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PKG Wristwatch Device May Improve Clinical Decision-Making in Parkinson’s, Study Shows

PKG wearable monitoring device

A wrist-worn medical device — called the Personal KinetiGraph or PKG — that reminds people with Parkinson’s disease to take their medication, and records their movements to provide physicians with objective measurements of motor symptoms, showed great promise as a tool to improve clinical decision-making, a study found.

When worn for six days before a routine care visit, the device reported disease-related motor symptoms, like dyskinesiainvoluntary muscle movement — and bradykinesia, or the progressive slowness of movement over time, even when patients did not report such symptoms.

Overall, the device provided information for better treatment plans, allowed doctors to assess the efficacy of treatments, and improved doctor-patient communication.

The findings were reported in “PKG Movement Recording System Use Shows Promise in Routine Clinical Care of Patients With Parkinson’s Disease,” a study published in the journal Frontiers in Neurology.

The focus of Parkinson’s disease treatment is the relief, through medication, of symptoms like slow movements, rigidity, and tremor. However, such treatment regimens rely on patient self-reported symptoms, which often can be unreliable, even with validated assessments such as the Unified Parkinson’s Disease Rating Scale (UPDRS).

In addition, patients tend to do better during their appointments and clinical examination than at home.

The lack of objective data complicates treatment recommendations.

To overcome these problems, Global Kinetics Corporation (GKC) developed PKG, a watch-like device that objectively records movements and reminds patients to take their medication. The device was cleared for use by the U.S. Food and Drug Administration in September 2016. It weighs 35 grams, and is programmed and dispensed by clinical staff and worn by the patient for 6–10 full days.

The PGK uses accelerometers to monitor movement and a proprietary mathematical algorithm to convert the raw movement data into a PKG report — a graphical illustration of the patient’s movement that the clinician can analyze. That report provides “scores representative of dyskinesia and bradykinesia, compared to controls, throughout the day and from day to day,” the device’s website says.

To evaluate the clinical utility of the PKG, physicians at the University of California, Irvine (UCI) and University of California, Los Angeles (UCLA) now conducted a single-arm, open-label, observational study. The study included 63 people with Parkinson’s, ages between 46 and 83 years, who were responsive to dopaminergic therapy. In total, the patients had 85 routine care visits.

The main goal was to determine how often symptoms reported by patients disagreed with those in the PKG report. Secondary measures included the number of times the PKG report had findings that were treatable, how often doctors changed treatment based on the PKG report and how the report impacted patient care. Patients and caregivers’ satisfaction with the device also was measured.

The study’s participants wore the PKG for six continuous days before their appointments. Physicians then discussed symptoms with their patients and conducted a motor examination prior to uploading and reviewing the PKG report.

The team found that the PKG report demonstrated the presence of symptoms not reported by patients in 35% of the visits. Among these symptoms, bradykinesia was the most common finding of the PKG not picked up by the patient (50% of cases), followed by dyskinesia (33%). In contrast, 24% of patients reported a symptom that did not appear in the PKG report.

Regarding treatable symptoms, the device identified those individuals who could benefit from increases in levodopa doses or other treatments, including 47% of those with bradykinesia and 44% of those with dyskinesia.

In total, the report provided insights used to change treatment plans in 79% of participants, improved dialogue with the patient in 59% of visits, improved the ability to measure treatment impact in 38% of visits, and improved motor assessment in 33% of visits.

When surveyed at the end of the study, 82% of the participants agreed or strongly agreed that the PKG was easy to learn, easy to use, enabled them to confirm medication administration, and performed as expected. These patients said they would use the device again. In 39% of responses, participants also reported a very valuable impact on their care.

A 75-year-old women included in the trial “had difficulty reporting when she was off [when levodova effects wear out] and when she was dyskinetic,” the researchers said. “The PKG identified off times in the [morning] and dyskinesias in the afternoon. Based on the PKG data her regimen of carbidopa/levodopa dose was adjusted and her symptoms markedly improved.”

The researchers noted that the study was limited by the small number of patients. However, they said the results showed the usefulness of the new medical device.

