A Return to the Magical Land of Amantadine! (REVISED - April 2018)

           Like many medicines, Amantadine (which sounds like the name of a magical kingdom like Narnia or almost anything out of Star Wars, Avatar, or the Lord of the Rings) was originally created to treat influenza, but it was found to be a very helpful product for Parkinson’s. While that makes it very lucrative and pricey in non-generic form, like all medicines, it’s definitely not the cash cow that the blood pressure medicine sildenafil was when it was revealed that it also treats erectile dysfunction. As a result it became Viagra. For those not in the know (and I googled this just now to find an accurate price), Viagra is about $60 a pill! As with any other med, when a person needs it, he or she pays the price or goes without it in this capitalistic world. Fortunately for those needing it, news also shows it will be available in December as a generic medicine (2 years early), though with only one company making the generic, it won't be that much cheaper (once again, capitalism and the Law of Supply and Demand). That said, for those getting generic sildenafil, that came out at $20+for a 30 pill prescription that wouldn’t be honored if the doctor prescribed Viagra.

            So yes, in life and in research, we learn (and I teach) that all actions have a reaction. Sometimes, it’s a good reaction. We clean up pollution, and wildlife is able to flourish in that area again. I donate $25 to a cause, and that cause can do something with it for the positive (hopefully and ideally). However, there are side effects to any reaction. For instance, I take the trash to a landfill, and that trash collection site becomes a less viable world (a necessary evil - unlike Trump stripping UNESCO biospehere reserve tags from beautiful places and trying to eliminate National Monument protection from other sites, but I digress). I give $25 to 1 cause, say the Ice Bucket Challenge, and that money might have went to something else. Maybe I won’t be able to do dinner at McDonald’s and an overpriced summer blockbuster, or it will take away charitable funds for other conditions that I would have donated to in years past. I’ll live without the food, but what will happen to other charities if they don’t create fads that wrack in big bucks (and the Ice Bucket Challenge raised $115 million the first year, but just a little over $1 million when it wasn’t “cool” to post videos anymore). No knock on what they did, which was initially brilliant since it worked to find a cure to a devastating disease that has harmed and destroyed countless lives (victims, families, friends) since well before Lou Gehrig gavethe disease of ALS an easier to remember name.

            Bill James, who is a Sabrmetrics guru (see Moneyball, the movie with Brad Pitt based on the book by Michael Lewis - though it only mentions James once at the end), wrote in his giant baseball book of baseball statistics (Historical Baseball Abstract) that when we look at statistics and facts (as applied to baseball), we need to see:

•      1) what is missing from the picture?

•      2) what is distorted here, and what is accurately portrayed?

•      3) How can we include what has been left out?

•      4) How can we correct what has been distorted?

There is also a follow-up part, where I ask:

What good things come from these reactions?
Why are the reactions caused?
What side effects do the reactions create?
How can the bad reactions be prevented?
Are there further ramifications of the reactions?

I think about this now as I experience my own effects with Amantadine. For instance, on a good note, my hand doesn’t tremor as much (nor does my left foot, though the right one is almost always tapping in restlessness). It’s not perfect, but it’s better.

However, there are a series of side effects that it does cause. One of these is nausea. While it’s not sickness for me, it means I don’t feel like eating as much or as often. Right now, this is A-OK with me because I consumed enough calories since returning from my time England on July 8, 1996, to cover me until next year, so half rations means I might actually have a chance to get into some of those old pants I’ve been saving because I’m not giving up hope that I’ll be able to get into them again.

The big side effect that hits me is the lack of sleep I’ve been getting as compared to what I had been getting. For example, I would sleep 10+ hours and still feel tired (writer's note April 19, 2018 - that could also have been from my sleep apnea). Now, it’s a fight to get to 7-8 hours. I feel wide awake when I get up to go to the bathroom in the middle of the night, and I’m not able to fall asleep on a dime when I return to bed, which leads me to wonder if I’ll be awake all night. That said, when I finally am tired enough to go to bed, I have no problem sleeping. Not that I know what traditional insomnia is, but I am usually up until 11PM / midnight, and then I wake up about 5-6AM and try to stay asleep until 7-8AM. I’m taking this as a good thing for now because I don’t feel tired enough to nap in the afternoons. I also should say that I'm lucky since I don't feel any of the other side effects with it (you can see the whole list here, but they include light-headed-ness, ankle swelling, hallucinations, and a rare purple color on the legs).

On the note of being lightheaded, I will speculate that Parkinson's is also why I can't be on a decline (with my head lower than my body), though I have none of the weird feelings just going from sitting to standing or standing to laying down that some people have. That said, I'm not sure if it explains why I sometimes can't ride as a passenger in a car without feeling motion sick (though I have no problem as a driver - I guess I'm just weird). 

As for Parkinson’s itself, I can’t say much of what’s changed about me other than rusty knees, dystonia, and bradykinesia effects I've blogged on, though I’m always asked by the doctor about memory, and I always say the same thing: I feel sharp and on with my thoughts. I still type quickly, and I am responsive with replies and connections. Knowing that about me makes me happy, though it does cause me to feel concerned and sympathetic to those who aren't at that point anymore in the stages of their disease. 

I will also say I do feel more energized with the Amantadine (no desire for afternoon siestas). I have been doing rails to trails walks lately (and will today). Though they aren't long walks in wooded places, they're still exercise. Fairly soon, I'll do one today to get the knees loosened up again. The key is to not let the voices in my head make me stagnate (easier said than done sometimes).

