I am a Pre-Existing Condition

One of my most popular posts ever was entitled "The Price is Wrong." To prove its points that A) meds were overpriced and B) that they were really overpriced for those without insurance, I asked what costs more: a month of rasagiline or some random product.

The end result was this:

If you don't go generic, and you choose Azilect, you can expect to pay over $700. Since I had to go to CVS with my plan, and I'm between month 1 of COBRA and switching to my wife's insurance, we're paying out of pocket and getting reimbursed, so our price was $524.

Yep. You read that correctly... $524 for 30 1 mg pills or about $17.50 a pill.

You can read it in its entirety HERE.

I mention this because two days ago, buried in the Michael Cohen (a sad state of affairs) and North Korea non-deal (a good thing) there was a Senate hearing on drug pricing. Trump had made this excessive gouging a point of his campaign that we agree with. Unless your name is Martin Shkreli or you're really in favor of the freer market / Law of Supply and Demand & are NOT a pre-existing condition or know someone(s) with one (or more), you're probably wondering why drugs cost so much. Then again, lobbying money is really good, I hear.

OPENSECRETS LIST OF WHO TAKES WHAT FROM WHO.

There are no results yet from the day's hearing, but I've included a few articles on it here since, even though they were talking more about insulin and Humira, by virtue of reading a post written by a guy with Parkinson's, you or someone you know / are friends with / love someone who is a pre-existing condition. Their / your ability to be insured and covered is important. Not to get all dark, but chances are, someday you or someone(s) you know will be. That's life because the human body is "fra-gee-lay."

When we fight to fix the system, we want to know that when crap happens, we're covered. When we're young, we may not be helping ourselves, but it's kind of like the Law of Wedding Gifts. You bought me mine so someday, I will buy you / your kids yours / theirs. What comes around goes around in a good way. Although sometimes, like my dad remarked, "You don't want to buy some people's offspring theirs!" That said, reciprocity is nice when it helps us and those we love, so (in my opinion), we do what we need to.

On a similar note, if you believe in free community college for all, like the state of Tennessee, that's the end goal, too. You educate yourself to fund a community of trained people to take care of you and yours. It's not really free. You just pay a fund for your entire life. Thus, for those voting for Bernie on the basis of free, free is not free. You're just ensuring (hopefully) a pool of trained workers to support you for the rest of your working life. If they have the credentials and better the community / world, that's nice. Like anything else, it has its drawbacks, but that's another story.

This article is about not getting gouged by a reckless necessity of an enterprise.

Sadly, with medical coverage, as many of us pre-existing conditions know (whether born with or inherited), even the healthiest of us someday find stuff happened. It's not pretty. It's not ideal. It is.

Setting up an acceptable way to treat people who get ill represents what I feel is a necessary social safety net. We don't give people sticks to burn until the wolves come to get them anymore.

I think that makes sense, and I hope it spurs some real action on Capitol Hill. It's something Trump and his opposition can agree needs fixed, even if how will be a compromise. Personally, I'd like to think that a community that cares for the community is essential to being who we are, whether that's American or some other nationality.

But in a land that begs for privatization of government entities while taking the government's cash, something is amiss. In a land where I'm forced to watch the Otezla people 2-4 times an hour on television so I can choose that drug like I'm choosing where to eat, something is really amiss (especially when I get the feeling I'm paying to advertise medications (?). That's why I'm rooting for our government, all of it (not just one side), to hold these people accountable and take care of my fellow pre-existing conditions present and to come.. 

I think many of you out there with your pre-existing conditions (and your family members with them) are feeling the same. 

+++

If you're interested in the hearing, here are some articles.

THE ATLANTIC 

NPR

A couple good editorials

BEFORE THE HEARING NEW YORK TIMES

"A vial of insulin that cost less than $200 a decade ago now sells for closer to $1,500. Actimmune, a drug that treats severe malignant osteopetrosis and sells for less than $350 for a one-month supply in Britain, costs $26,000 for a one-month supply in the United States. And the prices of many drugs — that treat cancers, high blood pressure, allergies and more — have risen so much that average consumers are rationing them, at grave peril. Not even experts seem to know how those prices are set or why they keep rising."

AFTER THE HEARING NEW YORK TIMES

"Not only do we pay high drug prices, our tax dollars supply more than $30 billion per year for life-sciences research through the National Institutes of Health."

FORBES on the Trump Administration fighting this.

"At present, without the ability to institute direct price controls, there's little the Administration or Congress can do to rein in list prices. The Trump Administration has made it clear, however, that it won't tolerate business as usual. And, legislators on both sides of the aisle appear to be similarly inclined."

