PD

Teen Scientist Working on Parkinson’s Treatment

In North Texas, bright young minds are hard at work and one in particular may be on the verge of shaping the future for patients with Parkinson’s disease.

At 14 years old, it seems there’s nothing Anushka Sridhar hasn’t done.

“Outside of school, I play volleyball, basketball, I’m a third-degree black belt in taekwondo. I do an Indian cultural dance and I’m also part of Destination Imagination,” the Plano ISD 8th grader said.

Sridhar is also a budding scientist, who won the grand prize in her school’s science fair.

She created a device designed to lessen the tremors experienced by Parkinson’s patients.

“My great aunt passed away. With her tremors though, she had a lot of difficulties just with daily activity,” Sridhar said. “So that sparked an idea for me to try and create like a wrist band that could mitigate the tremors.”

For two months, she dove head first into researching Parkinson’s disease, a neurological disorder that causes hand tremors and imbalance.

She learned about how vibration therapy can help the motor skills of Parkinson’s patients.

The idea is the vibrations fool the brain and distract it from the physical sensation of tremors so that patients have an easier time writing.

It’s a well-known theory that even the goliaths of the industry, like Microsoft, are looking into.

Sridhar used common materials, like velcro and simple curcuits to create a prototype wristband. She reached out to the Dallas Area Parkinsonism Society, or DAPS, for test subjects willing to strap on her homemade wristband.

“They were excited that a young person would take that kind iof interest. You can’t help but be impressed when you hear her,” DAPS Executive Director Mike Miles said.

The partnership blossomed, and Sridhar connected with people five times her age. Each one seem impressed with the device, that not only worked, but gave them hope!

“I’m sure she will study that and improve on it and one day, we will have a device that we could put on and write normally,” said 81-year-old Ryan Wagner of Plano.

Sridhar said she planned to expand her research and build more prototypes of her wristband.

She hopes to one day affect the lives of every Parkinson’s patient.

She now advances to the Plano ISD district fair and the Dallas regional science fair.

Article from NBCDFW.

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Your Parkinson’s tremor printed in 3D

Parkinson’s Life talk to two of the creatives behind ‘Printed by Parkinson’s’, a Berlin-based art collection that saw 3D printers ‘affected’ with the data of six people with Parkinson’s in order to replicate their individual tremors – and visualise the everyday difficulties facing people with the condition


A team of creatives from Berlin, Germany, are combining art, technology and Parkinson’s in an innovative new fundraising project.

As part of the project, organisers asked six people living with Parkinson’s to choose an object that they found difficult to use due to their symptoms. The team then used kinetic and neurological data to create a 3D printer which mirrored their personal Parkinson’s symptoms, and printed each object in bronze – creating art that reflects their struggles with the condition.

We spoke to Reiner Gorissen and Marlon von Franquemont, the two creatives behind the fundraiser.

Hello, thanks for talking to Parkinson’s Life. What’s your story and your connection to Parkinson’s?

Hi, I’m Reinier Gorissen and this is Marlon von Franquemont. We’re creatives who work at INNOCEAN Berlin. We produce advertising campaigns for global brands, but also try to find projects that could help important causes.

We started the ‘Printed by Parkinson’s’ project after a colleague had two family members diagnosed with Parkinson’s. We realised that, like most people, we didn’t know anything about the condition – and we wanted to change that.

How did you come up for the concept of ‘Printed by Parkinson’s’?

R.G: While planning, we learned about the Parkinson’s research projects conducted by Charité, one of Europe’s biggest university hospitals, and decided to put our minds together to support them.

We wanted to create a concept that would educate people about Parkinson’s and support the research at the same time. When we brought the ‘Printed by Parkinson’s’ idea to Charité, they instantly embraced it.

Who worked on this project with you? 

M.V.F: The project brings the medical, tech and art world together. It was overwhelming to see how all involved parties embraced our initiative and worked long hours to make it happen.

Charité involved their patients by recording their data, production company MediaMonks was responsible for the 3D printing and the project’s website and creative content agency Cosmopola produced the photography and film material. As the initiator of the project, INNOCEAN Berlin created all marketing-related assets and organised the exhibition.

How was the data used to create the 3D models?

