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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!

  • 09/07/2022 3:00 PM | Anonymous

    Google defines gratitude as “the quality of being thankful; readiness to show appreciation for and to return kindness”... but it’s so much more than that.

    Research confirms that when we practice gratitude, it helps us to feel happier, enjoy positive experiences more deeply, and build stronger relationships. And, according to previous YOPN Guest Speaker Linda Burton, practicing gratitude may have a strong neurological impact on us, too.

    Whether you’re expressing appreciation for your Care Partner or silently thanking the universe for another beautiful day, those little actions cause your brain stem to release dopamine — a chemical that makes us feel good, and triggers positive emotions. 

    When you journal or reflect about things in your life for which you are grateful, your brain also releases serotonin — a mood-enhancer that boosts our willpower and motivation.

    The more often we take actions that release these chemicals (in other words, the more often we practice gratitude), the more we’ll start to notice and focus on the good things instead of the bad. The benefits (according to this study) of that shift in focus are profound:

          Less exhaustion

          Less cynicism

          More proactive behaviors

          Higher job satisfaction

          Fewer absences due to illness

    Who wouldn’t want all of that? Now that we have an idea of the kind of impact gratitude can have on our lives, here are five ways you can start practicing:

    1.  Show Appreciation for Your Care Partner  Take some time to write a little thank you note for all they do, or randomly surprise them with their go-to Starbucks order. Not only will it brighten their day, but it will also have positive physical and mental impacts on you, too!

    2.  Take Stock of Your 5 Senses  Sit quietly wherever you are and identify one thing you can see, one you can hear, one you can touch, one you can taste, and one you can smell that you’re grateful for in that moment. This is also a great grounding exercise that can help ease anxiety.

    3.  Make a List of the Little Things  All too often, we tend to focus so much on the big things that we forget to “stop and smell the roses.” A great way to practice gratitude is to make a list of seemingly insignificant things you experienced during your day (like how nice the breeze felt earlier, or a nice conversation you had with a friend), and read over it when you’re finished. You might find that those things aren’t so insignificant, after all.

    4.  Give Back  A quick and easy way to get yourself into a more grateful mindset is to give back to someone or something who has helped you. This could be anything from sending your neurologist flowers to making a donation to an organization like YOPN. 

    5.  Make Time to Be Present  Being present in the moment is key to practicing gratitude and reaping the benefits. Pausing and savoring the moment, no matter how big or small, is great practice. If you’re not sure how to become more present, meditation can be a wonderful tool to help you learn.

  • 08/01/2022 4:25 PM | Anonymous

    The second in our two-part series on traveling with YOPD.

    Mobility is an important factor that affects how you travel. For those of us with YOPD, that means we have to dedicate more time and consideration toward how we plan to get from point A to point B.

    Here are some tips to help you stay on schedule and comfortable en route.

    1.       Consider how you want to make the trip. Each mode of transportation offers pros and cons. For instance, even though it might take longer to arrive by train than by plane, trains allow you more freedom to move around during the journey. Be sure to consider your personal needs and decide which method of travel will be most comfortable for you.

    2.      Book tickets for your highest-functioning time of day. Since you’ll be moving around quite a bit and traveling can be a stressful experience, it’s best to try to time the busiest parts of your trip for a time when you know your body will be at its best.

    3.      Give yourself plenty of time. If you need to catch a connecting flight or check into your hotel by a certain time, be sure to allow more time than you think you need between each leg of the trip. That way, if you’re moving slower than normal or run into delays, you can ensure you keep stress levels to a minimum.

    4.      Don’t be ashamed to use accommodations. That’s what they’re there for! If being escorted to your gate via wheelchair or boarding the plane early will make things easier, do it! You might even get the first pick of overhead bin storage!

    5.      Carry a cane or a walking stick. Seriously — hear us out. Travel is stressful by nature, which can impact your physical function. Having something you can lean on and use for support is never a bad idea. It also signals to other travelers that you need space, preventing you from getting caught up in crowds. 

