Every other week on Tuesday afternoon, I have the same routine. I pack my accordion and equipment and travel to my accordion lesson. This task is more complicated than one might imagine. My husband, Tom comes home from work during his lunch hour to help me pack the equipment and load it into my car. We have a system worked out that every inch of my Honda Civic is filled with electronic accordion gear–the front passenger seat has my amplifier, the entire back seat has a huge suitcase loaded with the orchestra module with a foot pedal, another strip of foot pedals and accompanying wires. The trunk is loaded with my accordion, bag with binder of sheet music, and luggage stand for the heavy orchestra module.
Last Tuesday was an accordion lesson day. As I was driving to my lesson, I have that general malaise I sometimes experience with Parkinson’s. I say to myself: “No big deal – it’s only Parkinson’s,” which has become my new mantra. As I walk into the music studio, I look worried and grimace when Mike, my accordion teacher asks how I’m doing. When it’s time for my lesson, we unload my equipment, carry it into the music studio, and set up. I’ve been having my music lesson in the performance studio because we don’t have to haul the equipment as far. In the past, I would have been self-conscious and distracted in front of the customers and students. In fact, when I first started taking lessons about ten years ago, I recalled an incident when a five year old wandered through the room where I had my music lesson, and I stopped playing. When my accordion teacher asked me what was wrong, I said “she’s looking at me.” I’ve come a long way since then, and I don’t mind and sometimes even enjoy people watching me play the accordion, even with my Parkinson’s symptoms.
Dyskinesia has once again returned to accompany me in my accordion lesson today (see The Stalker in my blog posted on January 11, 2007). I had one person observing at my lesson today – Mel short for "Melissa", who is Chad’s wife and who is also Mike’s daughter-in-law. Mel whispered to me that she drove Chad to the music studio so that he could teach and that he was feeling crappy with Crohn’s Disease. Chad was in the hospital with Crohn’s for three months last year and nearly died from it.
Mike and Mel had an opportunity to watch dyskinesia in action at today’s lesson. I squirm and slide in my chair. It feels like an ice skating rink, and I don't know how to ice skate. Similar to the first episode of dyskinesia at the music studio, my left leg starts shaking and my accordion which is balanced on my left thigh, is also moving. I try to wrap my left leg around the legs of the chair, but my leg continues flailing. I also notice that my upper body is moving, and I am missing many of the notes as I attempt to hit a moving target.
In between songs, Mike and I explain to Mel that this is “normal” for me and dyskinesia. I talk about an experience when I was on a panel of people with Parkinson’s, with a man on my right whose head was rolling and a man on my left whose arms and legs were flailing, and for some reason dyskinesia hadn’t visited me on that particular day, and I was sitting quietly in between them, afraid of being hit.
I persist playing the accordion for nearly an hour, and finally say “that’s it” as I shut down the accordion for the day.
Mike had another student after my lesson, but Mel and Chad had some free time so I asked if they wanted to listen to songs on the boom box from Charlie Nimovitz’ CD, Awkward Dance. I had the CD with me, and we listened to three of Charlie’s songs related to Parkinson’s. They were excited, pulled the lyrics out of the CD holder, and followed along. Afterward, we had the best chat ever about how having a chronic disease like Crohn’s or Parkinson’s forces us to appreciate the preciousness of each day. Chad who is a dynamite keyboardist, said that the value of music for him was that “when I’m playing music or performing, I almost forget that I have Crohn’s.” I echoed his sentiments by saying “for a few minutes or sometimes longer, I even forget that I have Parkinson’s.”
When I left the music studio, I put the CD in the player in my car, and sang along with Charlie all the way home.
Every other week on Tuesday afternoon, I have the same routine. I pack my accordion and equipment and travel to my accordion lesson. This task is more complicated than one might imagine. My husband, Tom comes home from work during his lunch hour to help me pack the equipment and load it into my car. We have a system worked out that every inch of my Honda Civic is filled with electronic accordion gear–the front passenger seat has my amplifier, the entire back seat has a huge suitcase loaded with the orchestra module with a foot pedal, another strip of foot pedals and accompanying wires. The trunk is loaded with my accordion, bag with binder of sheet music, and luggage stand for the heavy orchestra module.
Last Tuesday was an accordion lesson day. As I was driving to my lesson, I have that general malaise I sometimes experience with Parkinson’s. I say to myself: “No big deal – it’s only Parkinson’s,” which has become my new mantra. As I walk into the music studio, I look worried and grimace when Mike, my accordion teacher asks how I’m doing. When it’s time for my lesson, we unload my equipment, carry it into the music studio, and set up. I’ve been having my music lesson in the performance studio because we don’t have to haul the equipment as far. In the past, I would have been self-conscious and distracted in front of the customers and students. In fact, when I first started taking lessons about ten years ago, I recalled an incident when a five year old wandered through the room where I had my music lesson, and I stopped playing. When my accordion teacher asked me what was wrong, I said “she’s looking at me.” I’ve come a long way since then, and I don’t mind and sometimes even enjoy people watching me play the accordion, even with my Parkinson’s symptoms.
Dyskinesia has once again returned to accompany me in my accordion lesson today (see The Stalker in my blog posted on January 11, 2007). I had one person observing at my lesson today – Mel short for "Melissa", who is Chad’s wife and who is also Mike’s daughter-in-law. Mel whispered to me that she drove Chad to the music studio so that he could teach and that he was feeling crappy with Crohn’s Disease. Chad was in the hospital with Crohn’s for three months last year and nearly died from it.
Mike and Mel had an opportunity to watch dyskinesia in action at today’s lesson. I squirm and slide in my chair. It feels like an ice skating rink, and I don't know how to ice skate. Similar to the first episode of dyskinesia at the music studio, my left leg starts shaking and my accordion which is balanced on my left thigh, is also moving. I try to wrap my left leg around the legs of the chair, but my leg continues flailing. I also notice that my upper body is moving, and I am missing many of the notes as I attempt to hit a moving target.
In between songs, Mike and I explain to Mel that this is “normal” for me and dyskinesia. I talk about an experience when I was on a panel of people with Parkinson’s, with a man on my right whose head was rolling and a man on my left whose arms and legs were flailing, and for some reason dyskinesia hadn’t visited me on that particular day, and I was sitting quietly in between them, afraid of being hit.
I persist playing the accordion for nearly an hour, and finally say “that’s it” as I shut down the accordion for the day.
Mike had another student after my lesson, but Mel and Chad had some free time so I asked if they wanted to listen to songs on the boom box from Charlie Nimovitz’ CD, Awkward Dance. I had the CD with me, and we listened to three of Charlie’s songs related to Parkinson’s. They were excited, pulled the lyrics out of the CD holder, and followed along. Afterward, we had the best chat ever about how having a chronic disease like Crohn’s or Parkinson’s forces us to appreciate the preciousness of each day. Chad who is a dynamite keyboardist, said that the value of music for him was that “when I’m playing music or performing, I almost forget that I have Crohn’s.” I echoed his sentiments by saying “for a few minutes or sometimes longer, I even forget that I have Parkinson’s.”
When I left the music studio, I put the CD in the player in my car, and sang along with Charlie all the way home.