Education

Improving Fine Motor Skills

A loss of fine motor skills is a common symptom of neurologic conditions. Try these creative ways to improve dexterity or adapt to changes.

Eight years ago, Schuetz’s creative passions were threatened when he was diagnosed with Parkinson’s disease and began experiencing worsening tremors in his right hand. Eventually his writing diminished, as did the beautiful lettering he once was so proud of. The loss was a wake-up call, says the 66-year-old resident of Timonium, MD.

“I have a lot to lose if I let this disease take away my hand dexterity,” says Schuetz. “Not only the sense of feeling productive, but a bit of my identity, too. It’s important to keep my hand skills up to par.”

Decreased Dexterity

Parkinson’s disease, with its tremors, freezing, and stiffness, is not the only neurologic condition that can cause hand and finger difficulties like Schuetz’s. For people with essential tremor, the shaking worsens with activity. Those with multiple sclerosis (MS) often experience lack of coordination and hand weakness. Dystonia, a movement disorder that causes uncontrollable muscle contractions, can result in twisted posture and cramping, which can affect hand dexterity. Neuropathies may cause numbness and weakness. And about eight out of 10 stroke survivors experience weakness on one side of the body, including the hand, according to a 2014 study in the Journal of Neuroengineering and Rehabilitation.

For people with MS, trouble with dexterity can happen at any stage of the disease, says Michael J. Olek, DO, associate professor of neurology at the Touro University Nevada College of Osteopathic Medicine in Henderson, NV. “Patients may have trouble with handwriting, using keyboards, and preparing meals.”

Dearth of Studies

Research on how to improve fine motor skills affected by neurologic disorders is minimal, especially compared with research on aerobic exercise, says Lisa M. Shulman, MD, FAAN, distinguished professor in Parkinson’s disease and movement disorders at the University of Maryland School of Medicine.

Patients often worry more about improving their walking and balance and less about improving dexterity, Dr. Shulman says. “I think that’s because there are many workarounds for weak hands.” For example, people with poor fine motor skills can buy clothing with fewer buttons and zippers and shoes with easy fasteners, she says. They can also pick up prepared meals so they don’t have to cook.

Still, it’s important to focus on dexterity, Dr. Shulman says. She and patients like Schuetz offer the following advice for retaining dexterity or adjusting to its loss.

8 Ways To Address Dexterity

  1. Talk to your doctor. Patients are more likely to tell their doctors about problems with walking than loss of dexterity, says Dr. Shulman. “What I’ve observed is that patients who exercise are almost always using their larger muscles, especially in the lower body, when using a treadmill or stationary bike, which preserves lower body function. Meanwhile, their fine motor dexterity disproportionately worsens.” She encourages all patients to inform their neurologists and health care team about any loss of fine motor skills and ask for help in improving and maintaining function.
  2. Work with an occupational therapist. Physical therapy and speech therapy are more commonly part of a treatment plan than occupational therapy, says Dr. Shulman. “It’s important that neurologists encourage more patients to engage in occupational therapy.” It helps enhance independence, productivity, and safety in all activities related to personal care, leisure, and employment, says Kathy Zackowski, PhD, OTR, senior director of patient management, care, and rehabilitation research at the National Multiple Sclerosis Society.
  3. Consider writing aids. For many people, the simple task of signing a check or restaurant bill or writing a to-do list becomes problematic. To make writing easier, use a pen grip or fatter pens, advises Rick Schrader, 64, a former software salesman in Herndon, VA, who has hereditary ATTR amyloidosis, a rare condition that affects his nerves and hand mobility. His hands get cold easily and lose sensation, but he still balances his business checkbooks every Saturday. “I don’t write fast anymore, but if I take my time I can still write clearly.”
  4.  Write mindfully. Writing quickly and unthinkingly may result in small, cramped handwriting and tightness in your hand, said Dr. Zackowski. “Try not to rush your writing, and switch to print instead of cursive. Using lined paper provides a guide and forces you to use bigger letters, which helps keep writing more legible.” She adds that using a computer keyboard may be easier if you don’t mind typing. And for those who are used to typing but now find it difficult, many keyboard modifications are available, including a key guard that helps users press the key they want without accidentally pressing other keys.
  5. Use adaptive devices. For assistance when getting dressed, you can use reaching aids, button hooks, zipper pulls, Velcro shoe fasteners, or shoe horns, says Dr. Zackowski. To help with cooking and navigating the kitchen, she recommends tools such as nonskid placemats, utensils with oversized or angled handles, and rocking T knives, which cut food using a rocking motion. In the bathroom, Dr. Zackowski suggests getting a shower chair and a nonskid bath mat and installing grab bars. For grooming, Schrader uses an electric toothbrush and razor. Others may want to install a hands-free hairdryer on the wall or vanity.
  6. Try different utensils. Poor dexterity can make eating with a fork difficult, says Kathy Villella, who has primary progressive MS. Whenever she eats in a restaurant, Villella orders food such as ravioli that is easy to pick up with a spoon. John Martin, 82, of Independence, MO, who was diagnosed with essential tremor in 2008, uses weighted spoons and knives and eats with his left hand because his right hand is more affected by tremors.
  7. Keep fit. Staying active is the key to maintaining function and dexterity, says Carolee J. Winstein, PhD, PT, director of the motor behavior and neurorehabilitation laboratory at the University of Southern California in Los Angeles. “Work with your doctor and therapists to find a fitness and exercise plan that will help you maintain function in your hands and fingers.” Schuetz practices yoga, which he says helps him maintain strength and dexterity in his arms and hands.
  8. Improve fine motor skills. To keep his fingers flexible and loose, Schuetz kneads therapy putty, a thick Play-Doh-like paste that varies in pliability from easy to hard. In addition to practicing yoga and kneading therapy putty, Schuetz continues to draw and paint. He says gripping the pencils and paintbrushes strengthens his fingers.