    6.     Build mobility breaks into your travel itinerary. If you’re taking a road trip, map out where and how often to stop, so you can get out of the car and walk around. If you’re limited to an airplane cabin or a train car, consider doing seat stretches and walking up and down the aisle when you can to keep your muscles limber and reduce cramping.

  • 07/27/2022 11:30 AM | Anonymous

    The first in our two-part series on Traveling with YOPD.

    We all know that packing for a trip can be a pain, and despite the checklists, we always manage to forget something. It’s no big deal if that something is a toothbrush, but when you arrive at your destination to find that you left your medication at home…that can put a damper on your trip very quickly.

    Making sure that your medications are well organized and accessible during travel can be especially more challenging for people living with Young Onset Parkinson’s and other chronic issues. Here are some packing and prepping tips to keep you covered so you can spend time enjoying your vacation rather than worrying about your meds.

    1.        Bring more than you need. It’s always better to have it and not need it, instead of needing it and not having it.

    2.      Pack your meds in multiple bags. We recommend you carry some in your carry-on and some in your checked bag, just  in case you run into any issues retrieving your luggage. It’s also a good idea to pack some in your care partner’s carry-on and/or checked bag if you’re traveling together.

    3.      Make sure everything is labeled properly. Authorities can confiscate pills and other medications if you can’t prove what they are. It’s always a good idea to carry your prescriptions in their labeled Rx bottles. It also doesn’t hurt to bring a list of your prescriptions, so you can keep track.

    4.      Set reminders or alarms on your phone for when it’s time to take your medication. It’s easy to forget when you’re having fun outside of your regular daily routine.

    5.      Keep time zones in mind. If you’re traveling to a different time zone or out of the country, make sure the reminders or alarms you set are consistent with what your body needs. Double check with your doctor to make sure you keep on the right schedule.

    6.      Account for extra doses. We often pack a lot more activities into our days when we’re on vacation, and end up staying awake later than normal. Make sure to account for this and be prepared to take any extra doses, if needed.

    7.       Check in with your doctor before traveling. While you’re allowed to travel with liquid medications greater than 3 ounces, you’ll need to provide documentation from your doctor in order to pass through airport security with them. This applies to substances like the gel form carbidopa/levodopa for the US-approved Dopa pump. Be sure to pack these in your carry-on, and not in your checked luggage.

  • 06/15/2022 8:51 AM | Anonymous

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

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

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

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

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

    Practice Self-Compassion

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

    Practice Gratitude 

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

    Set Aside Time For Yourself

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

    Join a Support Group

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

    Make a Therapy Appointment

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

    Get Moving

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

    Spend Time with Friends & Family 

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

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

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

  • 05/04/2022 10:07 AM | Anonymous

    If you’re reading this, you might be wondering, “Is Young Onset Parkinson’s Network (YOPN) for me?”

    Historically, most of the resources and support available about Parkinson’s Disease have focused on the traditional-aged population - those diagnosed later in life, anywhere from their late 50s to 80s. Young Onset Parkinson’s Network (YOPN) was founded as a resource designed specifically to support the Young Onset population (people diagnosed with YOPD before the age of 50) as well as their family members and care partners.

    A Parkinson’s diagnosis at a young age means an evolution of symptoms that friends and family members have to adjust to over time, which can be especially difficult to navigate. The roles that patients and their loved ones play in their relationships and each individual’s coping mechanisms are both significant factors in adapting to the ongoing, developing nature of the disease.

    A mother with YOPD who is used to managing the day-to-day care of her children and household activities may struggle when her symptoms make these tasks more challenging and she needs to ask for help.

    An adult son or daughter with YOPD may find it really hard to allow a parent to help for fear of losing their independence, while their parents may feel hurt about being shut out.

    The spouse of a patient with YOPD might experience conflicting feelings about how the diagnosis has affected intimacy in the relationship, and a child whose parent has been diagnosed could be feeling confused and scared.

