research

Spinal Cord Stimulation as PD therapy

May 1, 2021 Research

A new study finds that spinal cord stimulation could represent an alternate therapy for people with Parkinson’s disease that is resistant to conventional treatments. The researchers claim that this emerging technology may help decrease pain and improve mobility.

Close to 1 million people may be living with Parkinson’s disease in the United States. This long-term degenerative disorder results from damage to nerve cells in the brain that produce dopamine.

As the symptoms of Parkinson’s develop, a person may first experience a tremor in one hand and stiffness elsewhere in the body. The four key symptoms are:

a tremor
stiffness or tightness in the arms, legs, or elsewhere in the body
slowed movement and difficulty initiating and coordinating movement — possibly presenting as a loss of facial expression or a slow, stuttering walk
difficulty with fine movements, such as doing up buttons

Ultimately, a person experiences problems maintaining balance, and some people with Parkinson’s also develop dementia. Certain people only develop motor symptoms and others have cognitive symptoms, and doctors are still unsure why this is.

Some people refer to dopamine as the “feel-good” hormone or chemical messenger. It has various roles, including in movement coordination, and it is an active player in the brain’s reward system.

Most people with Parkinson’s also develop at least one nonmotor symptom. The most common of these are sleep disturbances, a loss of smell, pain, constipation, and excessive sweating.

People may also experience anxiety and neuropsychiatric symptoms, such as depression, apathy, or psychosis.

This wide array of symptoms can affect relationships and cause people with Parkinson’s to have lower self-worth and lose their sense of identity.

While the cause of Parkinson’s remains unknown, prescription treatments for dopamine deficiency and deep brain stimulation (DBS) are the gold-standard approaches.

But dopamine treatment can cause side effects, such as dyskinesias, involuntary twisting movements of the body. These usually diminish as the drug wears off. Other adverse effects include gastrointestinal disturbances, hallucinations, anxiety, and muscle fatigue.

Meanwhile, DBS can cause brain bleeding, infection, and seizures.

Given the urgent need for treatments that alleviate Parkinson’s symptoms with minimal risks, a group of researchers has now investigated an alternate approach: spinal cord stimulation. They have published their findings in the journal Bioelectronic Medicine.

Assessing an alternate therapy

The researchers set out to determine whether spinal cord stimulation could be a singular therapy for Parkinson’s disease and a salvage therapy, in people for whom DBS is increasingly ineffective.

The study included 15 participants, with a mean age of 74 years. On average, they had received the diagnosis of Parkinson’s disease 17 years earlier.

Eight had undergone DBS previously, and the others had only received medication, including pain relievers, as Parkinson’s treatment.

All experienced chronic pain that was resistant to pain relief medication and changes in their treatment for the disease. When a particular nerve was involved, drugs called nerve blocks had been ineffective.

Once the study had begun, electrodes were surgically implanted under the participants’ skin near their spines.

The participants could choose to receive mild electric currents in three stimulation modes: continuous tonic stimulation, continuous burst stimulation, or a cycling mode with burst stimulation, which provided stimulation for 10–15 seconds at a time, separated by pauses of 15–30 seconds.

The researchers observed that the 15 patients experienced “significant improvement” after using the spinal cord stimulator device.

Based on the visual analog scale of pain intensity — the seven patients who had never received DBS experienced a 57% reduction, on average. For those who had received DBS in the past, the average reduction in pain intensity was 61%.

In addition, the researchers found that participants who opted for the cycling mode experienced, on average, a 67% reduction pain, using the same scale. By comparison, those who chose continuous burst stimulation had, on average, a 48% reduction in their pain scores.

Of the 15 patients, 11 had been able to complete a 10-meter walk before and after the study. After the stimulation, eight people (73%) in this group showed an average improvement of 12% during their 10-meter walks. The researchers used these walks to assess the participants’ mobility and gait.

They also used a “timed up-and-go” test to measure how long it takes a person to get up from a chair, walk 3 meters, turn around, walk back to the chair, and sit down. Among the 11 participants who completed this test, seven (64%) showed improvement in their completion times.

The patients who chose a continuous burst pattern had an 18% improvement in their timed up-and-go scores. However, those who chose the cycling mode had a 7% worsening in these scores.

While many of the results seem promising, it is important to note that spinal cord stimulation carries some risks and may cause complications, including bleeding at the site of insertion.

The researchers also acknowledge that their study design had a limitation: They were unable to determine whether the improvements in scores stemmed from the stimulation itself or the resulting decrease in pain, which allowed for more mobility.

The team of researchers, based in the U.S. and Japan, observe:

“Spinal cord stimulation is an emerging technology that can potentially be utilized to treat both the motor and nonmotor symptoms, such as pain, that patients with Parkinson’s disease deal with on a daily basis.”

Another limitation involved the fact that the patients did not receive the spinal cord stimulators in the exact same location, due to differences in how their pain presented. Also, not every patient was able to return and complete the mobility tests, which reduced the already small sample size.