“The PKG system provided clinical utility through improved characterization of motor manifestations of Parkinson’s disease, both the type and timing. This served to improve physician-patient dialogue and provide insight to clinicians and patients to inform treatment impact and decisions,” the team concluded.

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Therapeutic Potential of Cannabinoid Compounds in Parkinson’s and LID Analyzed in Review Study

cannabinoid

Cannabinoid compounds — particularly cannabidiol (CBD) — show potential to ease symptoms in people with Parkinson’s disease and levodopa-induced dyskinesia (LID), according to a review study.

Data also suggests that their therapeutic effects likely involve the direct modulation of critical messenger molecules in the brain and indirect reduction of brain inflammation.

However, future clinical studies are required to confirm these potential benefits in people with Parkinson’s disease and LID.

The review study, “Cannabidiol and Cannabinoid Compounds as Potential Strategies for Treating Parkinson’s Disease and L-DOPA-Induced Dyskinesia,” was published in the journal Neurotoxicity Research.

Parkinson’s disease is characterized by the presence of motor symptoms, including involuntary tremors, slowed movement, rigidity or stiffness, and impaired balance. However, it also can lead to a range of non-motor symptoms.

Long-term treatment with levodopa — the gold standard Parkinson’s therapy — leads to levodopa-induced dyskinesia (LID), or involuntary, jerky movements, in more than 50% of Parkinson’s patients.

Levodopa is used to ease motor symptoms by restoring the loss of dopamine — a key neurotransmitter, or messenger molecule in nerve cells — in these patients.

Both conditions (loss of dopamine and LID) are associated with changes in the basal ganglia, a brain region that contains the substantia nigra and the striatum and is involved in motor function.

Numerous studies over the past decade have looked at cannabis and its active components — known as cannabinoids — as potential treatments for motor symptoms in several neurodegenerative conditions.

Cannabinoids and other players of the endocannabinoid system — a complex modulatory network involved in brain development, memory, movement control, hormone production, and immune reactions — are known to have neuroprotective effects.

That is why “manipulation of the endocannabinoid system could be a promising therapy to control [Parkinson’s disease] and LID symptoms,” the researchers wrote.

A team of Brazilian researchers reviewed preclinical and clinical data on the therapeutic potential of cannabinoid compounds in people with Parkinson’s disease and LID.

Several studies have indicated that the endocannabinoid system — including the endocannabinoid anandamide and cannabinoid receptors — is altered in Parkinson’s patients and animal models of the disease, and that targeting it may prevent loss of dopamine-producing neurons, reduce inflammation, and ease Parkinson’s symptoms.

Evidence of an association between a dysregulated endocannabinoid system and LID is not as strong as that with Parkinson’s, but the team noted that there are still data suggesting that modulating this system, and in particular its receptors, may be a potential therapeutic approach.

“Among the cannabinoids investigated so far, CBD appears one of the most promising drugs in preclinical trials,” the researchers wrote.

CBD, the major non-psychoactive component in cannabis, is involved in a variety of important biologic functions. Preclinical studies have suggested that CBD regulates dopamine-dependent nerve communication by increasing dopamine levels, while decreasing the production of potentially harmful reactive oxygen species and pro-inflammatory molecules.

The team noted that “these anti-inflammatory and antioxidant properties may help explain CBD’s neuroprotective action.”

Most studies of CBD in Parkinson’s animal models have showed that CBD reduced the loss of dopamine-producing neurons and eased motor symptoms. However, others reported no significant benefit.

Data from clinical trials suggest that this cannabinoid eases symptoms in Parkinson’s patients, but a consistent beneficial effect on motor symptoms is still lacking. Furthermore, no clinical study has focused so far on the effects of CBD in reducing LID in people with Parkinson’s disease.

Some studies reported that CBD led to a reduction in psychotic symptoms, and improvements in emotional well-being, cognition, communication, and in mobility and body discomfort in Parkinson’s patients. However, these potential improvements in motor function failed to reflect differences in the total motor score, compared with patients receiving a placebo.

