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Coronavirus and treatment for Parkinson’s

July 1, 2020 Awareness, Education, Life

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.

Study: People skip Parkinson’s, Alzheimer’s meds as prices rise

March 1, 2020 Life, Research

Rising drug costs are hampering the care of patients with debilitating neurological disorders like Parkinson’s disease and Alzheimer’s, a new study finds.

Patients are less likely to fill necessary prescriptions as out-of-pocket costs increase, said senior researcher Dr. Brian Callaghan, a neurologist with the University of Michigan, in Ann Arbor.

“It’s a pretty predictable 5 percent to 10 percent drop for every $50 increase in cost,” Callaghan said.

For patients with Parkinson’s disease, not taking medications as prescribed can severely impact their quality of life, he noted.

“The Parkinson’s medicines are supposed to help make their tremors better, help them walk faster better. Theoretically, it could prevent falls and hospitalizations,” Callaghan said. “It’s not really preventing people from dying. It’s enabling people to live better and have better symptom control.”

Previous studies have shown that out-of-pocket drug costs are rising for neurologic medications, Callaghan said.

To see how these higher prices affect patient care, Callaghan and his colleagues singled out three neurologic diseases for which there are effective drugs available at a wide variety of prices:

Parkinson’s disease, where the drug pramipexole cost $35.90 for a 30-day supply in 2016, compared to $12.40 for the drug ropinirole.
Alzheimer’s disease, where a month’s supply of rivastigmine was $79.30, compared to $3.10 for the drug donepezil.
Peripheral neuropathy, where pregabalin cost $65.70 for a month compared to $8.40 for gabapentin.

The researchers used a private insurance claims database to track more than 80,000 patients’ prescriptions during a 15-year period, comparing how often they filled prescriptions with their out-of-pocket costs.

In 2015, the Alzheimer’s drug donepezil cost about $3 for a 30-day supply, and researchers found that people filled their prescriptions about 70 percent of the time. On the other hand, the drug rivastigmine cost about $100, and people filled those prescriptions only 45 percent of the time.

A $50 increase in out-of-pocket costs was associated with an overall 12 percent decrease in a patient’s access to Alzheimer’s medications, the researchers found.

The same pattern held for Parkinson’s patients and people with peripheral neuropathy, which causes numbness and pain, usually in the hands and feet.

“I am not surprised,” James Beck, chief scientific officer for the Parkinson’s Foundation, said of the study results. “The free Parkinson’s Foundation Helpline team hears similar stories from people with Parkinson’s disease every day. The cost of medications is a key factor in their budgets and everyday lives.”

The medication regimen for people with Parkinson’s is especially complex, “and the timing of multiple pills a day often taking into account meals is incredibly arduous,” Beck said. “Therefore, missing doses of medications will have the effect of a reduction in quality of life. People may not be able to move as well, sleep as well, or do the activities they enjoy as a result of missing their medications.”

Callaghan pointed out that medication adherence is probably even worse for patients with disorders like multiple sclerosis, where there are only a handful of medicines available and all are expensive.

Callaghan and Beck recommended that patients talk with their doctor and pharmacist if they’re struggling to pay for their medications. There could be cheaper drugs available that would work as effectively.

“For Parkinson’s disease, there are three types of medications that people often take as their first medication. The evidence suggests that starting with any of these medications leads to similar positive outcomes,” Beck said. “Therefore, people with Parkinson’s disease and their providers can work together to identify what might be the most affordable medication to start with in treating their Parkinson’s disease symptoms.”

The study was published online Feb. 19 in the journal Neurology.

Article from UPI.

Estrogen Therapy for Men? Maybe.

February 1, 2020 Research

Men are more likely to develop Parkinson’s disease (PD) than women, and the onset of PD in men happens at a younger age. However, women with PD have a higher mortality rate, and once they have Parkinson’s, progression is faster. Research suggests that women get the disease at later in life when compared to men, at least in part, due to the natural protection estrogen provides. There are studies that have demonstrated that hormone replacement therapy (HRT) can provide dopaminergic neuroprotection in both young and menopausal female mice.

Could the female sex hormone, estrogen, be a therapeutic approach for delaying or reducing PD symptoms for men?

