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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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  • 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.

  • 03/31/2023 9:37 AM | Anonymous

    Have you ever wondered where all the official PD symbolism comes from, or why April was specifically chosen to celebrate Parkinson's Awareness Month? 

    The answer is that it’s the birth month of James Parkinson, the London physician who was the first to describe a PD case in 1817. At that time, he was most known for authoring a work titled An Essay on the Shaking Palsy in which he described “paralysis agitans.” 

    The name “Parkinson’s Disease” as we know it wasn’t coined until about 60 years later, by French neurologist and professor Jean-Martin Charcot. 

    The first official World Parkinson’s Day was recognized on April 11th, 1997 — Which would have marked James Parkinson’s 242nd birthday. 

    But what about the other iconic symbols associated with Parkinson’s? 

    The Tulip - In 1980, Dutch Horticulturist and Parkinson’s patient J. W. S. Van der Wereld developed a red and white tulip. The following year, he named his prized cultivation after James Parkinson to honor both the man who discovered his disease and 1981 as the International Year of the Disabled. 

    On April 11th, 2005, Van der Wereld’s tulip was named the worldwide symbol of Parkinson’s Disease at the 9th Annual World Parkinson’s Day conference in Luxembourg.  

    Interestingly, the famous stylized tulip logo with leaves shaped like a “P” and a “D” was designed by a Young Onset Parkinson’s patient named Karen Painter. The symbol was universally adopted by the Parkinson’s community in 2010.  

    Logo Description automatically generated 

    The Ribbon - Similar to the pink breast cancer ribbon associated with the Susan G. Komen Foundation, Parkinson’s Disease has a ribbon, too! The official color is grey or silver, depending on who you ask.  

    There’s no official reason provided for the color choice, but some like to think grey was picked to represent the “grey matter” in the brain that’s affected by the disease. 

    The Raccoon - Yes, you read that correctly — PD has its very own mascot: Parky the Raccoon. 

    Parky came about in 2013 when WPC Ambassador Bob Khun decided to travel around the world with a cardboard cutout of a raccoon. Since the animal is only native to North America, the cutout served to capture peoples’ attention so he could spark conversations about PD. 

    According to the World PD Coalition, a few other reasons the raccoon was chosen include:  

    • A raccoon’s distinctive mask represents the “Parkinson’s Mask” 

    • PD can affect sleep, and raccoons are often nocturnal 

    • They’re highly curious, adaptive, and inventive problem-solvers — much like those with PD who implement creative solutions for their limitations in mobility and dexterity 

    You can even visit WhereIsParky.org to find out where Parky is in the world right now. 

    To Sum It All Up - While these icons and symbols are fun, they also serve the greater purpose of spreading awareness about PD. After all, that’s what this month is all about, right?  

    Looking back to see how much we’ve learned about Parkinson’s and how the community has grown since An Essay on the Shaking Palsy was published in 1817, the future of PD awareness and research has never looked brighter.  

    What groundbreaking new discoveries are next? 

  • 03/06/2023 4:28 PM | Anonymous

    Parkinson's Disease doesn't just affect the elderly, and that means disability benefits aren't exclusive to them, either. Even with YOPD, it's important to get to know the basics of Social Security Disability Insurance.

    Disability benefits were created to provide financial support to those who are unable to work or who are losing wages due to non-work-related illness, injury, or pregnancy. If you qualify for benefits, the US government provides a percentage of your income as a method of financial assistance.

    Although most tend to associate disability benefits with the elderly, you may still qualify and take advantage of the program if you have Young Onset Parkinson’s Disease (YOPD). The amount of money you receive varies depending on the severity of your particular case. 

    How Qualification Works

    The Social Security Administration (SSA) provides a list of conditions that qualify a person for disability benefits, called the Blue Book. Based on section 11.06 of the Blue Book, if you’re unable to work for 12 months or longer due to YOPD, you may be considered disabled and qualify for the program.

    If you meet the SSA’s Blue Book criteria, then additional steps are taken to confirm your need for the program’s support. 

    What Criteria Need to Be Met to Qualify?

    You may qualify for disability benefits if you still experience the following despite taking your prescribed treatment for three consecutive months: 

    • Disorganization of motor function in two extremities
    • Extreme difficulty standing up from a seated position 
    • Extreme difficulty balancing while standing or walking
    • Extreme limitations in using the upper extremities

    Or if you have marked limitations and/or difficulty with: 

    • Comprehending and applying information
    • Social interactions 
    • Concentration 
    • Adapting to new situations

    How to File a Claim for Disability Benefits?

    1. Make a list of how your symptoms have consistently impeded your ability to work.

    2. Gather and organize information about your treatment providers and any other notes that relate to your diagnosis.

    3. Talk to your doctors and coordinate with them to certify your qualification through their reports and claim forms.

    4. Fill out the Social Security Disability Insurance (SSDI) claim online or schedule an appointment to do so in person.

    5. Proactively gather and submit your medical records to the SSA to ensure that nothing is overlooked, and make sure to save copies and proof of what you sent in case you need to back up your claim.

    It can take anywhere from three to five months to receive a response to your claim submission, so don’t delay taking the steps above if you believe you qualify. 

