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Parkinson’s Patient Brings Awareness to Mannitol Supplement in New Documentary

mannitol documentary

A documentary premiering July 29 on Israel’s satellite TV service provider, yes, highlights what one Parkinson’s disease patient was able to achieve when he set out to advocate for himself and other patients. 

In collaboration with Nisan Katz and Nir Kafri Productions, “My Disease Our Revolution” follows Dany Vesely, 63, as he champions a supplement that he says helped him combat his Parkinson’s.  

At the center of the story is an over-the-counter sweetener called mannitol. Due to the efforts of Vesely and others, the supplement now is being tested in Parkinson’s patients in a small randomized, controlled Phase 2a trial. But the real story is not necessarily in the trial or its eventual results; it’s how it got there in the first place.

The documentary crew followed Vesely for the past two years, filming him as he and his business partner gained support for a new venture, CliniCrowd, which is exploring the idea of using patient-reported data to test the viability of readily available supplements.

These are compounds that have been deemed safe by the U.S. Food and Drug Administration (FDA) and have shown promise in research for some diseases, but for which companies have little financial incentive to put through expensive clinical trials. 

Dany Vesely on a hike in Israel. (Photo by Nir Kafri)

“Bringing back the power to the patient, it can be a change; it can be a revolution,” filmmaker Katz told Parkinson’s News Today in a video interview.  

In the documentary, Vesely and Sagit Weiss, a physician and immunologist and Parkinson’s patient, both said mannitol helped stabilize their symptoms after consistently taking the water-soluble supplement, which also is used as a healthier alternative to sugar. Vesely’s success with mannitol was the inspiration to form CliniCrowd and let patients find out for themselves. 

“We couldn’t stay calm to the fact that 10 million patients around the world will not have the chance to know about it,” Vesely said in a video interview.

From diagnosis to startup

Vesely, diagnosed with Parkinson’s in 2013, didn’t know what mannitol was until his friend had a chance meeting with a PhD researcher who had been studying small molecules that could inhibit a protein responsible for the disease.

That researcher’s name was Daniel Segal, PhD, a geneticist at Tel Aviv University. Segal published a paper (incidentally, the same year Vesely was diagnosed), which suggested that mannitol could “promote [alpha]-synuclein clearance in the cell bodies” as seen in fruit fly and mouse models. For an unknown reason, alpha-synuclein forms toxic clumps that impair the production of dopamine, leading to Parkinson’s. 

Read more about the science behind mannitol and its potential in Parkinson’s here.

“I think it will be interesting for Parkinson’s patients not only about the mannitol,” Katz said. “I think it’s also about the way Dany copes and fights the disease.” 

Parkinson’s is a progressive, visible disease. It causes involuntary tremors, slowed movement, rigidity or stiffness, and impaired balance. Less visible are sleep problems, constipation, slurred speech, and mood disorders.

Katz opens the film with Vesely slowly getting out of bed, shuffling to the bathroom to brush his teeth. The documentary also shows him riding his stationary bicycle and working on his balance in a dance class.

Dany Vesely does one of his exercises in a screenshot of the documentary. (Photo by Nir Kafri)

“A lot of people are getting Parkinson’s and becoming very lonely and they’re inside themselves, and they are crying, ‘why did we get Parkinson’s’?” Amir Sadeh, a friend of Vesely’s and CEO and co-founder of CliniCrowd, who also started taking mannitol as a preventive measure, said in a video interview. “Not Dany, he’s a fighter. ‘With my Parkinson’s, I’m going to help the world.’” 

Sadeh and Vesely, along with three others, founded CliniCrowd in 2018, with the expectation of using the “wisdom of the crowd” to gather data on patients’ experiences with mannitol. Vesely is an active chairman of the board; however, he works full time as a partner at the security company Sdema Group.

They didn’t establish a business model early on because, as Sadeh said, “we started this venture to make the world a better place.” As the company grew, however, one option did emerge. 

CliniCrowd is working with some food supplement companies to secure funding by doing research into their products, according to Sadeh. The over-the-counter products one might pick up at a pharmacy for allergies, a cold or the flu can’t claim anything about efficacy. But they can show data that might support such claims. Sadeh said that’s where CliniCrowd comes in, offering a platform for companies to gather information about patient experiences.

Still, the project remains mostly self-funded.

Using the ‘wisdom of the crowd’

The problem with mannitol, as the documentary explores, is that it’s an over-the-counter supplement labeled as safe by health authorities around the world. Pharmaceutical companies have little incentive to invest in a clinical trial, Sadeh said. A 2018 study in JAMA Internal Medicine puts the average cost of a trial at $19 million.  

In an interview in the documentary, Segal says having more doctors prescribe the supplement is a Catch-22 situation. They won’t give mannitol to patients because there’s no clinical trial, but no one would fund such a study.  