While several case reports, uncontrolled trials, and surveys suggest beneficial effects of cannabinoids in Parkinson’s patients, only four randomized placebo-controlled trials have analyzed the effects of different cannabinoids on Parkinson’s motor symptoms such as akinesia, tremor, or LID. Akinesia is the loss of the ability to move muscles voluntarily.

Only one of these trials, which evaluated the cannabinoid nabilone, showed a clear effect on motor symptoms with an ease in LID. Nabilone is a man-made form of cannabis often used to treat severe nausea and vomiting caused by cancer chemotherapy.

The authors also noted that growing evidence suggests that development of LID is associated with increased neuroinflammation, which may be  potentially caused by levodopa and other Parkinson’s treatments. The beneficial effects of anti-inflammatory medicines to ease LID symptoms also reinforce inflammation’s contribution in LID.

Notably, preclinical studies suggest that a combination of CBD with compounds modulating specific non-cannabinoid receptors — associated with neuroprotective and anti-inflammatory effects and activated by endocannabinoids — may be an effective therapeutic approach to ease Parkinson’s motor symptoms and LID.

More clinical trials are required to clarify the therapeutic effects of cannabinoids in people with Parkinson’s disease and LID, and whether the combination with other compounds modulating neuroinflammation boosts their effects.

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Neuroscientist Awarded $2.9M NIH Grant to Study and Possibly Prevent Side Effects of Levodopa

levodopa study

The National Institutes of Health has awarded a $2.9 million grant to a Feinstein Institutes for Medical Research scientist working to better understand and prevent dyskinesia, a common side effect of the levodopa used to manage motor symptoms of Parkinson’s disease.

The five-year award went to David Eidelberg, a neurologist and neuroscientist noted for his pioneering work into brain networks in states of disease.

Levodopa is widely given to Parkinson’s patients to help with stiffness and slowness of movement. Naturally found in the body, it’s the precursor of dopamine, a signaling molecule that is involved in nerve cell communication.

Often combined with other medications to reduce side effects like nausea, levodopa is carried on circulating blood to the brain. There it’s converted into dopamine, which activates dopamine receptors to improve the workings of movement control centers in the brain.

However, after about five years of daily use, most patients develop levodopa-induced dyskinesias (LID) — uncontrolled, involuntary movements that interfere with daily activities — shortly after each dose. This side effect can be disabling and problematic for long-term Parkinson’s management.

“Since levodopa is regularly used to help ease the effects of Parkinson’s disease, it is essential to understand the therapy’s full effects on the cerebral blood vessels as well as neurons,” Eidelberg, head of the Feinstein’s Center for Neurosciences in the Institute of Molecular Medicine, said in a press release. “With this research, we hope to slow down or stop the development of LID in Parkinson’s patients.”

His study is titled “Neurovascular Effects of Dopamine Replacement Therapy in Parkinson’s Disease.”

Eidelberg is internationally known for using functional brain networks as neurological disease biomarkers to aid in Parkinson’s diagnosis, disease progression monitoring, and treatment assessment. He and his team are believed to be the first to observe uncoupling of the neuronal and cerebrovascular responses to dopamine in Parkinson’s patients, a pronounced occurrence in drug-induced dyskinesias. They seek to understand the neurovascular issues that underlie these dyskinesias by charting changes over time.

“Dr. Eidelberg is a leader in Parkinson’s disease research,” said Kevin J. Tracey, MD, president and CEO of the Feinstein Institutes. “This further support of his work by NIH offers a new path to understand this syndrome.”

In related news, a clinical trial may soon test a potential oral treatment for levodopa-induced dyskinesia, IRLAB Therapeutics announced in a company release. It plans to open a Phase 2b/3 study in the first half of next year assessing the safety and effectiveness of its oral candidate, IRL790, in Parkinson’s patients with these dyskinesias.

A four-week Phase 1b safety and tolerability study (NCT03531060) in 15 Parkinson’s patients in Sweden reported good safety (no serious side effects) and early evidence of possible benefits (drops in scores measuring dyskinesia) in people taking IRL790 compared to those given a placebo.

