Parkinson’s disease certainly keeps life interesting – it brings new experiences I don’t really want, decisions I’d prefer not to make, and challenges that, given the choice, I’d really rather not have. Nobody asked me, though, and too much complaining is just bad form – they say that 10% of people are genuinely sorry for your misfortunes, 20% just don’t care, and 70% think that you deserve them. It’s probably best not to know who falls in which category, although I’m confident that all of my family and friends are 10-percenters. Statistics was never my strongest subject in school.
So instead, I’ll just dispassionately observe that the road has been a bit bumpy in the last couple of months, and not just for me. Many of my friends and acquaintances also have Parkinson’s, and times are tough for everybody. Most bear the physical, mental, and emotional anguish, the various indignities and insults, and the fear and uncertainty with grace and humor, but the occasional firestorm of conflict reminds me of the enormous pressure that my friends and fellow traveling companions on this crooked path must bear. It’s fortunate that we all don’t hit lows at the same time, and that there are so many people who are willing and able to provide comfort to those that are having a tough time.
Parkinson’s is a complex disease, but in many ways it’s really very simple – it’s all about “on” and “off.” For a PWP that’s on, the various medications and treatments are working as well as they ever do, the symptoms are at a minimum (although never gone, it seems), and life is manageable. When you’re off, though, the full weight of the disease comes crashing down, and nothing works. Our arms and legs don’t move or move too much, our hands shake or are immobile, our bodies scream with the pain of rigid muscles that won’t relax, we shuffle, freeze, and fall, we struggle to eat, to speak, to sleep, to stay awake…in short, on is good, off is bad. Daily life for a PWP is a constant battle to maximize on time, minimize off time, and predict the transitions from one to the other. It’s a full-time job, and it can be exhausting, frightening, and discouraging.
I’ve been having symptoms for about 15 years, and I’ve had an official PD diagnosis for about four. Since then, I’ve taken an astounding number of pills, I’ve been through physical therapy, speech therapy, and occupational therapy, I’ve tried tai chi, green tea, cinnamon, curcumin, fish oil, CoQ10, coconut oil, and supplements I can’t even spell which gave me kidney stones. I’ve given up scuba diving, working for a living, protein and gluten (briefly), sugar (even more briefly), and financial responsibility. I’ve installed a variety of electronic systems in my house, my car, my garage, and my brain, and some of them even work. I have volunteered with varying degrees of success as a fundraiser and patient advocate for the Parkinson’s community and have benefited from the friendship and kindness of the many friends I’ve met. I’ve made mistakes, broken some glass, tried to do the right thing and got it wrong occasionally, and in general muddled my way through. I did not do any of it alone; I have had the unfailing support of my family, a wider circle of friends than I ever deserved, and the grace of God that I’ve only recently started to come to know. And PD doesn’t care – it progresses anyway, and nothing that I’ve done, no matter how beneficial, well-intentioned, or potentially helpful, has had even the slightest impact on the progression of the disease. I knew that intellectually four years ago, but now I am starting to feel it in my heart – this disease is incurable, and after almost 200 years of study, we still don’t know what causes it. I feel a strongly worded letter coming on, but I don’t know who to send it to.
I see my neurologist about every three months, and the last visit was about two weeks ago. I described some of the new problems I’ve been having, particularly my difficulty with getting on in the morning. After his customary response (“Well, you know you have Parkinson’s disease, and it’s progressive and incurable…”), he prescribed a medication that I’ve heard of before, but never expected to have to take this soon. It’s called Apokyn, and it’s typically used as a rescue drug for Parkinson’s patients that are frozen or that are having difficulty flipping from an off to an on state. He suggested that it would be helpful for those mornings when I’m having trouble getting on, rather than just struggling my way through it. It reportedly works pretty well, and as an added bonus it is both injectable and causes violent nausea and vomiting. What’s better than a drug that you stab yourself with and then run to the bathroom? Finally, my childhood dreams of being a heroin addict are realized.
During the visit, he also adjusted my DBS system and bumped up the voltage level slightly. For some reason, it’s important to me to know what my voltage level is; it gives me an entirely fictional sense of control, and I just like the idea that my brain has a voltage level. However, with all the focus on the stabbing and the vomiting, I forgot to ask him what the new settings were. Fortunately, I’m self-sufficient in this respect, and a couple of days later I whipped out my patient programmer device to check my battery level and my voltage settings. Just for fun, you see.
The voltage on both sides was a couple of tenths above my last setting (further evidence of progression that I didn’t really want), but when I checked the stimulator battery level, I saw something I’d never seen before: “ERI.” I promptly checked the manual for my device to find out what ERI meant, but it was the only error message that was not included in the manual. Convenient.
My next stop, as usual, was the Internet. After an exhaustive search, during which I learned what kind of battery my DBS system had (silver vanadium primary cell), how to install it (I think that one was for doctors, but it’s always possible that it was a self-installation manual), and how much it costs (you really don’t want to know), all I learned about ERI was that I should call the doctor. This was on Sunday night, so I had to wait to the next day to find out what this mysterious ERI thing was.