    A friend of someone living with YOPD may not understand or know how to help when the patient has an “off” day.

    The Young Onset Parkinson’s Network is built for each of the people in those examples and more. Taking a more holistic approach to the YOPD community, YOPN recognized the unmet need to provide resources, data, mental and emotional support, and comfort to anyone who has had to adjust and adapt to YOPD symptoms. But it goes beyond manaing symptoms. YOPN is about creating a community and resource for those  living with YOPD and those who love and support them - helping them embrace their diagnosis and thrive beyond what they thought was possible.  

    So, whether you're reading this as someone diagnosed with YOPD, or you're a loved one, friend or family members of someone living with YOPD, let this be the answer to your question: Young Onset Parkinson's Network is designed for you.

  • 03/29/2022 11:30 AM | Anonymous

    How is Young Onset Different Than Traditional Parkinson’s?

    On average, those affected by Parkinson’s disease are usually diagnosed while in their 60s. Young Onset Parkinson’s Disease, however, is characterized by a diagnosis at age 50 or younger, and affects about 4% of the 1 million people with PD in the United States. 

    Although symptoms can be similar to those of late onset Parkinson's, Young Onset Parkinson's Disease (YOPD) poses a unique set of challenges during this particular stage of life.

    Professional Life

    A majority of the Young Onset demographic are either at the beginning of a promising career or currently thriving in their field of work, when diagnosed, which at the initial onset complicates their career progression and current plans. Down the road with progression, many have to put their professional ambitions on hold (or put them away for good) in order to focus on their health.

    Family and Relationships

    It’s not uncommon for Young Onset patients to have small children or to be planning on starting a family. Not only does it put a strain on the family dynamic and relationship between partners, but it also has a significant impact on kids who are too young to fully understand or cope with what’s happening to their affected parent.

    Available Resources

    Most of the widespread resources and support opportunities out there are designed for older age groups. Exercise classes are scheduled during the middle of the workday and workout intensity levels are lower. Most articles about discussing your diagnosis with your kids assume that they’re adults and not elementary schoolers — It’s time-consuming to sift through everything to find content that’s actually applicable to you.

    Physical Function

    It can be embarrassing to experience your body acting like it’s much older than it is. Symptoms like tremors, stiffness, slowed movement, and difficulty walking can leave patients feeling a disconnect between their mental/emotional and physical selves, drawing more unwanted attention to their condition.

    The Diagnostic Process

    One of the main challenges younger patients face is that their symptoms can mirror other, more prevalent issues in the under-50 group like carpal tunnel syndrome and back issues. This, coupled with most physicians’ hesitancy to diagnose someone under 50, often results in a delayed diagnosis. Time is of the essence, especially for YOPD patients, because the sooner treatment begins, the better.

    Treatment Options 

    While there are plenty of social and emotional struggles that come with a young diagnosis, younger patients are better candidates for surgical procedures and other innovations being developed to treat the disease because they’re less likely to be dealing with other health problems at the same time.

    A focus on physical fitness is the only activity proven to slow the progression of YOPD at the time of this writing. The type of exercise that has shown the most promising results is high-intensity cardio workouts sustained for 30-45 minutes at least 5 times a week. Finding an activity that not only meets these parameters, but is also enjoyable to the patient, is imperative for living with YOPD.

    Understanding the difference between Young Onset Parkinson’s and traditional Parkinson’s is important because even though the Young Onset demographic is smaller, those affected will live far longer with the disease than their traditional  counterparts. This makes it critical to increase awareness and actions in research, treatments and support services that can help delay the progression of YOPD until the day a cure is found.

    Young Onset Parkinson’s Network provides programming, resources, and a vibrant community, transforming the lives of those with YOPD and their loved ones. We partner with experts in the field to increase awareness and empower our members to live well and thrive far beyond this unexpected, early diagnosis.

    Diagnosis is hard. Finding information specific to YOPD shouldn’t be.

