PARKINSON’S DISEASE (PD) INFORMATION

In America, there are about 1.2 million people with PD. Worldwide, this number is about 10 million diagnosed people. Most are men, and most are older (over 60). In fact, only 2-10% of PD patients were diagnosed when they were under 50 years old. To confront the elephant in the room, I was diagnosed at age 45. I have PD. I can’t hide it if I want to, so here are my feelings on it. My symptoms began at some point around age 40 (2011 at the latest). This lapse between the effects building enough to be noticed is because the substantia nigra, which produces dopamine, takes time to slow down manufacturing and sink into the red. When 80% of the production level of dopamine is lost, a person begins to show symptoms of PD because “the map of the brain” we’ve built up throughout our life to just automatically make things happen now lacks the “WD40 that greases the paths” between all of those instantaneous and instinctive motions we take for granted. Other times, this can get so bad that it’s like putting a “bridge closed” sign on the road before the car falls into the creek. For instance, at later stages, a “Parkie” may freeze and not know how to move to point D despite having just walked from A-C. While I have not personally experienced this, I am researched on how to deal with this “overwhelmed” condition when it does arrive. A normal thing for a Parkie might be forgetting something we were just thinking or not remembering why we went to the kitchen (for the brownies, of course!).

As for what PD is, most of us know about a few things, even if we don’t know what it is. I didn’t know much other than Michael J. Fox, Mohammad Ali, and tremors when I was diagnosed either, but I learned, and now I educate and advocate. I’m very “out” about this, but I don’t politicize it in class. Telling you how to vote isn’t cool. Teaching you how to respect subjects and write unbiased research while showing subjective and objective information is a necessity of any good writer / student / professional / human. That said, please know I don’t talk about PD to wallow in pity. I’m in a pretty good place in life. I’m not going to cry or go to the hospital any time soon. I use this as examples in teaching moments since we’re talking about happiness (obtaining and keeping it, no matter what). Whether I use articles from Allison Smith (Perky Parkie), Proquest, Michael J. Fox Foundation, or Susan Schneider (Robin Williams’ former wife), I feel that these topics can advocate examples of solid college-level research in multiple forms. I could do the same thing with another medical topic like autism, but I choose to use something I’m familiar with and let you use the topics you’re “into” when it comes to your work (and you will have options for scholarly topics from broad general and academic research sources). If you choose to use something you advocate, cool. Just know I’m putting a grade on writing, not you. If you feel that you couldn’t take the academic / grammar discussion regarding an eating disorder paper that has become someone you love (for example), there are other less personal topics to work with. Food for thought.

As for people’s knowledge of PD, some people know PD can be treated with medical marijuana (please don’t send the video – it’s been sent a lot already). Other people know that Hillary Clinton was accused of having it during the election (this is untrue, and even if it was true, it’s nobody else’s right to “out” anyone about anything). Some older people might remember Rush Limbaugh accusing Michael J. Fox of faking his symptoms in 2006 so that he could get people to support a pro-stem cell research Democrat (and how his callous accusations flew back on him). It’s possible that some of my students have family, friends, and co-workers with PD. Unfortunately, medical conditions are a part of life. However, we can do things to help ourselves and people with them. Number one is to wire ourselves better. We need to find STRENGTH, RESILIENCE, HAPPINESS, MENTORS, A SUPPORT SYSTEM, AND POSITIVE COPING MECHANISMS before ANY problems happen (whether that is the aforementioned type of condition or it is divorce, job loss, a broken car, or other day to day things too numerous to mention). Number two is PEOPLE FIRST LANGUAGE. See people as who they are inside, not a wheelchair, multiple sclerosis, a pair of glasses, a hearing aid, ADHD meds, or the color of their skin / gender / age / superficial trait. RESPECT goes a long way. Finally, we need to CHOOSE TO LIVE LIFE. People spend a lot of time talking about “what is life” and “right to life,” but how often do we just get out there and make things happen? This doesn’t mean go parachuting this weekend, but it could definitely mean get off the couch and go to Longwood Gardens. In the end, we need to be ourselves and enjoy life, not watch it fly by.

As for what works, I can only speak for me since I inherited my situation, but as long as I define myself by my personality, likes, interests, and continue doing and being, I can demonstrate my perseverance to be me instead of to let PD win. It may progress, but I’m not giving in. There are mountains to climb and things to do first. For this, I am a role model for anyone who might be watching me, though, like Eddie Vedder of Pearl Jam, I’m not your “messiah” (since I can’t save you – only you can) I’m flawed and imperfect, but I’d like to think my story resonates. I know the mentors who made me better are worth emulating, and I’m sure yours will be, too. They’re the people who drive me to educate and advocate for PD, even if they’re baseball players, P.O.W.s, mountain climbers, or writers.