Schuetz also makes rings out of spoons, a hobby he started in the 1970s. Today, it provides another way to stay physically and creatively engaged. He hopes to move beyond rings into small bronze sculptures of yoga poses. “I want to bring together my two main interests—art and yoga—and keep my hands busy and happy.”

Article from Brain & Life Magazine.

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WPC Launches Dual Language Webinar Series

The World Parkinson Coalition is headed to Spain for the 6th World Parkinson Congress from June 7-10, 2022.  In order to help prepare delegates who live with Parkinson’s or care for someone with Parkinson’s, they are launching the first ever WPC dual language webinar series in English and Spanish. Each topic covered is a topic that people with Parkinson’s have identified in survey data that they want or need more information to better understand and to be able to make more informed decisions around treatment options. 

We want our community members to live their best possible lives, but also to be able to articulately speak about Parkinson’s. The more they know about this disease, the better they can explain their needs to their healthcare team and better educate their families and communities. 

Each set of webinars will use bi-lingual Parkinson’s experts. These experts will present and take questions in two webinars back to back. The first webinar will be in English. Once this session ends, they will take a short break and then will give the same talk in Spanish. We believe that it’s important for people to hear about their disease and treatment options in their native language directly from the experts.

 View the schedule HERE.

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Coronavirus and treatment for Parkinson’s

What do we know about the relationship between coronavirus and Parkinson’s?

Joaquim Ferreira, neurologist, Portugal: There is still scarce information regarding many clinical aspects of this infection and its potential short- and long-term complications. We know that the majority of people with Parkinson’s are elderly, and age is a risk factor for the more severe forms of Covid-19. On the other hand, we recognise that patients might be affected indirectly by the lockdown physical restrictions, the psychological impacts and the compromised healthcare.

Miriam Parry, senior Parkinson’s Disease nurse specialist, UK: We do know that people with Parkinson’s are more prone to pneumonia and infections. Parkinson’s can cause respiratory issues for some people – if you have lived with Parkinson’s for a long time, you are more likely to have breathing and respiratory difficulties. This is why people with Parkinson’s are described as being at greater risk of severe illness if they get coronavirus. As such, their caregivers need to take precautions.

Rick Helmich, neurologist, the Netherlands: We know very little, but knowledge is rapidly increasing. Parkinson patients who develop Covid-19 seem to suffer from the same symptoms as other people and to approximately the same degree. However, patients who get sick from coronavirus may suffer from a worsening of their Parkinson symptoms. This is a well-known finding that also occurs when Parkinson patients develop other non-coronavirus infections. The current pandemic also has effects on Parkinson patients that are not so visible, such as increased stress levels and less physical exercise due to the social isolation measures.

