Deep brain stimulation was a lifesaver for my husband with Parkinson’s

My husband, David, and I married joyfully in 1981 after a year of unexpected courtship. Although we’d attended the same high school in our small town in Pennsylvania, we had not interacted, but we were aware of each other’s families. Ten years later, as young adults, we serendipitously found ourselves in the same upstate New York city when fate intervened, courtesy of our mothers playing Cupid. Our wedding vows included the words “through the best and the worst of what is to come.” We could not have anticipated what that promise would mean.

Dave, as I call him, developed early-onset Parkinson’s disease, and I have been his caregiver in increasing grades for over 20 years now. This uninvited and troublesome entity in our marriage is “Parky,” a mocking name we use to distinguish him from my husband. Parky, the clever devil, had been quietly at work without our knowing long before Dave’s diagnosis, beginning with his clinical depression in the early ’80s. We always called the depression “Mr. D,” thus making the Parky moniker a natural transition.

It was in 2002, when Dave was 49, that he calmly and quietly told me about his recent visit with a neurologist while our two young daughters played nearby. “It seems I have Parkinson’s disease,” he said. I did not receive the news calmly or quietly. Parkinson’s disease!

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I reminded Dave of my Uncle Howard, who had suffered from Parkinson’s disease in the 1960s. Suffering is certainly the correct term for Howard, since he became a shuffling, stooped, mumbling shadow of the busy farmer he had once been. Carbidopa and levodopa had been his only treatment option, and he died in a nursing home at age 56.

Dave tried to boost me up, telling me that his doctor had assured him that with the newer forms of treatment available, he could have 20 good years. Well, that seemed a bright outlook, didn’t it? But Parky had other plans.

Finding hope through DBS

Within two years, Dave could no longer work in his profession as a computer programmer; a computer mouse does not like tremors. He did find a part-time job that he liked, driving around in a golf cart to read water meters. Yet, two years after that, Dave’s life had shrunk to spending his days in his recliner, trying to read a book with trembling pages, which was vastly frustrating.

And, oh, the pain of his nonstop shaking! I would often massage his legs to try to loosen them up from the day-long tremors that afflicted them. Parky, with his dark personality, seemed to want to make Dave as miserable as possible.

But what about on time, the hours when the medications are controlling the symptoms? Unfortunately, Dave never got any on time. Not ever. Carbidopa and levodopa did not ameliorate his symptoms. Apparently, this is rare. We sought the guidance of a movement disorder specialist.

Was Parky laughing when the highest dose of carbidopa and levodopa that the new doctor had ever prescribed did nothing but beleaguer Dave with very rough side effects? The internal trembling from the medication made him miserable. “This is not worth it, Davey,” I said. “Your quality of life is much worse on this high dose.” Agreeing, he discontinued it, bowing to his last hope. Yet, hope returned when he was referred for deep brain stimulation (DBS).

After a thorough evaluation with the movement disorder specialist, a neuropsychiatric review, and a meeting with the neurosurgeon, Dave was approved for DBS. It is no exaggeration to say that DBS saved his life. The tremors calmed. He needed no medication, and the pain and stiffness vanished. He became happy again! Mr. D, who had been ever-present, went on an extended vacation.

DBS is not a cure and does not slow the disease’s progression, nor does it lessen Dave’s midline body issues, such as constipation, difficulty swallowing, poor balance, and a softening voice. Yet, 18 years after DBS surgery, he remarkably continues to receive benefits for his tremors and stiffness.

However, his balance challenges are certainly present and progressing, leading to falls (the worst of which involved a broken kneecap). Dave no longer drives, has erratic sleep and a Swiss cheese memory, and hears me utter daily, “I can’t hear you!” My caregiver role expands each year.

And Parky? He has not been as dark a force as he once was. Mr. D? We haven’t seen him in years. We have come to an interesting détente with Parky. After all these years, can we call him a friend? Hell, no! Yet, we have no choice but to acknowledge his presence without letting him dominate our lives. We both find it very helpful to regularly separate Parky from Dave. It reminds me to stay compassionate and remember that my dear husband is not this way by choice.

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, and are intended to spark discussion about issues pertaining to Parkinson’s disease.