Nisan Katz speaks at an event. (Photo by Nir Kafri)

“We’re not against the pharma company; we’re not against doctors. Because this system is usually about economic and profit, it’s understandable to me,” Katz said. “Sometimes, in some situations, it can be bad for patients.”

Katz said he interviewed a CEO of a big pharmaceutical company but decided to cut it. The CEO said what Katz already knew: There wasn’t an economic incentive. Instead, he opted to use an anonymous interview with a pharmaceutical company employee. 

Since CliniCrowd launched, 2,000 Parkinson’s patients from 54 different countries have participated, 1,076 of whom they now have follow-up data, according to an email from Sadeh

In the future, they are hoping to be able to make use of wearable devices that can “objectively track medical conditions” and avoid potential selection bias —  that is, people with positive results being the only ones to report their outcomes. He added that the data analytics platform they use also accounts for potential statistical pitfalls.

“You will make your own decision to take it or not take it, but at the end of the day, we really want to get the FDA approval and European drug authority,” Sadeh said. “Today everyone can buy it. It’s a safe solution.”

The revolution has just begun 

Hadassah Medical Center is conducting a Phase 2 trial testing mannitol for Parkinson’s under the supervision of neurologist David Arkadir. No corporation is funding this study; rather, the Ministry of Health of Israel has been providing grants for substances that can’t be patented. Mannitol was one of them. 

In addition to mannitol, CliniCrowd is looking into how cinnamon extract potentially could prevent Alzheimer’s or help existing patients with user-reported outcomes.

Katz, 46, had wanted to make movies since he was a child. In his 20-year career as a documentarian, he’s covered an Israeli community formed in India, the conflict between Israel and Palestine, and stories of immigrants playing soccer around the world. 

But for this documentary, Katz said, “I can really believe I can make a change and impact millions of people.”

Vesely had a chance to see the documentary at a private screening earlier this month. It’s currently available on Vimeo’s on-demand service. He hates to see himself on screen, but it was well worth it for him. 

“I know it served the mission, that it will inspire other patients and spread the notion about mannitol, about recruiting the wisdom of the crowd to the conservative healthcare,” Vesely said.

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Neurosteer Promotes Wearable Monitor to Detect Early Parkinson’s

Neurosteer

Within a few years, doctors will be able to remotely evaluate patients for their risk of developing Alzheimer’s disease, Parkinson’s disease and frontotemporal dementia — without having to hook them up to expensive, cumbersome machines generally found only in hospitals.

That’s the vision of Israeli entrepreneur Nathan Intrator, CEO of Neurosteer.

Matthieu Ricard, a Buddhist monk, meditates in Brussels while wearing a Neurosteer brain monitoring device. (Photos courtesy of Neurosteer)

“Millions of people suffer from neurodegenerative diseases, and as life expectancy goes up, that number will only increase,” Intrator told BioNews Services, publisher of this website. “There is no cure for these diseases, so our only hope at this point is to detect them quite early so patients can change lifestyle factors — diet, exercise, sleep and stress.”

Intrator’s background is in mathematics, with an emphasis on signal processing. But his interest was always on the brain, and his doctoral thesis was on the theory of neuroplasticity. Intrator’s mentor was physicist and Nobel Prize laureate Leon Cooper, director of Brown University’s Center for Neural Science.

The Tel Aviv-born researcher, interviewed recently in New York, said he realized years ago that the brain — with its 100 billion or so neurons — produces a “very sophisticated signal.” But the way that signal has been analyzed is mostly through spectral analysis, which, he said, does not provide sufficient information about the brain.

“We monitor most essential organs, like the heart, as well as temperature and blood pressure, but we have nothing for the brain — not at the bedside and not at the clinic,” he said. “The only things we have are multimillion-dollar scanners like PET, CT, and MRI, which obviously cannot be next to a person’s bed or provide continuous monitoring or multiple assessments of a patient.”

A model of convenience?

Current EEG monitors are quite large, containing between 16 and 256 electrodes.

“Several years ago at Tel Aviv University, I started testing the possibility that with more advanced signal processing, we could reduce the number of electrodes,” Intrator said. “The analogy is that with a single ear, we can hear an orchestra and decompose the individual instruments. I’m trying to do that with the brain: listen with a single EEG channel, and then separate this complex signal into multiple different components, and see whether these different components have some physiological meaning.

Neurosteer three-electrode strip and monitoring screen.

“Once I realized it was producing exciting results, I had no choice but to take a break from the university and commercialize it,” said Intrator, who left Tel Aviv University in 2015 after 20 years.

Intrator founded Neurosteer that same year, and has since developed a wearable device that consists of only three electrodes. The adhesive EEG sensor strip is placed on a patient’s forehead. It’s essentially a battery-powered amplifier and an analog-to-digital converter, with Bluetooth capability to send the signal to the cloud using proprietary algorithms.

