate advocates on Facebook, Twitter, or online forums. Share information, organize virtual events, and collectively lobby for change.

    Challenge Your Network: Encourage friends and family to donate to Parkinson's charities, participate in events, or contact their representatives about YOPD legislation.

    Partner with Other Organizations:

    Reach out to local Parkinson's support groups or chapters: Offer to co-host events, share resources, or collaborate on advocacy initiatives.

    Connect with universities or research institutions: Advocate for increased research funding and participation in clinical trials in your area.

    Partner with businesses or community organizations: Explore sponsorship opportunities or joint fundraising efforts to amplify your impact.

    Remember: No action is too small! By creatively engaging your community, utilizing your skills, and leveraging the power of online platforms, you can become a powerful force for change in the fight against Parkinson's. Together, we can raise awareness, drive research progress, and advocate for a brighter future for all YOPD patients.

    Let's join forces and fight for a cure!

  • 01/11/2024 2:40 PM | Anonymous

    Caring for the Care Partner: A Two-Way Street in Young Onset Parkinson's

    Living with Young Onset Parkinson's (YOPD) is a journey, and it's one you rarely take alone. Whether you're the person with YOPD or the amazing human beside them, the road can be filled with bumps, triumphs, and everything in between. But here's the thing: it doesn't have to be a solo trek. In this two-way street called YOPD, strong care partners and mindful people with YOPD make the journey smoother for everyone.

    For the Care Partner: Supporting with Strength and Grace

    Being a care partner is a role filled with love and resilience, and can sometimes be overwhelming. But guess what? You, the rockstar care partner, are vital to this journey. Your support, love, and unwavering presence can mean the world to someone living with YOPD. But here's the catch: you can't pour from an empty cup. Taking care of yourself is just as crucial as taking care of your loved one.

    So, how do we find the balance between helping your loved one and taking care of yourself? How do we stay strong, mentally and physically, while ensuring our loved ones with YOPD feel supported and appreciated? Buckle up, because we're diving into the world of two-way care in Young Onset Parkinson's.

    Here are some tips to navigate this path with both mental and physical strength:

    • Embrace the Team Spirit: Remember, you're not alone! Connect with other YOPD care partners through online communities like YOPN or local support groups. Sharing experiences and tips can be a lifesaver.

    • Prioritize Your Wellbeing: Self-care isn't selfish, it's essential. Schedule "me-time" for activities you enjoy, whether it's a brisk walk, a yoga session, or simply curling up with a good book. A recharged you is a better support system.

    • Communicate Openly and Honestly: Talk to your loved one with YOPD about their needs and preferences. Don't be afraid to ask for help – that's what teams are for! And remember, it’s okay to ask for clarification. Clear communication avoids misunderstandings and strengthens your bond.

    • Fuel Your Body, Fuel Your Mind: Eating healthy, exercising regularly, and getting enough sleep are non-negotiables. These nourish your body and mind, giving you the stamina to face anything YOPD throws your way.

    • Set Boundaries, Embrace Support: You're not alone! Don't be afraid to say "no" when you need a break. Lean on family, friends, and support groups. Remember, asking for help is a sign of strength, not weakness.

    • Invest in Knowledge: Learn about YOPD, its symptoms, and available treatments. The more informed you are, the better you can navigate its challenges and support your loved one effectively.

    • Celebrate the Victories, Big and Small: Every positive step, every smile shared, every hurdle overcome – these are victories worth celebrating. Acknowledging progress keeps spirits high and fuels the journey forward.

    • Embrace Your Own Journey: YOPD impacts everyone differently. Allow yourself to feel your emotions, and remember, it's okay to grieve, to be frustrated, and to have moments of doubt. Seek professional help if needed, and prioritize your own mental well-being.

    for the Person with YOPD: Showing Appreciation and Respect

    Living with YOPD can be isolating, but remember, your care partner is in your corner. 

    Here are ways to show your appreciation and keep the two-way street thriving:

    • Express Gratitude: A simple "thank you" goes a long way. Let your care partner know how much you appreciate their support, big and small gestures alike.

    • Communicate Your Needs: Don't bottle up your frustrations or challenges. Open communication lets your care partner understand how best to support you.

    • Be Patient and Understanding: YOPD can be unpredictable. Be patient with yourself and your care partner, and remember, everyone is doing their best.

    • Stay Involved in Decisions: As much as possible, be involved in discussions about your care plan and treatment options. You're the captain of your own ship, and your voice matters.

    • Offer Help In Return: Even with YOPD, there are things you can do. Maybe it's folding laundry, making coffee, or simply offering a listening ear. Sharing the load strengthens the partnership.

    • Celebrate Together: Share your victories, big and small, with your care partner. Their happiness is your happiness, and vice versa.

    • Respect Their Boundaries: Your care partner needs time for themselves too. Respect their need for breaks and don't guilt them for taking time for their own well-being.

    • Remember, You're Still You: YOPD may be part of your journey, but it doesn't define you. Keep your passions alive, engage in activities you enjoy, and remind yourself and your care partner that you're still the bright, vibrant individual you've always been.

