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.
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.
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.
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If you're interested in the hearing, here are some articles.
"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."
"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."
Unlike the fake demons, ghosts, ghouls, and other people celebrating in Salem, Massachusetts, every Halloween, there are some really scary realities that we people with conditions like Parkinson's experience. Often, the medications we take while being treated for these conditions, can create risks that are downright frightening. These create the kind of situations that make people question the nature of their treatment and hope for being better.
That's not good.
Thus, this is a story about choosing the right meds with your doctor and understanding that not all medicines work for all people, so patience is everything.
FIRST AND FOREMOST, being medicated is trial and terror, and it's not your doctor's fault if the pill needs to be a greater dose or yanked due to side effects (getting the right dose is called titration). Bodies are different, so what works for one doesn't work for others (and vice versa). Thus, my effects listed below might not be yours.
Additionally, your pills could take a few weeks or a month to show effects other than things like feeling nauseous. This lengthy healing leads people to frustration, especially when they look at the price tags on some of them (a month of Rasagiline, AKA generic Azilect, is over $500 for 30 pills if the buyer had no insurance).
We can attribute this frustration with this process to a few factors:
NUMERO UNO - we are just plain scared of this dark place we entered into. Things that exist there are designed to hurt us (or so we believe).
Understandable.
Next, going back to the beginning of the prescription process, one of the most important concerns that people have when it comes to taking medicine is simply put, "Will it make me better?"
The next question is either, "How much does it cost?" or "How fast will it work?"
Whichever way, they're the follow up questions.
Our doctors explain this. Our pharmacists double check what was sent against additional effects of taking A with B or C, because, you know, we don't want a third arm growing out of our backs and they don't want a lawsuit on their hands. They also ask to speak to you, too.
Then there's fear of "chemicals" in our bodies, desire for natural medicines, or desire for medical solutions that are kept from us by law. We want to know about these, too.
Additionally, one of the most common thoughts of people of my age and older, who saw the advent of medical commercials barraging us on our television sets, is how people were now able to go in and say, "Take your Warfarin and give me Eloquis or Xarelto!" Amazingly, just by seeing a commercial, we are all planning to be as happy as these people on television who took the Pepsi Challenge and just said no to the wrong choice.
As with the way medications are sold on television, the beginning of the commercial talks about how wonderful you will look while swimming, performing in front of crowds, proposing, or enjoying family / friends. After that, at about the half way point, the announcer changes his or her tone to "faster than an auctioneer" and reveals all of the side effects you could get. These cover everything from rashes to death. We are warned not to operate heavy machinery, and that's a good place to not be. We don't want to be messing people up with our choices to drive farm equipment in crowded places, when we pass out.
To continue this discussion, I give you the Otezla people, who stand as my arch nemesis in the world (goll dang you and your usurping of Katrina and the Waves' "Walking on Sunshine!).
Now in reality, I have no issue with Otezla; it's simply just an easy example to show since we all watch the commercials on television, and we get what's going on in them. This company manufactures a drug to help us, and it wants us to consider taking it. Product recognition isn't necessarily a bad thing, but alas, some of the effects that some of the people taking it might experience are. It's all about how "sensitive" our bodies are to the medication.
This goes for all meds - not just that one.
Nevertheless, in cases where people taking medicines / procedures could become a danger to themselves and others, we often don't know what to do or to look for when it comes to monitoring someone's behavior. Do we hide all of the dangerous instruments of death (to include the butter knives) to protect us (and them) from themselves?
For instance, I was talking to someone I knew, and he told me the story of one of his fishing club associates who had issues after having anesthesia (BTW - this can hit Parkies and people with Alzheimer's hard, too). As I am not a doctor, I can't say what the condition is from the description I was provided, but from how the symptoms were described, the person in question seemed to be more and more agitated than he used to be. In fact, now he seemed to be ready to instigate trouble over things that most people would never get down to fighting over.
"Looking up issues on the Internet" (WARNING - not always a good thing), I saw something that would seem like a good starting place: Post-operative Cognitive and Delirium Dysfunction. Science Direct states:Delirium and cognitive dysfunction are common manifestations of acute brain dysfunction, occurring in up to 70% of post-surgical patients. Developing postoperative delirium and postoperative cognitive dysfunction have long-term consequences, such as higher morbidity and mortality and increased hospital stay, and it increases the risk of dependency and institutionalisation. Despite the relevance of these cognitive disorders, the specific aetiology is still unknown, and there are many factors that have been associated with its development. Between modifiable factors associated with the development of Postoperative Delirium is the exposure to analgesics and hypnotics. The multicomponent interventions for prevention and treatment have been shown to reduce the incidence and severity of episodes.