HEALTH AFFAIRS on the Trump Administration's considered plans

"The plan contains three key elements: substituting private-sector pharmaceutical vendors for the current Part B “buy and bill” practice, changing the Part B Average Sales Price plus 6 percent reimbursement system to a flat fee, and implementing international reference pricing.  The first two of these were attempted – and failed – in previous administrations."

730 Days in the Life: Holding Back the Change in Seasons from All Directions

When I think of the change of seasons from summer to fall, there are a lot of positive things that come to mind. I think about beautiful autumn colors, like the ones that were on display in October 2008 when my wife and I got engaged in the Poconos. The oranges and reds that year really stood out in a way that I haven’t seen much since then, though a few years ago we did get to wander around French Creek State Park to see some amazing fiery colors.

Pennsylvania / Pennsyltucky can be beautiful this time of year (as it’s getting now with its oranges and reds poking out). It's all about finding the time and energy to see it.

Here, Autumn also makes me think of colder mornings and shorter days. This October, it seemed like summer was hanging on well into October with a nearly 80° day before 2 days in the high fifties. We literally went from air conditioning to accommodate Parkinson’s sweat in a house that had maintained 78° of heat from the summer (with no heating kicked in) into the middle days of October. Talk about system shock!

Now, if you mix in darkness and rain, which for Pennsylvania looks to be more than 50% above average in my sleepy corner of the state, you have a perfect recipe for the seasonal blahs. Also known as seasonal affective disorder, this is a diagnosed condition as opposed to just something we call it, though a fair bit of people exhibit these signs and symptoms and have a pretty good idea what they are. The Mayo Clinic has a lot of good recommendations for dealing with this. I recommend it to anyone who might be feeling "seasonally blah."

That said, depression and blahs do get worse during the colder, darker months. For me, the first of November is always Melville’s “November of the soul.” I wish I could say I see it as Día de los Muertos (Day of the Dead, which it is), but alas…. I’m not quite there, though my feelings on the Mexican customs of remembering the dead most definitely are.

Unfortunately, I associate this time of year with the long descent into winter. Other than turning back the clock for an extra hour of sleep, I don’t ever feel happy about losing an hour of daylight after work or waking up to colder temperatures. 

With my Parkinson’s engine running hot, the sweater that feels nice outside often feels way too warm inside, so I’m in that perpetual off state of discomfort. Fortunately, most days are still about right in temperature, so I can plan accordingly. Also, it’s kind of nice that the trees are still holding most of their leaves (though the wind is blowing a few in front of the window as I sit here typing) so that skeletal branches won’t be the aesthetic du jour along the highways and bi-ways any longer than they are going to be.

Perhaps more than anything, November 1^st has come to be the day I began taking rasagiline (Azilect) in 2016. At my initial 90% sure it’s Parkinson’s appointment on September 27, 2016, I elected not to go with medications until it was a certainty that I had Parkinson’s. Two years ago, the doctor’s prediction came true.

That day was a very windy, overcast, and ugly day. My wife and I were supposed to be going to go for a walk on the Appalachian Trail after the "confirmation" doctor visit, but it was just too ugly and we were just too drained, so we went out to eat instead at a diner and picked up my medication. When we came home, I began the process that I’ve done well over 700 times since: I took my "take out the faulty particles" medicine to give my brain's natural dopamine a fighting chance. Two years and several other Parkinson's medicine days later, I’m working through a medical routine and more complicated symptoms to try to be me as long as I can keep the Invasion of the Body Snatchers at Bay. The fact that the outdoor environment doesn’t help with this makes things more challenging.

I also started this blog on what would be my first official Parkinson's day (though in reality I had Parkinson's symptoms since 2011)... 157,550 visits and 182 posts ago.

With many of us who have Parkinson’s, our “happy brain chemicals” (AKA dopamine and serotonin, as well as others) are already out of balance. With fluctuating levels of dopamine to begin with, we can find ourselves in quite a dilemma as we find it harder to want to get motivated for anything, much less to go outside and get some between the trees therapy (or even fresh air). Cabin fever gets more common as the year drags on into cold days. I’ve already written about winter precautions, but I write this “State of the Union Address” with regard to autumn changes (particularly this autumn). 

For this, we need to make ourselves stay active and remember to do the things that we enjoy. We need to find things to want to do and to look forward to. We need our team to be there for us to motivate us to stay loose and positive. In this, the cold wind can freeze us out quickly if we don’t monitor our situation.

Here, I realized that I hadn’t been myself in a long time. I was starting to lose sense of me. Little things like organizing playlists for my mp3 player were getting forgotten about. The worry of the future was coming down hard on me. I could really feel it like I hadn’t since all of this Parkinson’s talk began 2 autumns ago. I had survived diagnosis, Lyme disease, 2 hospital stints, a car accident, worsening symptoms, sleep apnea issues, and the decision to not teach, and all of a sudden, I was waylaid by a seemingly impossible and un-nerving Neurological Baseline Exam and all of life’s events that happened at the same time. Compounded by Parkinson’s emotional "joys," I just stopped being me.