    The YOPD road may have its twists and turns, but with mutual respect, open communication, and a commitment to well-being, care partners and people with YOPD can navigate it together, stronger and more united than ever.

    To the care partners: Thank you for being the unwavering heroes of these YOPD journeys. Your dedication and love are both an inspiration and invaluable. Remember, you, too, are not alone in this. The YOPN community offers a space for knowledge, resources, and support waiting to embrace you. 

    Together, let's make this two-way street of YOPD a journey of shared strength, resilience, and unwavering love.

  • 11/29/2023 12:13 PM | Anonymous

    8 Tips for a Stress free Holiday Season - YOPN Member Eric Slominski

    Now that the Thanksgiving leftovers are gone, and you've waved goodbye to family, it's time to start preparing for the homestretch of the year. As kids, we tend to remember this time of year fondly, but now as adults, the warm memories of good times and the exciting anticipation of Christmas morning may have been replaced with excessive stress and even loathing. The stressors that can contribute to this are many. 

    Over-hyped - Right after Thanksgiving, Christmas songs begin playing, decorations go up at many homes and businesses, and Black Friday and Cyber Monday kick off holiday shopping. The insanity is practically inescapable, and the outsized expectations of the holiday can often lead to burnout and disappointment. 

    Commercialization - With religion playing an ever-lesser role in families, it seems that capitalism has taken the opportunity to step in and offer an alternate emphasis on the gift-giving aspect of the holiday. But it's all too easy to go overboard and spend too much on things nobody really needs. With the steady allure to spend, spend, spend it's no wonder it's so easy to end up cranky, exhausted, and broke. 

    Too many temptations - From holiday parties full of tasty treats and alcohol as well as visits from well-intentioned friends and neighbors who often bring more treats, even the most disciplined among us can struggle and may eventually cave to temptation.

    Traveling - Traveling during the holidays can be a nightmare. Traffic jams, waiting in line, and crowds. Who needs that? 

    Too little sunlight - Being outside in the sunshine is simply good for you. Unfortunately, there's precious little of it this time of year. This can lead to or worsen mental health problems for some. 

    But it doesn't have to be this way! To me, the holidays are a time to relax and appreciate all the good things we have in our lives. Also, it's a time to create great memories and have fun with friends and family. Particularly for those of us with Parkinson's Disease, connecting with people who understand us can help us remember that we're never truly alone and do wonders for our mental health. Organizations like Young Onset Parkinson's Network (YOPN) can help you get plugged into a thriving community of individuals who are thriving despite Parkinson's Disease. 

    Read on for eight tips for making it through the holidays with sanity intact:

    Tip # 1 - Embrace Moderation - If we can adopt a mindset of moderation, that is instead of eating 3 cookies, just savor one. Or instead of eating 3 huge pieces of each cake, just have a small slice of each. That way, you can enjoy the tastes of the holidays, without going too over-board. And if you overdo it...don't stress out about it. Just vow to put in some extra time on the bike or sneak in some extra burpees (see Tip #3 below). 

    Tip # 2 - Do something nice - Successful management of Parkinson's Disease often requires us to spend a lot of time thinking about ourselves. This is not necessarily selfishness; Parkinson's is a time-consuming disease to manage. However, I don't know about you, but if I'm not careful I can really start to take all the good things in my life for granted. Especially this time of year, it's good to remember those that are less fortunate. Know someone going through a tough time? Consider surprising them with a random text or call. You may be surprised how much a simple thing can brighten a day. Simply letting someone know you are available for a chat can make a positive difference. It seems counter-intuitive, but being less self-centric can really end up helping us in the end. Thinking of others can remind us to be grateful for what we have, leading us to be more satisfied with our lives overall. 

    Tip # 3 -Don't stop moving - I'm sure exercise is already part of your daily routine (it IS ...right?). But in case you somehow don't know by now, exercise is the absolute best way to banish stress. This, along with all its undeniable benefits for People with Parkinson's (PwP). For PwP, exercise is an even more important part of your overall holiday survival strategy. But between all the traveling, finding the perfect gift for loved ones, decorating, parties, and other holiday activities, it's easy to get knocked out of your normal routine. Don't let that stop you from squeezing some movement into your day. Only got 10 minutes? Just do something. How about...3 sets of 25 air squats? Say 2 hours later you have a spare you have a spare 5 minutes. How about doing as many pushups as you can? In the next opportunity do planks. You see? In almost no time at all you've managed to squeeze in a mini-workout! Even a little exercise can go a long way towards making you feel and move better.

    Tip # 4 - Establish a Budget - To help keep your spending reined in try to create a budget ahead of time to decide how much to spend. There are programs to purchase out there that can help but a simple spreadsheet can work fine. Even if you later decide that it's just too much effort to add in each individual purchase, having gone through the mental exercise will have given you an idea of what you want to spend which will have helped to keep it under control. 

    Tip # 5 - Communicate gift-giving plan ahead of time- Agreeing beforehand what the gift-giving expectations are with the adults can alleviate a lot of unnecessary stress. Many adults I know would rather focus on seeing family rather than stress unnecessarily over what to get each other. 