  • 02/23/2022 10:26 AM | Anonymous member (Administrator)

    Stress Kills Parky’s

    How to make the sweetest music possible, for as long as possible.

    In the workplace I take ownership of my work and I take pride in a job done well. But sometimes I forget that as a Person with Parkinson’s (PwP), I have to pay extra attention to my health. Stress kills Parky’s. To avoid having to learn that lesson repeatedly, always know and pay attention to the instrument you have been given. When taken care of and used as designed, it will serve you well. Read on for a couple of tips for making the sweetest music possible, for as long as possible.

    I was starting to think that I might have found a way to overcome the problems I had experienced at work over the years. Problems that started many years before I was diagnosed with Parkinson’s. Problems such as brain fog, trouble finding words, difficulty speaking, apathy, and irritability. Yet, lately many of those problems that effect my motivation, and productivity had once again been slowly creeping back in to my work life. I’ve learned as I often do: the hard way, that no amount of willpower can overcome those problems. Instead, I need to pay attention to this instrument I call my body.

    I stubbornly pushed on, refusing to admit that I needed to slow down and take care of myself. The warning signs were there. Two of my closet colleagues even noticed and encouraged me to take it easier. I had been taking on a lot of responsibility. And I had been handling it pretty well…until my Parky body caught up to me, and then the trouble started. At first, the added workload was exhilarating. But as time wore on, my ability to stay engaged began to slip. I found myself getting really really fatigued. As I was slowly getting over whelmed by an avalanche of tasks, my stress levels rose. When I get overly stressed, I experience noticeable changes in my ability to process information efficiently and articulate thoughts. This can add additional frustration and stress, which worsens my symptoms and results in a downward spiral. That’s when productivity and motivation can take a nose dive. Fortunately, I realized (well…admitted) what was happening, and took a step back, reflect, and take corrective actions before any lasting damage had been done.

    Why is it that PwP are particularly vulnerable to stress?

    Besides missing that extra squirt of dopamine responsible for keeping a healthy brain engaged and motivated, the Parkinson’s riddled body already has to work extra hard to overcome a host of challenges. Problems with stiffness, rigidity, pain, slowness (bradykinesia), speaking problems, spacial awareness issues, and many others. Add stress to the mix, which amplifies all of these problems, it’s no wonder we PwP can struggle with fatigue, apathy, and reduced motivation. Why do I have a tendency to get burned before pulling my hand out of the fire? First, these problems can creep in gradually and be difficult to notice. Speaking for myself, I tend to stubbornly ignore the warning signs. I can’t say for sure if this trait can be attributed to Parkinson’s or not, but I suspect it is common.

    The thing is, when I get to the point where, burned out and exhausted, I’ve finally taken a moment to pause and reflect on how I got to that place, I’ve usually already endured quite a bit of avoidable pain. Because fortunately, there are ways to help ensure you don’t end up overly stressed, burned out, or with a completely broken instrument. I offer these 3 tips for PwP to keep stress levels low and productivity up in a fast-paced work environment.

    Slow down, take care of yourself – Counterintuitive. But we PwP need to first go slow to go fast. I get it, you want to perform. But if you lose your mind and your body doesn’t work, your productivity is going to suffer, no matter how hard you try. For us PwP, stress levels are inversely proportional to our ability to function. Haven’t you heard? Stress kills Parky’s. So, if I know I need time to decompress I need to do it. Get up, move around, de-stress, and return relaxed and motivated. Make it a priority to move and do the exercise our bodies so badly need to stay functional. Eat right. Be healthy. Don’t worry too much about falling behind in the short term. In the long run, you’re going to contribute more if you take care of yourself first.