R.G: First, we recorded the kinetic and neurological data of the participants using electroencephalography (EEG) systems – which monitor electrical activity in the brain – and accelerometers at Charité.

The production company MediaMonks then turned the data into algorithms, devising one for each participant.

After a long period of testing, we managed to 3D print the objects selected by each patient while the printer was affected by their personal Parkinson’s data.

Why did you settle on 3D printing over more traditional art forms?

R.G: Parkinson’s is a very complex condition and most people don’t know how significant the impact of it is on people’s lives. By using technology and art, we were able to break through the clutter and also engage younger audiences. The art objects instantly give people an idea how Parkinson’s affects lives – and invite people to learn the stories behind the objects.

Why did you think using seemingly simple, everyday objects would make an impact on those outside of the Parkinson’s community?

M.V.F: We believed that the collection would be most impactful if each object portrayed a personal story. That’s why we asked participants to name an object that represented a job, hobby or activity that was affected by the onset of their Parkinson’s.

Most people outside the Parkinson’s community don’t know much about the condition. They often think it only affects older people and don’t know that Parkinson’s has more than 40 symptoms. The ‘Printed by Parkinson’s’ collection visualises the daily struggles that people have with simple tasks like using a pen or a camera.

How was the collection received by the general public, the participants involved – and by people with Parkinson’s? 

M.V.F: The response has been great from all directions. The collection was shared on medical, tech and art platforms all around the world and was broadcasted on multiple TV channels in several different languages.

We also received great feedback from those who took part. On top of that, others showed interest in sharing their story – and we hope it inspires more people to be open about their condition as people must keep sharing their story to make the public aware of the condition.

How much money has been raised so far from sales?

R.G: We have received multiple bids, but unfortunately can’t reveal the digits. Let’s just say we’re very proud of the offers – all of which will go towards research at Charité.

Do you have any plans for further Parkinson’s-related art projects or campaigns?

M.V.F: Definitely. In fact, there are some projects on the way already. Hopefully we’ll be able to share them with you soon.

Printed by Parkinsons's

Reiner Gorissen (left) and Marlon von Franquemont (right), the creatives behind ‘Printed by Parkinson’s’.

This collection was exhibited at gallery Alte Münze, in Berlin for one week in July 2019. For more information on the project, please visit the ‘Printed by Parkinson’s’ website.
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“Poor Me”? Or “Lucky Me!”

Laurie Prochnow is a recruiter and a business owner in Wausau. She was diagnosed with Parkinson’s 6 years ago, and she launched a PD Support Group in Wausau in early 2019.

Together with her company, Management Recruiters, Laurie put together a couple of great videos sharing some of the lessons she has learned over the last several years of having Parkinson’s.

 

 

 

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Why some Parkinson’s patients develop harmful addictive behaviours

A QIMR Berghofer study has discovered how the medications given to people with Parkinson’s disease cause some patients to develop addictive behaviours such as problem gambling, binge eating, hypersexuality and excessive shopping.

Medicines that increase dopamine levels in the brain are the cornerstone of treatment for symptoms of Parkinson’s disease. This neurodegenerative disorder damages nerve cells that produce dopamine in the deep structures of the brain.

QIMR Berghofer Medical Research Institute lead researcher and St Andrews Hospital neuropsychiatrist Dr. Phil Mosley said while dopamine replacement therapy was effective for most people diagnosed with Parkinson’s disease, about one in six people treated with the medication developed impulse-control behaviours, such as gambling.

“We found people who developed these addictive behaviours differed in the way their  interacted with dopamine-containing medication, which gave rise to the impulsive behaviour,” Dr. Mosley said.

“None of these people had a history of addictive behaviours before diagnosis and only developed them after they began treatment with dopamine-replacement medications.

“There is currently no way of predicting which individuals are at risk of these terrible side-effects.”

More than 80,000 Australians are living with Parkinson’s disease, with most people diagnosed after the age of 65, although about 20 percent are of working age, according to Parkinson’s Australia.

Dr. Mosley said the study recruited 57 people with Parkinson’s disease from St Andrews War Memorial Hospital in Brisbane, in collaboration with neurologist Professor Peter Silburn.