Neurosteer uses signal processing, artificial intelligence, and machine learning to produce high-level biomarkers linked to various brain states and neurological disorders.

The units themselves will sell for a few thousand dollars each, and will be manufactured in the U.S., Europe, and potentially Israel. Neurosteer itself employs about a dozen people in California and in the northern Tel Aviv suburb of Herzliyya.

Clinical trials now underway

“I want to be able to help people enjoy a much more dignified life in their golden age,” Intrator said. “My father’s parents both had Alzheimer’s, and I know what it’s like not to be recognized as a son.”

Intrator said his financial backers have invested just over $5 million in the company.

Neurosteer CEO Nathan Intrator.

“These are wealthy individuals. All of them have some kind of personal connection to these disorders,” he said, adding that “we want to take this device to full FDA [U.S. Food and Drug Administration] approval so that it can be used for assessing different neurodegenerative diseases.”

Neurosteer is currently conducting clinical trials in the United States as well as Belgium, Israel, Italy, and Britain, he said.

“Inflammation makes us age faster and damages the brain,” he said. “Our goal is to introduce a very simple test that can be administered in the clinic, or in an elderly home without a neurologist or technician — and then provide a report to the general physician, who can then decide what to do.”

There’s no reason a person would not use a monitor like this at home twice a week, to monitor their mood, cognitive activity, sleep and basically brain health,” he said. “It sends data in real time to the cloud, where the analysis is done to produce real-time response and reports. For a comprehensive brain assessment, we are also providing stimulation in the form of cognitive and emotional challenges from the cloud to the patient.”

‘Massive deployment’ of sensors

In December 2019, Britain’s Tradex News named Neurosteer its Brain Health Company of the Year.

Ideally, the company foresees the testing of everyone over 65. That, he said, means a “massive deployment” of sensors.

Israeli musician and scientific researcher Neta Maimon demonstrates Neurosteer technology.

“This is why we insisted on reducing, as much as possible, the number of electrodes. The more electrodes, the more cumbersome the device,” he said. “We use signal processing that was invented in the 1990s. The seminal work in EEG was done in 1924 with the prehistoric signal processing tools available at that time. We’ve basically taken advantage of the fact that digital signal processing has progressed dramatically since then.”

Neurosteer’s market for the new product includes pharmaceutical companies, as well as patients who arrive at hospital emergency rooms with stroke, epilepsy, or traumatic brain injuries.

“The proof is in clinical trials, and that’s what we have to do, in order to demonstrate to doctors and later to the FDA that our device indeed provides information they cannot get otherwise — or that they can only get with very expensive equipment.”

While several startups — mostly supported by the military — deal with brain trauma and concussions, he said, “we appear to be the only ones trying to determine serious neurodegenerative disorders from only one EEG channel.”

“What we provide is the difference between learning to dance in a dark room, versus learning to dance in front of the mirror,” he said.

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Top 10 Parkinson’s Stories of 2019

Top 10 stories on Parkinson's

Parkinson’s News Today keeps you up-to-date with research into Parkinson’s disease as it emerges. We brought you daily coverage of experiments into the basic biology of Parkinson’s, results of clinical and pre-clinical trials, and key findings from Parkinson’s research around the globe.

We look forward to bringing more such news to those with Parkinson’s, their family, friends and caregivers throughout 2020.

Here are our 10 most-read stories of 2019, with a short summary of what makes each one relevant to the Parkinson’s community.

No. 10 – “Active Form of Vitamin B12 Found to Prevent Neurodegeneration in Study of Animal Models

A study found that an active form of the vitamin B12 called AdoCbl can ease the effects of dopamine loss that occurs in Parkinson’s disease. Using cell lines and several animal models, researchers showed that by reducing LRRK2 enzyme activity, AdoCbl limits the death of dopamine-producing nerve cells, thereby preventing the appearance of symptoms associated with neurodegeneration. Overactivity of LRRK2 is linked to the development of a hereditary form of Parkinson’s.  AdoCbl is already an FDA-approved compound, and “could be used as a basis to develop new therapies to combat hereditary Parkinson’s associated with pathogenic variants of the LRRK2 enzyme,” according to Iban Ubarretxena, director of the Biofisika Institute and a study co-author.

No. 9 – “Onstryv Now Approved for Parkinson’s Patients in Canada

Canadian Parkinson’s disease patients now have access to Onstryv (safinamide), also known as Xadago. Onstryv increases the amount of active dopamine in the brain by both preventing the enzyme that breaks dopamine down from doing so, and by blocking that enzyme from entering cells. Other available treatments cause debilitating fluctuations between normal motor function (called “on episodes”) and poorer motor function (“off periods”) as their effects ebb and flow. Four placebo-controlled Phase 3 trials showed that the combination of Onstryv and levodopa led to more “on” and fewer “off” periods, and improved motor function in patients. “The approval of [Onstryv] in Canada is a step forward for patients who need new treatment options for Parkinson’s disease,” said Roberto Tascione, CEO of Zambon, one of the companies involved in commercializing this medication.

