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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  • 02/23/2022 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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