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What Changed After DBS Surgery No. 1

DBS surgery

Deep brain stimulation (DBS) can affect both cognitive and motor symptoms in Parkinson’s patients who undergo the surgery. The procedure gives hope to those who are substantially inhibited by tremors and dyskinesia — people like my dad. After doctors determined he’d make a good candidate for the surgery, Dad had his first operation almost two weeks ago. The surgeon placed electrodes in his head and zipped him back up.

Since his first surgery, Dad has observed his physical changes with curiosity. Experts allude to a “honeymoon phase” that often lasts for days or even weeks after the first DBS procedure. For whatever reason, the initial phase seems to spark changes within the body even though the electrodes aren’t yet powered by their battery.

An instruction pamphlet from the University of California, Davis, states: “Sometimes there is a ‘honeymoon’ period following electrode implantation but before the battery is activated – during this period, some of your symptoms may be much better even though the DBS has not been connected or turned on yet. This will fade away and you can expect to return back to your previous level of functioning.“

What has that experience been like for my dad? Let me tell you.

Dyskinesia after DBS

The main reason Dad wanted to undergo DBS was to manage his dyskinesia. As you can imagine, losing control over the way your body moves is physically and mentally taxing. Dad’s medications help him maintain independence, but when they’re leaving his system for the night, dyskinesia hits. Since the completion of his first surgery, Dad says that his dyskinesia is either entirely gone or barely noticeable.

Additional changes

Dad has also observed symptoms that are worse than or the same as they were before the surgery: “My right hand seems to be worse than normal but not by much. I suspect this is because my drugs are not working. And I’m freezing about the same as I was before I had the surgery.” Knowing that this window of change isn’t permanent, Dad observes the shifts but looks to the future for long-term effects.

What can we learn from the honeymoon phase?

Although Dad is experiencing the honeymoon phase, the idea that his body is responding to the electrode placement is fascinating. Why has there been a change in the way his body reacts to Parkinson’s? What causes the honeymoon effect? And why does it affect individual patients in different ways?

What we do know is that when the honeymoon period ends, Parkinson’s symptoms return to their original state. And once you start DBS, it generally takes several months to experience the full effects, since you and your neurologist have to program the electrodes to operate according to your unique symptoms.

DBS phase 2

Tomorrow, Dad will enter the operating room for the second time. This time, his surgeons will connect the electrodes in his brain to the battery in his chest. This surgery is more invasive and may be more painful. The recovery period will likely be longer. It’s easy to worry, pointing to the potential surgical complications.

But despite his current and upcoming challenges, Dad’s attitude remains positive. Just yesterday, he was making jokes about being able to communicate with radio stations due to his new hardware. Imagine what he’ll be able to do when the electrodes are connected to their battery! We remain hopeful, looking to the future with curiosity.

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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.

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Deep Brain Stimulation Surgery No.1 vs. Electro Dad

deep brain stimulation

At the top of a Colorado mountain, I realize that my phone has just a single bar of service. I drop to the dusty ground, frantic to contact my dad. He’s going into surgery for deep brain stimulation (DBS) today, and I haven’t had the chance to tell him how much I love him.

“Dad,” I text anxiously, “I’m in the mountains with crappy service until tomorrow, but I just want to tell you that I’m thinking of you. And I love you. And give it hell!”

“Mary Beth, I love you too. Everything is going to be fine.” My eyes devour his message, and his words reduce me to a flood of tears.

I’m in the middle of a multiday backpacking trip in the remote San Juan mountains. I hadn’t allowed myself to fully consider the surgical risks until this moment. What if something goes wrong? What if the procedure changes my dad? What if I’m not with him for the scary parts?

Suddenly, I feel like I’m the patient. My dad’s levelheaded attitude brings me back to earth. He comforts me, assuring me that he’s not going anywhere. I’m not ready to face any other possibilities.

He checked into the “brain-slicing motel,” as my sister dubbed it, the night before. He’ll be rolling into the operating theater at any moment. The idea terrifies me, even though I believe that it’s his best option.

What freaks me out the most is that his hair is gone. It makes total sense: You have to shave your hair to operate on your head. But he’s always had this big, fluffy head of hair. I’ve never seen him without it. Something about the change knocks me in the guts, reminding me that this is a big deal.