Xadago was approved by the U.S. Food and Drug Administration in March 2017 to improve motor function in Parkinson’s patients who experience “off periods” while on treatment with levodopa and/or Lodosyn (carbidopa).

No. 8 – “Plant Antioxidant Seen to Aid Mitochondria and Ease Motor Problems in Early Parkinson’s Study

A pre-clinical study conducted in China showed that alpha-arbutin, an antioxidant found in plants such as the blueberry, might restore mitochondrial function in nerve cells and ease the motor disabilities associated with Parkinson’s disease. Treatment with alpha-arbutin partially restored mitochondrial function in nerve cells undergoing oxidative stress (mitochondria act as a cell’s power house). It also restored these cells’ ability to remove toxic waste products. Feeding alpha-arbutin to flies carrying a mutated gene known to trigger Parkinson’s significantly eased several Parkinson’s-like symptoms. “Naturally derived-antioxidants might serve as a new class of therapeutic options for [Parkinson’s disease],” the researchers wrote.

No. 7 – “Stem Cell Transplants Could Significantly Improve Parkinson’s Treatment, Study Suggests

Replacing damaged cells in Parkinson’s disease with dopamine-producing stem cells could ease motor symptoms and reduce or eliminate the need for pharmaceutical medicines. As current disease therapies lose their efficacy over time, stem cell therapy might “revolutionize” Parkinson’s treatment, its researchers said. “A single surgery could potentially provide a transplant that would last throughout a patient’s lifespan, reducing or altogether avoiding the need for dopamine-based medications,” said Claire Henchcliffe MD, PhD, and Malin Parmar, PhD, co-authors of a study on the benefits of stem cell therapy. However, “there are several biological, practical, and commercial hurdles that need circumventing for this to become a routine therapy,” according to the editors of the Journal of Parkinson’s Disease.

No. 6 – “Bacteria in Gut Can Promote Parkinson’s by Altering Brain’s Immune Reactions, Study Says

A study found evidence of interaction between the brain and the gut in Parkinson’s, in which Gram-negative bacterial infections in the gut trigger an immune response that damages nerve cells. Gut microorganisms are known to communicate with the central nervous system, and studies suggest that harmful proteins related to Parkinson’s may spread to the brain from the gut. Scientists at the Université de Montréal showed that Gram-negative bacteria, particularly those related to gut infections, triggered an immune response in cells taken from mice. They then showed that mice bred without the PINK1 gene (making them resistant to Parkinson’s-like symptoms), when infected with these bacteria, displayed an immune response that led to such symptoms. Mutations in the PINK1 gene cause damage to the mitochondria in brain cells, and are linked to early onset hereditary Parkinson’s. The work provides evidence that intestinal infection acts as a triggering event in Parkinson’s, and highlighted the relevance of a gut-brain connection in this disease.

No. 5 – “Next 20 Years Expected to Bring ‘Message of Hope’ to Parkinson’s Patients, Review Study Finds

By reviewing the past 20 years of research into Parkinson’s disease, two scientists see a strong potential for breakthroughs in how this disease is approached over the next 20 years. The review cited developments in better animal models, greater understanding of molecular mechanisms and risk factors, and advances in available and potential therapies as reasons for hope. Among highlights of many advances listed are: 1) the adaptation of existing medicines used in other diseases to treat Parkinson’s (drug repurposing); 2) targeting non-motor features such as cognition, speech and balance difficulties that often precede motor symptoms; 3) the use of nanoparticles to block the formation of toxic alpha-synuclein clusters; and, 4) emerging evidence of a link between harmful gut bacteria and brain inflammation. The review also stressed the importance of future trials to test combination therapies.

No. 4 – “Physical Activity, Coffee, Moderate Alcohol Consumption Protect Against Disease Progression, Study Reports

Good news for lovers of sports, caffeine, and happy hours — all of these things, in moderation, may help slow the onset of symptoms of Parkinson’s disease. Although how exactly these lifestyle factors affect disease progression remains poorly understood, they correlate strongly with better patient outcomes. Conversely, smoking, heavy drinking and no consumption of alcohol at all were linked to considerably worse outcomes. The study, published in the journal Movement Disorders, needs to be replicated to strengthen the usefulness of its findings. Nonetheless, the work “suggests that multiple lifestyle factors potentially modify the rate of symptom progression,” its researchers wrote.

No. 3 – “Dietary Supplement Eases Parkinson’s Symptoms, Improves Dopamine Function, Study Shows

The antioxidant dietary supplement N-acetyl-cysteine (NAC) may improve dopamine function and ease Parkinson’s disease symptoms, according to one study. The body uses NAC to produce an antioxidant called glutathione (GSH), which it uses to prevent the oxidative stress that leads to cell death. Damage due to oxidative stress within dopamine-producing neurons is a key clinical feature of Parkinson’s. A trial (NCT02445651), conducted by researchers at Thomas Jefferson University in Philadelphia, showed that NAC supplementation significantly eased both motor and non-motor symptoms among 42 Parkinson’s patients (21 men and 21 women). These results need to be confirmed in larger and placebo-controlled studies, but offer an encouraging start to a potential low-cost therapy.