    Know and respect your limits – Whereas a normal brain can take the ups and downs of everyday life in stride, the parky brain can leave the baffled sufferer struggling with a vast array of potential symptoms. This can make it challenging to maintain a steady drive to continue on and see things through. That’s why you have to understand your limits and heed the warning signs to avoid burning out. Limits are something I often have trouble seeing until I get tripped up by them. I’m not sure if this trait is commonly tied to us PwP, though i suspect it is. Regardless, when we do see warning signs, we have to heed them. When we see our colleagues taking on seemingly limitless responsibility, it can be tempting to ignore our warning signs. Don’t. The limits of the instrument we have been provided are nothing to fret over or be ashamed of. We’re going to be overall more happy, healthy, and productive if we respect our limits.

    Communicate with management – Importantly, you are the only one who knows what your limits are. If you take on more work your employer is only going to be all too happy to oblige. So you have to know your limits and communicate them. It may seem somewhat counter-intuitive to discuss your needs with your supervisor. My experience has been that they appreciate you being up-front about it and are happy to accommodate. In fact, in this country the Americans with Disabilities (ADA) provides certain protections. This means that they legally have to provide reasonable accommodations for you to perform the duties of your job. In reality, I’ve never had to invoke the ADA in any requests. On the flip-side, flexibility and accommodation is a two way street. If you want flexibility to address your un-predictable Parky symptoms, be available to work flexibly if needed to finish up tasks.

    Once I realized (ahem…acknowledged) that I was getting too stressed out at work, I started to take measures to correct course a bit. Firstly, I started to bow out of meetings that I really didn’t need to be in. While I found them interesting and I was able to contribute, it was overall better for me to give myself much needed time to de-stress…and focus on what I really needed to get done. Secondly, I realistically re-evaluated my limits. For me, some days are just really hard to get into the office. So I’ve been teleworking a bit more. That again leaves me a bit more time to do my exercises at home to connect my brain to my limbs so I can walk and move more freely, feel better, and be less stressed. Finally, I’ve spoken to my supervisor about my challenges and discussed areas where I could use some help. He’s been happy to work with me on getting help to cover down in areas I just don’t have the bandwidth to address.

    I really like my job. The important work we do and the great people I work with make it satisfying and fulfilling. Besides the obvious financial benefit, being a productive member of the workforce gives me a sense of belonging and contribution. As a PwP, in order to maintain a sustainably high level of performance out of this instrument I call my body, it’s extra important for me to keep my stress levels manageable, do the exercises that keep my body moving, eat right, and generally stay healthy. Hopefully, I’ll be able to remain a happy and productive member of the workforce for many, many years to come!

  • 02/23/2022 10:08 AM | Anonymous member (Administrator)

    Twenty Twenty Gratitwo’d

    This time of year is a natural time to reflect a bit on the past year and think a little about the next. 2021 was a great year for me. So great in fact, I started to feel a bit “overflowing” with gratitude and have a strong desire to share the wealth a bit. In light of that, I’ve been exploring ways to give back to my community. I’ve already done a little work with brighten-a day and have been looking into using my remodeling and engineering skills to use with habitat for humanity*. More to follow on that but it could be interesting. Read on for some of the highlights of 2021 that I’m most grateful for.

    The Coronavirus Pandemic in 2021, as terrible as it has been for many, was the impetus behind the telework movement responsible for making working from home more of a normal thing. Overall, this has been great for me (and many others), in that I can work more in tune with my natural rhythm. Resting when I need it, and working hard when I feel good, even at odd times such as late at night or on weekends. This is particularly beneficial for those of us with chronic illness. In fact, I believe the ability to work flexibly in time and location has been, in part, responsible for my return to a relatively high level regarding work performance. The bold actions I took in 2021 on the professional front have landed me some sizable responsibilities in 2022. It’s going to take planning, courage, and maybe some luck for everything to turn out right. I’m deeply grateful to have a great career.

    Regarding this Blog, I wrote “42” posts in 2021. Which is actually kind of an amazing coincidence since, as pointed out in my latest Blog post, “42” is the “The Ultimate Question of Life, the Universe, and Everything.”  I managed to write a few good posts in 2021. I hope to build on that going into 2022 as I plan on writing a little less about me. While I’ll keep you updated on how I’m doing, I plan on writing a bit more about other people and/or topics that I believe are interesting or helpful in some way. I’m grateful that my writing sometimes inspires or helps others in some way.