Recently published in the Journal of Neuroscience, a study titled, “Female Sex and Brain-Selective Estrogen Benefit α-Synuclein Tetramerization and the PD-like Motor Syndrome in 3K Transgenic Mice” (Rajsombath, Nam, Ericsson, & Nuber, 2019) investigated this possible therapeutic neuroprotective effect.

Using mice called 3K that show motor and neural changes associated with PD, researchers injected male mice under the skin with the hormone therapy DHED. What makes DHED so special is that it was designed to only activate estrogen in the brain. This matters because estrogen therapy has been associated with an increase in cancer in other parts of the human body.

The motor performance and brain health of the 3K male and female mice were compared along with whether DHED affects the progression of PD-like symptoms in males. The motor evaluations included their ability to clasp, climb down a pole, gait (walk) and balance on an accelerating rotarod, which is a lot like lumberjack logrolling. There were also highly sophisticated tests to determine possible changes in the build-up or clearing of protein clumping in the brain, along with the decline or increase in the health of dopamine neurons.

Results

Like the sex differences found in people with PD, 3K male mice developed PD-like symptoms faster than female mice. Furthermore, male mice treated with DHED had:

Improved clasping abilities
Improved downclimbing
Improved gait
Improved balance
Better clearing of risky alpha-synuclein (protein clumps in the brain)
Healthier dopamine neurons

What Does This Mean?

This study focused on the 3K male mice and how they responded to the estrogen therapy, DHED. When the male mice were treated with the DHED, they showed improvements in all the motor functions tested. They also showed significant improvements in the brain, including healthier dopamine neurons and lower amounts of alpha-synuclein at risk for clumping. Remember, clumped alpha-synuclein becomes Lewy Bodies ― a hallmark of PD.

It is also important to note that the successful development of the 3K model itself – which duplicates many differences in male and female PD at motor, cellular and molecular levels – is a significant step forward in closing the gender gap in PD research. Having a model that helps unravel how the pathology differently affects the two sexes informs new avenues of research that could lead to the development of tailored medications and interventions to meet the distinct needs of men and women with PD.

Read the study HERE. This article from parkinson.org.

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

November 1, 2019 Awareness, Caregivers, Exercise, Life

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.

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

November 1, 2019 Education, Life, Research

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.

A Wearable Device Is Changing the Way Clinicians Manage PD

November 1, 2019 Education, Life, Research

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.

Developing a Biomarker for Parkinson Disease

June 1, 2019 Education, Research

Identifying, studying, and verifying a potential biomarker can be a lengthy affair. However, success often means clinicians have a new tool to better diagnose a condition like Parkinson disease and to diagnose the condition earlier in the disease progression.

A biomarker for Parkinson disease might mean that patients can begin receiving treatment before irreversible neurological damage occurs.

Sarah Hamm-Alvarez, PhD, Professor of Ophthalmology at the USC Roski Eye Institute at the Keck School of Medicine of USC, spoke with MD Magazine® about this biomarker research, which she presented at the 2019 Annual Meeting of the Association for Research in Vision and Ophthalmology (ARVO) in Vancouver, BC.

Hamm-Alvarez highlighted the collaborative nature of the project that has included colleagues from the neurology, pharmacy, and preventive medicine departments.

“Part of the passion for the project is driven by the clinical need that I sense from my neurology colleagues and their frustration that they don’t have better ways to diagnose patients at early disease states,” said Hamm-Alvarez.

In part 1 of the interview, Hamm-Alvarez introduced the study and the team’s reasons for investigating tears for a Parkinson biomarker. In part 2, she described the study methods and the differences they found in basal and reflex tears.

What’s the process for developing a biomarker?

First you start by establishing a correlation, which we have done. And right now what we’re doing is that we are actually recruiting patients with Parkinson’s disease that are at different times from disease diagnosis and this, we think, will reflect disease severity. So, what we’re trying to do is to see if the levels of oligomeric α-synuclein are correlated with time from disease diagnosis. So, we’re going to try to get a sense of the disease severity. We also are eventually planning to try to test this in patients without a diagnosis, as well as patients who exhibit symptoms that overlap with Parkinson’s disease, such as patients with atypical parkinsonian syndromes and patients with other neurological disorders, of course, to determine how specific this may be, and also whether this has predictive ability going forward if a patient is at an early stage of Parkinson’s disease.