“We used an advanced method of brain imaging, called diffusion MRI, to reconstruct the connections between different regions of the brain, akin to developing an individualised brain “wiring” diagram for each person in the study,” Dr. Mosley said.

“We asked our participants to gamble in a virtual casino, which gave us a readout of impulsive and risk-taking behaviour in real time.

“By combining data from brain imaging, behaviour in the virtual casino, and the effect of dopamine-replacement medication, we were able to identify people who were susceptible to impulse-control behaviours.

“More broadly, we found a clear link between the strength of the connections in the brain, within circuits that we think are crucial for making decisions and suppressing impulses, and impulsive behaviour, even in people without clinically-significant impulse-control behaviours.”

Dr. Mosley said the study findings indicated that brain imaging and computer-based testing could be used in the future to determine which individuals were at risk of developing these harmful behaviours when treated with dopamine-replacement drugs.

“These disorders are often a second blow to people and their families living with Parkinson’s disease. Some individuals suffer financial problems or relationship breakdowns because of these harmful behaviours,” he said.

“We could offer targeted education to at-risk individuals, or adapt their treatment regimen to minimise the potential harms from these therapies.”

The study’s co-author Professor Michael Breakspear said the findings could also have implications for other psychiatric conditions that are marked by impulsivity, such as ADHD, alcohol and drug addiction.

Article from MedicalXpress.

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‘It is not hopeless’: Parkinson’s disease doesn’t stop Austin duo from making popular art

One day, Verna Earl Hamilton Grice discovered she could not walk up the driveway.

That was the first sign.

Later, she felt tremors on one side of her body.

Ten years ago, she was diagnosed with Parkinson’s disease.

That’s when she stopped painting.

“I got tired,” Verna, 88, says. “I didn’t do it for 10 years. It’s labor intensive. Susan kept on.”

That would be her daughter Susan Grice, 63, who shares Verna’s zeal for making art.

“She focused instead on trying to figure out the illness,” Susan says of her mother. “She went to support groups such as Power for Parkinson’s. They promote exercise.”

Verna: “I was just hanging on.”

Verna, a native of Lake Charles, La., nevertheless made significant progress. A return to painting has helped.

Susan: “Her doctor says she is in the top 1 percent of his patients.”

“I walk really well,” Verna says with a laugh. “If you walk well, they think you are OK. I have my ups and downs. My ups are longer than they were, because I am so busy painting these days. Just looking at the paint seems to help.”

In their airy home studio, Verna and Susan paint together on wood. They seal the paintings so they can be hung outdoors. Their subjects include images inspired by Old Masters, original ideas, nature and abstract arrangements.

As in the past, the mother-and-daughter team enjoys a steady demand for their output, which could be called garden art. They recently staged an exhibition that attracted more than 60 guests to their house and garden in Westover Hills.

“It makes me feel better, I noticed,” Verna says. “How did I start again? My dentist was going out of his way to be sweet to me — I hate going to the dentist — so I brought him one of my pictures. He loved the picture. He had to have two more. They hang in the dentist’s office for others to enjoy.”

“She came home and said, ‘Oh no. I’ve got to get painting. We’re back in business,’” Susan says. “Since then, we couldn’t stop.”

The Grice method

Susan and Verna make 24-by-24-inch paintings on 3/4-inch exterior plywood.

“It’s done directly on the wood,” Verna says. “We prime it and then seal it several times after painting.”

“It’s like making signs,” Susan says. “They last for years and years. We don’t tell the exact formula. It’s a secret. A carpenter friend makes the frames of cedar.”

Mother and daughter come to the project with similar artistic sensibilities.

Susan, former director of psychiatric nursing at Seton Shoal Creek, studied at the Glassell School of Art, the teaching institute of Houston’s Museum of Fine Arts.

As for Verna, she was artistic as a child in Louisiana. She painted a bit in high school. She followed that inclination to Mexico City, where she studied Spanish and art in 1948 and ’49.

“Diego Rivera and Frida Kahlo were very much around,” Verna says. “I remember seeing Diego’s mural at a hotel there.”

A child of the Depression, Verna did not expect much more from life than hard work.

Her father, Vernon Earl Hamilton, took whatever jobs he could land.

