My journey with deep brain stimulation for Parkinson’s, part 4
After I waded through my doubts, my system was turned on — and worked!
Note: This column describes the author’s own experiences with deep brain stimulation surgery. Not everyone will have the same response to the procedure. Consult your doctor before considering any particular therapy or treatment.
Last in a series. Read parts one, two, and three.
In part three of this series, I’d just left the hospital after my second surgery. It was the final surgical step required for the deep brain stimulation (DBS) system I was hoping would alleviate my Parkinson’s symptoms. It was October 2019, six years and one month after my diagnosis with early-onset Parkinson’s disease.
At this point, I’d gone through all of the pre-operative testing and evaluations to make sure I was a good candidate for DBS. I’d made it through a lengthy surgery while awake, when they drilled through my skull and implanted electrodes. I’d endured surgery to implant the DBS devices and run the wires from the top of my head to my chest.
The best benefit so far was the so-called “honeymoon” period, where, for reasons still not well understood, Parkinson’s patients experience temporary but significant symptom relief after the brain surgery part of the process, before the system is turned on.
The actual term for this honeymoon is the microlesion effect (MLE). Not only does it feel good, but the research has shown a link between a strong MLE response and how well the patient will respond once the device is turned on. But there’s no way to predict who’ll respond to MLE, how much relief they’ll experience, or when it will end. People I’d talked to mentioned it lasting maybe three to six days. Mine lasted nine.
For those nine days, I felt better than I had in years. But on day 10, I crashed. I had none of the post-surgical lift I’d been experiencing, and it was like my meds stopped working, too. Physically, I fell silent because the effort to speak felt too difficult. It’d take me 10 minutes to walk the 20 feet from my bed to the bathroom, and sometimes I almost didn’t make it.
It felt like a huge psychological blow, too. I felt like a failure who’d gone through all the surgeries and trauma with such high hopes, only to find out it wasn’t worth it. I’d been looking forward to DBS as a new lease on life, but now that idea felt shattered.
I still had nearly three weeks until my appointment to turn on the device and start programming it, and those days passed incredibly slowly. I felt as if I were hanging on by my fingernails, wondering if I’d made a huge mistake.
Programming my Parkinson’s
I finally made it to my initial programming appointment. The nurse put the transmitter against my chest above the scars and turned on his iPad. The device chimed when it found my implants wirelessly, and he turned me on my left side. A glow of relaxation flooded through my body, and the glimmer of hope lit again.
Over the next two hours, my doctor and nurse, both with extensive experience programming DBS systems, tested both sides of my brain through the four contact points on each electrode, trying different settings to find the right ones for me. I’d walk up and down the hall so they could evaluate my gait, and they asked me to smile, open and close my fists, and do other tests.
Some settings made my tremors and rigidity worse. Some made me tap my toes or flail my arm in the air. One setting made one side of my face fall, as if I’d had a stroke. We stayed away from that one.
Slowly but surely, we came up with a starting point for me to take out into the world. My husband watched in amazement as my movement changed by remote control. I finally realized it had all been worth it.
The journey of DBS has been challenging at times, but it was totally worth it for me. Without it, my life wouldn’t be the same. I don’t think I’d still be working, traveling, typing, or walking without help. If you’re a Parkinson’s patient, I strongly urge you to see if DBS is a possibility for you, and I hope my story will help. Not everyone will have an experience, good or bad, like mine. But it’s a tool no one should ignore in the fight against Parkinson’s.
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.
About the Author
Mary Riga
I am glad DBS worked for u.Point is that there are no data about its lasting.It helps with tremor but very little with rigidity vradykinesia and autonomic dysfunction.Of course u underwent the operation in a young age,so keep us posted.Good work from your docs.In Europe,it takes one visit for all procedures and one week remaining for observation inside the hospital.As a neurologist I have never seen a laugh as of yours.Keep going
Barbara Kane
My husband was diagnosed with Parkinson’s in 2018. By mid-2024, despite taking nine Rytary pills a day, he could barely walk to the mailbox due to severe dystonia in his left foot, leg, and neck. Deep Brain Stimulation (DBS) became our only hope.
His DBS journey began in February 2024, when he told the neurosurgeon he was ready. By May, the implantation was complete—but the road to that moment was anything but easy. It’s a terrifying thought to have a neurosurgeon, the same age as our eldest child, drilling into your loved one’s brain. My husband immersed himself in every YouTube video he could find, learning about both the successes and the rare but devastating failures. Still, he was willing to take the risk for a chance to walk again. My role was to research every available DBS device to ensure he had the best technology possible.
That’s when I discovered that the Medtronic Percept had received FDA approval in January 2024. This device was essential—not only because it was rechargeable, but also because it could accommodate two leads, allowing flexibility for future treatment. My husband and I had many discussions about this new technology, making sure we were aligned on what he needed.