    Tip # 6 - When driving, leave early...and be flexible - When driving pack ahead of time and leave as early as you feasibly can. Northern VA, where I live, is notorious for unexpected delays. A very early departure at least reduces the chances of a traffic jam spoiling your plans. If you do get delayed, try to keep an open mind about exploring something potentially interesting off the next exit and getting back on the highway when the traffic dies down a bit.

    Tip # 7 - Embrace hibernation mode - This time of year I tend to get really great sleep. Maybe it's the cozy feeling of being warm in bed while the weather outside is so cold and wet? Whatever it is, great sleep can help combat some of the stress common this time of year. To get the best sleep possible, don't eat or drink too close to bedtime. It's generally accepted that a light snack before bed is ok. Alcohol to me is an absolute no-no before bed as my sleep is just not nearly as rejuvenating.

    Tip # 8 - Mental hack to triumph over short-day anxiety - If you're one of those folks like me who can feel a bit trapped when the days get so short you can maybe try a little mental trick to help you out. Remember that the shortest day of the year coincides with the first day of Winter. As that day falls on December 21st or 22nd annually, the days are already getting longer by the time it's Christmas morning! It's location-dependent (science!...no actual math!), but you'll expect to receive about 2 more minutes of lovely daylight each day until summer! And you thought you didn't get anything good for Christmas?
  • 10/31/2023 12:55 PM | Anonymous

    A simple "thank you" can mean so much more when you express it in just the right way.

    • Gratitude is a powerful emotion that can strengthen relationships and make people feel loved and appreciated. But how do you show it in a way that is meaningful to your care partner, friends, or loved ones? It’s actually simpler than you think: learn how to speak their love language. 

      What are Love Languages?

      A love language is the way a person prefers to express and receive love. The five love languages are: 

      1. Words of affirmation
      2. Quality time
      3. Receiving gifts
      4. Acts of service
      5. Physical touch
    • Once you identify someone’s love language, you can tailor your expressions of gratitude to speak to them in a way that they will understand and appreciate. People can have anywhere from one primary love language to a combination of two or three that resonate the most with them.

      Here are some tips and examples for showing gratitude based on each of the five love languages:

      Words of Affirmation

      People with this love language value: verbal acknowledgments of affection, compliments, words of appreciation, verbal encouragement, and frequent written communication (like texting or social media engagement)

      Tips for Expressing Gratitude

      • Tell them how much you appreciate them and all that they do 
      • Mention specific things they’ve done or said to you 
      • Write them thank you notes
      • Send them random, unexpected texts expressing your gratitude to brighten their day

      Examples & Ideas:

      1. “Thank you for being so patient and kind on my off days. Your support means more to me thank you know, and I wouldn’t be able to get through them without you.”

      2. “I’m so lucky to have a friend like you. You always know how to make me laugh and feel better when I’m down.”

      3. “You’re the strongest person I know. You inspire me to be a better person, and I wouldn’t be where I am today without you.”

      Quality Time

      People with this love language value: spending time together, active listening, eye contact, undivided attention, and full presence during meaningful conversations or while participating in recreational activities together

      Tips for Expressing Gratitude:

      • Put away your phone and minimize other distractions while spending time with them
      • Make plans for dates or other activities that you can enjoy together 
      • Give them your undivided attention during conversations 

      Examples & Ideas:

      1. Attend a YOPN Community Gathering or Speaker Series Event together, then go out to dinner afterward.
      2. Make plans for activities outside of your normal routine that fit their interests, like trying out a cooking class or visiting the local museum.
      3. Set aside a little bit of time each day — even if it’s only 5-10 minutes — where you can leave your phones in a different room and be present together.

      Receiving Gifts

      People with this love language value: visual or tangible symbols of love, the deliberate and meaningful process behind gift-giving, and objects bearing sentimental value

      Tips for Expressing Gratitude: 

      • Don’t be afraid to give small gifts, even if it’s just a token of appreciation
      • Consider their unique interests or hobbies when choosing a gift 
      • Take extra time to pick items that are thoughtful and meaningful
      • Gift them something you’ve noticed they want but won’t get for themself 

      Examples & Ideas: 

      1.  Surprise them with a small care package of their favorite   snacks and drinks “just because.”
      2.  Save a small reminder of your last activity together to give   them later. It could be anything from a pretty rock you spotted on a hike to movie ticket stubs.
      3.  Notice when they’re going through a rough patch and cheer   them up with something small — like a cozy sweatshirt   featuring their favorite sports team, or a keychain they can  carry with them as a reminder of your love and support.

      Acts of Service

      People with this love language value: when someone goes out of their way to make life easier or more comfortable for them, being helped, and favors, no matter how small

      Tips for Expressing Gratitude: 

      • Help them with chores or errands — especially the ones they don’t enjoy doing
      • Do things for them without being asked 
      • Offer to take care of things that would otherwise require them to get up 

      Examples & Ideas:

      1.  Cook one of their favorite meals, then take care of the dishes and clean up while they sit back and enjoy dessert.
      2.  Notice when they’re stressed and offer to take over their least favorite chores to ease their workload.
      3.  Try to do one small thing for them each day — like throwing away their empty coffee cup, retrieving their mail, refilling their water bottle, or clearing their plate. 

