Dyskinesia has been stalking me lately. It’s one of the curses of Parkinson’s Disease (PD) that comes after taking levodopa, the gold standard of PD medicine, over a number of years. Dyskinesia kicks in as levodopa reaches its highest levels in the blood, often 90 minutes after it's taken.
Dyskinesia haunts with its involuntary, uncontrollable movements of flailing arms and legs, fidgeting, lurching, dance-like motions, facial tics, head-bobbing and rolling. Dyskinesia, with its jerky contortions, differs from the rhythmic tremors that are more often associated with PD.
With PD being a movement disorder, akinesia (no movement) and bradykinesia (slow movement) are common characteristics of this disease, whereas dyskinesia appears as a side effect of levodopa. Over time when levodopa becomes ineffective, patients can swing from akinesia to dyskinesia in a matter of minutes.
Dyskinesia appears more frequently and earlier in those diagnosed with young onset PD (diagnosed under age 50 such as Michael J. Fox) as compared to others diagnosed later in life (the late Pope John Paul II). One important study confirmed that with PD onset from 40-59 years of age, the incidence was 50%, whereas onset after 70 years of age, the incidence was 16%.
Even though I was diagnosed with young onset PD, I hoped to escape the terrible side effects from taking levodopa for the past ten years. But, dyskinesia, the stalker that it is, hunted me down. In the past, I experienced a little dyskinesia here and there, but what I faced last Tuesday was more like a dyskinetic episode.
Every other week on Tuesday afternoons, I take accordion lessons. After being away from playing my accordion for about a year and a half since brain surgery for PD, I am grateful to resume accordion lessons with Mike, my accordion teacher.
Mike and I made accommodations so that I might be able to continue. I only play on my electronic, reedless, no-bellows, lightweight accordion. I traded in my heavy amplifier for a lightweight model. Mike and I lowered our expectations about my music performance. But neither of us was prepared for what happened last Tuesday when dyskinesia arrived.
As I am playing “Take Me Home Country Roads” with its bluegrass sound, my left leg starts shaking. I try to get my leg to stop moving by pressing it firmly on the floor. My leg continues shaking. My accordion is balanced on my left thigh and now my accordion is also moving. I try solving my leg-shaking problem by trying chairs of different heights. I hop on the bar stool that is much too high, and my legs are now dangling and my left leg continues to shake. I almost fell off the bar stool. I try to wrap my left leg around the legs of the two remaining chairs, but my leg continues flailing. Looking out the window of the music studio, I see piles of snow, yet my face is dripping with sweat, and my head is bobbing. Although I keep playing, I am missing many of the notes as I attempt to hit a moving target.
When my lesson was almost over, five customers arrive within several minutes. During the past ten years, I’ve never seen five customers in the music studio at one time. I wonder if there is a renaissance in accordion music.
I motion to Mike to help the customers. I continue playing for a short time, until I am defeated by my shaky leg. I explain to one of the customers, a veteran in a baseball hat with a “Purple Heart” insignia, that I have PD. This bearded man who played the accordion since he was five, except for his two year stint in Vietnam, understands – he is a caregiver of a father with PD.
I pack up my equipment, load it into the car and drive home. I wonder what Mike thought about the Stalker’s visit. I haul the equipment into the house, except for the orchestra module which I absentmindedly leave in my cold, unlocked car overnight. The equipment remains unpacked until I decide to confront the Stalker again.
Dyskinesia has been stalking me lately. It’s one of the curses of Parkinson’s Disease (PD) that comes after taking levodopa, the gold standard of PD medicine, over a number of years. Dyskinesia kicks in as levodopa reaches its highest levels in the blood, often 90 minutes after it's taken.
Dyskinesia haunts with its involuntary, uncontrollable movements of flailing arms and legs, fidgeting, lurching, dance-like motions, facial tics, head-bobbing and rolling. Dyskinesia, with its jerky contortions, differs from the rhythmic tremors that are more often associated with PD.
With PD being a movement disorder, akinesia (no movement) and bradykinesia (slow movement) are common characteristics of this disease, whereas dyskinesia appears as a side effect of levodopa. Over time when levodopa becomes ineffective, patients can swing from akinesia to dyskinesia in a matter of minutes.
Dyskinesia appears more frequently and earlier in those diagnosed with young onset PD (diagnosed under age 50 such as Michael J. Fox) as compared to others diagnosed later in life (the late Pope John Paul II). One important study confirmed that with PD onset from 40-59 years of age, the incidence was 50%, whereas onset after 70 years of age, the incidence was 16%.
Even though I was diagnosed with young onset PD, I hoped to escape the terrible side effects from taking levodopa for the past ten years. But, dyskinesia, the stalker that it is, hunted me down. In the past, I experienced a little dyskinesia here and there, but what I faced last Tuesday was more like a dyskinetic episode.
Every other week on Tuesday afternoons, I take accordion lessons. After being away from playing my accordion for about a year and a half since brain surgery for PD, I am grateful to resume accordion lessons with Mike, my accordion teacher.
Mike and I made accommodations so that I might be able to continue. I only play on my electronic, reedless, no-bellows, lightweight accordion. I traded in my heavy amplifier for a lightweight model. Mike and I lowered our expectations about my music performance. But neither of us was prepared for what happened last Tuesday when dyskinesia arrived.
As I am playing “Take Me Home Country Roads” with its bluegrass sound, my left leg starts shaking. I try to get my leg to stop moving by pressing it firmly on the floor. My leg continues shaking. My accordion is balanced on my left thigh and now my accordion is also moving. I try solving my leg-shaking problem by trying chairs of different heights. I hop on the bar stool that is much too high, and my legs are now dangling and my left leg continues to shake. I almost fell off the bar stool. I try to wrap my left leg around the legs of the two remaining chairs, but my leg continues flailing. Looking out the window of the music studio, I see piles of snow, yet my face is dripping with sweat, and my head is bobbing. Although I keep playing, I am missing many of the notes as I attempt to hit a moving target.
When my lesson was almost over, five customers arrive within several minutes. During the past ten years, I’ve never seen five customers in the music studio at one time. I wonder if there is a renaissance in accordion music.
I motion to Mike to help the customers. I continue playing for a short time, until I am defeated by my shaky leg. I explain to one of the customers, a veteran in a baseball hat with a “Purple Heart” insignia, that I have PD. This bearded man who played the accordion since he was five, except for his two year stint in Vietnam, understands – he is a caregiver of a father with PD.
I pack up my equipment, load it into the car and drive home. I wonder what Mike thought about the Stalker’s visit. I haul the equipment into the house, except for the orchestra module which I absentmindedly leave in my cold, unlocked car overnight. The equipment remains unpacked until I decide to confront the Stalker again.