A Critical Intervention
However, on the day of surgery, as my husband listened to the Medtronic technician explain the device they were about to implant, he immediately realized something was wrong. The device they planned to use was not the Percept we had discussed. Understanding the gravity of the situation, he insisted that I be brought in.
Despite hospital policy, I was ushered into the preoperative suite, where I quickly confirmed our worst fear—the wrong device was about to be implanted. At a prior visit, we had explicitly asked the neurosurgeon whether my husband would receive the newest technology, and he assured us he always used the latest devices. Yet now, he was telling us that Medtronic’s newest model had not yet been approved for use at this facility.
I firmly reminded him that the Percept had been FDA-approved since January and that reimbursement issues were the hospital’s concern—not ours. In an incredible moment of serendipity, the Medtronic technician mentioned that he happened to have the Percept in his car. He was immediately sent to retrieve it, making my husband the first person in Southwest Florida to receive the Percept implant.
Life After DBS: A Transformation
Since the surgery, my husband has been diligent about recharging his device daily, never letting it drop below 90%. The results have been nothing short of life-changing. He has cut his Rytary dosage in half, is biking over 10 miles a day, and has even taken up my favorite sport—pickleball!
Recently, I was thrilled to learn that the Percept now has updated software that can adjust in real-time to a patient’s needs. With a DBS device already designed for a second lead and the ability to upgrade software when needed, we feel confident about planning an active, fulfilling retirement.
Next stop: a pickleball and wine excursion in Sonoma!
DBS may not be right for everyone, but if Parkinson’s is impacting your quality of life, you owe it to yourself and your family to talk to your neurologist. Explore your options—because the right technology, combined with self-advocacy, can be truly life-changing.
Marie Langston
This is so helpful. My husband is two weeks away from his DBS. He is 65 but been battling Parkinson’s for 12 years. We are so excited for him.
Gail Zwiebel
Dear Mollie: Thank-you so much for the very honest and detailed discussion of what you went through to get and use DBS treatment. After my initial diagnosis 10 years ago, and when my symptoms were not much more than a hand tremor, the Neurologist I was seeing told me to immediately get DBS and start on meds. As a retired RN that sounded all wrong to me and I'm glad I got a 2nd opinion and discharged the "care" of the first MD. Now it's been 10 years and I am still not a candidate for DBS though it is something I often think about as a back-up plan for when my symptoms get worse. I am still not on meds though I can see that my symptoms are slowly increasing. I drive, I use the computer (lots of mistakes) and I have full range of motion and no discernible change in mood. I am tired all the time but getting better about a good bedtime routine. My family is slowly adjusting to what is and what will be happening. One of the best things my Husband and I did was to hire 2 consultants. One did the most thorough safety evaluation you can imagine and after we put most of her suggestions in place she now just checks up on us every 6 months or so. The 2nd consultant is a wonderful Social Worker who specializes in meeting in the home with patients with chronic illnesses. She has been a huge emotional support and meets both separately with my husband and me as well as together. Since my Husband and I have never had what you would cal an "easygoing relationship" she has really helped us get through some very tough power struggles and emotional reactions.....all as a way of laying the groundwork for a less stressful life with this diagnosis. We are extremely lucky to be able to afford her help and will probably continue to see her as long as necessary. As a retired RN it seems to me that most chronically ill patients could use a similar kind of help once they receive their diagnosis. Neurologists seeing patients like ourselves should refer their patients for VNS visits, even if no physical treatments are needed and Visiting Nurses should be able to receive advanced certification for dealing with long term patients. As a true believer in the value of Primary Prevention I can see how this would help with at least some of the stress falling into the laps of unprepared care givers.
Schools of Nursing could easily develop guidelines and checklists for safety concerns and keep track of how well a given patient's caregivers are managing. Having watched this time period play out with my own and my Husband's parents this sort of anticipatory help would've been invaluable as opposed to having every family "rediscover the wheel" for themselves.
Matthew Felbinger
I had DBS around 2017 and it made a HUGE difference in my symptom management. I would strongly urge you to consult your neurologist and see if it might work for you, It's made a huge difference in my daily life.
Cathy Andrews
Loved reading your series!! I’m on my way to programming session 4 and getting so close to the “sweet spot”!! My experience with the surgeries, discomfort, excitement, etc. mimics yours very closely; but I am 68 in a month! Thanks for sharing your story!!
Cathy Andrews
I loved reading your description of your DBS journey! I just completed my fourth programming session since my first surgery was done 2 months ago. My experience mimicked yours fairly closely except I am 68! I’m now just “fine tuning” my minimal medication schedule and starting to return to a more manageable lifestyle that I can enjoy. Thank you for your writing in such a way that people contemplating DBS can hopefully get a better understanding of the ups and downs of this great treatment option.