I handle the discomfort, like I always do, by trudging into the wilderness.

Hours later, my mom sends out a series of messages letting us know that the procedure went well. The surgeon is pleased. He had no brain bleeds. And he can come home as early as tomorrow.

***

The following day, Dad sends me a number of perfect texts. His messages usually contain a few goofy words, but today there are none. I don’t know if it’s because he’s mastered the “voice tool” or if he’s experiencing the honeymoon phase. But I take notice.

“What will we call you now?” I joke. “Franken Dad?”

Good-natured as always, he responds: “Yeah, Franken Dad is good. That’s pretty cool.”

“What about cyborg, Robo Dad, Bionic Dad, Electro Dad?” We giggle, using humor as our weapon.

We talk about his hair growing back in. Will it be entirely gray? He’s been rocking the salt-and-pepper look for as long as I can remember.

Dad admits, “My head looks pretty bad. I’ll take a picture for you if I can figure out how.” One of my siblings manages to snap a photo of Dad’s head, sending it to those of us who can’t be in Michigan.

My older sister teases him, saying, “It looks like they just zipped you back up.” She starts calling him “zipper head.” The row of staples stretches from ear to ear, resembling the cold, metal ridges of a zipper.

I send her a line of exclamation points, indicating that I think she’s gone too far. She replies that she can’t let him feel sorry for himself. Dad laughs.

If the surgery changed him, it’s only made him sassier and quicker to laugh. And seemingly happier. You can see the relief written all over my parents’ interactions. They flirt. We avert our eyes. This isn’t the first time that they’ve dealt with dangerous medical procedures. They’ve been here before.

“Electro Dad” gave that surgery hell. He showed us how we should react to adversity — with a levelheaded intensity. And through it all, he was unwilling to forget the importance of laughter. The fear brought us a little closer. And we’re feeling grateful to be in each other’s lives for another day. We’ve just touched the tip of the iceberg. Dad faces another surgery and a long road to recovery. But we’ve reached a milestone.

Mary Beth’s dad at a family wedding. (Photo by Mary Beth Skylis)

I am incredibly proud to share my genes with this guy. Maybe one day I’ll be as strong as he is.

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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.

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Here’s What I’ve Learned After Looking into Deep Brain Stimulation

deep brain stimulation

Dad’s dyskinesia is worsening at a startling pace. When he doesn’t take his medications, he’s nearly immobile. And when he does, dyskinesia wreaks havoc on him. At a loss for options, we’ve been searching for alternative solutions to assist in the management of his PD symptoms. A procedure called deep brain stimulation (DBS) currently is one of the more effective options for patients in the late stages of PD.

Anyone who struggles with a degenerative disease can attest to the accompanying feelings of desperation. Not knowing what function the disease will steal next is nerve-wracking. Parkinson’s disease is currently incurable, but some options can help manage the disease’s progression. While weighing your options, what thoughts rise to the surface? How might undergoing DBS affect your loved ones? Could the benefits affect quality of life enough to make it worthwhile? And what kind of risks are involved?

What does DBS do?

Used for the first time in 1986, DBS primarily helps with motor symptoms, specifically severe motor fluctuations or tremor in advanced stages, according to one study’s description.

During the procedure, a surgeon places electrodes in the brain. These electrodes transmit impulses that either interrupt or change abnormal brain activity. The wires can be placed in multiple areas of the brain, which impacts the potential effects of the pulse interruptions. For example, Dad struggles most with dyskinesia and hopes to alleviate those symptoms. But if tremors are inhibiting someone, a surgeon can adjust the placement of electrodes to benefit that person’s body optimally.

A surgeon places a device that’s similar to a pacemaker under the skin beneath the collarbone. This piece of hardware transmits signals to the electrodes, allowing them to moderate adverse brain activity. The procedure generally causes minimal or no tissue damage. Ultimately, DBS is not a cure, but it can significantly impact quality of life, according to various studies and anecdotal evidence.

Is everyone a candidate?

Newly diagnosed Parkinson’s patients can’t undergo DBS. One must be a patient for four years before consideration. Ideal candidates have few other options to assist in the management of Parkinson’s symptoms. DBS candidates take medications for PD that sometimes work, but often may involve complications like dyskinesia.

