Something that people unfamiliar with Parkinson's might not know is that the symptoms are constantly changing. I don't mean from one day to the next, I am talking about from one hour to the next. Most patients, especially those who have young onset (younger than 60) version. Often, the changes from one symptom to the next happen so quickly that an observer might think that it is faked. If only! My days usually revolve around several different symptoms, with a bit of "on" time most days, when I get a bit of a break from pain and disability.
The crazy thing about "on" time is that my obsessive/compulsive nature kicks in then. I try to do a little bit of housework, but soon find myself scrubbing baseboards with a toothbrush. Or I will start to organize stuff. My family hates that, because I will either rearrange the kitchen cupboards, and then forget where I put stuff; or I will sort though stuff (a task requiring the dumping of said stuff) and then when I have it all spread out somewhere, my "on" state suddenly vanishes, and I can't finish the task. I usually end up either leaving it spread out, or I scoop it all up so that next time will be even more challenging.
Once my "on" time is gone, I go into some sort of "homing" state, and I get obsessed with needing to get to my bed. This drives Derek nuts! If we are somewhere other than home, I need to get home. If I am home but in another room, I have to get to the bedroom.
One of the most painful of my symptoms is dystonia.
This is a video I recorded myself of attempting to walk with one foot cramped from dystonia. I never know how long dystonia will last, or how many body parts will be affected. When my whole body is affected, I twist up like a pretzel. It could last ten minutes, or several hours. As I say in the video, I have cracked bones in my foot by trying to walk with dystonia.
Another symptom that I have frequently is bradykinesia. This is a stiffness that makes any movement very difficult. It feels like I am encased in wet cement, including my brain.
Most people associate Parkinson's with dyskinesia: the involuntary swaying movements that Michael J. Fox made famous. I also get dyskinesia almost everyday. What many people don't know is that dyskinesia is actually a side effect of levodopa, which is the main medication prescribed for Parkinson's. Figuring out the dosage is a balancing act that most of us never master, because it is always changing.
Parkinson's is a fascinating disease to study, even when studying it from the inside.