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Gocovri ER Capsules Ably Ease Motor Symptoms But Care Needed with Elderly, Research Shows

Gocovri and its use

Gocovri (amantadine) extended release capsules work to help lessen dyskinesia, or involuntary muscle movement, and off episodes in Parkinson’s, but special care needs to be given elderly patients with poorer kidney function, according to data presented by Adamas Pharmaceuticals, the treatment’s developer, at a science conference.

Renal insufficiency — or inadequate kidney function, often due to blood flow problems — can be common in people starting around age 70. Doctors should carefully monitor their kidney health and adjust Gocovri doses accordingly, the researchers said, to prevent amantadine from accumulating at unsafe levels in their system.

Gocovri is an extended release prescription medicine for dyskinesia, the sudden and uncontrolled movements that Parkinson’s  patients experience on levodopa therapy, with or without use of other medicines working to increase the effects of dopamine — a chemical messenger— in the brain.

Although the therapy’s exact mechanism of action is not known, Gocovri has been shown to increase dopamine release and block its re-uptake, raising overall dopamine levels and easing motor symptoms.

Data from Gocovri’s development program and post-marketing surveillance were highlighted in five scientific posters at the International Congress of Parkinson’s Disease and Movement Disorders, running in France through Sept. 26.

In the study “The Effect of Gocovri on Motor Aspects of Experiences of Daily Living: Analyses of MDS-UPDRS Part II Data from a Phase 3 Program,” researchers assessed the impact of Gocovri capsules, taken at bedtime, on motor aspects of daily life in Parkinson’s patients.

Combined data from two Phase 3 trials (NCT02136914 and NCT02274766) found that 12 weeks of Gocovri treatment significantly improved motor skills and life activities in 82 treated patients, addressing such issues as freezing, tremor, eating, and getting out of bed/car/deep chair, compared to 87 patients given a placebo. According to the researchers, the improvement noted “was both statistically significant and clinically meaningful.”

In the study “Analysis of the Shape of the Gocovri Steady-state PK Profile: Implications for an Extended Release Product,” researchers detailed Gocovri’s pharmacokinetic profile — essentially, how the body affects a medicine.

Bedtime dosing of Gocovri resulted in a delayed, slow rise in amantadine concentrations. The analysis showed concentrations to be high in the morning and sustained throughout the day, but with minimal nighttime exposure, contributing to a sustained reduction in both dyskinesia and off episodes. (Off time refers to the periods when dopaminergic medication stops working, and motor symptoms reoccur.)

Three posters assessed the Gocovri’s safety. These assessments were made during the Phase 3 trials and throughout the year after the medicine was approved and made available to patients.

These posters are: “Gocovri Dose Adjustment in Elderly Parkinson’s Patients at Risk for Renal Impairment: Implications from an Exposure Simulation Model,” “The Efficacy and Safety of Gocovri Based on Age: Special Population Analyses of a Phase 3 Study Program” and “Safety of Gocovri in Clinical Practice: One-Year Post-Launch Pharmacovigilance Data.

The most common side effects reported with Gocovri use are dizziness, hallucinations, and falls. While the treatment did ease dyskinesia and other motor complications in all age groups (under 65 to older than 75) studied, adverse events were more frequent in people age 75 and older.

Elderly patients are also more susceptible to renal impairment, the researchers noted in these posters, and may have evidence of chronic kidney disease (defined by researchers here as renal function of less 50 mL/min/m2). In these cases, doctors need to adjust Gocovri doses to avoid drug accumulation, resulting toxicity, and dose- and exposure-related side effects.

“No dose adjustment of Gocovri is recommended on the basis of age alone; however, because renal impairment is common in elderly patients, care should be taken in dose selection, and it may be useful to monitor renal function,” they wrote.

Gocovri extended release is available at two different doses, as 68.5 mg and 137 mg capsules.

Side effects seen in prescription use closely mirror those observed in the Phase 3 trials, the researcher noted, including reports of hallucinations.

“Adamas’ purpose is to significantly improve the lives of people affected by neurological diseases, and we remain committed to the presentation of Gocovri data to provide further information to support robust clinical discussions,” Rajiv Patni, MD, the company’s chief medical officer, said in a news release.