    My blog, Facebook posts, and workout antics, caught the attention of some folks in 2021. Besides some friends and I getting a visit from Jimmy Choi, I was interviewed by Mark Desa as part of his “Marked for Glory” podcast series’ Also, I agreed to be photographed for the new Young Onset Parkinson’s Network (YOPN) website. I was very grateful for each of those opportunities. I’m actually extremely grateful for all my friends, Parky or otherwise. You know who you are!

    On the fitness front, I achieved my goal of deadlifting 450 lbs. I did not (yet) achieve my goal of bench-pressing 300 lbs unassisted….I’ll probably get there at some point. If not though it’s no big deal. At 42 I’m not really old but on the other hand general fitness is a more important endeavor anyway. So for 2022 I plan on mixing it up a bit more with more climbing, mountain biking, and HIIT style training. I’ve enjoyed getting more involved with the Parkinson’s specific climbing group at SportRock and plan on building on that. Whatever I do, fitness will always be a non-negotiable part of my efforts to keep Parkinson’s at bay. As effective as exercise is in maintaining mental health and maybe slowing Parkinson’s progression, I’m incredibly lucky to enjoy exercise as much as I do.

    I took up photography as a new hobby. My initial work was some steamy portraits of my wife during our vacation in Puerto Rico. Since that time, my interests in photography have expanded to astrophotography. Encouraged by some initial success photographing, Jupiter, the milky way, as well as the Andromeda Galaxy, my enjoyment and interest in photography, especially of the cosmos, has continued to grow. My latest success was a hard earned image of the Pleiades Star Cluster just a few nights ago. I feel lucky to live in a time where technology allows us to use relatively available tools to peer deep into the night sky.

    In 2021 I was able to do quite a bit of travelling despite COVID. We visited my brother and his family in Asheville, my parents quite a few times, went to Va Beach (twice), once with friends of ours. Went fossil hunting in a couple of different parks, did some photography events in West Virginia, Pennsylvania, and Georgia, and even went to Puerto Rico. I enjoyed and appreciated each of these trips.

    Above all, being a family man is really one of my most important and overall appreciated roles. In 2021 I spent a lot of time running kids to swimming, Jui-Jitsu, track, and other activities. Volunteering at the kids swim meets was unexpectedly fun and exciting. I plan to continue to be fully involved with my children’s intellectual, athletic, and emotional development. Keeping up with their school activities, sports, and just being there when they need me is all part of my favorite job: being a Dad. I love them SO much and am getting is as many hugs as I can before that gets weird. I love my wife dearly and am sorry that I get so Parky at times. But you have to admit it IS a little funny when I have to run everywhere (festination).

    Last year, I was inspired to design an elevator for our treehouse. My mother and mother-in-law have not been up in the tree-house because the rope ladder is a bit of a challenge. My dream for 2022 is to celebrate Thanksgiving in the treehouse with my parents, my in-laws, and my brother and his family. I designed the elevator a few months ago and am waiting for warmer weather to build it. I feel fortunate to have the resources to complete such an undertaking.

    While Parkinson’s is obviously still a big part of my day to day experience, I can manage it while not letting it interfere very much with my life. I still often have problems walking. I still have problems with fatigue. My morning ritual is to creep downstairs like a 90 year old, take my meds, then sit down for 20 minutes or so while the medication goes to work. Amazing, am I right? What would happen if my supply of pills somehow became unavailable? Maybe this is one of the reasons that gratitude usually seems to come very easily to me. Daily reminders of how very precarious life is can do that I guess.