How has the coronavirus crisis affected how you and your colleagues carry out your roles, and interact with patients?

Emma Edwards, Parkinson’s specialist nurse, UK: The coronavirus crisis has meant that our face-to-face appointments were stopped with immediate effect. We knew that telehealth technology was due to be implemented in our work area over a planned period of about seven months. When the crisis happened, that roll out took about seven days! In May, I started to see some patients again in their homes. Those allocated for this type of review were people that were running into problems with their Parkinson’s that we couldn’t resolve over the phone or via the virtual clinics.

Helmich: For a few months, I have been working mainly from home, and all my contacts with patients were through video-conferencing and by phone. It took some time to adjust, but I am actually very happy with how it turned out now. It is amazing how much you can see and discuss via a good video connection. On the other hand, more subtle things are better seen in real life, so I am happy that we are allowed to see more patients at our hospital in the next weeks.

Ferreira: The major implications of visit cancellations for patients that were hospitalised, or doing rehabilitation programmes as inpatients, should also be mentioned. This situation forced all health professionals to be involved in facilitating communication and minimising the consequences of not seeing family and friends.

How has the coronavirus crisis affected access to treatment for people with Parkinson’s?

Helmich: This is a topic that many patients are worried about: access to health care. Many Parkinson patients are treated by a whole team of professionals, including a neurologist, a Parkinson nurse, a physical therapist, and sometimes a psychiatrist, speech therapist, or occupational therapist. Access to these health care providers has been restricted by the isolation and social distancing measures. Not all people have good access to internet, and not all treatments can be given through video conferencing. So, I believe that the care for Parkinson patients has certainly suffered from the coronavirus pandemic.

Ferreira: The coronavirus pandemic severely affected the follow-up of people with Parkinson’s disease. The regular consultations were cancelled, making it more difficult or impossible the access to physicians and other health professionals. Pharmacological prescriptions were more difficult to obtain. Sessions of physiotherapy, speech therapy and other therapeutic interventions were cancelled, and physical activity and exercise was highly reduced for many patients. Many deep brain surgeries were deferred, and patients included in research studies and clinical trials saw their consultations being moved to phone contacts or videocalls.

Edwards: Face-to-face sessions such as our Parkinson’s exercise groups, have also been postponed but luckily the staff that ran those groups produced a brilliant DVD of the common exercises they undertook in class. These were distributed out to homes at the beginning of the outbreak and were warmly received by many people with Parkinson’s.

What actions should people with Parkinson’s take at the moment?

Ferreira: The most important recommendation for people with Parkinson’s and their close friends and family is to follow the general public health recommendations that apply to the elderly population. At the current stage of the pandemic, when governments are lowering the confinement measures, the most important message is to alert everybody that this pandemic is not over and the general measures that are being recommended for the general population should be followed strictly in the next months.

Parry: When you leave the house, for any reason, you should avoid busy spaces and keep a distance of around two meters from people you do not live with, while wearing a face mask. You should also continue to follow good hygiene practices, including handwashing, not sharing crockery and cutlery, wiping down surfaces, and not entering other people’s homes. You can ask your local pharmacist to deliver medication to your home address or ask family members or friends to help.

Edwards: I would really advocate for people, if they can, to exercise. It has proven benefits not just for physical health in Parkinson’s but for promoting good mental health. I’ve been really impressed with the exercise classes available online to people with Parkinson’s whilst the group classes have been postponed.

What should people with Parkinson’s do if they have hospital and GP appointments during this period?

Parry: If you’re in the UK, please call the GP’s practice and ask for further information and direction pending the reasons for the appointments. The GP practice will be able to advice you whether it is urgent or offer you a phone or video consultation. Routine hospital appointments have now changed to virtual clinics using phone and video link consultations.

Ferreira: During this crisis, health institutions in Portugal have changed their procedures in order to implement safety circuits for those who will need to attend their routine visits or need to go to the hospital in an urgent situation.

