As usual, I didn’t get around to completing this blog entry quite as quickly as I had hoped or planned. After my last entry, I received some completely appropriate chastisement from several people for the long delays between entries. I promise; I’m neither trying to draw out the suspense nor cause unnecessary distress to those of you who want to know how I am. Before I reflect a little further on what actually is going on, first I’ll focus on a quick recap of the last few weeks.
During the middle part of October, I attended a Parkinson’s disease conference in Atlanta hosted by the Georgia Parkinson’s Foundation. This was my 2nd year to attend this conference, and I really enjoyed seeing old friends (if one year can be called “old”) and making new ones. I was fortunate that my wife was able to come too; she’s a schoolteacher, and time away during the school year is difficult to come by. We had a couple of great dinners with friends (one with an old family friend who’s known my wife even longer than I have, and who is kind enough to put up with me too), and attended conference sessions where we learned a few new things. It was an intense weekend, and little overwhelming for us both. Predictably, I had a few insomnia problems, but I really enjoyed staying up with some new friends in the Night Owl Lounge (a near–necessity at any multi-day Parkinson’s conference), solving all the problems of the world and developing new research protocols for cures for Parkinson’s disease. It’s a real shame I don’t remember what we decided.
My wife came home to San Antonio after the Atlanta conference, but I continued on to Rochester, Minnesota for a week–long conference at the Mayo Clinic on social media for healthcare advocacy. I competed in an essay contest during August and September for a scholarship to attend the symposium, and with your help I was fortunate enough to be one of the 5 winners. While at the conference, I got great training in the use of tools like Facebook, Twitter, audio, and video from marketing and multimedia experts, and was able to spend time with healthcare professionals of all types, including physicians and nurses, discussing ways to use social media to foster communication between the patient community and healthcare organizations. I also gave a presentation on my experiences as both a Parkinson’s patient and the leader of an advocacy organization, and participated in a panel discussion afterwards. It was a great week with many highs and a few lows (come on; no electronics stores within walking distance of the hotel? What kind of city is Rochester, anyway? I suspect some collusion with my wife here), and I look forward to being able to go back again.
The simple process of traveling was predictably difficult, but was eased considerably by good planning on the part of the Mayo Clinic staff and by some simple, unexpected kindnesses from the team at Delta Air Lines in Atlanta and Minnesota. Over the last few years I’ve unfortunately grown somewhat used to rudeness and indifference to the struggles that mobility impairments can bring to a traveler with PD, but I was touched by the courtesy and consideration the Delta team showed me on my trip. If I were the suspicious type, I might again suspect collusion with my wife.
I’ve been reflecting recently on my purpose in writing these blog entries; I feel the need to write about my experiences, but I’m not sure why. I think there’s clearly a therapeutic element to it (which could account for the almost painfully personal nature of some of the blog entries–apologies to those of you that I have caused to cringe over the last few months). In addition, I have the desire to illuminate some of the challenges of having PD for those of you that don’t on behalf of those of us that do, in an attempt to make us more understandable. I don’t speak for anyone but myself, but I think that some of my experiences are common to us all. Finally, I have to admit to a certain amount of ego; I enjoy the occasional positive feedback that I get, and it’s important to me to at least imagine that I’m doing some good.
However, I am not able to do this from an objective standpoint. I am necessarily on the inside looking out, and not on the outside looking in at PD and the impacts that it has. I occasionally avoid writing about some more negative elements of my experience, and I often make many of the painful experiences more palatable by casting them in a humorous light. That may make this process more broadly accessible, but it occurs to me that it also is not always either fair or true. Having PD is neither funny nor cute, and in my attempt to stay accessible, I may be giving an inaccurate picture of what it’s like to live with this disease. I’m too much of a scientist at heart to be satisfied with that. Some of the most effective spokespeople for our cause are unremittingly optimistic, and I love them for that. I try, too, but some days I just can’t find it.
So, I’ve resolved to just let it flow. If it’s too painful to read, perhaps you can just skip to the easier parts. As I continue with this, perhaps what I can’t say will communicate as much as what I can say, but at any rate I’ll work to avoid self-censorship and just tell it as I see it.