Then something happened out of nowhere, which is a new job in an advising position that I start November 1^st. Some of you may not believe in divine intervention, but I do. It literally felt like being pardoned from death row. I was Dostoevsky after having his sentence overturned. Because of this, I felt alive again, but numb. It’s been hard to write during this time, hence my general absence from blogging, but now, I feel like I’m going to be getting back to being me and the excitement of making educational knowledge possible to incoming and active community college students.

I also decided to get back to me and to create a 500-song playlist that my wife and I could listen to in our journeys. In keeping it with what my wife generally listens to on the radio, I set the bar between late 1970s and now, roughly 40 years, where the main requirement is adult radio friendly, though I did make a few exceptions based on our age and having moved through the period that is 1989-1994. If you’re interested, it’s very 80s and 90s heavy, though it does feature all years.

Songs 1-200 of the Rawkin’Rock / Pop Compilation

Songs 201-350 of the Rawkin’ Rock / Pop Compilation (to be linked)

Songs 351-500 of the Rawkin’ Rock / Pop Compilation (to be linked)

For the reason of enjoying a celebration of sorts and to see my 2^nd family of sorts, it was definitely time to have a do something fun getaway.

And so last weekend, my wife and I went to New York City to see friends that I’ve known from Air Force days (about 25 years). Friday after work, we drove into northern New Jersey braving the Nor’easter that was coming to get close enough to the city that we wouldn’t have to wake up at 6AM to do the drive to Jersey City to take the PATH trains (under the Hudson to the World Trade Center subway station) so that we could get uptown to the Museum of Modern Art (MOMA).

My wife is a big art person, and I appreciate art when it looks like something. A lot of modern art doesn’t really look like something or it just feels like someone is trying to get one over on someone. I know we’re all entitled to our own opinion. Thus, my opinion of art is that “if I can do it, it’s not art.” If it’s a huge canvas with a few horizontal or vertical lines of a different color on a monotone shading, it’s not art. If it looks like someone dumped multiple tubes of paint on a canvas and smeared them around, it’s not art. Call me traditional, but I’d rather look at the 10 millionth piece of art featuring royalty or religion, if the artist put some effort forth, than look at stuff by Andy Warhol. But that’s just me.

Getting to 53^rd Street to see the museum involves hustling across the train / subway station. For those people with Parkinson’s, it’s an obstacle course of people stopping, hustling, and bustling all around them. I could see how the noise, lights, and commotion of people could be a major impediment for many people, as I was really feeling it. As we walked to the newly-rebuilt passageway, things escalated “just” a bit as sirens went off and a voice on the overhead demanded everyone's attention and told about how police were investigating a threat and to stay tuned for additional updates.

Let’s just say that didn’t do wonders for my equilibrium. With the state of all things in the world right now and for the past 2 decades, being in a New York subway, especially under the World Trade Center, and hearing warnings is a catalyst for an overwhelming sense of fear and panic. Looking all around the facility, which is huge, thinking something or someone nefarious could be anywhere, left me feeling emotionally drained. 

In many ways in our society, people become numb to the news. When a series of pipe bombs in the mail gets passed off quickly in conspiracy theories as a “distraction” or a “false flag” and people stop thinking about the real human cost, it feels like we’ve lost something of our humanity, especially when they brush off the apology when they were wrong.

When I was younger (19), I can remember traveling to London a lot for concerts and music purchasing (before Amazon). I didn’t think anything about going alone. I can remember one time when there was an IRA bomb warning in the London tubes. The person on the radio just said, “We won’t be stopping at X,Y, and Z” like it was nothing. I remember that it happened, but I don’t remember being scared by it, just "affected." Now, it feels like we need to be scared, especially since 11 Jewish synagogue visitors were killed later last Saturday afternoon in an anti-Semitic rage. 

Thinking about how I found out, my cousin posting on social media that she was “safe” since she and some of my family live in Squirrel Hill (Pittsburgh suburb where it happened), it seems odd to think that this is how we have to hear and learn about people’s predicaments and whether they’re OK. Yet for many of us, this is how we get our news. When the U.S. Navy Seals got Bin Laden, this is how we heard about it. Baby pictures, engagements, marriages, moves, and all sorts of happy news is out there, too. It's how we communicate.

