I recently had an appointment with my Movement Disorders Specialist in Chicago to treat my instance of Parkinson’s disease. She tweaked my Deep Brain Stimulator and gave me a wider range of settings to try. The most interesting thing we’re trying involves a program she set up on one of the four pair of leads to decrease the frequency of the pulses but increase the voltage. In other words, less frequent but stronger signals being sent to my brain.
The results so far have been interesting. Many of my side effects, including voice and balance issues, have been much better. At the same time, the meds I take are wearing off every three hours compared to every four to four and a half hours before, and these “off” periods are hitting harder. Up to now, my “off” periods would slowly and gradually take hold, announcing their presence first in my toes and fingers and slowly moving over my entire body. Now, it’s like a light switch being turned off, as literally one minute I’ll be fine and the next any movement at all is difficult and I am slowed to a nearly inanimate state.
So I’m learning how to deal with these new settings. The good part is that during my “on” cycles, my peaks, while shorter in duration than before, are higher than they were, while the bad part is that I crash down harder and faster in the valleys of my “off” cycles.
Peak: There are trade-offs, and today I was able to use my improved voice to appear on my writing group’s radio show, which I’ve been avoiding in recent months. Today not only was I able to read a short piece I’d written, I was also able to conduct an interview with one of my favorite writers, Michael Perry. For a half hour, we spoke about writing, and it was great, we talked and we listened to one another, and it was incredibly gratifying to have a conversation without having to worry about my ability to articulate and be clearly understood. I immensely enjoyed every moment.
Valley: Tonight my wife and I were playing Scrabble and having our normal great time, when I crashed into a bad off period. Suddenly, I couldn’t make my fingers work to reach into the little bag and get my letters. She had to help me, which she did with her usual grace and good nature, and it wasn’t a big deal, because she is so good at preventing things from becoming a big deal. But I’d be lying if I said that at least on some dark and deeper level it didn’t bother me. The game was nearly over, we finished and spent the rest of the valley watching the Brewers lose again.
Peak: A couple of hours later I’m straightening up my office, with music playing, Frankie Valli singing “You’re just too good to be true,” and Tucker, our ten month old English shepherd puppy is lying on the floor, and I’m feeling so good I start dancing and lip synching “at long last love has arrived, I thank God I’m alive.” Tucker looks at me and tilts his head in confusion.
Valley: My wife is showing me some decorating she’s doing in our bedroom, and she is so animated and content that I am overwhelmed by how much I love her, and the lyrics “you’re just too good to be true” come back to me, and I realize that she is the truest thing I know. The past thirty four years we’ve been together flash in front of my eyes, and I see us as we were then and I see me as I am now and it takes all my strength not to burst into tears.
I used to get angry when I’d think of what this damned disease is doing to me and what it’s taking from us. Lately, I just feel sad, and that worries me. I want my anger back, I want to be able to tell my PD to go fuck itself. There is strength in anger, and weakness in sorrow. I want to be strong again.
I need to work at that.