That leaves me with who I am. I’m still a husband to Heather, son to John and Essie, brother to Beth, godfather to Dylan, nephew, uncle to over twenty kids and adults, friend, world traveler, teacher, knowledge geek, hiker of mountains, writer, photographer, music aficionado, baseball fan, paranormal enthusiast, movie buff, thinker of deep thoughts, lover of oddball humor, and connoisseur of cheesesteaks, pizza, chicken, and chocolate iced-donuts. Other than the calories, that’s a pretty great list of things to be. In fact, I wouldn’t trade all I’ve experienced, learned, and taught for anything.

As for what PD is and where it comes from, sometimes, the body can’t produce dopamine. Other times, the MAO-B takes out enzymes that execute dopamine like its Walking Dead zombies when the body thinks they’re bad (the possibility of PD being an auto-immune disease is very real). Other studies have looked at the vagus nerve in the gut to determine if PD begins there, and they find this researchable for further study. Right now, there’s a lot of great research into finding ways to slow down progression, find a cause, and find new treatments like medicine and deep brain stimulation. The scientists and doctors who do this are also working on the cure, but that’s still down the road, though the FDA is continuing to approve drug trials for meds like Xadago and pharmaceutical labs are finding treatment options.

            As for what you will see from a PD person (ME!) is a lot of slow or awkward movement. The most noticeable of these is TREMORS. For me, these started on the left side, and they moved from hand to foot up through to the head and onto the right hand. From there, they will move to the right foot at some point in the future. While I have symptoms on the right side, they aren’t severe. Additionally, some people actually get tongue tremors.

            Other than tremors, the biggest thing you’ll see is the PARKINSON’S MASK.

            Simply put, our MOVEMENT GETS SLOWER. You will notice this in the PD smile since it isn’t there much. This doesn’t mean those of us with PD don’t like you, but it means this is our new normal (see above). Our voices tend to be raspy for this reason, too, and they can be softer than normal after prolonged conversation. We may yawn more often because our body is moving slower. We may not blink when we look at you. Our hearing could be affected. I know softer voices are hard to hear (hence, I may walk next to you to hear you) and multiple voices sound like a cacophony (hence, I kindly request one voice at a time, which is just common courtesy anyway), and I could be speaking louder to compensate. PD people might occasionally have swallowing issues when we eat or drink too fast (aspiration pneumonia is a major “killer” at the later stages of the PD game when it’s more than just eating or drinking too quickly, but I’m definitely not there yet). We could eventually lose our sense of taste (not here, but I’ll be eating healthier when I do). Think about it like this. If movement can get slow, PD will make it sluggish and exhausted. The things listed above are things that you might see in the classroom. None of these affect my ability to teach you, but they are things I believe in being up front about.

            I do have RIGID MOVEMENT. Some of this is compensation for dystonia in my left foot (another “gift” from Parkinson’s), and some of it is being a little unstable. I don’t need a cane to walk with, but I hike with trekking poles. Many people with no walking issues do this. It gives balance and “oomph” for hills. What’s more, I can still climb the mountains I want to. In fact, I solo climbed the huge rock piles and wall at Hawk Mountain this summer, which require hand over hand movements. In short, I may have a “goofy” gait at times, but I’m good to go.

            At later stages of the PD life and because of certain medical adverse reactions, people with PD do develop slowed thinking. This does not make said people “dumb.” In fact, many people with PD are highly intelligent and skilled in tasks and professions in life. Nevertheless, PD people do see little hitches in their swing. For instance, I could type 80+ words a minute before PD, but now, my left hand tremors, so I drop extra A’s sometimes when I’m typing (example “haead”). I can spellcheck this, and life is good. That said, when it’s just an “A” between words, this requires proofreading. Even before I knew what this problem was called (I was diagnosed September 27, 2016), I compensated for it. I did the same for issues of balance and walking with dystonia as well. With the right medicine, these effects can be controlled. In later stages (well beyond where I am in the coming years), PD creates need for assistance and help. I’m not there, nor do I plan to be any time soon. However, confronting this reality is part of having a better reality. For this, I recommend the Stockdale Paradox.

            For now, I’m 100% committed to helping you be a better writer and a solid college student! Questions, ask me or see: https://www.michaeljfox.org/