And so are the crazies, it seems, hiding under the banner of free speech as they incite their hate for anyone who isn’t like them in their depraved chat rooms. And sadly, the effects of this hurt everyone, not just their intended victims. These people come in all colors, shapes, sizes, and political leanings. With an election and so many issues on the line for so many people, the stakes are raised. Civility is out the window. The knee jerk reaction of the aftermath always comes back to “what will I personally lose because this person went off the rails?” This has nothing to do with the loss of a human being or shreds of humanity, but who is coming after mine. It’s really exhausting to feel like every day is the lead-up to a WWE wrestling match with someone coming in the ring and calling someone out for something in the most hate-filled and divisive ways possible. For instance, when Gab, the platform for many of these hate-filled attacks (and the one for the Pittsburgh shooter), starts crying about its loss of freedom of speech when Internet Service Providers jettison them from their service providers, it’s just really pathetic.

I mean, can’t we all just get along or live and let live?

In New Jersey, it’s really bad now on television with the attack ads on Bob Menendez, who has been accused of paying for child prostitutes in the Dominican Republic on top of corruption charges he was legally hammered with (a really solid reason to not let him run again, though he did anyway). 

For the extreme of that election ad, it should be said that watching any of these commercials and thinking that they steer people in a direction is something I’ve escaped by not having cable. All I wanted was to watch the World Series in a northern New Jersey motel (so I can see Boston win it all), and instead, I get to hear constant attacks on this or that in between innings.

Where are the good feelings, people? How do we stay active, informed citizens, when the landscape is so dismal with all its tellings of what is going on?

That said, how can this whole time of endless political opposition cycles that we live in not depress people, with or without Parkinson's? With two sides and no middle, where is the common ground and discussion for the rest of us who are content to live and let live, to be a part of our communities, and to want to make a difference for the world? Who is left to unite us when all we’re looking for is protection from and defense of as opposed to a solid message? That's not a uniter; it's a temporary reprieve.

But enough of that because there is art, which can be a powerful expression of sharing and creating emotion. While not all art is positive, that which is can be very influential to people in finding meaning and overcoming adversity. Even seeing sadness described, we can relate to people whose shared experience creates empathy for our plights.

For my money, New York is definitely a place to inspire this creativity, though given the choice, I prefer State to City (i.e. Ithaca, Letchworth, and Watkins Glen).

Nevertheless, at its most basic, New York City, the City that Never Sleeps, was built by creative and driven minds. Erecting buildings into the sky and digging tunnels underground to interconnect these worlds, millions of bodies and minds came together to build, work, live, sweat, and die together. I can’t help but thinking of what Manhattan once was (as wilderness) to the point that the industrialization began to the place that it is now (a concrete jungle).

I’ve felt this sensation of awe ever since my days going to London (1991-1996). As the skyscrapers tower over everything, it’s just so easy to get lost in the hustle, yet every person that is stopped, pushing, sitting, or yelling something is doing so from the perspective of a life lived. They built this or work within these buildings in an effort to produce something else. Their business desires made it possible and necessary. Each person who came to be born here was raised, educated, influenced, affected, and brought to be one with this place where endless traffic lines journey uptown, downtown, crosstown, or under the Hudson in an attempt to get in or out. People from other countries heard the call and chose to travel there as well, for the desire to support themselves and their families, as well as to be a part of this giant energy. Every single one of these buildings that seem to touch the clouds is made up of lives and stories.  In their own way, they were all someone’s something. They’re not just some exhausted body on the train or random European tourist, let alone a faceless blur. By being here, they become the voice of America, even if they hyphenate their original country with this one.

As people with Parkinson’s, our lives often feel like we’re on a journey to somewhere, just pushing through, too. Other times, they feel like we were on a journey, but somehow, we got derailed. If we’re not careful, we can start to feel lost in the journey with nobody around us who sees us as something more than another passenger headed for somewhere. We stop off to have our ticket taken. We order food and are served. We line up to go place to place. All the while, we start to feel disconnected in a world of people who are making connections but not really connected. How do we slow it down to see us and them as all being grand actors on the same stage?

In looking at it like this, we’re all journeying together to be here at the same moment in a life that was meant to intersect in Central Park, at the American Museum of Natural History, or within the packed galleries of the Museum of Modern Art. When we depart, most of us will most likely never see or know of one another’s existences again, but somewhere, in some corner of the globe, perhaps through photographic evidence, there will be traces of those moments where we played a bit part in the movie of someone else’s life. Maybe something we said will stick with someone. If this is the Butterfly Effect and one tiny action here creates an earthquake somewhere else, how can we stand out in the crowd to create something memorable and beautiful that will live on after we’re gone? What statue cast in bronze will be here for us? What street will be named after us? This isn’t about Andy Warhol’s 15 minutes of fame. This is about avoiding the third Mexican death and living on in the hearts and minds of others

What added value and creations will we leave behind for others to wonder who some “Daniel Webster guy” is almost 170 years after his death? Obviously, if this statue is here, he was someone, but just because someone set it there, is it actually someone important now or is it just a chance to reinvent history in romanticized notions of what never came to be?

