Incapacitating Dyskinesia

Kate O’Neill

Her blond hair hangs thick and heavy as dyskinesia moves her head in random angles.  Her arms and shoulders continue to move as  she sits finally in the chair facing the physician.  It takes her several moments to settle; putting her bag at her feet and readjusting herself in the seat.  The doctor comments on her dyskinesia and asks when she last took her medicine.  It was several hours ago.  Her limbs move as she speaks, reporting she also has dyskinesia when her medicine is working well.  ‘How many hours a day are you free from them? ‘ the physician asks.  Her answer is lost in her movements, but the doctor seems to understand her anyway.

Diagnosed with Parkinson’s disease eight years ago, the dyskinesia has gotten worse.  Other medications added to her daily regimen have done little to control her movements.  Behind his desk, the doctor advises decreasing the dosage of Sinemet she takes.  The patient tells him she’s tried and has experienced episodes of tightness in her chest; her hands rest against her body momentarily and she explains she feels like she can’t get air into her lungs.  She feels like she’s going to die, because she can’t breathe.  The doctor nods.  He tells her the illness she has affects all the muscles in her body, even the small muscles that expand and contract between her ribs; the intercostals.  He checks the computer for her age while he asks whether she’s thought about having deep brain stimulation.  Mentioning he seldom recommends his patients consult a neurosurgeon, she would be an excellent candidate.

She’s thirty-eight.  She gave up working two years ago when her dyskinesia began to interfere with work.  A banker, she had a lot of public contact.  Several clients asked her manager about  her health and she recognized she would have to make a change.  The bank offered to place her in a position with less public contact, but she preferred to leave entirely.

The neurologist gives her the card for the neurosurgeon and asks her about other things; is she sleeping well?  How is her diet?  Her arms elevate and her head twists and it’s hard to imagine her feeding herself.  A caregiver comes in every day to assist her with daily tasks.  The doctor comments she’s lost ten pounds since her last visit.  He would like to see her walk in the hallway.  She’s never fallen, though she’s come close.  Walking seems to dampen the random motions of her upper body, and the doctor complements her stride.  Exercise would be good for her, he tells her.  She allows him to write her a prescription for physical therapy, as he urges her to think of the future.  Assisted living provides hot meals.  She reaches across the desk and shakes his hand before she leaves, her motions somewhat milder.

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