Doctors diagnosed Dad in 2013, so he isn’t a new patient. He’s cognitively, emotionally, and physically strong enough to undergo the procedure. His medication works, but it causes severe dyskinesia. However, when he doesn’t take his medication, he suffers from freezing and increased mobility issues. We’ve reached a point in which Dad’s Parkinson’s symptoms are greatly impacting his quality of life. After seeing many different doctors, they’ve determined that he’d make a good candidate for DBS.

Potential benefits of DBS

According to a 2011 study by the Mayo Clinic, DBS patients often see positive results, including sometimes regaining significant mobility. “Stimulation of the ventralis intermedius nucleus of the thalamus has clearly been shown to markedly improve tremor control in patients with essential tremor and tremor related to Parkinson disease,” the study said. “Symptoms of bradykinesia, tremor, gait disturbance, and rigidity can be significantly improved in patients with Parkinson disease.”

The procedure may decrease the use of medications, although patients should work with their doctors to adjust the device’s impulses to meet each person’s unique needs.

According to a 2019 study published in the Journal of Neurosurgery that addressed long-term outcomes for DBS patients, “Tremor responded best to DBS (72.5% of patients improved), while other motor symptoms remained stable. Ability to conduct activities of daily living (ADLs) remained stable (dressing, 78% of patients; running errands, 52.5% of patients) or worsened (preparing meals, 50% of patients). Patient satisfaction, however, remained high (92.5% happy with DBS, 95% would recommend DBS, and 75% felt it provided symptom control).”

The study also observes that more than half of the Parkinson’s patients who received DBS survived for 10 years or longer. Considering that many individuals undergo DBS when alternative solutions become scant and decline becomes startling, an additional 10 years seems encouraging.

Risks associated with DBS 

Anytime surgery is involved, risk is involved, too. Some serious side effects include brain bleed, stroke, infection, or impacted memory. Also, part of the reason doctors screen potential DBS candidates for dementia and Alzheimer’s disease is to avoid worsening underlying memory problems.

As the Mayo Clinic notes, DBS is a “potentially risky procedure,” and patients should “carefully weigh the risks and potential benefits of the procedure.” Read more about possible side effects here.

Current DBS research

Some researchers are attempting to expand DBS treatment to influence freezing and balance issues. Others want to develop a smart device that sends signals when the body is particularly reactive. Some researchers are determining where and when the placement of the device is most optimal. While the best way to use DBS is still under research, clinical trials are exploring the use of DBS to manage different neurological disorders, giving hope to those who struggle with tremors, gait disturbances, and other motor-related issues. Improving outcomes for those who undergo the procedure seems inevitable, given the current interest.

Should you consider DBS?

Surgery is frightening, regardless of the positive outcome numbers. I’m terrified to think about Dad on the operating table. The decision to undergo surgery is never easy, and everyone’s situation is different. Knowledge is the best weapon against degenerative disease. Weigh the potential good and bad impacts it may have. Ultimately, only your medical team and you can determine whether DBS is a good option for you.

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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.

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Deep Brain Stimulation May Ease Some of Common Urinary Problems in Parkinson’s Patients, Study Reports

deep brain stimulation study

Deep brain stimulation (DBS) can help to alleviate some urinary symptoms — such as urinary frequency, urgency, and incontinence — in Parkinson’s patients, and is particularly helpful to women, a large study reports.

The study, “Clinical study of the effects of deep brain stimulation on urinary dysfunctions in patients with Parkinson’s disease,” was published in Clinical Intervention in Aging.

DBS involves a surgical procedure in which very fine wires are inserted into the brain to electrically stimulate areas responsible for movement control and, in this way, adjust neuronal activity within those brain regions. This treatment approach is indicated for Parkinson’s patients whose motor symptoms do not respond well to commonly used parkinsonian medications.

“However, the effectiveness of DBS in treating urinary dysfunctions in [Parkinson’s] patients has not been widely investigated,” the researchers noted.

Bladder problems are frequently observed in Parkinson’s patients. Urinary symptoms such as urgency, frequency, nocturia (excessive urination at night), dysuria (pain or discomfort when urinating), and incontinence can also considerably impact patients’ quality of life.