With our lives, no matter whether they be Parkinson’s or Parkinson’s free, we are all on a finite timeline with an opportunity to bring value to the life that is sitting around the table waiting to be served, helped, entertained, or fixed. What have we used our brains and minds to do today? How will we be remembered? If this is our Day of the Dead, what words will people speak about us so we don’t reach that third death?

On our trip, we went to MOMA and the American Museum of Natural History, which are the kind of things that educate and inspire us (or they should). There’s something about being able to go into a huge hall with other like-minded people and reflect on Van Gogh’s Starry Night or works by Picasso, Monet, and Matisse. Of course, there’s paint scribble works by people like Jackson Pollack, though other people might find them to be meaningful. For me, as I said, I generally like my art to look like something, though I do like surrealism. Because of that, I was upset that Dali’s Persistence of Memory wasn’t on-hand (it was leant out). Let’s just say I didn’t feel the same about Andy Warhol’s Campbell’s soup can painting since he’s pretty much a hack (though I do like some of the Velvet Underground’s music). All the same, we took it all in, and I didn’t touch anything or give too many failing grades / comments out (at least out loud). Other people taking selfies and touching the frame of a Monet… not so much.

Don’t worry; it’s only priceless.

In the end, we enjoyed our time with friends and wandered the upper part of Manhattan and the beginning of Central Park (in fall). It’s really beautiful, even if it’s way too crowded. But then again, it’s the city. Of course, bodies are going to be pressed too close in the dinosaur halls of the American Museum of Natural History (minus it’s Tyrannosaurus, since the room is being remodeled). Fortunately, the oceanic life room is still available, as was the North American mammals room, the meteorite room, and the origins of life room. This, unfortunately, was all we had time for. Let it be known that I could spend 3 days in there, easily, if all the rooms were a go (gems and minerals were also down for remodeling). There's just so much there.

Because it’s all about expanding the mind.

As our Parkinson’s increases / we just get older, our minds often lose speed and storage space. I can’t say this doesn’t scare me, but while I can, when I can, I want to be living, learning, loving, and enjoying life. Parkinson’s has taken a lot from me, but sitting here, I don’t want it to make me a middle-aged man with his memories just yet. I want to find excitement and conversation and purpose. I’m glad I had this weekend (and Monday night when I went back to see my friends again in northern New Jersey) to do that.

No matter what the next years of Parkinson’s brings, I want to hold tight to the positive and push away the cold winds of winter as long as I can. Better to go gray / white with class (like George Clooney) than to end up feeling and looking old before my time.

Neurologist Visits / Alternative Choices (Beefitandhealthy)

The process of healthy living is an ever-changing and experimental design where we experience, learn, do, experience, readjust, learn, do, experience, readjust, and repeat. That's a good thing. Sometimes, we get it right the first time. Sometimes we don't. The point is we never stop trying to be the best us we can be.

In medicine, both pharmaceutical and alternative, the point is to find ways to heal a person, safely, quickly, and cost-effectively (though cost should never be a reason not to be healthy). This is done in ways that are meant to be beneficial and lacking in harm. Researchers test these processes to improve and review them. That's a good thing.

That's what I'm doing.

Scientists will say that the world is made up of chemicals, and that's true. However, some people will see medicines only in terms of harmful chemicals (like what's under their sink) mixed together in ways that lead people to see their strange, long, and unpronounceable names as some evil force.

This is not to say all medicine, regular or alternative, is bad or good, but it is to say that pronunciation and personal lack of understanding should not define anything's effectiveness.

Due to many medicines' side effects, alternative medicine has become popular for people by boasting its products as all natural. Here, many people have come to want to experiment with / experience the effects of naturally grown plants and the like to avoid medicines when it is safe to do so.

Keep in mind, your doctor and scholarly research can help you make informed choices on this.

It's easy to understand, but it's important to remember all of our bodies work differently, so effects may vary. Also, as based on peanut and shellfish allergies, even "natural" products may not jive with our bodies.

For my time with Parkinson's, my body has been very "sensitive" to some pharmaceuticals (as my neurologist says). In fact, some of these medicines' symptoms are downright scary.

PLEASE NOTE - I talk about my symptoms not to disparage a medicine, but rather to express my experience and stimulate informed conversation with your providers - not an absolutism for all people everywhere.

Whether we get better living through one or the other type of treatment, it is often our body's choice on how we handle things. For instance, I had problems with Artane (trihexyphenidyl) though other people don't. I had problems with Requip (ropinerole) though other people don't (nevertheless, its problematic side effects are more common in people than some other medications - a discussion I had yesterday with my neurologist). I almost instantly had problems with Benztropine (cognitive) and Prozac (weird woozy / nauseous). Thus, I quit both inside a week.