    2022 will probably be full of ups and downs and all kinds of things to be grateful for. There are so many things that are going to happen my head almost spins when I think about it. But the final thing I’ll mention I’m grateful for is the fact that regardless of how much I fret about things, they always seem to work out in the end. So while it’s easy to get overwhelmed by all the things that need to get done, it seems that just doing everything you can while trusting things will turn out ok has been working well for me so far. I’ll be heading into 2022 with plenty to be thankful for.

    What are you grateful for today?


  • 02/23/2022 9:50 AM | Anonymous member (Administrator)

    Fortress of Solitude

    Have you ever wondered just who, “Parky Superman” is? My guess is, it’s probably not one of the things keeping you up at night. But I’m going to tell you anyway because I think it’s at least a little interesting. I am a littles biased, I know. But by the end of this post though, I hope you’ll agree that my story is at least a teensy bit interesting. To truly understand the story of Parky Superman, we have to journey back to my teen years.

    In my youth I had been athletic, playing football, running track, and participating in several other sports. On the football field I was known for my speed and strength. Of course, to my younger brother, who is eight years younger, I was practically Superman. My brother and his friends occasionally referred to me by that name in playful reverence. Back then, due to my height, broad shoulders, facial structure, and hair curl, I actually looked a little bit like Superman.

    Something that I don’t talk about much is the fact that back in my high school days I was often quite depressed, and suffered from what I now recognize as phobias and anxiety. I had a lot of trouble connecting with people and spent a lot time alone. I recall being very critical of myself on many fronts but non more so than in sports. I had all the makings of an exceptional athlete (I thought). I was big, almost 200 lbs. Also, I was fast. My father had been a very successful college 800m runner in his college years and I inherited some of that speed. I was quite strong too. Moreover, I had a solid work ethic and worked hard at improving my strength, conditioning, and skills in any athletic pursuit. But I always had an inexplicable lack of coordination, particularly on my right side. Also, I felt like there was this strange dichotomy inside me. On the one hand, I worked hard (I thought) at any of my athletic pursuits. On the other hand, I seemed to suffer from a weird lackadaisical attitude. It was as if I thought i wanted to do something but when I actually tried to do it, my body would behave as if I didn’t. It was confusing and at times demoralizing. Was this tendency for anxiety, trouble with coordination, subdued personality, and general lack of enthusiasm a result of low levels of dopamine? Were these early Parkinson’s symptoms? It seems possible.

    Regardless of the cause, there was a marked mismatch between what I thought I was capable of, and how I would actually perform. It just seemed like my body would always let me down somehow, leaving me disappointed, embarrassed, or even ashamed. I remember telling my father that it seemed like the harder i tried at something, the worse I got at it. By the time I graduated from high school, besides a brief stint running track at Virginia Tech as a freshman, I was ready to move on from school athletics. Though I’ll never know for certain whether it was due to Parkinson’s or not, I believe that those humbling early experiences in athletics helped shape me into the unique person I am today.

    It was only a few short years later, in my early 20s that I realized that something was affecting my gait to the point that I had to find a new way to stay in shape. It wasn’t exactly that I couldn’t run, it was just that there was a weird…abnormality that caused me stiffness and pain that only got worse the more I ran. So I turned to Mountain Biking to stay fit. In the nearly two decades that followed, I experienced a steady decline. A decline that I was fully aware of. Over the years I went to many doctors for various aches and pains and problems with my feet. None figured it out. I recall on my 30th birthday, I jumped on the treadmill at the Gym and reassured myself that if I stayed fit, by my 40th Birthday, I would be free from these weird aches and pains. But things only got worse. I dealt with it as best I could. Until I couldn’t.

    When I was diagnosed with Parkinson’s a little over three years ago at 38 years old I was at the lowest point physically and mentally of my life. I was still somewhat strong as I have always worked out. But Parkinson’s had ravaged my body and mind over many years to the point that I felt like i was wasting away. In those terrible days, it was all I could do to get myself out of bed. Mentally, I was beginning to lose hope as it seemed every movement took tremendous effort. Physically, my body was awkward and felt foreign. Fighting me for every step or reach. Ironically, because it was Parkinson’s, besides being a little thinner than my normal weight and looking miserably tired all the time, it was outwardly difficult for anybody to notice that anything was seriously wrong.

