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).
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.
- 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)
- lack of appetite
- muscle cramps
- 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.
- trouble concentrating
- trouble with sleeping
- blurred vision
- I also have twitching eyes, which didn't appear to be on the Mayo Clinic's list
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.