“Our goal is to ensure that neurologists understand how Gocovri may be an option for their Parkinson’s disease patients with dyskinesia on dopaminergic therapies by providing them with a treatment that may increase functional on time by decreasing both dyskinesia and off,” Patni added.

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Inbrija Can Help to Improve Work Productivity and Keep Dyskinesia at Bay, Acorda Reports

study data presentations

Use of Inbrija (levodopa inhalation powder) and like medications help to more effectively manage of off episodes in Parkinson’s disease and improve work productivity in patients using it, according to a study being presented by Acorda Therapeutics at the International Congress of Parkinson’s Disease and Movement Disorders.

Another study presentation at the congress, now underway in France, will show that Inbrija treatment does not lead to a worsening of dyskinesia, or involuntary muscle movement.

Dopaminergic medications, like levodopa, help to control Parkinson’s motor symptoms. But as disease progresses, patients typically need to gradually increase their dose to maintain the same level of benefit. And even with such increases, they sometimes experience a reappearance or worsening of symptoms (off periods) due to the diminishing effects of dopaminergic therapy.

In the study, “Impact of OFF periods on aspects of employment for people with Parkinson’s disease,” presented as a scientific poster, researchers characterized the burden of off periods on work absence and productivity.

They used data from the “Financial and Social Impact of Parkinson’s Disease Survey” produced by the Michael J. Fox Foundation (MJFF) and the Parkinson’s Foundation, conducted between Sept. 17 and Oct. 8, 2018.

The online survey was directed at people with Parkinson’s, and completed by the patients, their care partners, family members or close friends. It compared the burden — in terms of work productivity — of off periods in people reporting to experience them in the past 12 months to those reporting no experience of off periods while on dopaminergic therapy.

A total 1,602 surveys were returned, 70% completed by Parkinson’s patients, and 20% by caregivers, family members, or close friend. Off periods were reported by 881 (55%) survey respondents, and an absence of off-period symptoms by 434 (27%) . Around 18% (287 people) did not know if they had experienced an off period over the previous year or failed to respond to the question.

Of the 881 patients reporting off periods, 176 (20%) worked full or part-time. Among those without such reports,  in 90 (21%) worked full or part-time. Those with off periods were more likely to report reduced work productivity, in comparison to the other patient group (72% vs. 43%).

Almost half (48%) of patients with off periods reported at least 10 days each month of low productivity, compared to the 29% of those without off period. Importantly, 34% of them missed, on average, at least three working days each month because of their disease, compared to the 21% of patients without off periods.

“PD [Parkinson’s disease] can have a financial burden on patients and their families,” the researchers noted. “More effective management of OFF periods and other PD symptoms may alleviate this burden on people with PD.”

In another scientific poster, titled “Dyskinesia Rates in Patients with Parkinson’s Disease on CVT-301 (levodopa inhalation powder),” the company summarized the results of their analysis on the effects of Inbrija (CVT-301) on Parkinson’s dyskinesia  (involuntary muscle movements).

Inbrija, developed and marketed by Acorda, is an inhaled formulation of levodopa approved by the U.S. Food and Drug Administration (FDA) to treat symptoms of Parkinson’s disease during off episodes. When inhaled, this dry powder formulation of levodopa bypasses the digestive system and to deliver a higher and more consistent dose of levodopa to the brain.

In a 12-week, randomized and placebo-controlled Phase 3 study (known as SPAN-PD, NCT02240030) in 339 Parkinson’s patients on a carbidopa/levodopa regimen and experiencing off episodes, were treated with Inbrija or placebo. Results found that treatment at an 84 mg dose significantly eased motor symptoms as soon as 30 minutes after taking a dose.

More than half of patients (58%) given Inbrija also had control of their motor symptoms, meaning they went from an off period to an on state. They also maintained an on state when evaluated up to an hour after treatment administration, compared to 36% in the placebo group.

Researchers for this study analyzed the effects of Inbrija on patients’ dyskinesia. They obtained reports made by patients taking part in the trial, required to keep diaries of time with dyskinesia, reported as occurring over three consecutive days prior to each study visit.

Adverse events during the SPAN-PD study were also examined, as were trial investigator ratings of dyskinesia occurrence and 60 minutes post-dose, measured by the Unified Parkinson’s Disease Rating Scale (UPDRS) part IV (motor complications).