It turns out that “ERI” stands for “elective replacement indicated,” which means it’s time to replace the battery. This was a bit of a shock, since I’ve had the system for less than two years, and typical battery life is 3 to 5 years. I guess I have a power-hungry brain. As fortune would have it, my wife and I were scheduled to depart on a two-week European vacation three days hence, so I asked what I thought was a reasonable question: “When you get the ERI indication, how long do you have before the battery goes dead?” It turns out that’s not as simple a question as I thought. Medtronic, the manufacturer of my DBS system, reviewed the data from my device (it’s been spying on me, and I never knew – it’s probably eavesdropping on my phone calls, too) and came to the conclusion that it should have failed already. Not only did I not have the two weeks until the vacation was over, but I might not even make it home that day before the battery failed. This gives “living on borrowed time” a whole new meaning for me.
I decided to try to take the aggressive approach, and have the battery replaced before we left on the trip. I’d always heard that it was a relatively simple procedure (for a highly skilled neurosurgeon, that is), and my neurosurgeon was willing to do it the next day if we could get the insurance company’s approval. Apparently, surgery is easy, but insurance companies are not.
The insurance company gives itself three days for approvals of preauthorization requests. Why three days, you ask? Because…never mind. I won’t inflict the argument on you. It turned out that the insurance company finally approved the procedure on the day of my scheduled departure for Europe, and only with the intervention of a neurologist, a neurosurgeon, a medical device rep, and the physician’s assistant that’s normally a very nice guy but who scares the crap out of people when he gets angry. I’m just glad he wasn’t angry at me.
Luckily, I had trip insurance, so rather than seeing Germany, Prague, the Alps, and Paris, I’m seeing the new zipper that I have on my chest from my recliner in South Texas. I’m hoping that I don’t get a bill from the insurance company for all the extra work that they did to approve my surgery in 2 1/2 days instead of three days. As it turns out, though, they probably did me a favor – the stress of the surgery has made the PD symptoms much worse in the last few days, and the trip would’ve been hell.
I have one final PD related story in the form of a cautionary tale. I typically don’t think of myself as disabled, even though I’m on disability leave from work, I have disabled license plates on my car, I walk with a cane about half the time, and I have this thing in my brain that requires a battery. “Disabled” just isn’t a part of my self-image. I learned a couple of weeks ago that not everyone sees me the same way, though, and that’s not a good thing.
I was at the hardware store picking up a few items to finish a project, and just running my hands over things (you need to be a tool junkie to understand). I never seem to be able to just get in and get out of a hardware store; this time it was tool chests that distracted me. By the time I got done and out with my purchases, the sun had set and the parking lot had cleared out somewhat. I was parked in a disabled space not far from the front door, under a light.
As I moved toward my car, I saw a man not moving in any particular direction near my car. He looked like he was waiting there, and that immediately bumped my awareness level up another notch. I looked around, and saw no one else, so I slowed and stopped about 15 yards from my car, looking at the guy but not saying anything. He spoke to me, saying, “Hey, buddy. can I ask you a question?”
I said, ” I think you should just move on.” He replied, “Look, I just want to ask you a question,” and began moving toward me.
I was completely on alert now (orange shading to red, for those of you familiar with Jeff Cooper). I said loudly, “stop and leave now,” and did some other things that indicated that not only was I not the “wounded antelope in the herd” that I have mentioned before, but that I could bite if attacked.
He stopped, raised his hands slightly, and said in a calm voice, “OK,” turned around, and walked away across the parking lot. I checked around again (and under the car, and in the trees, and in the back seat – I was a little freaked out). No one else around. I got in the car, drove home, called the store to let them know what happened, and called the police to make a report. Kept it short and sweet.
I have no way of knowing what the guy was after, or if he had targeted my car because it was in a handicapped spot with disabled plates. He may have just been a panhandler and figured I might be a soft touch. He wouldn’t take ‘go away,” for an answer, though, and even when I took unmistakable defensive action (which I won’t describe, because it upsets some people) he was SO CALM. If he had taken five more steps things would have deteriorated badly, and he was calm about it. Freaked me out more than anything else, and makes me suspect he was up to no good and had been there before.
I suppose the moral of the story is that we are all vulnerable at one time or another, whether or not we have obvious disabilities or whether we’re just not paying attention. It’s just a personal philosophy of mine, but I think preparation and forethought forestalls a lot of the bad things that can happen. It can’t do a thing to keep me from having Parkinson’s disease, but it might help me and those like me from being carjacked, robbed, or murdered in the parking lot of a hardware store. Some things I can control (damned few, and fewer all the time, it seems), some things I can influence, and some things I just have to accept. I’ll continue to resist giving up, though – for me, resistance is not futile.