Experience period: Late 2022–Early 2023
Context: During my DBS evaluation
One of the strangest things about my first experience with dyskinesia is that I didn’t know I had it.
In fact, I didn’t even realize I was moving.
I was going through the evaluation process for deep brain stimulation (DBS) when I met with a representative from Boston Scientific, the company that makes the DBS system I would eventually receive.
During our conversation, he noticed something about me that I hadn’t noticed about myself.
I was constantly moving.
I would rock forward and backward almost like I was sitting in a rocking chair—even though I was sitting in a regular chair. My leg would move rhythmically, almost like I was keeping time with music. There were other jerky movements as well that simply weren’t registering with me as something unusual.
Then he pointed it out.
I remember having to stop and actually watch myself.
Until that moment, I wasn’t consciously aware that I was doing it. The movement had apparently become so natural to me that I didn’t notice it anymore. Someone else had to see it before I could see it in myself.
That was revealing.
Looking back, there’s another part of this that matters. I was living alone. I didn’t have a caregiver or family member who was around me every day and might have noticed these changes developing.
I had friends and people in my life, but that’s different from having someone who sees you day after day. Someone around me regularly might have noticed the rocking or the constant leg movement long before I did.
In this case, it took someone who understood Parkinson’s sitting across from me and recognizing something I couldn’t recognize in myself.
Then He Asked About My Weight
He asked me another question I wasn’t expecting:
Had I been losing weight?
At first, I hadn’t really thought much about it. But his question triggered something in my mind.
Actually, yes. I had been losing a little weight.
It wasn’t dramatic, and I hadn’t been watching it closely. But at the time I wasn’t exercising. Historically, when I wasn’t exercising, my weight tended to slowly go up—not down.
Instead, it had been slowly going down.
Looking back, the change had been there. I just hadn’t paid much attention to it.
He explained that all of that involuntary movement uses energy and that dyskinesia can sometimes contribute to weight loss. Suddenly, two things I hadn’t connected—the movement and the gradual weight loss—were connected for me.
And I finally had a word for what my body was doing:
Dyskinesia.
Medication Was Part of the Story
As we continued through my DBS evaluation, medication became an important part of understanding what was happening.
At the time, I was taking carbidopa-levodopa (Sinemet) 25/250 mg. My Parkinson’s had become very unpredictable, particularly when I would be on and when I would suddenly go off. Because of that, I had gotten into the habit of responding to what my body was doing rather than following a perfectly predictable medication pattern.
There were times when I felt myself going off and would take another tablet. Sometimes that meant taking two 25/250 mg tablets, or 500 mg of levodopa, at one time.
Looking back—especially knowing how my medication has been managed since then—that was a lot of levodopa for me.
At the time, though, I wasn’t thinking, I’m taking too much levodopa and causing dyskinesia.
I was trying to get out of an off period.
As my treatment was evaluated more closely, I came to understand that the amount and timing of my medication were contributing to the dyskinesia I was experiencing.
I’ve learned since then that dyskinesia is more complicated than simply saying, “too much Sinemet.” My experiences with dyskinesia have changed over the years, and medication isn’t the only factor I’ve encountered.
Those are stories for other Experiences.
What I Remember Most
What stays with me most about this experience isn’t simply learning the word dyskinesia.
It’s realizing that I was experiencing something significant without even knowing I was doing it.
Someone sitting across from me could see something that I couldn’t see in myself.
That’s also one of the realities I’ve discovered about living alone with Parkinson’s. Sometimes another person sees the change before you do. When you don’t have someone regularly beside you, there may not be anyone there to notice.
More than twelve years into living with Parkinson’s, I’ve learned much more about dyskinesia, and my experiences with it have changed considerably.
But this is where my understanding of dyskinesia began:
Someone pointed out that I was moving.
I stopped long enough to watch myself.
And for the first time, I saw it too.
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