“I never knew what to say when they asked, ‘What does your Daddy do?’” Verna recalls. “There were so many things, since it was the Depression. I know he owned slot machines on the side. He put them in little bars around Lake Charles. He sold one to let me go to Mexico.”

Her mother, Ruth McLaughlin Grice, worked as a bookkeeper for an ice company.

“She went to work to get me braces,” Verna says. “Guess what? She was working till she retired. I never got my braces.”

Verna has one sister, Helen Ruth Garman, who at age 84 is a Ride Austin contract driver.

Even Verna’s Mexican adventure came with a practical work goal.

“I was hoping to get a job using my Spanish,” she says, “but couldn’t find one. So I worked for a construction company for a while, then went to Houston. That’s where I met my husband, a young lawyer named Harrison Marion Grice.”

The newlyweds settled down in southeastern Houston and raised three children: Susan, 63, Charles, 61, and Laurel, 54.

Verna did not stop working.

“I sold real estate for a while,” she says. “I was a bilingual secretary in Spain after my husband died and also a legal secretary. I worked for the National Treasury Employees Union and lived in Washington for eight years. I was marching with the union when the older President Bush tried to freeze employees’ salaries to pay down the national debt. I was arrested and handcuffed, stuffed into a paddy wagon and taken to jail. The one thing I remember is that the toilet in the jail is right out in the middle of the room. That’s punishment enough.”

The family moved to Austin’s Northwest Hills in Austin in 1975. She retired in 1996 as the assistant to her union’s president and purchased the Westover Hills home in 2001.

Why paint?

“I just got in the mood,” Verna says of her first adult painting 15 years ago. “I got bored with looking out at those bare fences around the patio. They needed some color. That’s when we started making groups of paintings.”

Susan started painting and selling art right after Verna started in 2004. They’ve sold more than 100 paintings, many of them at places that also sell architectural pieces or items for the garden.

Verna finds that Parkinson’s is only a partial barrier.

“With just about any disability, you can still paint,” Verna says. “If you find someone to help on some things, you can still enjoy the magic of painting.”

“You let me draw straight lines for you sometimes,” Susan interjects. “With her permission and very specific instructions, she will direct me to draw a line. It allows her to still paint, which is fantastic.”

Both Grices promote Power for Parkinson’s, the nonprofit support group that offers free exercise, dance and singing classes at locations in Austin, Round Rock, West Lake Hills and Lakeway.

“I started going when there were just a few things we could do there, and now there are hundreds of activities,” Verna says. “I swim laps. I play bocce ball. I boxed. I decided my body is not made for boxing. Age 88 is too old to dive into the mat.”

Verna does not paint to inspire others, but she’s gratified it might do so.

“I just want people to know that, at 88, you can still have some fun and enjoy life,” Verna says. “A lot of people with Parkinson’s think that this is the end. But you can slow it down. You realize how important your brain is. Don’t get me wrong. It’s a bear of a disease. But it is not hopeless. There are lots of things you can do. Do it, try it — and get creative with it.”

Click HERE to view the artwork. Article from Austin360.com.

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Innovative gene therapy trial for Parkinsons disease

In people affected by Parkinson’s disease (PD), parts of the brain become progressively damaged over many years resulting in motor symptoms including tremor, rigidity and bradykinesia (slowness of movement).

This deterioration is caused by a loss of dopamine-producing neurons (nerve cells) in an area of the brain called the substantia nigra. In turn, this leads to a reduction in the availability of dopamine, which acts as a neurotransmitter (a chemical released by neurons) to send signals to other neurons, and has a role in controlling movement and balance.

Gene therapy works by introducing genes via an inactivated viral vector (virus) to specific cells providing them with the genetic instructions needed to change their fate.

AXO-Lenti-PD, also known as OXB-102, is a next generation gene therapy and is being tested for the first time by UCL and UCLH researchers at the National Institute for Health Research (NIHR) UCLH Clinical Research Facility, Leonard Wolfson Experimental Neurology Centre, Queen Square.

The therapy has been developed by Oxford BioMedica and Axovant Sciences Ltd for the treatment of PD, and contains three genes that are responsible for producing dopamine, delivered in a lentiviral vector.

Axo-Lenti-PD will be administered into the part of the brain, called the striatum, which is where dopamine is normally released by cells projecting from the substantia nigra. It is a well-defined structure and easily surgically accessible making gene targeting of cells in the striatum a feasible approach with minimal disruption of other brain regions.