My time on Benztropine was so short, I had to look up the name of it again! Thus, sometimes, we just know when it's bad, so I removed it from my life pronto.

Also note, while I wasn't thrilled to be needing to be on Prozac (my problem is anxiety / obsessing on what if - not depression), I did find SOME NOT ALL of Lexapro to be OK for the time I was on it. I liked the purr like a cat feeling (oh, the sky is falling. that's OK). I didn't like the lack of amorous / positive feeling. Also, while on it and Azilect, I couldn't drink. Not that I need a Yuengling now, but it wasn't an option anymore.

Now, I'm going without it, which my doctor felt was better in spring and summer since it doesn't coincide with seasonal affective disorder kicking in at the same time. I feel more under control, but I do recognize that this may change and necessitate a return to it.

I have had luck with Azilect (rasagiline). It's my go to zombie killing medicine. Put simply, my body thinks my dopamine producing cells are evil. Hence, it tries to kill them. The medicines kill the defense system, which allows dopamine to flow free. If it doesn't, my brain gets filled with Lewy bodies, which are zombie-like.

As a former educator, I am big on empirical understanding as well as hermeneutic phenomenology, which is me describing what's going on in detail so others can find meaning in it.

That said, sometimes, we need to accept life's problems for what they are. Don't touch a hot stove. Don't put a fork in a socket. Don't touch a snake that looks like a copperhead (even if it just turns out to be a non-venomous northern water snake - it still bites). However, when we have a choice...

Then we should try all of our options. 

Thus, at my wife's urging and through one of her friend's advice, I am trying HEMP OIL. 

First and foremost, I was never a big fan of medical marijuana as the be all / end all answer, so I'm not going into this looking to promote that cause. However, in this version of treatment, I am willing to see what will come. 

When I asked my neurologist about medical marijuana, his statement was too little bang for too much money. This Pennsylvania government website explains some of that. Insurance tends not to cover it as well, which makes it cost ineffective. Also, while it stops tremors (helps symptoms), it doesn't replace or create dopamine. There are also side effects with it. Additionally, while it is legal in some states, it's regulated, and it does have issues (see Michael J. Fox Foundation).

Once again, it might work for you, but it might not. 

In order to see firsthand how HEMP OIL works, I am working with the good folks at Beefitandhealthy in West Reading, Pennsylvania, to see how their HEMP OIL product (not medical marijuana and not cannabis-originated sources - rather hemp sources) might help my tremors and anxiety.

Note that hemp oil is LEGAL. CBD oil is not legal in many places since it contains THC. Hemp oil does not, AND it's from a different plant.

The legality of CBD is still a slippery slope. I am not a lawyer. I'm just a blogger. Take my advice as an opportunity to further research this at qualified sources through people who are pros.

I found this site, which said the following on legalilty (see it for all states - the columns are recreation use, medical use, both, and legislation):

In short, my goal is to not have to Take a Walk on the Wild Side (detailed descriptions of dopamine agonist effects on MY - NOT EVERY - BODY), not have as many tremors, and feel relaxed. Fortunately, I have this option because the Farm Bill of 2014 helped pave the way. Now, as my doctor said, "Many patients swear by this."

My journey will begin as soon as I go back on AMANTADINE or switch to GOCOVRI (a newer, improved Amantadine - name brand only, so I might not be able to get insurance to cover it - NOTE - after looking at manufacturer's website for effects, I chose against this. Money was not an issue). Amantadine was my original anti-tremor med. It kept me up late, but I woke up ready to go. It also gave me a rash, but it isn't a concern (except when it is), though it isn't sex-a. No chance of me doing Magic Mike sessions any time in the near future if I'm on that.

In short, that option for dopamine benefits is my last option before going Levodopa / Carbidopa, which only lasts so long before a body becomes requires more of it to benefit from it (when symptoms become worse and create more potential side effects like dyskinesia). Then, it's deep brain stimulation time.

TRIGGER WARNING - THIS SHOWS PATIENT GETTING BRAIN SURGERY

My goal is to let Lisa and Amy help me out in this journey to keep being Dan by testing their medicines to see how they work for me.

In Lisa's words regarding the hemp oil I'll be using...

"Our company spent nearly a decade developing a highly effective strain of hemp.  Most hemp companies rely upon CO2 extraction because it is cheaper and easier than lipid infusion. Our lipid process infuses the full range of plant nutrients directly into a carrier oil. we use organic coconut oil and MCT oil."

She does make it clear that her product still contains ".03% THC which is legally allowed due to the 2014 US Farm Bill."