How have various departments collaborated in this project?

This project is very much a team effort we have a whole team at the University of Southern California including colleagues in neurology and pharmacy and preventive medicine. We work very closely with Mark Liu in neurology, who is a neurologist, and who is very excited about the potential for applying this in his clinic. So, I think that part of the passion for the project is driven by the clinical need that I sense from my neurology colleagues and their frustration that they don’t have better ways to diagnose patients at early disease states.

Article from MD Magazine.

Parkinson’s Awareness Posterboards

May 1, 2019 Awareness, Community Outreach

April was Parkinson Awareness Month, and we were busy!

In addition to TV, RADIO, PODCASTS, we also had BILLBOARDS around southeastern Wisconsin, and POSTERBOARDS at 34 gyms, clinics and YMCAs across the state!

We also received official proclamations declaring April as Parkinson Awareness Month from Governor Evers, and the mayors of Milwaukee, Madison, La Cross, Wausau and Appleton.

Educating the Educated About Parkinson’s Disease

April 1, 2019 Community Outreach, Education, Life

This column appeared in Parkinson’s News Today.

I went to the dermatologist yesterday for a skin check. Those of us who have Parkinson’s disease (PD) should make a habit of getting a yearly check because our condition increases the odds of getting skin cancer. The Mayo Clinic reported that patients with Parkinson’s “were roughly four times likelier to have had a history of melanoma than those without Parkinson’s, and people with melanoma had a fourfold higher risk of developing Parkinson’s.”

So, I had an appointment with the dermatologist. After a thorough body check and five biopsies, I was free to leave. The nurse stayed back with me after the doctor left because I struggled to move. She asked when I was diagnosed with Parkinson’s. After I answered “2004,” she replied, “Isn’t that young for Parkinson’s?” Not as young as when the symptoms began 10 years before that, I wanted to answer.

She followed that question with another: “Did it run in my family?”
No.
“Not even one relative?”
No.
“Are you sure?”
Yes.

While I dressed and walked out to where my husband waited in the car, I shook terribly. That’s something I hadn’t done in quite a while. I was sure it was the combination of numbing five different areas with an intrusive needle and the anxious feeling that came over me with the news that spots could be cancerous. However, what caught me almost more off guard was the nurse’s questioning.

I guess what surprised me is how uninformed so many still are.

I have spoken to groups about my 20-year journey with Parkinson’s disease. I write about it on my blog. I am open about it with others. I have written articles for several different publications. I am a PD advocate. I know a lot about the disease. I just figure others do, too. What surprised me most about her questions was that she worked for a dermatologist who should be very familiar with PD since the disease can highly affect the skin.

As patients, our job is far from finished.

As long as we live with PD, we are responsible for getting information about this disease out to everyone we can, as best we can. Not just to newbies in the patient club, but also those in the medical fields. Perhaps the patients and caregivers should hold a conference for medical professionals instead of the opposite. After all, we are living PD day to day, feeling it moment by moment. As my movement disability specialist once told me, “You patients are the experts. The doctors take their cue from you.”

If that is true then we need to be proactive with the hand we’re dealt. We must educate those around us, whether they’re a patient, nurse, caregiver, doctor, dental hygienist, or medical transporter. It’s going to take a whole lot more than answering the question of whether Parkinson’s disease is hereditary — it was obvious to me the nurse wasn’t buying my answers.

WPA on the Radio!

April 1, 2019 Education, Life

WPA Executive Director Gary Garland was interviewed by Milwaukee Radio Group host Andrea Williams last week. Listen here!

Coronavirus and treatment for Parkinson’s

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

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

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

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

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

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

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

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

Study: People skip Parkinson’s, Alzheimer’s meds as prices rise

Estrogen Therapy for Men? Maybe.

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

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

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

Further research ‘could change countless lives’

A Wearable Device Is Changing the Way Clinicians Manage PD

Developing a Biomarker for Parkinson Disease

What’s the process for developing a biomarker?

How have various departments collaborated in this project?

Parkinson’s Awareness Posterboards

Educating the Educated About Parkinson’s Disease

I guess what surprised me is how uninformed so many still are.

As patients, our job is far from finished.

WPA on the Radio!

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