      Physical Touch

      People with this love language value: warmth, comfort, and physical signs of affection like holding hands, cuddling, hugging, and kissing

      Tips for Expressing Gratitude:

      • Initiate touch during conversations with them 
      • Reach for their hand when you’re walking together 
      • Greet them with handshakes, hugs, kisses, or pats on the back

      Examples & Ideas:

    • 1. Reach across the table and squeeze their hand(s) as you express your gratitude for them. (See Words of Affirmation for inspiration.)

    • 2. Display playful physical affection when you’re out together, like punching them lightly on the shoulder, playing with their hair, or bumping your leg into theirs.

    • 3. If you’re in a romantic relationship, initiate frequent intimate touch like caressing, snuggling, and kissing.

    Gratitude Ground Rules


    One of the most important things to keep in mind is that these tips and ideas won’t work unless you abide by the following ground rules:   

    1. Always be sincere and genuine 
    2. Be specific and avoid generic statements 
    3. Show gratitude consistently, not just every now and then.
    4. Don’t keep score
    5. Remember to be just as grateful for the little things as you are for the big ones

    Sometimes expressing gratitude can be tricky, especially when it's to the ones we care about the most. Learning their love language and how to speak it can help us show appreciation in the ways that are most meaningful to them.

  • 10/02/2023 3:20 PM | Anonymous

    YOPN Treasurer Mark Kohus wanted to prove that it's possible to live actively and well with YOPD — so he climbed Africa's tallest mountain.

    Back in 2018, 46-year-old Mark Kohus found out he had Young Onset Parkinson’s. Like many others, he didn’t know anyone else who shared his experience and wasn’t sure what to do next. He got involved in boxing classes for people with Parkinson’s but felt out of place in a sea of senior citizens. 

    As Mark continued searching for ways to stay active, he found that resources for the Young Onset Parkinson’s subset were few and far between. He didn’t want his life to be like that of the older people he saw, so he persisted in his quest for an active, PD-friendly lifestyle. Then he met YOPN Founder Anna Grill, and everything changed. 

    “We met at a Davis Phinney Foundation event, and her organization sounded like the perfect fit,” he recalls. “I ended up joining the board a little over a year ago, and it’s been great. We’re reaching people who want to be active and not sit and wait for PD to take everything from them. It’s exhilarating and exciting to discover there are a ton of people out there that are experiencing the same thing.”

    Soon after joining the board, Mark started getting emails about an opportunity to climb Mt. Kilimanjaro with a team organized by the Michael J. Fox Foundation. Despite his advocacy for staying fit and active with Parkinson’s, he dismissed the messages. Who would be crazy enough to do that with PD?

    And so the emails kept coming. And Mark kept ignoring them…until one day he didn’t. “Why not?” he thought to himself. 

    “The application process was simple,” he recalls. “There weren’t any strict requirements, and the only question was basically ‘Are you willing to do this?’”

    “Then I texted my wife to tell her I’d applied. I expected her to ask more questions, but she was immediately super excited and all for it. She’s usually very cautious, so it was motivating for her to react like that, which gave me the validation I needed to really go for it.”

    Preparing to Climb

    After Mark’s application was accepted in December 2022, he had until August of 2023 to prepare for the climb. Little by little, he began adding more hiking, cardio, and strength training to his workout routine. 3-mile hikes eventually grew into 11-mile hikes with a weighted backpack. Throughout the training, he and the other accepted applicants met over Zoom to get to know each other and exchange training tips.

    “About six weeks before, I went to Colorado to get a sense of how my body would react to the altitude,” Mark explained. “Since I live pretty much at sea level down here in Kentucky, I wanted to try hiking in an environment more similar to the actual climb.” 

    His body handled the altitude change well, which further boosted his confidence about taking on Kilimanjaro. Then, before he knew it, Mark found himself gazing down at its peak as his flight approached the  Kilimanjaro airport.

    The Real Journey Begins

    “I could see the top of the mountain from the clouds above and just thought, ‘Wow, I’m gonna be on top of that mountain,’” he remembers. “It was both intimidating and inspiring — it really hit me emotionally at that point.”

    When all 9 climbers finally met in person, Mark described feeling an “instant connection” between the group since Parkinson’s Disease had touched each of their lives in one way or another. Five were either care partners or family members climbing to honor their loved ones, three (including Mark) were diagnosed with YOPD, and one was a 67-year-old woman who had been diagnosed with standard PD. 

    “She was a constant inspiration for everyone,” he said. “She was always ready to go and always out in front of the group with the guides. We kept reminding ourselves that if she can do it, we can do it.”

    And so the group set off on what would be a 7-day trek: Five and a half days to make it to the summit, and one and a half to get back down. 

    “The sense of camaraderie we developed was incredible,” Mark said. “Since we were all connected to PD in some way, everyone understood what the other participants were going through, and was patient and understanding when someone needed to take a break. We all helped each other out and recognized when meds needed to be re-upped and everything.” 