The therapeutic rationale for AXO-Lenti-PD treatment of PD is to provide dopamine replacement to the dopamine-depleted striatum of PD patients by gene transfer of the three critical enzymes in the dopamine biosynthesis pathway.

UCLH neurology consultant Professor Thomas Foltynie said: “Genes that increase the production of dopamine could help alleviate the symptoms of Parkinson’s disease, potentially with fewer side effects than traditional drug treatments, by targeting only the areas of the brain that are lacking in dopamine.

“It is envisaged that AXO-Lenti-PD will contribute to a continual supply of dopamine within the striatum and sustain stimulation of post-synaptic dopamine receptors in the absence of disabling side effects that currently complicate dopamine replacement therapy given by oral medication.”

How the trial will work

The trial will assess up to 30 patients with PD from UCLH, the National Hospital for Neurology and Neurosurgery (NHNN), London, Cambridge University Hospital and the Henri Mondor Hospital, Paris.

Patients in Part A of the trial will receive one of three doses of AXO-Lenti-PD, and patients in Part B will receive the optimal dose determined in Part A or an imitation surgical procedure with no treatment.

Patients will have regular assessments after surgery.

The trial’s Chief Investigator is Prof Stéphane Palfi from the Henri Mondor Hospital in Paris.

Professor Foltynie added: “The study will investigate the potential benefit of this treatment to patients with Parkinson’s disease by looking at its impact on symptoms, such as tremor, rigidity, and bradykinesia, and seeing if they improve.

“While we do not yet know if it is effective, it is hoped this therapy will provide patient benefit for many, many years following a single treatment.”

The first patient on the trial was administered the gene therapy by UCL researchers and UCLH clinicians earlier this month, at the National Hospital for Neurology & Neurosurgery, using the NIHR UCLH Clinical Research Facility, Leonard Wolfson Experimental Neurology Centre, Queen Square.

Approval for the multi-centre trial has been sanctioned by the NHS Health Research Authority and follows an earlier study of a first-generation gene therapy called ProSavin®, developed by Oxford BioMedica.

Patient case study

The first patient to be recruited to the trial is a woman in her 50s, who was diagnosed with levodopa-responsive PD more than 10 years ago. She underwent successful surgical treatment to deliver the gene therapy on Wednesday October 17, 2018.

Article from University College London Hospitals.

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Scientists identify early signs of Parkinson’s disease years before symptoms develop

Scientists at King’s College London have identified the earliest signs of Parkinson’s disease in the brain up to 20 years before patients present with any symptoms. The findings challenge what had so far been understood about the disease and could lead to new screening tools for identifying high-risk patients and new treatment approaches, although larger studies and more affordable scans would be needed first.

Brain scans of high-risk patients showed a loss of serotonin function before movement disorders developed. The serotonin system regulates mood, sleep and movement.

Parkinson’s is the second most common neurological condition and affects about 145,000 people in the UK. The main symptoms are movement problems such as shaking and tremors, cognitive disorders, depression, and difficulty sleeping, but the disease is known to establish itself in the brain long before symptoms appear and a diagnosis is made.

Studying the early stages of the disease to find treatment approaches with the potential to slow progression represents a huge challenge to researchers, who have so far linked the condition to reduced dopamine levels in the brain. Although no cure for the disease exists, current treatments are focused on controlling symptoms by restoring dopamine levels.

However, the current study shows that changes in the neurotransmitter serotonin occur very early in Parkinson’s disease. These changes could serve as an important early warning signal that a person is at risk.

Serotonin transporter proteins are the first to change in Parkinson’s disease

For the study, Politis and colleagues scanned the brains of 14 people in their 20s and 30s who have a rare genetic disorder that means they are almost certain to develop Parkinson’s once they reach their late forties or fifties.

Parkinson’s disease is characterized by a build-up of the protein α-synuclein in the brain. While the cause of this protein accumulation is usually unclear, genetic mutations are known to cause the problem in a minority of cases.

The subjects, who were all from remote villages in Greece and Italy, have rare autosomal dominant point mutations A53T in the α-synuclein (SNCA) gene. The SNCA mutation originates in villages located in the northern Peloponnese in Greece and is also found in people who moved to nearby areas in Italy.