On average, patients took two doses of Inbrija (84 mg) per day during the trial.

Four (3.5%) patients on Inbrija complained of a dyskinesia-like event, in contrast to none in the placebo group. No one withdrew from the study due to dyskinesia.

At week 12, examiner-rated dyskinesia at one hour post-dose was of 16.7% among Inbrija-treated patients and 8% among people in the placebo group, all rated mild to moderate with the exception of one placebo patient whose dyskinesia was judged severe.

“In this phase 3 study of [Inbrija], adverse events and examiner ratings of mild to moderate dyskinesia were reported more frequently for [Inbrija] compared to placebo, but there was no increase in troublesome dyskinesia according to the patient reported diary and the overall impact on UPDRS part IV dyskinesia score was minimal,” the researchers concluded.

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Simple Solutions That Make Living with Parkinson’s a Little Easier

solutions

Parkinson’s disease introduces challenges into your daily life. Tasks that were once second nature become more complicated when you’re managing symptoms like tremors and dyskinesia. Fortunately, product designers are coming up with simple, adaptive solutions that can make living with Parkinson’s a little easier.

Introducing some adaptive products into your routines might help you to bring autonomy back into your life. I’ve compiled a list of products that were developed to make everyday chores easier for people who struggle with tremors and other symptoms. While my dad, who has Parkinson’s, hasn’t used any of these products yet, some might be helpful for him when he completes his daily tasks.

Keeping meals simple

Liftware products are designed for those with tremors and limited hand and arm mobility. The brand has two main products. One is the Liftware Steady, which is specifically for those with tremors. The electronic handle keeps the attachable fork or spoon steady, allowing the user to enjoy their meals with confidence.

A starter kit costs $195, but the expense might be worth it for the independence that it gives.

Dad loves chicken soup, but tremors make eating it increasingly difficult. The Liftware spoon could provide him with a solution.

Avoiding spills

In a TED Talk, Mileha Soneji shared her mission to find simple solutions that make a significant impact. Inspired by the challenges faced by an uncle who has Parkinson’s disease, she invented the NoSpill Cup. The cup is not yet available, but it is expected to retail for $20.

While spill-proof cups aren’t new inventions, previous designs were created mainly for children. It can be disheartening for someone who has lived an independent life to have to use a product that makes them feel like a child. But the NoSpill Cup aims to give them back their independence.

Similarly, the Kangaroo Cup minimizes spilling while you’re attempting to pick up your drink. Another product, the HandSteady mug, has a rotating handle to make pivoting the cup toward your mouth easier. It’s ideal for someone who struggles with wrist mobility.

Fixtures for your home

Touch lights can be turned on by tapping. Rather than fumbling with a switch in the dark, you merely push the dome of the light to turn it on.

The light costs $12.99 and comes with a timer that you can set to turn off after either one or five minutes.

Luckily, my mom is around to help my dad with awkward light switches. But using a touch light could help him to maintain some independence.

Help with dressing

When Bob Scott became frustrated with his reduced shoulder mobility while dressing, he came up with a solution. His invention — named “Bob’s Flunkey” — is a piece of string attached to a bulldog clip and fastened to a door. It can be clipped to a jacket, for example, allowing the wearer to dress with ease.

As your mobility diminishes, you might find dressing to be increasingly difficult. Bob’s invention is an example of how simple adaptations can make daily tasks easier.

Whether Dad is preparing for his boxing class or getting ready to attend church, a simple solution like Bob’s can help to relieve some of his frustrations with dressing.

Do you have any products or routines that make life easier? Please share in the comments below. 

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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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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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Parkinson’s Forum Offers Patients and Caregivers Place to Learn, Share, and Foster Community

patient-caregiver forums

Online forums have markedly altered how patients, caregivers, and healthcare professionals communicate and connect. Even when miles apart, individuals can establish supportive relationships, share experiences and information, and sometimes simply vent.