This presents a slew of issues. If we are possibly a danger or in danger due to our own medicines, then how do we confront the consequences of this when the time comes to choose the value of a pill over the value of freedom from side effects? This could range from driving to working to owning weapons (I grew up in a hunting home all of my life, and nothing problematic ever happened with the weapons my dad owned, so I'm not touching the gun control / ownership argument because it only matters here to the choice of the responsible owner).
NEVERTHELESS, I state that how we choose to give up independence is a question that a lot of us will confront some day. As I am an American, I look at how driving, working, and gun ownership define so much of our country's inherent attitude. That's not a bad thing or a good thing; it just is. Thus, when we come face to face with something that could create a danger to our interests / hobbies, can we accept that we can't perform them anymore? Can we afford to scale treatment back?
I can't answer that either, but I do think about it with work and driving (there are no guns in my house, so that's not an issue).
Another perfect example of this is a woman I know who doesn't drive at night since she only has one good eye. Instead, her husband takes her places. Working through these issues helps makes sense of that type of thing. I never hear her complain about it. In fact, it makes her and her husband closer since there seems to be a valuable sense of protection and love in that act. Surely, there will be women who say they don't need a man, and while that shows a streak of independence, the reality with PD is that we will eventually need people to button our buttons, clip our fingernails, or help us around (to include wiping our butts!). For this, we need to understand that the new normal might be different, but it can be just as fulfilling / personal in different ways (though I'm not sure butt wiping counts as fulfilling).
I face the contemplation of this now in my life as my students who owe me work come in to hand it off. It's important to say that I am facing the future of liking a lot of things about teaching, but also in facing a future where I wonder when the serious freezing and pausing is going to come and make lecturing / grading impossible.
It's a difficult prospect to figure out, but yeah... that's where I am since all of my optimism is a reaction to the scary future (loss of independence, family tears, loss of mental functioning, inability to dress myself, freezing, deep brain stimulation, financial woes, etc.).
This leads us to a place in the past (that is no more) where the medicine I was taking affected me with all of its side effects at once. The name of this medicine was Benztropine. It is one of many different medications with a chance for extreme effects (others are HERE - to include Prozac (Fluoxetine)). Many times, they don't happen. Sometimes they do.
Going down the chart, I list you a few of these. You can see the rest at the link above.
being forgetful (this is the worst for me since it reminds me of my Gram's Alzheimer's and my loss of identity)
In this 1, I literally found myself fishing for words. I would come back with the wrong words, and I knew I was wrong, but it was the word that came out of my mouth all the same. Being in a place like this, where I am trying to find the answers is a bad place to be. I had the same issue last fall with Artane. Amantadine was just a freaky rash that came up after a couple months, but being off meds for PD left me BLAAAAAAAAAHHHHH!! last autumn. This time, in just a short week (tops), I was forgetting things I saw 2 seconds beforehand. I literally felt "far less than intelligent" knowing that my answers were dysfunctional beyond just word fishing.
It was like the bridge out sign was up, and I needed to find a different way around to where I was going. The only problem is that the alternative routes meant driving all over the place to find the way back to the place I was going. My "map of the world" had become faulty.
constipation
dizziness
dry mouth
This is really bad - I thought it might be due to the sleep apnea machine I've been using or my seasonal allergies, but yeah... my mouth was definitely in need of some serious flavored stuff to take the nasty away
Also, I should note that I take off my sleeping machine mask in the middle of my sleep! (usually at about the 1-2.5 hour point)
headache
irritability
lack of appetite
muscle cramps
This is really bad - My right foot seems to be getting ready to go dystonia style like my left foot, it would seem with really rough, movement stopping pains that I need to stretch out to make them vanish.
seeing things that are not there
I had also been seeing "ghosts" in the form of movement out of the corner of my eyes. I know they're hallucinations, but it still makes me jump when it happens and I can rationalize it back to unreal.
I also had felt "trapped in my room," which happened one night when I couldn't find the doorknob or the light switch to exit the bedroom to do a midnight bathroom visit. Unlike MISTAKEN SYMPTOMS (an old post I wrote), this wasn't a "we'll laugh about it later" kind of thing. Instead, it was Marley's Ghost taking me to see the future of my PD life.
thirst
tiredness
trouble concentrating
trouble with sleeping
blurred vision
lightheadedness
I also have twitching eyes, which didn't appear to be on the Mayo Clinic's list
For me, the only answer was to quit it cold turkey, which I did. I never looked back.
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In hindsight, this worked. I didn't replace the medicine since my doctor felt we could put that off for some time (until we go with "big guns" medication, but now, a few weeks later, I'm still in fear of what could be with some of these PD things that are coming. However, in the weeks it's been since I started this story and posted it... I feel a lot better about my chances at the poker table of Parkinson's.
Nevertheless, for all of the crap that's out there with our shared condition, I choose to be optimistic because pessimism is a lousy choice. Sure, we all need to cry sometimes, but when we're feeling capable, we need to work (however slowly) to acceptance of what is.