Half the subjects had already been diagnosed with Parkinson’s, while the other half had not yet displayed any symptoms, making the group perfect for analyzing how the disease progresses.

“Given the known neurochemical changes in the serotonergic system and their association with symptoms of Parkinson’s disease, we hypothesised that carriers of the A53T SNCA mutation might show abnormalities in the serotonergic neurotransmitter system before the diagnosis of Parkinson’s disease, and that this pathology might be associated with measures of Parkinson’s burden,” write the team in the journal Lancet Neurology.

After flying the 14 participants to London for brain imaging and clinical assessment, Politis and team compared the subjects’ data with 65 patients with Parkinson’s disease of a non-genetic cause and 25 healthy individuals.

They found that the people who were destined to develop Parkinson’s had sharply reduced levels of serotonin, which controls many brain functions including mood, cognition, movement, wellbeing and even appetite.

The serotonin system started to malfunction in the subjects with Parkinson’s long before symptoms such as movement problems started to appear and before abnormalities in the dopamine system arose.

“Our findings provide evidence that molecular imaging of serotonin transporters could be used to visualize premotor pathology of Parkinson’s disease in vivo,” writes the team.

Further research ‘could change countless lives’

The brain scans took the form of PET scans, which are difficult to perform and expensive and the researchers say that further work to develop the technique is needed to make the imaging method simpler to carry out and more affordable for use as a screening tool.

Professor of medical imaging at University College London, Derek Hill, says that although the study provides valuable insights, it also has some limitations.

He points out that the results may not scale up to larger studies and that the highly specialised imaging method is limited to a very small number of research centers so could not yet be used to help diagnose patients or evaluate candidate treatments in large studies.

However, the research does suggest that trying to treat Parkinson’s at the earliest possible disease stage is likely to be the best approach to preventing the rising number of people whose lives are destroyed by this hideous disease, says Hill.

Research manager at the charity Parkinson’s UK, Dr Beckie Port, concludes: “Further research is needed to fully understand the importance of this discovery – but if it is able to unlock a tool to measure and monitor how Parkinson’s develops, it could change countless lives.”

Article from News Medical Life Sciences.

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A Wearable Device Is Changing the Way Clinicians Manage PD

A recently published study in Functional Neurology suggests that using data from an FDA-cleared watch-like device called the Personal KinetiGraph (PKG) provides an objective and more effective approach to assessing motor fluctuations in patients with Parkinson’s disease (PD) compared with patient-reported motor diaries.

“Motor fluctuations, including ‘wearing-off’ and dyskinesia, are associated with increased disease severity and disability, and PD patients experience decreased quality of life as their response to medical therapy becomes less predictable,” said Echo Tan, MD, a neurologist at Cedars-Sinai Medical Center and lead author on the publication. “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. 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 the routine management of Parkinson’s patients and enable more objective assessments in clinical trials of Parkinson’s therapies, she said.

Tan told MD+DI the study revealed that the PKG system (developed by Global Kinetics) and the algorithms for calculating a fluctuator score can differentiate between non-dyskinetic and dyskinetic patients. The fluctuator score does not, however, have the sensitivity to detect mild wearing off because no prior study divided patients into more than a binary system. On the plus side, Tan said the PKG also can distinguish between exercise and dyskinesia on the graphical data obtained.

The fact that the fluctuator score was not sensitive enough to detect mild wearing off did come as a surprise to the investigators, but the fluctuator score did show progressively increasing average score range between the four groups, Tan said.

During a BIOMEDevice Boston 2019 panel discussion, Teresa Prego, vice president of marketing and marketing development at the Melbourne, Australia-based company, said the integration of consumer wearables with wearables for chronic disease management has changed the delivery of care and where that care is delivered.

“If I look at the PKG-Watch, for example, in Australia where there are great geographic distances between people with Parkinson’s and a care provider. They are using this remotely,” Prego said. “So you’ll go and see your clinician, have an assessment, but then for the next year, there’s really no need to go into the clinic. You can make care decisions remotely. They’re wearing the vehicles to get that information to the clinician.”

“This implies that it is better at detecting moderate to severe fluctuations,” she said.