Edwards: I would imagine as we come out of the lockdown, clinical outpatient appointments in the UK will look very different to what people are used to. Certainly, in our area, personal protective equipment will be worn by staff and visiting patients are encouraged to wear face masks. If people with Parkinson’s need advice on managing their condition and are not sure when their next review will be, they should contact their local Parkinson’s service and ask for help. Be proactive!

How can people with Parkinson’s look after their mental wellbeing?

Ferreira: All health professionals that follow patients with Parkinson’s recognise that this has been a difficult time, not just for the patients but for all around them. The most important thing for the community is strengthening support and continuing care, keeping the links between patients, their families, caregivers and health professionals.

Helmich: This is different for everyone. Some of my patients even like certain aspects about the current situation, such as a reduction in workload, deadlines, or social obligations. In general, I think it is good to try to stay in touch with your loved ones. Find a new structure for your day that works for you and develop new exercise routines. There are many online events available for Parkinson patients, such as online dancing or singing classes. So, it might be worthwhile to have a look online to see what is out there or ask someone to help you do so. Don’t be afraid to speak about your worries or fears.

Edwards: Being able to connect with others has been a challenge during the lockdown, but as restrictions are eased, I really encourage people to meet others again, albeit in a safe way. For many during coronavirus, that has been via online forums like Zoom or having a socially distanced chat over the garden fence to family and friends. I’m also a massive advocate for mindfulness. It’s a way to be fully present, having an awareness of where we are and what we are doing and feeling, without being overwhelmed by what’s going on around us.

Parry: It is normal and expected to feel a range of emotions during this pandemic including fear, increased anxiety, anger and sadness. There is guidance on looking after mental wellbeing during this time from mental health charity Mind, as well as support on the Parkinson’s UK and Parkinson’s Foundation websites.

What is the advice for those living with a vulnerable person?

Parry: Visitors and people who provide care for those with Parkinson’s should protect them and reduce their risk by staying at home as much as possible. They should work from home, if they can, and limit contact with other people.

Ferreira: It is a good principle to assume that everybody who we are in contact with may be infected, even if they don’t present any suspected symptoms. No one can be sure that they are not infected or do not have a risk of infecting others. This is even more relevant for health professionals, caregivers, family members and those that have close contact with vulnerable populations.

Edwards: I knew from the moment I re-started my home visits that I had not fully been picking up the impact that the coronavirus and subsequent lockdown has had on care partners. It was harder to pick up the subtleties of care partner stress on the telephone or even on the telemedicine appointments. I’m certainly more mindful that we need to continue to address this area as digital medicine becomes more accessible for people with Parkinson’s and potentially less contact is had with partners or carers during these interactions.

Helmich: Be aware that vulnerable people are sometimes less able to cope with new or threatening situations. Be patient if your loved ones are anxious, worried, or experience a worsening of their symptoms.

Do you think the coronavirus crisis will have a long-term impact on people with Parkinson’s?

Ferreira: The limitations induced by the Covid-19 pandemic are here to stay and we need to be prepared to adapt for the next months.

Parry: The Covid-19 pandemic could potentially have a long-term impact on the physical and mental health of people with Parkinson’s, and many studies are currently taking place looking at the effect of this pandemic.

Edwards: I think lots of clinicians were hoping that we could eventually use technology in how we review our patients, and this crisis has pushed that to the forefront. I like being able to offer our patients a wider range of ways that they can access information and advice – from virtual clinics to wearing digital technology – but also being able to offer more traditional face-to-face home visits if needed.

Need to know

Emma Edwards: I’m a mental health nurse in the UK – however for the last 10 years I’ve worked as a Parkinson’s specialist nurse in the community. I had worked in a large rural area for many years, but more recently have moved to a post in a city. Due to the lockdown on clinical work environments, my dining room is currently my office!

Joaquim Ferreira: I am a neurologist mainly working in the field of Parkinson disease for the past 25 years. I am also professor of neurology and clinical pharmacology at the University of Lisbon, Portugal. More recently, I founded CNS, Campus Neurológico Sénior, which is a movement disorders centre focused on the multidisciplinary care and rehabilitation for Parkinson’s patients.

Miriam Parry: I work as senior Parkinson’s Disease nurse specialist (PDNS) at King’s College Hospital NHS, Parkinson’s Foundation Centre of Excellence in London, UK. My role is to provide a holistic approach to care and seamless service to people with Parkinson’s and their family and carers, providing ongoing support, educating and empowering patients to become experts in their condition. Above all, I aim to engage people with Parkinson’s with King’s rich research portfolio on offer, as without it we would not have the knowledge and the care pathways that we do.