No. 2 – “Low Vitamin D Levels Linked to Added Falls, More Sleep Problems, Depression, Study Shows

Low levels of vitamin D were associated with more falls, and greater problems with insomnia, anxiety, and depression in people with Parkinson’s disease, according to a study by Chinese researchers. Vitamin D deficiency has often been seen in people with Parkinson’s, but its relationship to the disease remains controversial. This study, by researchers at the Second Affiliated Hospital of Soochow University and Soochow University, is one of the few to measure both motor and non-motor outcomes. By conducting detailed clinical evaluations in 182 Parkinson’s patients, as well as 185 healthy controls, the group found that low levels of vitamin D were more common in Parkinson’s patients than in healthy people, and that vitamin D supplements may ease the disease’s non‐motor symptoms.

No. 1 – “Oral Magnesium Compound Able to Reach Brain Seen to Slow Motor Decline, Neuronal Loss in Early Study

Our year’s most-read story was of an early stage study reporting that a type of oral magnesium could enter the brain and ease motor symptoms and nerve cell loss in a mouse model of Parkinson’s disease. Mice given magnesium-L-threonate, which can cross the blood-brain barrier (a semipermeable membrane that protects the brain from the outside environment) reduced the loss of dopamine-producing neurons, slowed the decline in motor function, and limited the oxidative stress that is associated with Parkinson’s. It is important to note that while magnesium-L-threonate provided therapeutic benefits, magnesium sulfate — the first choice as a clinical magnesium supplement — did not. “[T]he combination of [magnesium] with an agent that promotes its transportation to the brain is essential for the neuroprotection of this element,” the study’s scientists wrote.

***

At Parkinson’s News Today we hope these stories and our reporting throughout 2020 help to better inform and improve the lives of everyone affected by Parkinson’s.

We wish all our readers a happy 2020.

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Things Lost and Things Gained

Have you ever heard someone say that having Parkinson’s can be blamed for much and many a thing? I have. And why not blame our woes on this disease? It’s taken much and many a thing from us. Things we, at one time in our lives, had full control over. Things about which we had some say. 

Parkinson’s disease (and other various diseases some people don’t know ‘what to do with’) can be blamed for from the loss of things physical, to the loss of things emotional. For troubles encountered in the financial realm, to the loss of things we must struggle with in the mental. It can be responsible for the loss of relationships, to the loss of joy and happiness we once cherished and held dear.

Things lost.

Broken marriages.

Irritability.

Pain and fears without names.

Can this disease also be blamed for the loneliness you feel, standing deep within a crowd? Are we able to blame tears we cannot control or screaming we cannot contain on something we cannot see – this thing we call a ‘disease’? I say – yes.

In its clutches we can feel as if we are being tossed about within and then turned from the  inside to out.

It often seems as if all we do is done the wrong way. The masked look on our face is constantly being misunderstood. There are things we can’t say and there are things we cannot do. We would if we could but no more are they ours to accomplish on our own. 

Our legs won’t get us where we want or need to go – fast or safe enough. Our fingers will not move our pen across pages we yearn to fill.

Can we really blame Parkinson’s for all that garbage and pain? I’d like to believe that’s a choice we do have, to blame it all on a disease that steals and destroys, leaving us powerless and literally, without much of a voice of our own.

I don’t know why a select group – a band of brave warriors and/or a flock of faithful friends – have been chosen to ‘endure for a cure’. I do know that it is only by sticking together that we will make it through.

In the gamut of things gained, we step back and wonder, what is it that we have reaped through pain and suffering, if anything?

Things gained

‘Pay it forward’ was a common phrase a while back, the idea being if someone did something kind for you, you would hopefully pay the kindness forward to someone else. Think about that in the realm of Parkinson’s disease and things gained. 

In no way do I mean pay pain and suffering toward someone else! Instead, pay forward what we have learned from this disease. The encouragement, the wisdom, and the knowledge that we can offer to others. Those who are not as far along as we.

It is a kindness we all can share and share in, in spite of what we have lost. 

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Phase 2 Study to Evaluate Possible Oral Treatment for Mild Cognitive Impairment in Parkinson’s

cognitive impairment study

Aptinyx will soon open a Phase 2 clinical study of NYX-458, a potential oral treatment of mild cognitive impairment (MCI) associated with Parkinson’s disease (PD).

Although the main features of Parkinson’s involve difficulties with mobility and motor function, many patients also experience non-motor symptoms that include cognitive problems, for which few options exist.