In that light, and on the subject of “fun things to do with DBS,” I had another interesting programming session this week. I have learned to expect the unexpected, but I missed the mark on this one by a wide margin. Over the course of the last 6 weeks or so, I’ve been experiencing a recurrence of the “on-off” phenomenon – motor fluctuations due to variability in medication levels. One of the purposes of the DBS system was to help smooth out those variations and help me avoid motor fluctuations. However, I’ve been crashing 2 or 3 times a day after a medication dose wears off, with stiffness and slowness of movement and the addition of classical Parkinson’s tremors, which I’ve never really had significant difficulty with before. I explained this to my neurologist, who agreed that it would probably be beneficial to increase the DBS stimulation level. I’ve been through this several times before, so I was unfazed by the normal tickles, buzzes, and jolts that I felt as he tested the system. He settled on a new stimulation level (for those of you that are keeping score, I’m at a PRF of 160 Hz, pulse width of 60 µs, left hemisphere voltage of 1.7 volts, right hemisphere voltage of 1.8 volts), and since I seemed to be experiencing no ill effects, he suggested that I go have lunch and come back in an hour or so.
As I left the office headed towards my car, I begin to feel…well, I don’t even know how to describe it. “Twitchy” might be the right word, but it really doesn’t do the feeling justice. I began having trouble walking about 100 feet from my car, and by the time I reached the car I was having trouble standing up. My entire body was completely uncontrollable, with twitching, thrashing movements that were getting worse by the minute.
I had what was, in retrospect, a completely inappropriate response to the situation – I began to laugh. I’ve been a Monty Python fan for years, and all I could think about was suddenly having become a charter member of “The Ministry of Silly Walks.” I got in the car, telling myself, “well, this is kind of funny, but I need to calm down. I’m hungry, and I can’t drive like this.” I decided that, through sheer force of will, I could make this go away so I could go grab some lunch.
I found that force of will doesn’t mean much in this situation. The dyskinetic episode only got worse, and it began to scare me. By this time, the uncontrolled movement had become violent, and the first time I punched myself in the face I decided I had had enough. I tried to cross my arms and hold my hands still, but that wasn’t working either. My legs were kicking and thrashing, and my arms were beating against the steering wheel, the gear shift, the rear view mirror and my own face and body. It took me 10 minutes to get back into the doctor’s office and as luck would have it, I didn’t see a single soul who could help me all the way back up. That might’ve been best, though; I looked like a rag doll in a high wind.
It didn’t take long for the neurologist to readjust the stimulation level and stop the dyskinesia, and this time I waited in his office until we were both sure it was over. I’m no worse for wear now, other than bruises on my arms and legs, a couple of sore spots on my face, and an all-over body soreness from getting a week’s worth of exercise in 15 minutes. It was a frightening experience, but I think the most frightening thing about it is this: there are many Parkinson’s patients for whom this happens several times a day every day for years, as a side effect of PD medications. It may be in my future as well; dyskinesia is a common side effect of long-term exposure to levodopa. Just another reason that research into the cause of PD is so important, so we can stop using treatments that end up being worse than the disease itself.
I’ve mentioned before that depression is a very common symptom of PD – it’s a biochemical result of the neurotransmitter malfunction that characterizes the disease. It’s different from being sad or having a bad day – for PD patients experiencing clinical depression, it can impact quality of life as much as any of the motor symptoms, and can be life-threatening. However, there’s another element to this disease that, although similar, can affect us in a different way. It’s called “Parkinson’s apathy,” and I’ve been noticing I’m having trouble with it recently.
Parkinson’s apathy isn’t depression – it’s an inability to get started with activities or projects, and a pervasive feeling that nothing matters. It’s one of the reasons my blog entries come too far apart, and one of the reasons I have trouble returning phone calls, sending e-mails, or “tweeting” as quickly as I should. It’s as common as depression for a PD patient, but it doesn’t get much notice. In my view, it’s also one of the reasons PWPs tend to become socially isolated – it appears as disinterest in maintaining contact, and coupled with communication and speech problems and lack of facial expression, it can make a PWP a “hard interface.”
I have to fight it every day, and lately I’ve been losing. My wife is a strong ally in the fight, but it’s a full-time job, and she has several of those already. However, PD is like the weather in Texas – if you don’t like what’s happening, wait 15 minutes. It may not be better, but it will at least be different. I think I’ll just wait it out and see what happens.
© 2011, Corey D. King