    Bottom Line

    These are just the basics for understanding and getting started with disability benefits. The process can be overwhelming and confusing at times, so it’s important to remember that you don’t have to navigate it alone. Engage with your support system when you need to, whether that means friends, family members, a care partner, or our YOPN community. 

    Sources:
    How to Qualify for Disability with Parkinson's in 2023

    APDA Social Security Disability Insurance

     

     


  • 02/03/2023 3:50 PM | Anonymous

    Cognitive distortions can warp your sense of reality. Here’s what they look like and how you can identify them to see things for what they really are and improve your mental health.

    Cognitive distortions are negative thinking patterns based on emotion rather than facts or reality. When it comes to anxiety and depression, these thought patterns play a big role in perpetuating and even exacerbating mental health issues — and this is especially true for those who suffer from Young Onset Parkinson’s.

    We know that people living with YOPD are prone to more challenging psychological issues compared to those who are diagnosed with PD later in life. Recognizing and understanding your own cognitive distortions at work is highly beneficial to maintaining your mental health and improving emotional regulation. 

    Polarization

    You may already know polarization as an “all-or-nothing” or “black-and-white” mindset. You experience polarization when you only consider the extreme outcomes of a situation. 

    Thinking that YOPD is either going to ruin your life forever or somehow turn out to be the best thing that ever happened to you is an example of this kind of thought pattern. 

    The antidote: Remind yourself that two things can be true at the same time, and shades of grey are much more common than perfect boundaries of black and white.

    Overgeneralization

    Have you ever had one of those “off” days and caught yourself thinking that this is it and you’ll never function any better than this again? That’s an example of overgeneralization or assuming that one negative event means that every subsequent event is going to be negative, too. 

    The antidote: Remember that this negative experience won’t last forever and that you have the power to not let one bad day control your entire week.

    Personalization

    This is one of the most common cognitive distortions and contributes a great deal to anxiety, in particular. Personalization happens when we take things personally even though they’re not connected to or caused by us at all. 

    “I wasn’t invited to that party because my tremors make everyone uncomfortable” is an example of a personalized assumption. In reality, it’s much more likely that your invitation got lost or it slipped the host’s mind — something that has nothing to do with you, your traits, or your characteristics. 

    The antidote: Challenge your assumptions. Can you think of any other, possibly more realistic explanations? Can you try to see the situation from a different, non-personal perspective and focus only on the facts? 

    Mental Filtering

    Ignoring the positives and focusing exclusively on the negatives of a situation is a type of distorted thinking called mental filtering. 

    Maybe you or your Care Partner only focus on the ways that YOPD has hurt your relationship and forget about the ways it’s brought you closer together or made your partnership stronger.

    The antidote: For every negative thought, challenge it with an opposing positive thought about the situation. You might be surprised by how many positive thoughts you can come up with.

    “Should” Statements

    “I feel so lazy right now because I should be exercising instead of resting.”
    Pause. Statements like this are often rooted in deeply internalized family or cultural values. Oftentimes, these values are not appropriate or applicable to you as an individual. Perhaps you are resting because you’re tired, and that’s what your body needs right now. 

    The antidote: Ask yourself if the expectation that follows that “should” is realistic given the context of the situation. Most of the time, it isn’t. 

    Catastrophizing 

    This distortion happens when we jump to the worst conclusion despite there being little to no evidence to support that conclusion. 

    For instance, you’re unable to make it to your child’s soccer game this time around because your YOPD symptoms are kicking your butt today. A person who catastrophizes may begin to fear that this will cause irreparable damage to the relationship and that their child will grow up hating them and never speak to them again. 

    The antidote: Review the evidence and/or the facts of the situation. Does any of it support this hyper-negative conclusion?

    The Bottom Line

    There are plenty of other cognitive distortions that explain why and how our thoughts can trigger such strong emotions. The main way to manage them is to learn how to recognize when you’re experiencing a distortion, and then reframe your thinking so you can look at the situation from a different, calmer, clearer perspective. 

    Reflecting on your thinking patterns and the feelings they cause is a great practice to maintain your mental health.

  • 01/11/2023 11:18 AM | Anonymous

    "Yes, and?" Improv classes are emerging as the next big thing among the YOPD community.

    Some common advice for maintaining quality of life with Parkinson’s includes staying physically active, paying attention to your nutrition, staying on your meds, and focusing on your mental health. But recently, a more unique activity has been gaining traction among the YOPD community: Improv. 

    After her diagnosis in 2015, Susan Scarlett found herself feeling scared and withdrawn from her normal life and activities. Fortunately, her support system kicked in and family and friends helped her to stay active and seek out new opportunities for keeping busy and enjoying life. 

    When her nephew, Adam, set out to break a world record by swimming the length of Lake Okanagan, he dedicated the feat to Susan to keep her motivated and inspired to live fully despite her diagnosis. They trained together and ended up filming a documentary about the experience called Victory Swim.

    Dr. Robert Cochrane, a Ph.D. student who was studying the effects of improv on Parkinson’s patients at the time, saw the documentary and invited Susan to participate in his clinical trials. And thus, Susan began her improv journey. 