BioNews Services, a leading online health, science and research publication company, has been rolling out its own forums, including one for Parkinson’s disease (PD), a progressive neurodegenerative disorder that affects roughly 1 million U.S. residents, and more than 10 million people worldwide. Moderated by patients and caregivers — nearly all of them BioNews columnists — these forums complement the company’s news and information websites, such as Parkinson’s News Today.

It’s that synergy of science and personal experience that sets BioNews’ forums apart.

“Patient forums are certainly not a new concept, but BioNews has something unique to offer our communities,” said Chris Comish, BioNews’ founder and CEO. “No other company has the ability to deliver such relevant content to our readers and use that as a starting point for driving conversation and discourse. We’ve had some really touching conversations occur, and have seen patients, particularly those newly diagnosed, find sources of hope and inspiration. It’s touched everyone involved.”

The company has introduced nine forums since last January — Parkinson’s was launched last July —  with more launching by year’s end. Its plan is to have a forum, customized by moderators, for each of its 60-plus rare disease sites. Every forum requires registration and moderator approval, and offers features such as private messaging and keyword search.

BioNews is working to add multimedia to each forum, including podcasts, YouTube videos, and flash briefings.

Within each forum are categories, also known as subforums. In A Forum for Parkinson’s Disease Caregivers, for example, members can connect with other caregivers and learn news ways to overcome challenges and practice self-care, like those presented here. Other posts examine Parkinson’s caregiving and income loss, and how to speak to a loved one with this disease.

In the subforum Diagnosis Information and General Questions, people newly diagnosed along with their caregivers and friends can ask questions about the disease and find information, all while supporting each other. Discussion topics range from personal reactions to a diagnosis to reasons for a misdiagnosis, like those detailed in this posted article.

The Living with Parkinson’s Disease subforum is a place for those who understand the day-to-day challenges the disease poses, including difficulties with walking and speaking. It’s also a resource for information about living with a chronic illness. There are posts about disease progression, for instance, and books by those with Parkinson’s about their journey.

Members can use the Parkinson’s Disease Symptoms space for resources to help them understand and cope with how Parkinson’s uniquely affects them. Because symptoms vary from person to person, the subforum is particularly popular. Subjects include trouble rolling over in bed, difficulty swallowing waterimproving handwriting, and the effects of dyskinesia — those uncontrolled and involuntary muscle movements.

In Parkinson’s Disease Alternative Treatments, participants can ask questions and share information about alternative or experimental therapies they’ve tried or are curious about, with the proviso that many suggestions are not science based, and that effects can vary. There are posts about medical cannabis, for example, gluten-free diets and rosemary essential oil.

The subforum Parkinson’s Disease Medications is for sharing information and experiences related to therapies, including levodopa and Xadago (safinamide). The platform Parkinson’s Research News keeps members apprised of the latest study and treatment advances. Members can connect with researchers, healthcare professionals, and other patients. Posts range from a study about sex and Parkinson’s to the preclinical results on a molecule that might reduce toxic protein buildups in the brain and reverse motor symptoms.

In Parkinson’s Disease and Exercise, participants can learn about, and share the benefits and challenges of, exercising. Entries touch on specific forms of exercise like swimming, or being overwhelmed by the volume of exercise required. Members can use the Parkinson’s Disease Awareness and Advocacy subforum to learn how to educate others about Parkinson’s, and to discover current and future efforts to heighten disease awareness.

In all, Jean Mellano, who is the Parkinson’s forum co-moderator along with Ally MacGregor, said she and others have found that levity is often most effective in disease management.

“Laughter is the best medicine,” said Mellano, who was diagnosed in 2015. “Having a sense of humor about the absurdity of some PD symptoms can help with the healing process. If we can share our stories with others, it may lessen the embarrassment caused by our symptoms.”

To help generate conversation, forum moderators regularly post topics within subforums. Sometimes the topic is based on a new column or news article. Other times, it’s something about day-to-day life. Moderators also post about their own lives, for instance, sharing thoughts on movies they’ve seen or their vacation photos. Some forums also have groups, both public and private subforum offshoots.

The forums’ framework was mostly developed by Kevin Schaefer with help from the social media team at BioNews. Schaefer is the company’s community development manager and an SMA forum moderator. He’s excited about the forums, and their growth and future potential.