Rick Helmich: I live in Nijmegen, the Netherlands and work as a neurologist and neuroscientist at the Radboud University Medical Centre. I specialise in Parkinson’s, and in my research at the Donders Institute, I use brain imaging to help understand symptoms and phenomena I see in my patients. Lately I’m intrigued by the effects of stress on patients with Parkinson’s, both the causes and the consequences.

Information from Parkinsonlife.eu.

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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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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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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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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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Parkinson’s and depression: it’s not all in your mind

Depression is a very real and debilitating condition that many Parkinson’s disease sufferers experience. ParkinsonsLife guest writer Dr Nicola Davies explores the causes of and treatments for depression and Parkinson’s.


It’s well-documented that people who have been diagnosed with a chronic illness such as Parkinson’s are at higher risk of developing depression as well. Indeed, it’s estimated that 50% of people diagnosed with Parkinson’s will experience depression.

As Suma Surendranath, professional engagement and education manager at Parkinson’s UK, says: “Parkinson’s is a long-term progressive condition for which there is currently no cure, therefore a diagnosis can be a psychological blow for a person and those around them as they may well be concerned about what the future might hold.”

The following scenario is a common experience among many newly diagnosed Parkinson’s sufferers. First there is confusion: ‘What does this mean?’, ‘What can I do?’, ‘How will this impact me?’ Then the shock comes as the reality of the disease sets in and the impact that it will have on the rest of your life is realised. The shock gives way to grief and depression. The feeling that your life has ended and your hopes and aspirations have been shattered is less time than it takes to make a cup of tea. As one person with Parkinson’s told us, “When I was diagnosed, I came home and cried. I thought it was the end of my life.”

“There is evidence that suggests depression is an early symptom of Parkinson’s”

However, receiving a diagnosis for Parkinson’s isn’t the only factor that can cause depression in people with this condition – the very course of the disease changes the brain chemistry that usually keeps depression at bay.

Surendranath says: “Depression may occur amongst people with Parkinson’s as a result of the condition as dopamine, the neurotransmitter that becomes depleted with Parkinson’s, is [also] involved in motivation and a sense of reward.”

Experiencing depression after receiving a diagnosis of Parkinson’s isn’t a sign of emotional weakness or a flaw in character. Depression is caused by an imbalance of chemicals in the brain, which is what Parkinson’s is all about: low levels of chemicals in the brain.

There is evidence that suggests depression is an early symptom of Parkinson’s. Despite this, people with Parkinson’s aren’t routinely tested for depression and therefore might not receive treatment for the condition.

It remains unclear whether the medications prescribed to reduce the physical symptoms of Parkinson’s contribute or worsen symptoms of depression. It is also unclear how Parkinson’s affects pre-existing depression or how medication prescribed for Parkinson’s impacts pre-existing depression.

Surendranath says: “While medication, in the form of anti-depressants, can be beneficial to people with Parkinson’s it is still important to ensure that there are no adverse effects from medications interacting with each other.”

Words of hope

Depression is treatable even if it co-exists with other conditions. Depression is also limited in duration. Often, finding the right mixture and combination of drug therapy can improve both the physical symptoms of Parkinson’s and the symptoms of depression. However, it is important to know that the treatment of Parkinson’s must be comprehensive and include both the physical as well as the emotional symptoms.

Reaching out can also ease the depressive symptoms associated with Parkinson’s. As one patient told us, “I started meeting other people with Parkinson’s and it helped all of us to talk to someone who had the same condition.” There are many physical and online communities where other people with Parkinson’s can meet up virtually, or in person, and share their experiences with others who are feeling the same and suffering from similar symptoms.

Most importantly, you have to set a goal in for your life. Unless you have something to aim for, or something that drives you to get up every morning and face the day fighting, you will find yourself drifting through life. It is best to accept that you have Parkinson’s and move on.


Dr Nicola Davies holds a Master’s and a PhD in Health Psychology. She is a member of the British Psychological Society and the Division of Health Psychology. Article from ParkinsonsLife.

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