    After taking that first Sinemet pill, it was as if my body had suddenly woken up from a very long slumber. Suddenly, in command of my limbs again (at least while the medications lasted) I found that working out took on a whole new meaning. It made my medications last longer, improved my coordination, helped me generally move more normally.

    My brother, having not called me Superman in decades, now dusted off the old name, with a twist. “Parky Superman” is what he called me to encourage me to fight my Parkinson’s symptoms. Imagining myself as a Superhero helped me to drag myself out of one hell of a deep, dark abyss.

    I became Parky Superman, and Parky Superman saved me.

    While Eric Slominski would surely falter, Parky Superman prevails. He faces his arch nemesis Parkinson’s calmly, with intellect, strength and determination.

    Parkinson’s is my Kryptonite. Despite my strength, my grit, and determination, by stark contrast Parkinson’s makes me weak, slow, and vulnerable. But I can use this to my advantage.

    The magnitude of the discrepancy between my capabilities when “on” (not affected by Parkinson’s), vs when “off” (affected by Parkinson’s) serves as a powerful way to teach about Parkinson’s. Parky Superman is selfless enough to show his vulnerability, and ultimately spread awareness of this insidious disease.

    While “standard” Superman’s normal identity Clark Kent, works as a Journalist for the Daily Planet. I report on my unique struggles through my “Parky Perspective” Blog. Again, spreading awareness in hopes that one day, my arch nemesis, Parkinson’s will be no more.

    Eric Slominski still exists. He’s a pretty nice guy when the going is good. But from now on, when things get tough, when Parkinson’s threatens to ruin my day, I’m Parky Superman.

    And I always will be.

    I can at times tend to hide away in a special place. Particularly when I’m silently fighting a battle that few truly understand. It’s during those times you would likely find me taking refuge, in quiet contemplation, gathering strength to fight my arch-nemesis Parkinson’s. I’m referring of course to my Fortress of Solitude.


  • 02/03/2022 3:51 PM | Anonymous

    At 38, Anna Grill was living her “best life.” She was enjoying a loving relationship with her husband, crushing it at work, and happily maintaining her responsibilities as PTA President at her daughters’ school. She was “Super Mom,” and loved every minute of it. 

    In the fall of 2007, friends and family noticed that Anna had developed a slight tremor in her pinky finger. She made appointments with various neurologists; one who proclaimed she had Parkinson’s Disease with very little prior testing, and another that was hesitant to give her that same diagnosis because of her age — she was too young. 

    Eventually, Anna was referred to a specialist at Johns Hopkins who ordered an  F-Dopa scan (which was still in its beta-testing stage at the time). When the scan confirmed she had Parkinson’s Disease, she felt a strange combination of dread and relief. 

    “I was upset for a minute, but then I decided that I have to keep going and I still have a lot of time.” — Anna Grill 

    And keep going, she did. Anna’s mission in starting the Young Onset Parkinson’s Network is to establish a space with the support and resources that she didn’t have at the time of her diagnosis.

    “People are really open about having cancer and other things like that, but there’s this aura of shame around Parkinson’s because it’s neurologic and you know it’s going to get worse. You don’t want sympathy, and you don’t want to be a burden, so it feels like there’s never really a good time to talk about it — and there’s certainly collateral damage from not talking about it,” she says.

    The Young Onset Parkinson’s Network is a place where not only people who have been diagnosed with PD, but their care partners, friends, and family members who are also affected, can prevent that collateral damage by talking about it without shame or judgment.

    With resources ranging from information about managing symptoms to balancing the events of a young life with an “old” disease, Anna hopes to show others affected by Young Onset Parkinson’s that they’re not alone, and encourage them to continue living life to the fullest.

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Young Onset Parkinson’s Network is sponsored in part by a grant from the Parkinson’s Foundation.


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