Finally, she added how "lipid infusion provides the highest terpene and phytocannabinoid profile as well as vitamins, minerals, flavonoids and polyphenois from the hemp plant."

I'll be detailing my journey as time goes by. I look forward to seeing where it goes. Being healthy and tremor free sounds like a good thing!

They also offer other services, if you're so inclined (such as ionic foot detox and reiki). I recommend going in there to see for yourself. 

In the end, your future has options. Some work; some don't. Explore the possibilities and share them with others!

Learn enough to make your life the best it can be!

When it comes to hemp oil, I have nothing to lose but my tremors.

25 Things I Learned about Parkinson's since I Was Diagnosed.

Up until immediately after my Avalanche Day on September 27, 2016, all I knew about Parkinson's was:

1) tremors
2) Michael J. Fox
3) Muhammad Ali
4) I felt pretty uncoordinated doing the tests in my neurologist's office.
5) Being given 90% odds of having it made my wife cry. Having it made her cry again.

Since then, I have learned a lot more.

1) Despite waking up the next morning filled with strength and confidence, which are essential, I was very naive to be thinking that would be enough. There are still a lot of things that are coming down the pike to be afraid of (freezing, aspiration pneumonia, "bridge out" signs in my brain, more trips into a CAT Scan), but I have learned that life is a choice. As long as I can, I'm going to choose it in whatever form I can and keep doing the things that make me Dan (and I'm going to celebrate them! Besides, if I don't, who will?!).

2) I have learned to use People First Language for myself, and as time has gone by, I feel more conscious about talking about what I can still do in Stage 2 when some people who are in later stages and the same stage have lost the ability to do a lot of things that I might appear to be bragging about (I am most definitely not). However, I'm not going to stop doing or pushing myself to enjoy them, but I am working on empathetic understanding in writing so that I can promote positive enjoyment of life and not "I can do this; look at me! I am the most wonderful person ever!" (that said, there is a picture of the Hawk Mountain wall I climbed last summer in my bedroom to remind me about what I can push myself to do).

3) There are many great support groups out there. Unfortunately, in Stage 2, I don't have the ability to talk about things like DBS, any interest in talking about medical marijuana, or experience with where I'm going other than I read about it (in a book), which seems like what many questions online are concerned about (I'm glad there are people out there to share answers with and get them from). I do like the articles and updates people post, but with being a teacher, I have access to some serious databases as well as a wife that knows her medical information to keep me informed of what is what when my neurologist doesn't "keep it 100" in our visits. I do follow posts, but I don't always join in on the 50 people respond to a question posts. All the same, I do find them valuable. That being said, I enjoy being able to share with you and see what's going on with my fellow Parkies. When the DBS days come, I'm sure I'll learn more from others who will help me with that decision in the same way I have learned about the bad effects of some medicines.

4) I have learned about the UPDRS (Universal Parkinson's disease rating scale). After hospitalization, I went up from 4 to 37. Personally, 4 seemed like a good medicine day, but now I'm in stage 2 for realsies. Yep... here's to the gift that keeps giving. Those next 30 points are going to be a ride of fear, compensation, and adjustment.

5) I've learned that almost every symptom I have is "normal" to a Parkinson's life with its medical "gifts," stress, and depression, and yes, that sucks. Sciatica? Check. Hearing? Check. Not being able to smell my own gas? Check. My big toe hurts? We'll see.

6) My biggest sadness is how my condition affects those close to me. However, I'm not going to die tomorrow. Yes, I do like being asked how I am and offered hope and well wishes. I like people knowing that they can joke with me. I'm not going to take offense. Really. I have a strange sense of humor. I like when people can understand that and still enjoy it. There's a difference in wishing me dead and calling me "Shakes the Hiker." That said, I'm happy for the family and the love. Without them, it's a lonely world. Besides, if I accuse someone of a hate crime for calling me clumsy, it's not for real. It's just how I take seriousness out of the situation.

7) Hyperhidrosis - That extra sweat / really thirst thing, which I get really bad on the trail (and while sleeping in bed). It has a name, and it's connected to PD. I wrote about that in detail HERE.

8) I found out that getting Lyme disease at the same time as Parkinson's was not as fun as getting a free toaster with a purchase. Lyme is the great imitator, by the way. It's nasty stuff, and you can learn about it HERE.

9) Bradykinesia - I've learned that anything that can go slower on me will... except for frequent urination. I'm as confused as you. That said, this leads to #10, which is my second biggest fear (by the way, #3 is my tremors going nuts when I'm having to deal with a serious issue with a student).

10) Parkinson's Mask - I wrote about this really well HERE. Nothing like being accused of having resting bitch face / being a moody bastard when it's not true.