Most importantly, the device has changed the way Tan and her colleagues assess and monitor patients with Parkinson’s disease.

“The PKG system can provide additional information about fluctuations that a clinic visit and history can not reveal,” she said. “This is particularly useful for those patients who are not able to provide a good history – such as those with a language barrier or cognitive impairment. It can show true objective levodopa responsiveness, motor fluctuations, daytime somnolence, and medication compliance. “It can be an important triage mechanism for a referral to a movement disorder specialist, or for an advanced surgical therapy referral. It has provided another objective source of information for our clinicians in deciding how to change medical management. Patients also report that the medication reminder function on the device helps them with medication compliance, thereby also enhancing their motor function as well.”

Parkinson’s disease patients typically respond well to medical therapy in the first few years of their disease, but about 40% of the patient population develops fluctuations of response to levodopa and dyskinesia after four to six years of treatment. That percentage jumps to 70% after long-term treatment of nine years or more, according to Global Kinetics. The company said it developed the PKG system to address the lack of objective measurement tools for movement disorders and quantifies the kinematics of Parkinson’s symptoms, including tremor, bradykinesia, and dyskinesia. An algorithm translates the raw data from these assessments into a fluctuation score that can distinguish between patients with motor fluctuations and those without.

The study investigators correlated PKG fluctuator scores (FS) with clinical motor fluctuator profiles in a case-controlled cohort of the study that included 60 patients attending the Movement Disorders Clinic at Cedars-Sinai Medical Center in Los Angeles, CA. Of the 60 patients in the study, six had incomplete data and were excluded from analyses, the company noted.

Here are some key findings from the 54 subjects who completed a six-day PKG trial and completed a standardized motor diary:

  • Based on Wearing Off Questionnaire (WOQ9) and Movement Disorders Society-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) Part IV scores patients were categorized based on the presence and extent of fluctuations, as follows:
    • Non-fluctuators (NF), N = 14
    • Early fluctuators (EF), N = 15
    • Moderate fluctuators (MF), N = 15
    • Troublesome fluctuators (TF), N = 10
  • The groups varied significantly in terms of disease duration, which was progressively longer with increasing severity of clinical fluctuation and PD dopamine medication measured as levodopa equivalent dose (LED).
  • LED was more than double in patients with troublesome fluctuations compared to those without fluctuations, while patients in the groups including early and moderate fluctuators reported equivalent daily dosages.
  • MDS-UPDRS score increased significantly with the severity of fluctuations, with the highest scores recorded in those with troublesome fluctuations.
  • Patients had a higher tendency to return the PKG than the motor diary (88% vs. 65%).
  • 50% of the patients in the troublesome fluctuator group were excluded due to incorrect diary completion.
  • Compliance with the motor diary improved with decreasing severity of fluctuations.
  • PKG fluctuation score significantly differentiated EF and TF (p = 0.01), as well as dyskinetic and non-dyskinetic subjects (p < 0.005). In contrast, motor diaries could not distinguish the four study groups on the basis of average OFF time, while average time with dyskinesia distinguished NF and MF but did not distinguish among all four groups.
  • PKG identified high levels of dyskinesia in patients who denied having dyskinesia.

The study authors conclude that the data support the use of the PKG fluctuation score as an objective tool for capturing and quantifying motor fluctuations as a mechanism for triaging PD patients. They also note that the PKG transcends language and cognitive barriers and time constraints in the clinic, which are challenges to obtaining accurate patient symptoms to effectively adjust PD treatment.

The main barrier to adoption for products like these is reimbursement, Prego noted.

“Capturing this data and utilizing the advent of these consumer technologies to help manage chronic disease, it’s pretty interesting,” she said. “I think that our traditional ways of reimbursing for medical care have not quite caught up to where the development of consumer wearables has taken us.”

Article from MD+DI.

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Linda Ronstadt on the sound of her life

This article from LA Times focuses on Linda Ronstadt, who was diagnosed with supranuclear palsy, a variant of Parkinson disease, in 2013.

READ THE ARTICLE HERE.

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Parkinson’s differences in women and men

There is growing evidence that Parkinson’s disease (PD) affects women and men differently. In this insightful review, published in the Journal of Parkinson’s Disease, scientists present the most recent knowledge about these sex-related differences and highlight the significance of estrogens, which play an important role in the sex differences in PD.