Importantly, the brain region that is stimulated by DBS for proper motor control, called the subthalamic nuclei, is also involved in controlling the bladder.

Researchers at the Capital Medical University in China assessed how deep brain stimulation might affect Parkinson’s-related urinary problems across patients and between the sexes.

Their study enrolled 416 people (307 men and 109 women; average age of about 61), all being treated with lepodova and with urinary symptoms for an average of 5.1 years. Nocturia was the most common, reported by 63.7% of patients; followed by urinary frequency (55.8%); residual urine (43.8%); urinary urgency (38.0%); dysuria (36.1%); and urinary incontinence (17.8%).

Of these participants, 220 (160 men, 60 women) underwent deep brain stimulation for disease symptoms that failed to improve with medication. Quality of life and urinary symptoms were evaluated using a set of validated assessment scales. No specifics were given about the stimulation treatment’s duration and how long after treatment urinary symptoms were assessed.

Bladder storage problems, and symptoms like urinary frequency, urgency, and incontinence all significantly eased in patients given deep brain stimulation compared to those who were not. However, the most common complaint — that of nocturia — feelings of residual urine, and dysuria “were not improved significantly,” the study reported.

Interestingly, the team found sex-related differences in the magnitude of DBS effects.

“The outcomes of DBS treatment in improving urinary dysfunctions in female patients with PD [Parkinson’s disease] are far superior to those in male patients, as symptoms during urination and bladder storage were both significantly improved in the females,” the researchers wrote. These outcomes included maximum urinary flow rate, the ability of bladder muscle to distend to retain urine, and complete bladder emptying.

Among possible reasons for this gender difference were men with enlarged prostates. “Hyperplasia in the prostate can also cause urinary dysfunctions, which could not be ruled out in our study,” the team wrote.

Quality of life with the stimulation also improved for both sexes, but only significantly among women.

The researchers stressed that multicenter studies with larger samples are necessary to extend and confirm their findings.

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Wearable PKG System Can Help Identify Parkinson’s Patients Eligible for Device-Assisted Therapy, Study Shows

PKG system, DAT scores

Data collected through Global Kinetics Corporation’s wearable device called Personal KinetiGraph (PKG) can help clinicians identify Parkinson’s patients who may benefit from deep-brain stimulation (DBS) or other device-assisted therapies.

This finding was reported in the study, “The Use of Data from the Parkinson’s KinetiGraph to Identify Potential Candidates for Device Assisted Therapies,” published in the journal Sensors.

The PKG system is a wristwatch-like device worn on the side of the body that is most affected by the disease and continuously collects patients’ movement data — such as tremors, slow or involuntary movements, motor skill fluctuations, and immobility.

The device has been cleared by the U.S. Food and Drug Administration and holds CE certification, meaning it meets European safety, health, and environmental protection requirements. Global Kinetics recently announced that its PKG-Watch was recommended by two separate expert panels to improve the clinical management of Parkinson’s disease.

PKG movement data can provide detailed information on the progression of patient’s motor symptoms, as well as on the effectiveness of available therapies to manage them.

Researchers have now evaluated if PKG data could also be used as a screening tool to identify Parkinson’s patients who may benefit from device-assisted therapies (DAT) such as deep-brain stimulation.

“Despite broad consensus as to the criteria for selecting DAT candidates, non-specialists have difficulty in recognizing these criteria. Many [people with Parkinson’s disease] in whom fluctuations are emerging are managed by non-specialists and consequently, suitable DAT candidates are not referred in a timely manner,” the researchers wrote.

The potential for DATs to effectively help manage Parkinson’s symptoms relies mainly on treatment timing, with delays meaning that “suitable candidates may have shorter benefit from DBS or worse still, miss out entirely,” they said.

In fact, “as many as 67% of patients referred for DBS are unsuitable for the procedure yet only 1% of people with Parkinson’s disease receive DBS, even though as many as 20% may, in fact, be eligible,” they added.

“Although there is broad consensus with respect to the criteria for selecting PD patients who will benefit from DBS, these symptoms may be difficult for physicians to identify when relying on patient self-report or in-clinic exam findings that may not reflect the spectrum of the individual’s symptoms and result in treatment delays,” Fatta Nahab MD, associate professor of neurosciences at the University of California San Diego, said in a press release.