    “There were no built-in, special accommodations for those of us hiking with Parkinson’s — we just treated each other normally and followed the standard precautions just like any other climber would.”

    The Challenges Along The Way

    The third day presented the toughest challenge for Mark. After climbing from 12,000 to 15,000 then back down to 13,000 feet, the altitude sickness hit. 

    “We went to 15 [-thousand feet] to get a feel for the altitude we’d experience the next day, but went back down so we could rest and sleep at a lower altitude,” he explained. “I had a constant, low-grade headache and not much of an appetite, but I remembered what I’d read about altitude sickness before and how it was important to eat.” 

    Despite his exhaustion, Mark was able to have some food that night and was relieved to wake up feeling refreshed and energized for the day ahead.

    “It also helped talking to the other folks about it the next day and hearing they were experiencing the same thing — it had been a hard day for everyone, but after talking about it we knew we were going to pull through it together.”

    The Summit

    Finally, day 5 had arrived. After all of their hard work, the self-dubbed “Kili-9” set out to conquer the summit of Mt. Kilimanjaro…at 11 pm. The plan was to hike through the night and arrive at the top after sunrise. The group donned their headlamps and stared off into the pitch darkness, one foot after the other.

    “It was a step, step, step slow walk,” Mark remembers. “It was a pretty busy night on the mountain — there were a lot of other groups climbing at the same time, so we could see all of their headlamps up above and down below us.” 

    The wind chill was close to 0 degrees Fahrenheit, and after some time, the initial excitement wore off and the group was losing steam. 

    “Then, finally, we caught our first glimpse of the sun slowly peeking up from the curvature of the Earth,” Mark said. “The sun coming up warmed our souls and spirits and off we went. It gave us the second wind we all needed and there was this unspoken feeling of ‘I’m doing this no matter what!’ all throughout our group.”

    As soon as the Kili-9 took their first steps onto the summit, it was mission accomplished. As they took in the 360-degree views of the scenery from on top of the world, they allowed the significance of their accomplishment and teamwork to wash over them. Mark thought back to when he flew in and saw where he was standing now from the airplane window.

    The Power to Live Well (Everyone Has It)

    Although his initial reaction to climbing a mountain with YOPD was “Who would be crazy enough…?” Mark proved to himself that he had the power to take on and achieve a seemingly impossible goal. 

    “It’s the hardest thing I’ve ever done physically or mentally,” he recalls, “but knowing that I have PD and can still do these things that healthy people can do — and even some can’t — was absolutely worth it.”

    For readers interested in making a climb like his, Mark has the following advice:

    • Find a good organization or a good group of friends and/or family that you know and trust will support you along the way.
    • Enlist a reputable guide company or an experienced individual who can help navigate and prepare you for the journey.

    Mark hopes that his story will inspire and encourage other YOPD’ers to pursue big goals and take on those kinds of intimidating, yet rewarding challenges, without letting PD discourage them from living and experiencing their lives to the fullest.

  • 08/31/2023 11:28 AM | Anonymous

    PD meds may have complicated names, but we put together a simple breakdown of how some of the most common ones work.

    Disclaimer: This post is intended to be strictly informative and is in no way offering medical advice. Talk to your doctor to determine which treatment course is best for you.

    Although there is no definitive cure (yet) for Parkinson’s or Young Onset Parkinson's, medical research has progressed leaps and bounds in the past decade to provide us with a wide range of effective treatment options. However, doctors and scientists have a habit of choosing complex, hard-to-pronounce names for the drugs they develop, which can make learning about them more intimidating than necessary. So, we decided to break down how some of the most common ones work to help everyone understand them a bit better:

    Amantadine - Originally developed as an antiviral to prevent influenza, Amantadine was found to improve mild Parkinson's symptoms like tremors, akinesia, and rigidity. 

    Anticholinergics - Anticholinergics may be recommended to younger patients (like those with YOPD) who do not have significant akinesia or trouble walking to reduce bothersome tremor symptoms.

    COMT Inhibitors - Catechol-O-methyl transferase (COMT) inhibitors may be used to prolong and enhance the effect of levodopa. They're primarily used for people who experience "wearing off" periods of motor fluctuations at the end of their levodopa dose. They have no beneficial effect when taken alone.

    Dopamine Agonists - Dopamine agonists directly stimulate dopamine receptors in the brain. Clinical trials have found them effective for controlling Parkinson's symptoms but can be slightly less effective than levodopa and result in more side effects. 

    Istradefylline - Istradefylline can be used to treat motor symptoms that can happen when levodopa "wears off" (similar to COMT inhibitors). It was approved for use in the United States in 2019, so more research is needed to fully understand its risks and benefits relative to other medications.

    Levodopa - Levodopa is currently the most effective drug for treating Parkinson's symptoms and is particularly effective in treating those with bradykinesia. Tremor and rigidity have also been found to respond to levodopa treatment.

    MAO B Inhibitors - Monoamine oxidase type B (MAO B) inhibitors work by blocking the effect of enzymes that inactivate dopamine and can modestly reduce PD symptoms. They also may allow dopamine to remain in the brain for a longer period before being broken down.

