It’s been several weeks since I’ve written, and it’s not all because I’ve been so busy fixing sprinkler systems and flying helicopters. The fact is that I haven’t been doing all that well in the last few weeks, and I honestly haven’t felt very much like writing. It’s not just that the thought of using a keyboard is exhausting to contemplate; or that, even as cool as it is, the voice recognition system that I use sometimes just takes more energy than I have. The truth is that I’ve been avoiding the empty page because I’ve been having a hard time seeing the lighter side of this situation recently.
I have been trying to write as truthfully as I can, but also to avoid too much hand wringing and angst. I’m clearly not avoiding the hard subjects, but my natural tendency is to write more like Dave Barry than like Dostoevsky. The last few weeks have felt like a long, dark Russian winter, though. I think it’s a combination of disease progression, a difficult adjustment to being a retired guy (who would’ve thought?), and a growing recognition that I’m not going to joke my way out of this one. This is the other side of the denial coin; too much cold hard reality is, frankly, kind of a bummer.
I have to confess – I’ve been obedient for weeks and weeks, and it finally got to be too much to bear. After meeting somebody last week who demonstrated just how well their DBS system was working by turning it off and letting the symptoms emerge, I just had to know. Am I really getting any value out of this thing? Other than, of course, the conversational value of having bumps on my head that make me look like Hellboy. I’ve put significant effort into having this device placed in some of my tenderest locations, and I wanted to know whether or not there was any real effect. Although I do have good days, on average I still feel pretty rotten, and it would be a shame to discover that I had holes drilled in my head and gave up MRIs forever for no apparent reason. I know I could’ve just asked my neurologist (and he probably would’ve preferred that), but I’ve always thought that there is a special benefit associated with personal experience.
So, early one morning last week, I settled into a comfortable chair with my cell phone within easy reach and I hauled out my patient programmer and antenna. This is the device I mentioned before that I received immediately after my surgery, and was then told never to use. What kind of torture is that for a techno-geek? I hung the antenna on my T-shirt over the stimulator, and only 3 button clicks later I had turned the device off, while doing finger taps with both hands all the while. Finger taps are a staple of the neurological exam that all PD patients are familiar with, and they are just what they sound like. It sounds very simple – tap your forefinger and your thumb together as quickly as you can, and just keep doing it. It’s amazing how hard it is for a PWP that’s “off,” though. Try as you might, you just can’t make it happen, and the harder you try the worse it gets. There’s probably some philosophical meaning in that fact, but I’ll leave that to Dostoevsky.
Because of my experience during programming sessions, and because of good advice from my neurologist, his assistant, and the medical device experts from Medtronic, I didn’t expect an immediate effect. However, after only about 30 seconds my energetic finger tapping just faded away and my hands stopped moving. Not just my left hand, but both hands. I couldn’t wring a good finger tap out of either hand to save my life. I could feel my forearms tightening up and becoming rigid, and then the tightness spread to my legs. Finally, about 2 minutes into the experiment, I begin to have tremors in my left hand. I’ve had problems before with tremors, particularly when stressed or tired, but this was unprecedented. These were the full-scale, classic Parkinson’s pill-rolling tremors, and after another 30 seconds or so both my right hand and my lips began to quiver in the same rhythm. At this point I determined I had enough experimental data, and I didn’t try to stand up or to get up in the attic and install network cables. I turned my stimulator back on, and within 2 minutes, the tremors had eased, my forearms had relaxed somewhat, and I was back to doing finger taps.
Is DBS working for me? Without a doubt. I still take a handful of Parkinson’s medications every day, but I’ve been able to reduce one of the meds that causes the most severe side effects for me (I do miss my little forest friends, though). I’ll never be the “old Corey” again, but that’s not all bad. It often still takes me 3 or 4 hours to get moving in the morning, but I am sleeping more, and that makes everything better. I miss working, and even more I miss the people who I worked with, but the truth is that I just can’t do it any more. However, I have seen what I would be like without DBS and without medication, and even with the side-effects and the reality that it’s getting worse every day, I count myself very fortunate to have what I have.
On a slightly different subject, can we talk for a moment about insurance companies? I won’t name names, because for someone with PD, the insurance companies have more power than even the IRS. As the gamers like to say, “thou shalt not meddle in the affairs of dragons, for thou art crunchy and taste good with ketchup.” I have no desire to attract the attention and ire of the health insurance dragons, so I’ll just make a few non-contentious and unfocused observations.
Here’s an interesting situation to consider: hypothetically speaking, does it make sense that a health insurance company would conduct an extensive, detailed, and exhaustive evaluation of a major medical procedure like…oh, I don’t know…let’s say, installation of a whole stack of electronics in a person’s brain and body, determine that this surgical procedure is justified and effective, and pre-approve it, and then determine that a follow-on office visit with the neurologist to activate the system is an experimental procedure with no evidence of efficacy, and deny insurance claims for those office visits? Further (and we’re still speaking hypothetically, of course) does it make sense to deny follow-on office visits to adjust and tune the system so that it works effectively, calling those procedures experimental as well? Let’s review the bidding: in the bizarro world of insurance company cognition, it goes like this–you can have a $120,000+ surgical procedure to install an electronic system in your brain and body, which has been approved by the FDA for more than 10 years and judged safe and effective for specific medical conditions like, oh…let’s say Parkinson’s disease, but you can’t turn it on and you can’t tune it because that’s experimental. Hypothetically. If this were actually a real situation, it might be confusing and irritating.
I’m glad restaurants don’t work the same way: “Yes sir, we’re happy to bring you the porterhouse steak, creamed spinach, and steak fries that you asked for. However, if you try to eat them, I’m afraid we’ll have to ask you to leave by the back door. That just won’t do.” Or software companies: “Yes, we know just exactly what you need to solve your accounting system problem, and we’ve got a whole disc full of ones and zeros that we can give you that, if you adjust them in the right way, will solve your problem for you. WHAT???!!! You want us to put those ones and zeros in the right order for you?? You must be crazy – we would never undertake such an experimental procedure. Go away before we have to hurt you.”
On second thought, that actually is how software companies work.
My wife and I are headed to Atlanta next weekend for a Parkinson’s conference, where I hope to renew acquaintances with old friends and meet some new friends. I don’t know what it is about people with PD, but they’re some of the nicest, friendliest, most welcoming people I’ve ever known. I’m looking forward to seeing my Atlanta friends again. Following the Atlanta conference, I’m headed to Rochester, Minnesota for the Mayo Clinic symposium on social media for patient advocacy. Many of you helped me to get there, and I thank you for that. It’ll be a great couple of trips, if the plane rides and all the sitting don’t get me. Getting up and moving around in a conference room is one thing, but taking laps up and down the aisle of an aircraft tends to attract the attention of the cabin crew.
If I have a burst of motivation, I’ll write from Rochester and let you know how it’s going. Thanks to all of you for sticking with me through this – the good, the bad, and the ugly.
© 2011, Corey D. King