Parkinson’s is a progressive disease of the nervous system, but “more than half of all people suffering from the disease are also afflicted by cognitive symptoms,” C. Warren Olanow, MD, a professor emeritus in the Departments of Neurology and Neuroscience at the Mount Sinai School of Medicine, and a Parkinson’s expert, said in a press release.

These cognitive symptoms include impaired thought processes and memory, resulting in a form of dementia. Many researchers believe that these symptoms are caused by changes in the function of a molecule called the N-methyl-D-aspartate (NMDA) receptor.

These receptors are involved in the communication between nerve cells and help regulate synaptic plasticity, which is the ability of synapses — the junctions between two nerve cells that allow them to communicate — to form strong connections and to reduce ones that are no longer needed. In this way, we form stable memories of important events, while allowing less vital memories to fade.

NYX-458 is a small molecule compound that controls the activity of the NMDA receptor.

The Phase 2 trial (NCT04148391) is a randomized, placebo-controlled study. Its goal is to determine the safe dosing and potential cognitive benefits of NYX-458.

Up to 135 trial patients, ages 50 to 80, will receive daily oral doses of 10 mg, 30 mg, or 100 mg of the investigative medication, or a placebo capsule, over a 12-week period. NYX-458’s efficacy will be measured by how it affects patients’ memory, attention, executive function, visuospatial deficits, and quality of life.

The trial is not yet recruiting. Current enrollment information can be found here.

Addressing NMDA receptor dysfunction would mark an important therapeutic advance. “Indeed,” said Olanow, “no therapy has been approved for the treatment of MCI [mild cognitive impairment] in PD, which remains a substantial unmet need.”

Aptinyx previously reported that NYX-458 successfully reversed cognitive deficits in a non-human primate model of Parkinson’s disease. NYX-458 significantly increased attention, improved cognitive flexibility, and enhanced working memory as quickly as two hours after the administration of a single oral dose. Those effects were maintained for up to three weeks. No major safety or tolerability issues were observed.

Earlier this year, the company also reported positive Phase 1 safety results. The study included 62 healthy volunteers were given single and repeat doses of NYX-458 at multiple levels to determine the optimal dose for future Phase 2 studies.

“We are excited about the potential for NYX-458 to alleviate the cognitive impairment associated with Parkinson’s disease,” said Norbert Riedel, Ph.D., president and CEO of Aptinyx.

The company expects to report topline trial results in the second half of 2021.

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Panic Attacks Can Go Hand-in-Hand with Parkinson’s Disease

panic attacks

Twice in the past month I have had what I am calling panic (anxiety) attacks, which are something I had never experienced before. I had shortness of breath and my heart was beating much faster than normal. Since the only activity I was involved in at the time was trying to go to sleep, it concerned me. It scared me enough that I told my husband about it the following day.

I consulted Dr. Google and here’s what I found:

A study showed that panic attacks in Parkinson’s disease could possibly be a long-term complication of levodopa therapy. The keyword here is “possibly,” which isn’t definitive enough for me, plus the study is from 1993. I skipped that one and continued my search.

Dr. Google led me to the Parkinson’s Foundation, which stated, “Anxiety is a common non-motor symptom of PD. It is important to note that anxiety is not simply a reaction to the diagnosis of Parkinson’s, but is instead a part of the disease itself, caused by changes in the brain chemistry of the brain.”

It went on to say that, “Anxiety (or panic) attacks usually start suddenly with a sense of severe physical and emotional distress. Individuals may feel as if they cannot breathe or are having a heart attack. They may feel they are experiencing a medical emergency. These episodes usually last a few minutes to an hour, particularly when associated with ‘off’ periods, though they can last for longer periods of time.” 

Several different sources agree that some of the symptoms of a panic attack can be trouble sleeping, heart palpitations, hyperventilating, uncontrollable worry, chest pain, dizziness, tunnel vision, and hot or cold flashes.

Bingo. They hit that nail on the head.

The list goes on and it can be hard to diagnose what is happening, as the symptoms mimic other possibilities of what could be going on. 

When I identified what I believed to be the culprit (a panic attack), I made a note to bring it up at my upcoming appointment with my neurologist. Until then, I decided to rely on the hope and faith I had within me. I forced myself to breathe normally and drew deep upon that faith. The attack finally subsided and I was able to quit worrying about getting the porch fixed and the gate repaired and the shower installed and the sink replaced and …

Here I go again … 

This time I’m diving deep into that faith before the panic kicks in. 

***

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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Pressing Through and Pushing On with Parkinson’s Disease

Parkinson's, blessings

Just when I was going to have a pity party, I received this question from a reader: “What’s your secret for dealing with the everyday?” Her question was in response to an article I wrote. Her frustration had to do with her not being able to embrace the “gift” that Parkinson’s disease seems to offer. So, my pity party was postponed and I was called to practice what I preach.

