My sister, Dad, and I waited in the doctor’s office before Christmas for his deep brain stimulation (DBS) appointment. Dad underwent DBS last fall, and it’s time for a “tuneup,” as he likes to call them. I imagine his doctor with a wrench in her hand, manipulating Dad’s brain like a mechanic fixes a car.
If she works on the suspension on the left side, maybe it’ll change the tremors in his left foot. And it does. His doctor punches the instructions into her computer and my dad’s foot stops shaking. It’s an immediate change. We don’t have to wait for medications to kick in or his body to adjust.
His medication dosage is about the same. He experiments to see if a half-dose is enough to keep him going. He thinks it is; his doctor doesn’t.
While we’re in the office, I try to mediate. His doctor — my dad calls her “The General” — tells him that he needs to take his medications regularly and as prescribed. Dad’s face sinks because he has been clinging to the hope that he can reduce them. She explains that patients don’t develop a tolerance to Sinemet (carbidopa/levodopa), but as Parkinson’s disease progresses, a higher dosage is needed. She reassures him that an increase in dosage won’t cause adverse effects. Dad is in it for the long-run, and he hopes that if he plays his cards right, his symptoms will ease later in his life. But his quality of life is suffering now because he is undermedicating.
Sometimes having a window into someone’s life can be heart-wrenching. While I’m looking through the glass panes of my dad’s mind, I realize that he is determined to fight Parkinson’s for as long as he can. And I’m proud of him for being so determined. I know that you can’t give someone the desire to put Parkinson’s in its place, but I also worry that undermedicating is compromising his quality of life.
What has changed?
Dad tells me that he has noticed some subtle changes since the surgery. His eyes are dull with disappointment as he shares that he had hoped for more improvements. He didn’t have a honeymoon period like others do despite his longing for a week without symptoms. This grueling disease has been chasing my Dad since 2013, and he was comforted by the idea of a break. Everything short of a cure is a little heartbreaking. But he does admit to the positive changes, including the following:
- Parkinson’s patients can experience a strong urge to urinate frequently. Since his surgery, the urge has disappeared.
- He decided to undergo DBS because his dyskinesia can be debilitating. But since the surgery, the worst of it is gone.
- His hair is so thick that he jokes about having a ponytail, like the one he had during his youth.
He tells me that his freezing has gotten worse. I observe him walking and notice that he freezes for longer. But he only freezes when he’s trying to navigate a choppy situation — like our Christmas presents all over the floor. It’s as if fear paralyzes him. He worries about stepping on something. But when his path is a straight shot, he zooms away. I wonder if managing our fears can affect freezing.
I felt a brief sense of relief upon seeing my dad at Christmas. He is 20 pounds heavier than he was before the surgery. He seems to be in good spirits. It’s like a victory among bouts of tremendous loss. It feels as if the surgery has provided us with a deep breath of air after going without it for a long time.
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