    Knowledge is power, and learning more about how different drugs work to relieve and treat symptoms can be comforting when you enter the unfamiliar territory of Young Onset Parkinson’s. As stated above, this article is strictly informational and not intended to be taken as medical advice. Talk to a licensed physician to determine what treatment options are best for you or your loved one.

  • 08/18/2023 11:41 AM | Anonymous

    We all know that we need food, water, safety, and shelter for basic survival — but we tend to forget one critical need; the one that helps to give our lives meaning: community.

    When faced with difficult situations, many of us tend to withdraw from friends and family or isolate ourselves as a coping mechanism. This is often true for newly-diagnosed Parkinson’s patients, especially those in the young-onset subset. Such a significant life change is overwhelming, and sometimes our knee-jerk reaction may be to ignore it or pretend that everything is okay. 

    The problem is that it’s a short-term solution that ultimately creates distance between ourselves and the people we care about — which is exactly the opposite of what we need. Being part of a community can have positive effects on our physical, mental, and emotional health, and is, in fact, the most important need humans must meet after securing food, water, shelter, and safety (according to psychologist Abraham Maslow). 

    The 3 biggest benefits of establishing community connections we’ve found through the Young Onset Parkinson’s Network include: 

    1. Reducing Feelings of Loneliness

    When we struggle with big, life-altering changes, many of us unconsciously assume that we’re the only ones who feel the way we feel or that no one can really understand our situation. This is especially true for those affected by a rare disease like YOPD, whether you’re a patient, care partner, family member, or friend. 

    Joining a community of people facing similar challenges serves as a constant reminder that you’re not alone, and gives you a safe space to share your true self with others. In turn, being accepted by others fosters a healthy sense of belonging.

    Feeling accepted and like you belong to something bigger can then make it easier to take care of yourself and participate in activities that improve your physical health.

    2. Getting The Right Support

    While we may want to believe it’s possible to get all the support we need from a significant other or a handful of close friends or family members, that’s a lot for one person (or even a small group) to be responsible for. 

    A community of people with similar experiences can sometimes offer more appropriate advice or tell you exactly what you need to hear in a way that a husband or wife can’t. Oftentimes, support coming from these groups can also feel more validating since it’s coming from someone who “gets it.”

    Lifelong friends may struggle to relate when you recall what happened on your last “off” day, but you may find unexpected comfort in hearing a total stranger say “That happens to me, too! Here’s what I’ve found that works…”

    This doesn’t mean you should completely stop relying on your spouse, friends, or family members for support — this is more to say that joining a community can balance out your larger support system and allow you to seek advice and comfort from multiple perspectives.

    3. Finding Purpose

    Not only are communities a good way to get the support you need, but they also provide you with opportunities to find purpose. For example, when we spend time among a group of people, we tend to fall into natural roles. 

    Perhaps you’re the one people go to for advice about intimacy and relationships with YOPD, or you find you enjoy spreading the word and inviting new members to join. Or maybe you’re the quiet observer who soaks up all this new information and uses it to improve yourself and your personal relationships. 

    These kinds of roles can give you a sense of purpose through helping others, both of which can breathe new meaning into your life. 

    Allowing yourself to be vulnerable and open to new people and experiences can be frightening and difficult — but the rewards of joining a community far outweigh the initial fear and discomfort. Being part of something larger than yourself sets you up to live a more enjoyable life by establishing meaningful connections, growing your support network, and rediscovering your purpose. 

    Want to see what it’s all about? Click here to join the Young Onset Parkinson’s Network for free today.

  • 07/11/2023 4:10 PM | Anonymous

    Not only is knowledge empowering, but it's also a strong antidote for helplessness. In times of despair, let the reminder of how far we've come in PD research & treatment be the light that guides you back toward hope.

    Let’s not beat around the bush: dealing with Parkinson’s can be discouraging. Whether you’re a patient, care partner, family member, or friend, the symptoms can be frustrating and it’s not uncommon to feel like you have no control over the situation. The good news is that there’s a reliable antidote for those feelings of helplessness: empowering yourself through knowledge. 

    PD research has advanced by leaps and bounds since Parkinson’s-like symptoms were first described in ancient texts — and the whole global community continues to make valuable contributions. 

    Here’s a timeline of some of the most notable research milestones we’ve reached throughout history: 

    2,000 BC - 425 BC - Brief descriptions of PD-like symptoms appear across many ancient texts. 

    169 AD - Galen, an ancient Roman anatomist & experimental physiologist, distinguishes the differences between “resting” and “intentional” tremors in his book “De Tremore, Palpitatione, Convulsione et Rigore.”

    1228 - During the Jin-Yuan Dynasty, a Chinese physician named Zihe Zhang recorded a possible case of PD describing symptoms including tremors, stiffness, unexpressive facial features, loss of dexterity & finger movements, depression, a chronic progressive course, and poor response to drugs.

    1690 - Clinical symptoms of PD are described in a textbook published by Hungarian physician Ferenc Papai Pariz, more than 120 years before James Parkinson published An Essay on the Shaking Palsy.