11) Dystonia / Restless Leg - I wrote about this a lot more thoroughly HERE. Important note: My left foot is pretty messed up and I visually walk "oddly," but with tight shoes + hiking boots, I manage a lot better. Other people's dystonia is much more severe. These solutions won't help those people.

12 ) Cognitive Issues - My only experience with this was the side effect of a medication I quickly quit. That sucked. Additionally, it scares the bejesus out of me to think more is coming, someday. My mind is important to me as a writer / teacher / human. I'd like it to function well for a while.

13) Lethargy / Apathy / Depression - All those great plans... yep. If only I don't feel too tired to make it happen. It's "normal" for Parkies, so know that we have to motor through it.

14) Substantia Nigra / dopamine / Lewy bodies - Without all of the technical terms, I learned about how the body makes dopamine, which is a WD40-type pathway protector / happiness maker. Sometimes, the body's defense mechanisms (genetics) are messed up and the body goes after these dopamine neurons like they were zombies. Interestingly enough, after this attack takes place, the body is filled with zombie-type cells (Lewy bodies). In a way, we could say they go wild and mess up their prey, leaving zombie-nastiness in the brain. I wonder if this is how The Walking Dead will end.

15) MAO Inhibitor (Monoamine Oxidase Type B) - Azilect is my go to medicine, and it works, but it's expensive without insurance. Nevertheless, without it, I'm toast. All that stuff in 14 is pharmaceutically dealt with by this.

16) Dopamine Agonist - Ropinerole (fake dopamine) is what keeps my tremors under control. So far, it's doing well. All that stuff in 14 is pharmaceutically dealt with by this.

17) Livedo Reticularis - not a pretty side effect I had from one of my meds. Because of this, I had to stop it. This isn't my legs. It can look worse than this. Mine were just beginning to turn purple.

18) Aspiration pneumonia - the number one killer of Parkies. Really. A story in 2 parts, which begins HERE and ends HERE. Knowing what will most likely take us out is damn scary. As I go for more doctor visits for sleep apnea and a real deal swallow study, I'll be talking about this and dysphagia a lot more.

19) Hallucinations / Sleep issues - Now I know why I have wild dreams and crazy sleeping habits. That said, I really like Eternal Sunshine of the Spotless Mind. Who knew it would stream in my head while I sleep? I also wrote about DREAMS and COMMUNICATION WITH MY DECEASED GRANDMOTHER in past posts.

20) The best is yet to come, even if there are some rough things to come, too. Guys like Jimmy Choi are living proof of Muhammad Ali's attitude when he said, "It ain't bragging if you can back it up." Choi still runs marathons and competes in American Ninja Warrior despite his PD.

This is the same attitude that baseball great Ted Williams had when he didn't sit in the final game of the 1941 season to preserve his .400 season batting average. Instead, he went "Beast Mode" in the final doubleheader to take it to .406. Here, all of us Parkies can raise our game a little bit and find ways to enjoy life, even if we can't do a lot of this.

If you choose to enjoy the following video of the Baseball Project celebrating Ted Williams, remember it's NSFW.

21) My whole body is super-warm these days EXCEPT my toes. Go figure. Here's to wool and heavy hiking socks to keep me warm.

22) Man, I hate the feeling of being overloaded mentally. When things are out of synch in a cacophony or flashing world of lights, I go out of control with them quickly. Ugh. Not fun or my favorite at all! I wrote about this feeling HERE.

23) You'd be surprised what you can give up if it means being alive while staying on the straight and narrow world of what Parkinson's and its meds take from you. I know there are things in my identity, which I will lose someday; however, until that day comes, I'm going to choose to experience them if I can. In the meantime, I wave goodbye to alcohol, sleeping in the same bedroom, clipping my own fingernails, going shooting with my dad, the speed of my typing, sleeping at normal times, not needing a disclaimer, not having to worry about what things to avoid, not worrying about the Parkinson's process on pretty much every one of my body's functions, not knowing that my condition will cause people sleepless nights, and holding a camera steady while shooting video, to name but a few. Obviously, the list above is an iceberg, but you get the point. In the end, happiness is other things.

24) Speaking of disclaimer explanations, HERE'S MINE.

25) That whole thing about a big vacation bucket list...
A) San Francisco is up next with the Yosemite waterfalls.

B) The Great American Petroglyph Tour to see the Great Gallery before dystonia ends long walks for good.

C) Italy

D) Washington / Oregon

E) Yellowstone

Of course, there are other vacations and trips with people that don't involve walking like those will, and they're on there, too, but yeah... there's something about sharing beautiful images with people we love, especially if the bomb inside that went off before is going to go off worse in the future, but for now, there are things to do and "miles to go before I sleep."

I just want MORE TIME to get to them.