Now, researchers at the University of Melbourne in Australia, in collaboration with Global Kinetics, developed a new assessment score, which they call the DAT score. This tool was designed to specifically predict the likelihood that a Parkinson’s patient is a suitable candidate for DAT based on PKG movement data.

An initial group of 172 patients with Parkinson’s was evaluated by a clinical team who identified them as either suitable or not suitable for DBS treatment. Those who were positively selected for DAT were younger and had worse motor symptoms, measured by Unified Parkinson’s Disease Rating Scale (UPDRS) scores.

All patients were asked to use the PKG device, which continuously recorded their movement data. Based on the collected data and according to the initial clinician’s assessment, the researchers selected the most useful parameters that allowed them to differentiate patients who were positively selected for DAT from those who would not be eligible.

The feasibility and accuracy of the DAT score was then tested in a second group of 31 patients with Parkinson’s who had been selected to undergo DBS, 81 patients who were managed in a non-specialist clinic, and 22 patients who had been diagnosed within the past five years.

PKG data was highly sensitive and specific for classifying Parkinson’s patients for DAT eligibility based on the recommendations of specialist clinicians.

Furthermore, the PKG-based DAT score was able to correctly identify 87% of patients who were referred for DAT, namely DBS, in different clinical settings, 92% of patients managed in a non-specialist clinic, and 100% of patients who were within the first five years of diagnosis.

Importantly, DAT scores changed as expected when therapeutic interventions were sufficient to resolve troublesome motor fluctuations or dyskinesia (involuntary movements) that would otherwise have required DAT.

These results demonstrate that “[movement] information from objective measurement [with the PKG device] could improve timely referral for DAT,” the researchers wrote.

“The lack of objective measurements for Parkinson’s symptoms has been a barrier to optimizing care and outcomes for Parkinson’s patients across the continuum of disease,” said John Schellhorn, CEO of Global Kinetics Corporation. “Objective, reproducible assessment methods that allow for data-driven clinical decision-making in the treatment of Parkinson’s can help benefit patients, physicians and overall healthcare costs.”

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In the Battle Against Parkinson’s Disease, Are You a Warrior or a Worrier?

warrior

A warrior is not a worrier. A worrier has no peace, is filled with anxiety, and frets over the smallest things. Worriers tend to be lacking in courage and a calm spirit. 

Warriors exude courage. They are brave in the midst of the battle. They are fighters determined to not merely survive but to thrive. Warriors choose to march forward despite the war raging around them.

Parkinson’s warriors have been to the battleground many times. 

They have fought grief over losing pieces of themselves to this disease. 

They have battled depression and struggled for their mental well-being. 

Fear is no stranger in their war, but they muster up the courage to overcome it. 

The enemy of control has gathered its forces against their muscles and nerves, causing them to flail about, become weak, and tremble. They do their best to take charge, using the weapons available: physical therapy, medications, exercising, deep brain stimulation, and more.

The skill with which they once used their fingers to write or paint, garden or fix things, and button and zip their clothes is vanishing, and they realize they may not recover their dexterity.

But they must carry on.

I must not allow this disease to steal my hope that drives me to carry on in the midst of pain and grief. And you mustn’t either. Hope allows us to put one foot in front of the other regardless of our fear of falling — it may even put a cane into our hands. It allows us to focus on the positive things that might be and those that could be. It wears blinders to block out fear and prevent it from taking our joy and peace.

We must not allow it to diminish our courage. 

Our battle is tough, and we may feel that we’re fighting this disease alone. Parkinson’s can leave you feeling isolated, which makes it more difficult to fight.

That’s why it is so important to go out and get involved in the Parkinson’s community. Join an exercise class for those with Parkinson’s. You will meet new people and feel better mentally and physically. Support groups online or in-person will help you to feel connected and provide you with a safe place to share your experiences. 

If you feel like you’re fighting a battle with Parkinson’s and could use some reinforcements, let me know. You can never have too many soldiers around you. We’re not supposed to fight this disease alone. I’ll be with you on the battlefield.

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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.