Life with Parkinson’s isn’t a gift, per se, as it seems to take away more than it gives. It’s hard to embrace a gift that seems to be taking from us all things good and replacing the good with what sometimes seems to be a curse. But “gifts,” both large and small, can be found from having a life with Parkinson’s.

For example, we obviously don’t consider it a gift when this disease takes our ability to walk with ease and forces us to watch every step we take. But did you ever consider it a gift that six friends, who you otherwise wouldn’t see regularly, make it a priority to take turns walking with you?

I call that a blessing. A gift. A breeding ground for magic to happen.

I visited a friend in the hospital. As I approached the front entry doors, I spotted my reflection in the glass. ‘They” say people with Parkinson’s can tend to resemble a drunkard when they walk. Seeing my reflection in the window, I understood why. I wanted to cry. I had every reason to, but I didn’t. Instead, I pushed through, pressed on. I walked in the entrance and took the elevator up two floors to hopefully cheer up and encourage my friend who is in worse shape than me. 

So, what is my secret to dealing with the everyday? Just that. I push through and press on. 

I see my reflection and know that I must move forward and not give up. I might not like what I see or how I feel but I must remember that’s not me in the glass. The reflection is Parkinson’s. Inside of that reflection is the me you can’t see. 

How do I push through and press on? 

I’m not joking around when I tell you to try watching cotton fluff bounce down to the ground from the trees like freshly blown bubbles offered from a child’s lips. The sunshine, serving as a backdrop behind the fluff, gives the illusion of minuscule angels dancing before me in slow motion. 

There is real magic — gifts and blessings — in those pieces of fluff. My grandson calls the fluff “summer snow” as it is released from the trees in the heat of the day. I more often than not call it a nuisance. But when I look for the magic that fluff holds inside, I can’t help but see it as summer snow as well and want to chase white magic alongside him. 

You may wonder what that has to do with pushing through and pressing on. In order to push through and press on, you must find the blessings, the gifts, the magic of this life, whether living with Parkinson’s or not. If you don’t, you will find yourself drowning in grief and despair, welcoming apathy to your very front door. And, apathy is not a good house guest.

I notice my symptoms progressing. I can’t stand the drooling and whether I like it or not, it’s increasing. My speech is also slurring more. 

It is through these progressions I must press on and push through even harder. 

I can’t let progression defeat me. So it is at times like this I look for magic. Blessings. Gifts.

When is the last time you went outside and noticed what flies, sings, smells, or floats along with the summer breezes? The last time you saw magic happen right in front of you? When did you last feel like giving in but instead pressed on and pushed through? Slam the door on the unwanted and press on and push through and you will begin to see the blessings, the gifts, and the magic in each new day.

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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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Speaking to the Heart: A Story of Connection and a Meaningful Life

Sherri Journeying Through Parkinson's

I have been reading a book by disability advocate Joni Eareckson Tada. One part in particular had me mulling over it for days.

In her book, Joni tells a story about a time when her team went to Uganda to deliver wheelchairs to those in need. A man named Semu was brought by his wife to a small house in the village where they lived. Years before, Semu had fallen from a tree, sustaining fractures to his leg and hip, and suffering a severe brain injury. He sat on the floor, still and silent. No one spoke to him or acknowledged his presence — not even his wife.

While Semu and his wife waited for his wheelchair, Dana, a member of Joni’s team, began to tell Semu’s wife that it’s vital to continue communicating with someone who has had a brain injury and to not give up. 

Dana asked Semu to do a few simple things, such as squeezing his hand. He spoke to Semu, who continued to sit there without responding. He told him how much he was loved by God, his family, and friends. Suddenly, Semu had an “awakening.” He came to life in front of the crowd, laughing, smiling, and speaking directly to Dana. The two men wept and hugged each other.

At a moment in time, a man sat frozen to his wife, friends, and family. Then someone took the time to enter that frozen world and thaw it with the power of touch and personal connection. 

The story made me wonder about how we look at people with advanced Parkinson’s and other diseases and believe we see an empty shell because that person no longer speaks or acts the way they used to. How often do we mistake a life that is still full for one that lacks purpose because we see movement in a person’s body that we believe hinders their usefulness?

Everyone needs a “Dana” in their life — someone who is not afraid to bend down and speak to the heart of another who is hurting. Someone who will take the time to show them that they are loved and that their life has value and meaning. Someone who knows that although words remain unspoken, walking is nonexistent, and blank stares are mistaken for someone who has checked out of life, we are still very much alive.

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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.

The post Speaking to the Heart: A Story of Connection and a Meaningful Life appeared first on Parkinson’s News Today.

Conquering Fear Turns Us from Worriers to Warriors

warriors

Sherri Journeying Through

When I think of a warrior, I think of Mel Gibson and the role he played in the movie “Braveheart.” Gibson played the main character, Sir William Wallace, a Scottish knight. He was a warrior for his homeland Scotland, fighting for freedom against the English. 

