"I've had this feeling lately. One I haven't had in years. That old feeling like I'm waiting for the other shoe to drop."
"Michael, you have Parkinson's disease - the other shoe dropped a long time ago." conversation between Michael J. Fox and his therapist Joyce.
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Wednesday, June 21, 2017
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.
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
•2) what is distorted here, and what
is accurately portrayed?
•3) How can we include what has been
•4) How can we correct what has been
There is also a follow-up
part, where I ask:
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!