    1817 - English surgeon James Parkinson publishes An Essay on the Shaking Palsy. This work is widely accepted as the first official identification and description of “paralysis agitans.”

    1872 - French neurologist Jean-Martin Charcot renames “paralysis agitans” Parkinson’s Disease, after James Parkinson.

    1899 - French physician Édouard Brissaud (who studied under Jean-Martin Charcot) is the first to suggest that PD pathologically originates from a damaged substantia nigra. 

    This part of the brain controls movement, so when nerve cells in the substantia nigra die or become impaired, they cannot produce dopamine and subsequently cannot facilitate regular, healthy movement. 

    1912 - German-born American neurologist Frederick Lewy observes aggregated inclusions or abnormal aggregations of protein that develop inside cells affected by Parkinson’s Disease. 

    1919 - Konstantin Tretiakoff, a Russian neuropathologist, renamed Frederick Lewy’s aggregated inclusions “Lewy bodies,” and determined that these Lewy bodies are located in the substantia nigra in cases of PD.

    1960 - Oleh Hornykiewicz, an Austrian biochemist, found that Parkinson’s patients had reduced dopamine levels in the striatum. Dopamine signals in this part of the brain are critical for things like motivation and motor learning.

    1961 - French Canadian neurologist André Barbeau finds Levo-dopa (L-Dopa, a direct precursor to dopamine) to be an effective treatment for improving Parkinson’s symptoms.

    1967 - Dr. Melvin D. Yahr introduced the Hoehn-Yahr scale for staging PD progression: 

    1987 - French-Algerian neurosurgeon Alim-Louis Benabid introduced deep brain stimulation (DBS) as a surgical treatment for controlling PD tremors.

    1997 - 85 years after the first observation of Lewy bodies, scientists identified over 50 proteins in this aggregated inclusion with α-synuclein being the most important component. 

    That same year, Michael Polymeropoulos identified the α-synuclein gene (SNCA) as the first causal gene of PD, revealing future opportunities for genetic screening research.

    2001 - The first double-blind control trial of a cell-based therapy for PD is conducted. 

    2003 - German anatomist Heiko Braak proposes a pathological staging of PD in which he hypothesizes sporadic PD is caused by a pathogen entering the body via the nasal cavity, which is subsequently swallowed and reaches the gut, initiating Lewy pathology (LP) in the nose and digestive tract.

    2006 - Chinese Dr. Zhuohua Zhang and his colleagues identified a link between the PINK1 and DJ-1 genes, demonstrating the potential for genetic inheritance of YOPD.

    2009 - The Parkinson’s Foundation launched the Parkinson’s Outcomes Project; the largest-ever clinical study of the disease with over 13,000 participants across four countries.

    2023 - An international coalition of scientists led by The Michael J. Fox Foundation discovered a biomarker for PD — abnormal α-synuclein proteins in brain and body cells. The discovery opens up a world of possibilities for improved treatment, further research, and the potential for newly-diagnosed individuals to never advance to full-blown symptoms.

    If you’re still looking for hope after reading through this impressive progression of our PD knowledge over time, just think about the kind of technology available to us today. Think of how far we’ve come in terms of treatment, discovering drugs and interventions that allow those with PD and YOPD to live higher-quality lives. With all of the effort and care that has been poured into research over the years, it’s impossible not to look toward the future with hope.

    Sources: 

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5636740/

    https://www.parkinson.org/advancing-research/finding-cure/research-milestones

    https://www.michaeljfox.org/news/breaking-news-parkinsons-disease-biomarker-found

  • 05/30/2023 1:04 PM | Anonymous

    Even though uncertainty can be frightening, you have the power to change your mind — and the rest will follow.

    Before Mike Quaglia was diagnosed with YOPD, he was hard at work making a name for himself in sales. After leaving the family business for a new position, he quickly rose through the ranks to achieve the title of #1 salesperson and was later promoted to manager.

    He excelled in connecting with clients and enjoyed maintaining relationships with them. In fact, his interpersonal talents and people skills played a big role in his career success. Hosting golfing trips and treating clients to dinner was arguably his favorite part of the job. Mike had his sights set on running the whole company if things kept going his way. 

    But they didn’t. And if they had, then he wouldn’t have this story to share.

    In October of 2006 at age 42, Mike found out that he had Young Onset Parkinson’s Disease. Determined not to let it get in the way of his plan to become CEO, he pushed himself to continue on like nothing happened. That worked out for a while, but as time went on, symptoms began to pop up and interfere with his performance.

    “It was like Parkinson’s kicked my brain,” he recalls. “It was all mental; I didn’t experience any of the physical symptoms back then. I just became more paranoid, depressed, and apathetic. I stopped communicating with everyone.”

    Mike began to jump between jobs every couple of years, which he’d never done before. He withdrew from friends and family and watched the connections he worked so hard to cultivate crumble bit by bit. 

    But it’s not that he suddenly and randomly decided not to care anymore — it’s that he was grappling with the mental and emotional implications of a disease over which he had no control. 