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Abbott Partners with NIH on BRAIN Initiative to Use Neuromodulation Technologies

Abbott BRAIN NIH

Abbott is partnering with the National Institutes of Health (NIH) to explore the use of its neuromodulation technologies for treating chronic pain and progressive movement disorders, including Parkinson’s disease.

The partnership’s goal is to drive forward the Brain Research through Advancing Innovative Neurotechnologies initiative, known as BRAIN, which is working to accelerate neuroscience research.

With this collaboration agreement, Abbott will make its proprietary neuromodulation technologies available for research purposes. These include directional deep brain stimulation (DBS), spinal cord stimulation (SCS), and dorsal root ganglion (DRG) therapy, which have already been shown to be beneficial in treating several conditions affecting the central nervous system.

Researchers will now be able to explore ways to use these technologies to fill knowledge gaps in the field of neuroscience and, at the same time, find new strategies to apply them to treat chronic and progressive neurological disorders.

“The NIH is investigating the application of these devices for the treatment of a wide range of neurological and neuropsychiatric conditions and chronic pain,” Nick B. Langhals, PhD, program director for neural engineering in the division of translational research at the National Institute of Neurological Disorders and Stroke (NINDS), said in a press release.

“The neuromodulation technologies provided by Abbott will help us determine the inner workings of the nervous system to help fill gaps in our current knowledge of the brain and provide opportunities for exploring how the brain interacts with the human body in patients with neurological conditions,” Langhals added.

The  BRAIN initiative, launched in 2013, seeks to understand how the human brain works, especially in a context of disease, by taking advantage of innovative technologies. It also is working to establish new “out-of-the-box” applications for currently available technologies. Its goal is to show how individual cells and complex neural circuits interact in both time and space.

To date, the BRAIN initiative has gathered partners and contributors from diverse backgrounds, including federal agencies, public organizations, Congress, and even the media.

“Researchers at Abbott are continuously striving to better understand how neuromodulation technology can benefit people living with chronic pain or movement disorders,” said Keith Boettiger, vice president of neuromodulation at Abbott. “In addition to our own research efforts, including clinical and real-world studies, working together with world-class scientists at the NIH will help us further validate our neuromodulation therapies and explore new avenues where they may benefit patients affected by devastating neurological conditions.”

With the support of NINDS and the BRAIN initiative, researchers have developed an experimental DBS system that uses brain signals to fine tune its activity in response to signs of dyskinesia, or uncontrolled body movement. This approach may potentially represent a more refined way to ease motor problems in Parkinson’s patients.

During the 5th Annual BRAIN Initiative Investigators Meeting, recently held in Washington, D.C., partners from the BRAIN initiative discussed scientific advancements in the neuroscience field, and identified areas for collaboration and research coordination. 

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NYC Attorney with Parkinson’s Describes Positive Effects of Deep Brain Stimulation

The first time the batteries for his deep brain stimulation (DBS) device were activated, Jim McNasby had the feeling a load burdening his body had been removed.

“It felt like a very gentle posture improvement; I just sat up straighter,” McNasby said in a phone interview, as he described how the technology has helped him.  “It was like a weight was lifted and the shakiness in my limbs disappeared.”

McNasby3
Jim McNasby, an attorney with Marsh & McLennan Companies, with his DBS device at his office in New York. (Photos courtesy of Jim McNasby)

McNasby, 50, a New York lawyer first diagnosed with Parkinson’s disease in 1999 at the age of 30, now wonders why he waited so long to have the DBS mechanism implanted.

“I wanted to be careful with brain surgery,” he said. “At the time it seemed so radical. But now I think: ‘Why didn’t I get it earlier?’”

DBS uses low-voltage electricity to stimulate specific parts of the brain via surgically implanted wires attached to a pacemaker-like neurostimulator placed under the skin on the upper chest. Doctors recommend the device mainly when Parkinson’s patients stop responding to medications designed to reduce motor symptoms, such as tremors, rigidity, involuntary movements, and walking problems.

The technology is not a cure. Research on its long-term effects is still limited, and scientists don’t know exactly how it works. However, a number of studies have shown that electrical stimulation of the subthalamic nucleus can improve symptoms, lower the need for medication, and improve the quality of life for people with Parkinson’s.