    For those who are unfamiliar, improv is a form of live acting (typically comedic) in which the situation, characters, and dialogue are all made up on the spot. No scripts, just saying what comes to mind.

    “I was very shy and inexperienced at first,” she recalls. “I’d never performed and lacked the self-confidence to be in front of an audience like that. But about two and a half years into it, I realized I wasn’t just naturally shy — I was afraid.”

    Most of us are familiar with how it feels to fear failure and judgment, but when you throw in a neurological disease that affects your motor function, those feelings can become debilitating. Parkinson’s patients often have to deal with this extra layer of self-consciousness about their speech and movement in addition to any existing insecurities, which is, without a doubt, emotionally exhausting. 

    “The way Robert teaches, he celebrates words like ‘fear’ and failure,’” she says. “We truly get to experience failing and making big mistakes, but in a safe environment where we celebrate them and there’s no judgment.”

    Having regular opportunities to practice openness, acceptance, and forgiveness among a community of peers struggling with the same thing has helped Susan to build her confidence back up after her diagnosis. She now attends regular Improv group sessions run by Dr. Cochrane. 

    “It helps you to change your mindset and your perspective on your situation. Practicing improv has helped me to build up trust and respect for myself and others, which really helps with the depression a lot of Parkison’s patients experience.”

    Susan describes her improv practice as having taken her from her post-diagnosis paralysis to blooming into a more active person and taking on things she never imagined she would do. Since participating in Dr. Cochrane’s clinical trials, she has attended events as a keynote speaker and feels a new sense of purpose, pride, satisfaction, and delight in her life. 

    Who knew that a seemingly playful activity could result in such profound and positive implications for those living with Parkinson’s? To learn more about Susan’s story or find out how you can get involved in Improv, visit https://www.yesandexercise.org.

  • 11/09/2022 11:39 AM | Anonymous

    While building healthy nutrition habits can benefit everyone, building specific nutrition habits around your symptoms can help those living with YOPD.

    It’s no secret that eating whole foods and plant-based meals has benefits for everyone, but did you know that your food choices can impact the symptoms and progression of YOPD?

    While there are no hard and fast ground rules for exactly what meals to eat and how to prepare them, there are guidelines that you can follow for both a healthier diet and to ease your symptoms. Here are some tips to help you build some personalized, healthy nutrition habits.

    Drink Your Water

    Drink 6-8 glasses of water per day and remember to take your medications with a full glass of water. Staying hydrated can help with digestive issues and ease constipation, and a full glass with your meds can help your body break them down more efficiently.

    Vitamins & Minerals

    Aim to fulfill your vitamin, mineral, and fiber requirements by eating plenty of whole grains, vegetables, and fruits. 

    To maintain bone health, you can introduce more Vitamin D into your diet by consuming milk products, egg yolks, and fatty fish. Check with your doctor to see what your Vitamin D levels are and whether you need more before making this dietary change.

    Sugar, Caffeine, and Alcohol

    Keep an eye on your sugar intake. While it’s calorie-dense and can fill you up for a short period of time, it has few nutrients. 

    While you don’t have to cut it out completely, drink alcohol in moderation. Cocktails contain little to no nutrients and may not be advisable to mix with certain medications. Check with your doctor to determine what’s best for you. 

    Limit how much sugar, alcohol, and caffeine you consume right before bed. The fewer of these in your system as you lay down, the better you’ll sleep.

    Salt & Fat

    Pay attention to and limit how much salt and sodium you consume — eating too much can increase your risk of high blood pressure.

    Stay away from saturated fats and cholesterol to reduce your risk of heart attack and certain types of cancer. 

    Healthy Diet, Happy Brain

    Eat antioxidant-rich foods, like brightly colored and dark fruits and vegetables. Why? Because antioxidants are important for your overall brain health.

    To promote brain health, snack on walnuts and cashews. Salmon, Tuna, and dark, leafy green vegetables also have an ant-inflammatory effect on the brain. 

    Exercise

    In addition to eating a balanced diet, make sure you’re getting enough physical activity.

    Talk to your doctor and find out what a healthy weight looks like for you and try to maintain it. This reduces your chances of developing high blood pressure, heart disease, stroke, certain cancers, and common types of diabetes.

    Dealing with the Challenges

    With YOPD, you may notice that you’re eating less and losing weight. This is fairly common as a result of nausea from medications, movement symptoms making it difficult to eat, and difficulty swallowing. If and when you notice them, be sure to address these issues with your doctor.

    Challenge

    Solutions

    Decreased Appetite 

    • Exercise to increase hunger 
    • Try eating bitter greens or spicy foods to stimulate appetite 

    Tremor, stiffness, and/or difficulty swallowing

    • Opt for foods that are softer and easier to swallow
    • Put your dishes on rubber mats to prevent them from slipping 

    Dehydration

    • Eat foods with high water content, like celery, butternut squash, grapefruit, strawberries, and watermelon

    Different combinations of these tips can work for different people, depending on your unique symptoms and experiences with YOPD. Be sure to consult your physician before making any drastic lifestyle or nutritional changes to make sure that you’re headed down the path that’s right for you. 

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