PD is a slowly progressive disorder that affects movement, muscle control, and balance. It is the second most common age-related, neurodegenerative disorder, affecting about 3% of the population by the age of 65 and up to 5% of individuals over 85 years of age. The risk of developing PD is twice as high in men than women, but women experience a more rapid disease progression and a lower survival rate.

“It is becoming increasingly evident that PD differs in women and men,” explained lead author Fabio Blandini, MD, Scientific Director of the IRCCS Mondino Foundation, National Institute of Neurology, Pavia, Italy. “Recent research findings suggest that biological sex also impacts on disease risk factors and, potentially, on molecular mechanisms involved in the pathogenesis of PD.”

This review meticulously examines the most recent knowledge concerning differences between women and men with PD including:

  • Motor and non-motor symptoms
  • Quality of life
  • Genetic and environmental risk factors
  • Pharmacological therapy of motor and non-motor symptoms
  • Surgical procedures
  • PD and steroids
  • Impact of biological sex on pathophysiology

Recent research has shown that women and men have distinctive motor and non-motor symptoms as their PD progresses. Motor symptoms emerge later in women: tremor is a common first presenting symptom associated with recurrent falls and more severe pain syndromes with specific characteristics such as reduced rigidity, a higher propensity to develop postural instability, and elevated risk for levodopa-related motor complications. Conversely, male PD patients show more serious postural problems and have worse general cognitive abilities: freezing of gait—the most disabling motor complication of PD—develops later in men; however, men have a higher risk of developing camptocormia (abnormal severe forward flexion of the trunk when standing or walking). An ongoing clinical trial is evaluating the prevalence in PD and the biological sex impact on other postural abnormalities, such as Pisa syndrome (a reversible lateral bending of the trunk with a tendency to lean to one side), antecollis (dystonia of the neck resulting in excessive forward flexion), scoliosis (a sideways curvature of the spine), and deformities related to hands and/or toes.

Non-motor symptoms have been the subject of a study of over 950 PD patients, which concluded that symptoms such as fatigue, depression, restless legs, constipation, pain, loss of taste or smell, weight change and excessive sweating are more common and severe in women. Other studies have demonstrated that male PD patients have worse general cognitive abilities and male sex is the primary predictive factor for mild cognitive impairment and its more rapid progression in the severe stage of the disease. A diagnosis of PD with dementia has a greater impact on life expectancy of women than men; in addition, women show distinctive symptoms as well as differences in the response to pharmacological therapies and deep brain stimulation, and in their personal evaluation of the quality of life compared to men.

The authors note that the distinctive clinical features as well as the contribution of different risk factors support the idea that PD development might involve distinct pathogenetic mechanisms (or the same mechanism but in a different way) in women and men. They highlight the significance of estrogens, which play an important role in the sex differences in PD, providing disease protection as demonstrated by the similar incidence of the disease in men and post-menopausal women.

“Sex hormones act throughout the entire brain of both males and females and sex differences are now highlighted in brain regions and functions not previously considered as subjected to such differences, opening the way to a better understanding of sex-related behavior and functions,” added Silvia Cerri, Ph.D., head of the Laboratory of Cellular and Molecular Neurobiology of the IRCCS Mondino Foundation and first author of the article. She commented: “Neuroinflammation is an important piece of the pathogenic puzzle of PD. Current evidence suggests that the physiological role exerted by microglial and astrocytic cells could become compromised during aging, thus contributing to PD onset and progression. Since estrogens have anti-inflammatory properties, their actions throughout the lifespan could partially account for sex-related risk and manifestation of PD.”

By drawing attention to sex-related differences and disparities in PD, Dr. Blandini and colleagues hope this will further encourage the scientific community and policy makers to foster the development of tailored interventions and the design of innovative programs—for example in care practices—that meet the distinct requirements of women and men with PD. “Women diagnosed with PD are a sizable portion of the PD population, but their specific needs are still partially overlooked. The differences between women and men strongly suggest the need for a personalized (sex-related) therapy in PD,” concluded Dr. Blandini and Dr. Cerri.

Article from MedicalXpress.

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