Although much of the historical telling of the story by Hollywood is inaccurate (go figure), it still makes for a good example of what a warrior is: bold and brave. They don’t show fear.

Fear will try to worm its way into your calm, your peace, your countenance.

The best way to add fuel to the fire of fear is to worry about what you can’t change. Worry promotes fear, and who needs or wants that? 

A college professor I once had made the statement, “We don’t fear the dark. We fear the things we can’t see in the dark.” And so it is with Parkinson’s disease. We don’t necessarily fear the disease itself, but we can continually worry about what the disease may be doing to us. Do we really want to dwell on what could go wrong with having Parkinson’s disease? How it will/does affect us and our relationships? Do we want to dwell on how it’s affecting our finances? Our overall well-being? I would venture to say we have other things we’d rather dwell on.

Someone once said that worry robs today of its joy.

Isn’t that the truth! When I start to think about things that are better left un-thought, my mood can plummet. When I begin to take a downward spiral with worry and let fear have its heyday, I do whatever it takes to get out of my head. I get up and I get out. I get busy. 

What if Corrie Ten Boom, a woman who hid Jews in her home during World War II, allowed worry to consume her? What if Joni Earekson Tada, a woman paralyzed in a diving accident in her teens who founded a ministry that reaches out to those with disabilities, had spent her life in her wheelchair, worrying what was to become of her? And what if Desmond Doss, who is credited with saving 75 soldiers during one of the bloodiest battles of WWII, allowed worry to consume him? 

What if you allow worry to consume you?

God may have an assignment he’s honing you for. Get out and get going. Wouldn’t you rather be a warrior than a worrier?

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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.

The post Conquering Fear Turns Us from Worriers to Warriors appeared first on Parkinson’s News Today.

Discovery of New Brain Region Could Have Implications for Neurodegenerative Disorders

new brain region

The recent discovery of a previously unknown region of the human brain could have significant implications for neurodegenerative disorders affecting motor skills, such as Parkinson’s disease and motor neuron diseases including amyotrophic lateral sclerosis and spinal muscular atrophy

Neuroscientist George Paxinos’ discovery of the endorestiform nucleus, which functions to control fine motor skills, is detailed in his new book, “Human Brainstem: Cytoarchitecture, Chemoarchitecture, Myeloarchitecture,” and published in Elsevier.

An increasingly detailed map of the brain and spinal cord has been essential to most major discoveries in neuroscience in the past century. In the book, Paxinos and colleagues from Neuroscience Research Australia (NeuRA) present the first detailed atlas of the human brainstem — the back section of the brain that is continuous with the spinal cord — in over twenty years.

“I am a brain cartographer and the maps I do are of the normal, the canonical brain, and other scientists can compare their pathological tissue if they study Alzheimer’s disease, Parkinson’s, epilepsy tissue obtained from post-mortems against the canonical brain,” Paxinos said.

The researchers took advantage of new imaging technology that allows for the brain to be studied in live, conscious individuals. Although the imaging resolution has room for improvement, researchers still had the advantage of imaging the brain in its natural location as opposed to removing it and processing it for imaging post-mortem, which distorts the results and, ultimately, identification of brain regions. This new, live imaging technology allowed researchers to identify structures and more accurately map them to specific areas in the brain.

When constructing a new map of the human brainstem, the team identified a region formerly unknown to science. They found that the endorestiform nucleus is in a part of the brain called the restiform body or inferior cerebellar peduncle, which connects the cerebellum — the back of the brain — to the underlying brainstem. The restiform body is known to regulate fine motor skills by integrating information about a person’s surroundings and movements.

Previously, the region was not identified as its own nucleus — a group of nerve cells located deep inside the brain and brainstem that have similar connections and functions. The researchers now say it is a different area from its surroundings.

An initial observation of the region was made years ago in patients who underwent a therapeutic anterolateral cordotomy — a surgical procedure that deactivates selected pain-conducting pathways in the spinal cord to alleviate pain.

This procedure is commonly performed on patients experiencing severe pain because of cancer or other  diseases. It was observed that some of the pathways that were severed in the spinal cord because of the procedure connected to this sub-region in the restiform body in the brainstem.

The brain region has not been found in several monkeys that are very closely related to humans, making it possibly exclusive to humans and possibly holding clues as to what makes us unique.

“One intriguing thing about this endorestiform nucleus is that it seems to be present only in the human; we have not been able to detect it in the rhesus monkey or the marmoset that we have studied,” Paxinos said. “I can only guess about its function but given the part of the brain where it’s found, the highway that connects the spinal cord to the cerebellum, it might be involved in fine motor control that humans are so good at. It would be hard to imagine a chimpanzee playing the guitar dexterously even if it liked to make music.”

Sample images and 3D animations of the brain can be seen here and Paxinos can be seen explaining his discovery here.

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