Thus, my goal is to go swimming with Lieutenant Dan as much as possible, because, like you, I'm fighting a tough fight (no matter what stage we are at). You might call the condition of dealing with it "purring like a cat on a throw pillow." That's fine, and I do like to feel that way, but the ultimate choice is listening to Forrest and accepting the hand that's sitting in front of me.
So, Gary Sinise, I'm ready to jump off the boat, too, and make my peace.
(Author's note) The non-fun of when we twist our backs out of whack and sciatica sets in. It happened again today. Ugh! Thought I'd share this old blog I wrote over a year ago. What
a difference a week makes. Last Friday, I was pushing 8.2 miles round trip up
the mountain to the Appalachian Trail in Port Clinton, Pennsylvania (near the Cabela’s in
Hamburg, for those who are more familiar with landmarks, and really, for all
the tourism it brings, that really is an attraction). By Tuesday, I was waking
up in pain with serious lower back nastiness that left my right leg in pain and hobbling to the point where I felt I had gone 12 rounds with Jaws and lost.
As
Tuesday was a holiday, I was ticked off because I wanted to hike and lose
weight while seeing some sights, but nope. The pain made me feel really gimped up, so it was hard to get moving to go spend the 4th with my family. Then, when I went home from my parents, I was in worse pain than earlier from the pressure on my back. Working
Wednesday and Thursday didn’t help much either. Nevertheless, by Friday, I was determined
that my Parkinson’s induced sciatica was going to get better. It had to. I’ve had it a few
times before, but it always went away in a couple days, but yesterday had me
hobbling really badly in the morning and afternoon, so other than tutoring a
soon to be 9th grader for an hour and doing errands, I was eager to
get back home and rest again instead of getting out and doing what I wanted, which was pushing for distance on the Horseshoe Trail (relatively flat local trail that I can get to in a short time without spending a ton on gas).
About
3-4:00PM, I finally got up and moved around to see the scenic sights of my
living room and kitchen, which really are nice since my wife is quite the HGTV
person, but at the end of the day, I’d rather be seeing a mountain or a
waterfall, personally. After moving around for a little while, I actually felt
better and more stretched out than my stretching exercises allowed me to be. It’s
definitely interesting to see how rusty Parkinson’s can make me; that’s for
sure!
Silverthread Falls in the Poconos of Pennsylvania
So
last night, I was standing and sitting more comfortably and even was able to bend down
to pick things up better, as long as I didn’t sit too long. As I tried to take
it easy, but keep myself stretched out, we decided to go to my wife’s work to
take advantage of the hydrotherapy option for stretching and feeling better.
Yep, one of her job benefits is to be able to use her retirement community’s
indoor pool and hot tub, and like Eddie Murphy playing James Brown, I was
feeling “too hot in the hot tub (in a good kind of way, like we do when we
would go see our friends in Florida at the vacation home they would get)”!
There’s something about a water jet right on the source of the pain to make it
all feel better.
Michael J. Fox Foundation is big on moving and exercise to include yoga. Other
recommendations that looked good on the list included the ever popular massage,
which is definitely looking to be a vacation option – when the last month of
the term goes by and I get 2.5 weeks off to unwind before classes start again.
I’m always down for a good massage, and I promise to purr like a cat when my
aches and pains get taken away.
Acupuncture
is another option for pain relief, but I’m not convinced about that yet. Maybe
someone who had it done can convince me otherwise. I also read a trusted source (Paul Offit) who wasn't subscribing to that based on his research, so yeah.
Other non-surgical choices include ibuprofen, stronger meds (which didn’t help for my
spondylosis issues, so I’m not into going that route with this), stretching, hot+cold
treatments, and medication. Of course, there is surgery, but as my one former
PA once said, “Go to a chiropractor or a voodoo practitioner or do whatever you
can before you cut because there are 3 options that can occur.
1)You
get better (ideal)
2)You
don’t improve (pain and money and time)
3)You
get worse (more pain and money and time)
So at the end of the
day, I do like that advice enough to say that I’m not backed up into any corner
for surgery I don’t necessarily want or need.
All the same, I sit
here today reflecting on how we Parkies seem to have won the lottery with our
condition and its accouterments, so the next time you’re feeling a symptom,
look it up on a reputable site like Michael J. Fox, and you’ll probably find
that, like back pain, it’s a free toaster for playing this game.
That said, thanks for
listening to me whine about my pain. Know that I feel a heck of a lot better
today, and I’m thinking about having a fun day with my family for my aunt’s 71st
birthday tomorrow. Before that, it’s dinner, an independent league baseball
game, and fireworks with the wife.
Life is too short to
not get up and make ourselves find ways to enjoy it.
Here’s to a great week
for all of us (Author's note - and a quick end to this current round of sciatica pains)!