“It’s just really cool to see a community evolving in each of them,” said Schaefer, who has SMA type 2. “They are as much about fostering community as they are about providing information. We want to do everything we can to engage with our members.”

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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.

***

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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PKG Wearable Device Objectively Detects Motor Fluctuations, Dyskinesia, Study Shows

PKG motor fluctuations

A wearable motion-tracking device called Personal KinetiGraph (PKG) objectively and effectively assesses Parkinson’s-related motor fluctuations, researchers report.

The study, “The role of Personal KinetiGraphTM fluctuator score in quantifying the progression of motor fluctuations in Parkinson’s disease,” was published in Functional Neurology.

The PKG system, developed by Global Kinetics Corporation, is a wrist-worn movement recording device. It collects data on a person’s motor symptoms, including tremors, slowness of movement (bradykinesia), and abnormal involuntary movements (dyskinesia).

The technology also assesses patients’ motor fluctuations, immobility, and daytime somnolence, or sleepiness. Clinicians also can use it to help study an individual’s likelihood for developing impulsive behaviors, and to collect information on medication compliance.

The device has been cleared by the U.S. Food and Drug Administration, and holds CE certification, meaning it meets EU safety, health, and environmental protection requirements.

Previous studies have shown that PKG is able to distinguish between patients with and without motor fluctuations. Now, investigators at the Cedar-Sinai Medical Center in Los Angeles set up to determine whether the cut-offs of PKG motor fluctuation scores could define the progression of Parkinson’s fluctuation stages.

A total 54 Parkinson’s patients — 37 men and 17 women, mean age of 68 years — used the PKG device for 6 days. The participants then were asked to complete a 2-day standardized motor diary, essentially a journal in which the individuals would self-report and record their motor symptoms.

By applying clinically validated scales and questionnaires, researchers were able to categorize the participants into four groups: non-fluctuators (14 people), or patients without motor fluctuations; early (15 people); moderate (15 people); and troublesome fluctuators (10 people), or individuals with motor fluctuations due to a decline in the usual benefit of levodopa therapy.

Of the 54 individuals who completed the PKG trial, only 39 completed and delivered valid motor diaries. Compliance with the motor diary improved with decreasing severity of motor fluctuations — meaning that patients with less severe fluctuations were more likely to complete the diary.

PKG data revealed the device’s fluctuation scores significantly differentiated early fluctuators and troublesome fluctuators, as well as dyskinetic and non-dyskinetic patients.

Meanwhile, patient-reported motor diaries could not distinguish the four study groups based on the average “off” time, the researchers said.

Dopaminergic medications enable Parkinson’s motor symptom control — meaning that treatment temporarily stops the symptoms. However, as the disease progresses, patients typically need to gradually increase the treatment dose to get the maximum benefit. Even after that, however, they may still experience the reappearance or worsening of symptoms — known as “off periods” — due to the diminishing effects of the therapy.

Average time with dyskinesia, or abnormal involuntary movements, distinguished the non-fluctuators and moderate fluctuators. Importantly, the PKG system identified high dyskinesia scores in patients who denied having it.

“Motor fluctuations, including ‘wearing-off’ and dyskinesia, are associated with increased disease severity and disability, and PD [Parkinson’s disease] patients experience decreased quality of life as their response to medical therapy becomes less predictable,” Echo E. Tan, MD, neurologist at Cedar-Sinai Medical Center and the study’s lead author, said in a press release.

“Effectively managing motor fluctuations is complicated by the lack of objective assessment tools, leading patients and physicians to rely on direct observation in the clinic or patient reports, which may be unrevealing, incomplete and unreliable,” Tan added.

The researchers noted that “wearable devices transcend language barriers, cognitive barriers, as well as time constraints in the clinic.” That makes this wearable device a useful tool to objectively measure motor fluctuations in Parkinson’s disease.

“The results of our study demonstrate that the fluctuation score calculated by the PKG system provides objective quantification of motor fluctuations. This may help improve routine management of PD [Parkinson’s disease] patients and enable more objective assessments in clinical trials of PD [Parkinson’s disease] therapies,” Tan concluded.

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