Stronger symptoms prompt decision

DBS also can ease symptoms of other diseases, including epilepsy and obsessive-compulsive disorder, and is being studied as a potential treatment for issues as wide-ranging as addiction, chronic pain, headaches, dementia, major depression, Huntington’s disease, multiple sclerosis, stroke, Tourette syndrome, and traumatic brain injury. Some 150,000 Parkinson’s patients had received DBS implants worldwide as of 2018.

In the past, McNasby relied on four medications to keep his symptoms under control. These included Sinemet (carbidopa/levodopa), which he was on for 16 years. In the spring of 2018, however, he started experiencing more tremors, shuffling, and asymmetrical walking. His “off-times,” when the medication wasn’t working optimally and motor symptoms returned, felt stronger and more frequent. Friends commented that he appeared to be struggling.

McNasby2
Jim McNasby, at right, with his husband, Donald Moss, during a July 2018 vacation in Norway.

“I’d feel great, and then I’d fall off a cliff and hardly be able to walk,” he said. “I felt shaky and heavy and like I couldn’t balance. … I’d have to sit on my hands and that kind of stuff to try to stabilize.”

He and his doctor tried tweaking his medications, without much success. Then a friend suggested DBS.

The procedure has reversed his Parkinson’s symptoms by about 15 years, McNasby said, to around where they were when he was initially diagnosed. With round-the-clock electrical stimulation, he wakes up feeling good and no longer has drastic ups and downs during the course of the day.

“All the symptoms have been drastically reduced” and are “well within something that’s manageable,” he said.

“I feel so much better,” he added. “It’s something I unequivocally recommend.”

Voltage is easy to adjust

Several DBS devices are on the market, and different doctors follow different protocols to implant them. While McNasby said some patients have the whole system implanted over a 12-hour period, he and his team at Manhattan’s Mount Sinai Hospital chose a series of three surgeries over the course of about a month. His doctors selected Abbott’s Infinity™ DBS system with batteries that last 5-8 years before needing replacement rather than batteries that need daily recharging.

McNasby said he was initially nervous about the prospect of the surgery. His doctor explained the potential risks, which include an electrode placed in the wrong spot, stroke, speech complications, and unpredictable effects from the electricity. His first procedure was a magnetic resonance image (MRI) to pinpoint the exact locations in his brain for the implants.

McNasby1
Jim McNasby, 50, says his DBS device has alleviated the worst symptoms of Parkinson’s.

The MRI was followed this past January by robotic surgery to insert a wire in his brain on the left frontal part of his head. The wire comes out through his skull and travels under his skin to a spot behind his left ear, then down his neck to a tiny battery placed on his chest below his collarbone. The stimulation from inserting the wire itself into his brain improved his symptoms for several days, making him more optimistic about the subsequent surgeries, he said.

The second surgery placed a wire and battery on the right side of his head and chest, and the third, on Feb. 11, connected the two sides to each other. After a three-week period of healing, and scaling down his Sinemet, doctors fully activated the device on March 5.

Today McNasby can barely see or feel the implanted wires and batteries. He likes the worry-free ease with which he and his doctor can adjust the voltage: he uses an Apple device the size of an iPhone that synchronizes with his batteries when he sets it on his chest, and his physician uses an iPad to determine the range of changes he can make. The day McNasby spoke to Parkinson’s News Today, one side of his brain was set at 2.5 volts and the other at 2.2 volts.

“You actually can’t hurt yourself with the device,” he said. “You can’t cause any damage that’s irreversible.”

Further improvement possible

And while he can’t feel the electricity while it’s stimulating his brain, he certainly can tell if it has been turned off: his symptoms come back immediately, “my tremors, especially,” he said.

Although McNasby said his case is not typical, he is now completely off the Sinemet. The only medication he uses is Amantadine, which he takes three times a day for tremors. Before his DBS implant, he had to take medication 15 times each day.

Despite developing Parkinson’s at an early age, McNasby says he feels very fortunate: his symptoms haven’t been worse, his disease progressed relatively slowly, and his response to DBS was strong. He never experienced the depression that often accompanies Parkinson’s.

He attributes his “luck” in large part to his one hour of exercise every day. He plays tennis, bikes, lifts weights, and does yoga.