    “I went from being really communicative to basically falling off the face of the Earth,” he remembers. “I hit the bottom around 2016 or 2017. But even though I had stopped talking to her the way I used to, my wife supported me through the whole ordeal. And I also have some really great friends and business partners that stuck by me, and who I still talk to to this day.”

    With the support of his wife and friends behind him, Mike was ready to take some small steps toward positive change. The first was a conversation with fellow YOPD patient Heather Kennedy about separating thoughts from the self. 

    “We talked about how to become more aware of our thoughts, understand they’re not part of ourselves, and let them go,” he said. “I knew that before, but talking to her just really solidified that concept for me.”

    Following that conversation, Mike’s curiosity about the relationship between thoughts and feelings prompted him to give therapy a try.

    “I went through three therapists before I found one I couldn’t BS,” he chuckled. “He helped me organize my thoughts and change my perspective. He also helped me understand how my brain is just reacting to things that happened in the past, and how to use that to stop worrying so much about the future.”

    Not long after, small steps turned into bigger steps. 

    Mike began to open back up to his wife again, which led to the couple training for and running the Boston Marathon together in 2019. Not only did it set the tone for a more physically healthy lifestyle, but training also gave them the chance to spend more quality time together. 

    And while he didn’t return to his pre-diagnosis career in sales, Mike reignited his passion for connection and meeting new people through hosting podcasts. In fact, you can listen to him and his team interview guests about various topics relating to YOPD on the YOPN Living Well Starts HereSM podcast.

    Mike’s experience serves as a hopeful reminder to the recently diagnosed that it’s always possible to find joy and fulfillment — even when your life takes an unexpected turn. When asked to sum up what he’s learned to share with fellow YOPD’ers, his advice is: 

    1. Don’t shut yourself off from the people that love you. 

    2. Remember you’re still the same person.

    3. Find your passion and go after it, regardless of whether or not it makes you money.

    4. It’s okay to reorganize your mindset and your plans — the rest will follow.

  • 04/27/2023 11:33 AM | Anonymous

    Sometimes our greatest challenges turn out to be blessings in disguise.

    Maintaining relationships is a common challenge for almost everyone. Keeping up with close friends, nurturing romantic partnerships, and staying connected with family all take significant work. While throwing a Young Onset Parkinson’s diagnosis into the mix can make that challenge all the more difficult, it can also end up making those relationships richer, deeper, and more meaningful. 

    Melissa was diagnosed with YOPD in August 2020, right at the height of the pandemic. The news was hard to handle on top of all of the uncertainty and upheaval caused by Covid, so naturally, she turned to her boyfriend for support. Two days later, she discovered that he was cheating on her. Needless to say, he didn’t handle the diagnosis very well. 

    Newly single, Melissa returned to the dating scene in extra-hard mode: Not only did she have to contend with the difficulties of the lockdown, but she also had to navigate dating as a single mother of children with special needs in addition to her diagnosis. 

    “It’s actually harder to date as a special needs parent than as a PD parent,” she recalls. In her experience, sexual partners were still eager for intimacy and interested in learning how to make it work despite her physical limitations. 

    “It definitely takes more planning,” she said. “It takes a partner who is patient and understands the symptoms and their unpredictability. There are times when that gets in the way and it can be disappointing, but I’ve had a pretty good response to it [intimacy] so far since my symptoms aren’t as progressive.”

    Melissa also touched on the importance of being open and honest about YOPD. To maintain healthy relationships in general, she says “You need to be open to sharing your reality in a realistic way.”

    Approaching intimacy with this mindset helped her to relax and enjoy herself since she didn’t have to worry about hiding that part of herself from her sexual partners. 

    Beyond sexual relationships, openness and honesty made positive impacts on her friendships and family relationships, too. 

    “My kids are really open about it [YOPD] and will talk openly about it in front of other people like it’s normal, so it helps other people adjust and get more comfortable with my diagnosis,” she said. “That really helps when I’m meeting up with friends that I haven’t seen in a long time that might not know about it yet, especially if I’m having an ‘off’ moment in front of them.”

    While being upfront about her experience has helped ease the tension and bring her closer to some, Melissa notes that others can still have a hard time understanding and accepting her condition. 

    “I talked to my Dad about it one day and it was really hard for him to swallow. But I was able to explain to him that I’m still happy and living a high-quality life — and that I may even be happier now than I was before the diagnosis,” she recalls. “Sometimes you have to work with people to help them see a different perspective.”

    The past three years of living with YOPD have helped Melissa to develop a more positive outlook on life, strengthen her relationships, and achieve deeper levels of personal growth. When faced with challenges that initially seemed impossible to overcome, she focused on their learning opportunities and now looks back at her progress with gratitude.

    Whether it’s about romantic relationships, sex, friendships, or your relationship with yourself, Melissa recalls the most important piece of advice she’s ever received: Take advantage of the now.

    If you enjoyed learning about Melissa’s story and want to learn more about living well with YOPD, Young Onset Parkinson’s Network members get exclusive access to speaker series events, virtual community gatherings, and more. Click here to join for free today.

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