I'm also always asked by my doctor about vivid dreams, which I have to say has always been the norm in my life. I've written before about how I love the idea of dreaming, be it during the day for novels or travel or at night to see what kind of a show I get. I'm fascinated by dreams, and since they're not scary, even though my books are about the supernatural, I'm OK with that.

That said, when it comes to Parkinson's effects, I definitely feel the afternoon heat more than I did before. Nevertheless, some of that’s easy to combat by hauling water with or staying in the shade. Besides, if I need to, I can always grade stuff or work on my writing in the afternoons (something I’ve been doing lately, which is why I haven’t been blogging – almost done with the first draft of The Rules of the Game!).

So to all of you fighting the good fight, here’s hoping you feel good and that you have worked around your effects and side effects to enjoy your lives! Happy summer 2017!

Medicines

            Way back when, as the legend goes, the original Aztecs of Mexico came from their ancestral homeland in the southwest United States at a place that is called Aztlan. Now, this place is largely thought of in revolutionary terms by people living south of America’s border who feel that there should be a Republica del Norte to re-annex the lands lost in the Mexican-American War. While I’m not here to discuss whether I’m willing to give land back that stretches as far north as Oregon, I will say that as a person interested in history, archaeology, and my own brand of fictional stories, the concept of this falls nicely into my books on the fictional Utah location known as Blackrock Canyon since it allows for a mysterious pre-history in a region that is still populated by the remnants of cliff dwellings and other Ancestral Puebloan sites.

            For this knowledge that I have accumulated over the years as a part of my curiosities, I guess it’s no surprise that with my new Parkinson’s medication being Azilect, I would often move to tell people that I’m on Aztlan. At least that’s what my mind tells me until I realize the Azilect has nothing to do with the Aztecs and everything to go with being more mobile and fully treated to continue to enjoy my life as I know it for as long as I can.

All the same, if you’ve never seen the Aztec archaeological sites outside of Cancun, which include Chichen Itza, Coba, and Tulum, you’re missing out. They’re the bee’s knees, but I digress. That’s a blog for another page. 

            What Azilect is would be an MAO-B inhibitor. Put more simply, there is some dopamine in my brain, but not as much of it is doing what it needs to be doing. Dopamine is a neurotransmitter in my big ol’ brain. It sends messages. Because of evil nasty enzymes, which we will liken to the zombie hordes on The Walking Dead, my dopamine doesn’t get where it’s going. Thus, these pathways are dried up. It took some time to get to 60-80% damage levels where the tremors began, but silently, “crap happened.”

What Azilect does to fight this is it acts like a kinder, gentler, and more altruistic Negen providing protection with Lucille for my brain. I pay for this, and it does the work I can’t do without it. In no uncertain terms, it clears up the bad and lets my brain use its own good stuff to make my signals work where they can.

I have to say, I’m happy with this arrangement.

Mind you, this is not Levodopa, which is used in conjunction with Carbidopa. Levodopa is a medication for when things really progress. It gets magically turned into dopamine and another medication called Carbidopa protects it from getting broken down before it is absorbed. That’s a whole different game than a person in my early stages of Parkinson’s is operating at. When I mentioned this to my doctor, he looked at me with that look that respectfully says, “Stop going on Internet sites unless you know what you’re looking at; you’ll just scare yourself if you keep this up.” Of course, I looked back at him with that look that says, “I’m sorry for being a dumbass. Teach me, Jedi Master. I am your padawan learner.”

            Since that time, I have learned. According to my doctor, the CVS pharmacist, Azilect’s site, and RXList.com, these are some of the problems for people taking the medication: joint pain, cough, dizziness, joint & muscle pain, headache, depression, heartburn, nausea, fever, loss of interest in sex, constipation / diarrhea, vomiting, weight loss, rashes, numbness, strange dreams (as if I don’t have enough strange and lucid dreams already), dry mouth (that I can’t quench with beer), flu symptoms, and an inability to sleep. Of course, there are extremes like “strange thoughts” (whatever they are) and hallucinations, as well as passing out, but yeah… these things are on many medicines that are advertised in between innings of the World Series so that people can ask to take them and feel like the energized and happy people on the Otezla commercials.

I’m not sure how I’d be featured on an Azilect commercial. I’m thinking climbing waterfalls at Sullivan Run next July. Then again, maybe I’d just be extending my underwear radius, dancing around the living room to make my wife Heather laugh. Either way, it wouldn’t be to Katrina and the Waves. I’m thinking more Michael Franti’s “Sound of Sunshine.”

            Nevertheless, for all this medication is, one thing that Azilect isn’t is cheap. According to Drugs.com, 30 of these bad boys can fetch up to $680.37, give or take. Fortunately, I have insurance, so I don’t pay full price. Fortunately, I have good insurance, so I pay a lot less, but I’m not all people. Many people go broke on these prices, especially with limited capabilities, options, support systems, and advanced conditions.

            Cue that I’m trying to affect your heart and mind.

Yes, I get that research takes talent and talent equals cost, but at the same point, I have serious issues with the ethics of Martin Shkreli and Heather Bresch. Yes, I get that we live in a capitalistic country, but I have the audacity to think that prices can be balanced with profit.

            Fortunately, on February 7, 2017, this drug goes generic. This is with regard to the 20 year patent on drugs to recoup research expenses and to profit. Fair enough. That said, I know that on that day, a lot of people with average to poor health insurance will be celebrating good times with Kool and the Gang that their lives will be getting easier as they continue to recover from their condition with the medicine that their doctors feel they need.

            Until then, we wait.