Deep Brain Stimulation: Time for a Tuneup

Mary Beth Skylis avatar

by Mary Beth Skylis |

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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.

Sweet relief

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.


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.


Paula Prange avatar

Paula Prange

I had DBS surgery in Dec. 2017 and I too had hoped for a miracle, but, mine wasn't to be. My Dr. tells me we have gone through every setting imaginable for my symptoms and have yet to find a good match. Change one thing and something else goes haywire. Keep up the good fight and hopefully your success will come true.

Leslie Decker avatar

Leslie Decker

I was diagnosed with "mild" form of PD in 2012; only
affecting my left hand and neurologist did not want to
start meds at that time. That did not last long and I
began taking 2 types of Sinemet which in the begining
worked pretty well to control tremors -my major symptom. A woman in my support group highly recommended DBS, as it worked well on her husband: he
was tremor free. BUT he had terrible cognitive issues;and my neurologist was lukewarm about procedure
and I was too chicken.
Yesterday,at my request, we revisited my prescription and added an additional dose of Sinemet, revised times and am optimistic this will improve my quality of life, while hoping for some medical break thru.

Kathy Kucik avatar

Kathy Kucik

I had unilateral DBS July 2019. While it successfully stopped the tremor on my left side
, no setting alleviates the dystonia in my left foot and leg. Walking is very difficult.

Kathy Gall avatar

Kathy Gall

My sister was diagnosed with PD in the early 80s while in her late 20s. She eventually had DBS which did help her quality of life somewhat, but not as much as she had hoped. She is currently on hospice and the end is near. She is 66. I recently learned of a naturopathic doctor, Laurie Mischley, who is doing research and complementary and alternative medicine with PD patients. I wish I would have learned about her a few years ago when perhaps my sister could have benefitted. I've read some of her studies on the use of glutathione and find them very interesting. Maybe some of you who still have hope for a better quality of life can dig a little deeper. What do you have to lose? For my sister it is too late.


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