McNasby said he and his doctor are still adjusting his electricity dosage, and it’s possible that he may feel even better in the future. After all, his DBS device has been operating for only two months and it has 44,000 settings.

He doesn’t want to get his hopes up too much. Still, he said, “44,000 [variations] – that’s a lot of options.”

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Parkinson’s Isn’t Always Invisible

invisible

I had breakfast with some friends today. One I hadn’t seen for six months and another for 10 years. Both of them are forever kind of friends, the sort who overlook your flaws. Flaws like Parkinson’s disease (PD).

It is rare for me to have tremors with all of the Sinemet (carbidopa-levodopa) that is in my body. But lately, I have noticed some breakthrough tremors. They don’t happen often or consistently. However, they occur frequently enough to remind me that despite medications to slow it down and a couple of deep brain stimulation surgeries to quieten the disease, it is continuing to progress. I notice it when I wave goodbye, put on my shoes, or try to pull a sweatshirt over my head. I’m aware of it when I stop abruptly during a conversation, having lost my train of thought.

I recognized the progression the other day when I walked 500 feet to a neighbor’s house. We went together to the mailboxes in our mobile home park. Before we left her house, she offered me one of her canes to use. I thought her offer was odd until I got home and realized I had been shuffling as I walked and she had noticed it. Ugh. 

Parkinson’s disease is often referred to as an invisible disease. I wish it would stay hidden.

So today, I had breakfast with friends. The tremors broke through. I was sharing something when I forgot what I was saying. My eyes became blurry and felt gritty. My hands cramped up and my fingers became painfully stiff. I had difficulty getting out of the booth we were sitting in, and when we got back to the house, I had trouble getting out of the car. My friends saw me struggling and came to my side to help.

It is hard to see the progression in yourself sometimes, especially when it happens quietly, gradually, and unassumingly.

But when you have good friends — forever friends — by your side, it makes living with the disease a little more bearable.

***

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.

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Initial Results Of PROGRESS Trial Show Promise For Abbott’s Infinity DBS System

DBS

Abbott has announced promising preliminary results from the PROGRESS trial (NCT02989610) evaluating its Infinity Deep Brain Stimulation (DBS) System for the treatment of Parkinson’s disease.

The initial results, detailed in a press release, suggest that the DBS system achieved its primary goal of broadening the “therapeutic window” — the range of stimulation that relieves symptoms without causing adverse effects.

Deep brain stimulation (DBS) is an invasive surgical technique in which thin wires are implanted in the brain to deliver electrical pulses to certain areas and ease motor symptoms in patients for whom standard medications are not effective.

Abbott’s DBS system differs from others in that it’s designed to “steer” electrical current toward specific parts of the brain in order to lessen symptoms such as tremors. This differs from traditional “omnidirectional” systems, which don’t target specific parts of the brain. Because the stimulation is more targeted, the theory is that patients should be able to get meaningful symptom relief with less stimulation. The preliminary results support this idea.

The system also uses a wireless Apple consumer device that allows doctors to perform upgrades and optimize programming settings without the need for surgery.

“We now have the first release of data to confirm the benefits of this technology over traditional omnidirectional lead technology in expanding the therapeutic window for a majority of patients,” said Matthew Brodsky, MD, medical director of the deep brain stimulation program at Oregon Health and Science University and the primary investigator of the PROGRESS trial.

The initial results included data for 66 Parkinson’s patients who were evaluated after three months of using the DBS system. The majority (89.4%) had a wider therapeutic window — an average increase of 35% — accompanied by an average decrease of 30% in the amount of stimulation needed to attain a therapeutic effect compared with patients who were using a conventional “omnidirectional” system.

“In the PROGRESS trial, patients were assessed sequentially, receiving conventional stimulation followed by directional stimulation,” said Keith Boettiger, vice president of neuromodulation at Abbott.

“Despite being blinded to their stimulation type, twice as many patients preferred directional stimulation. Clinicians also preferred directional stimulation in four times as many patients, demonstrating that the Infinity system with our directional lead technology can help people find symptom relief more easily than systems with conventional stimulation,” he said.

The PROGRESS trial is set to include up to 235 patients being treated for Parkinson’s disease with electrical stimulation at 37 sites across seven countries.

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