In addition, this small study did not include a control group, so some changes in pain scores could result from a placebo effect.

This research should thus be regarded as a proof-of-concept study. Further evaluation in larger trials is needed.

Finally, some researchers involved in this study have disclosed potential conflicts of interests due to affiliations with medical device companies and pharmaceutical companies, including Medtronic, Abbott, Boston Scientific, Kyowa Kirin, Boehringer Ingelheim, AbbVie, and FP Pharmaceutical.

Article from Medical News Today.

Interview with Andrea Williams, Milwaukee Radio Group

March 30, 2021 Awareness, Change, Life, Research

We recently sat down with Andrea Williams from Milwaukee Radio Group. Gary Garland, WPA’s executive director, and Anna Warren, who lives with Parkinson’s, were featured.

Take a listen here:

Stress Linked to Harsher Parkinson’s Symptoms, but Mindfulness May Help

March 1, 2021 Life, Research

People with Parkinson’s disease experience more stress than those without this disease, and high stress levels associate with a worsening of symptoms, research based on a patient survey reported.

Mindfulness, a practice of maintaining a heightened state of awareness of thoughts and feelings, may help to lower stress in people with Parkinson’s, especially anxiety and depressive feelings, it also reported.

These findings were in the study “Stress and mindfulness in Parkinson’s disease – a survey in 5000 patients,” published in npj Parkinson’s Disease.

A team led by researchers in the Netherlands sent out a survey through The Michael J. Fox Foundation’s Fox Insight program. The survey asked a variety of questions about stress, Parkinson’s, and related factors.

Survey answers were returned by 5,000 patients and by 1,292 controls, mostly relatives, spouses, or friends of patients who did not have Parkinson’s. Patients’ mean age was 67.3, their average disease duration was 5.9 years, and 48.6% were women. Among controls, the mean age was 60.8 years, and 78.0% were women.

Most survey respondents (93%) were white, and most (82.6%) lived in the U.S. Of note, not all survey respondents answered every question; the researchers analyzed data that were available.

Analyses demonstrated that perceived stress was generally higher in people with Parkinson’s than in controls. This effect was also “much larger for men than for women,” the researchers wrote.

Parkinson’s patients also scored higher than controls on measurements of anxiety and depression, and lower on dispositional mindfulness (a trait that allows a person to be aware of the present moment, even during ordinary tasks). These differences were all independent of age or sex.

Among patients, higher stress scores associated with worse symptoms for all symptoms assessed (including sleeping problems, depression, involuntary movement, and slowness of movement.)

The symptom most affected by stress was tremor: 81.8% of patients reported a worsening in tremor during periods of stress.

“It should be noted, however, that PD [Parkinson’s disease] patients may perceive externally observable symptoms such as tremor more easily than slowness of movement or muscle stiffness, which could (partly) explain the difference between tremor and other motor symptoms,” the researchers wrote.

Patients who reported higher stress levels were also found to be more likely to report lower scores related to quality of life, self-compassion, and dispositional mindfulness. Stressed patients were also more likely to show high scores related to rumination (continuously thinking about the same thoughts, which are often sad or dark).

In free-text portions of the survey, patients commonly stated that stress worsened their cognitive and communication difficulties, and heightened emotional symptoms like anxiety.

Physical exercise was the most commonly reported stress-reducing strategy in the survey, mentioned by 83.1% of patients. Other frequent approaches to lessen stress included religion, music, art, reading, taking anti-anxiety or antidepressant medication, and looking for social support (e.g., talking to a friend).

Over a third (38.7%) of Parkinson’s patients reported practicing mindfulness — which involves focusing on the present moment, rather than fixating on the past or worrying about the future.

Of note, patients who were mindfulness users reported significantly higher dispositional mindfulness, and also higher perceptions of stress and anxiety. The researchers noted that it is difficult to tease out cause-and-effect relationships from this data. For example, people who are more stressed might be more likely to seek out mindfulness, or mindfulness practitioners may be more in touch with feelings of stress or anxiety and so recognize them to a greater degree.

Mindfulness also was associated with less severe symptoms across all motor and nonmotor symptoms measured.

“Patients perceived a positive effect of mindfulness on their symptoms,” the researchers wrote.

“Highest effects were seen for depression and anxiety, for which, respectively, 60.2% and 64.7% noticed improvement,” they added.

About half of mindfulness users (53.2%) practiced this technique once a week or more, while over a fifth (21.5%) practiced mindfulness once a month or less. Broadly, individuals who practiced mindfulness more frequently reported a greater easing of their symptoms, but consistent benefits were seen among all mindfulness users regardless of frequency.

The researchers speculated that, even when people aren’t actively practicing mindfulness, they may incorporate it into their lives more informally, through subtle changes to lifestyle or thought patterns.

These findings “[support] the idea that mindfulness is effective in reducing PD symptoms,” the researchers wrote, though they again noted they could not determine cause-and-effect from these data. Rather, “people for whom mindfulness is most effective might consequently practice it more.”

The researchers called for further studies, particularly in larger and more diverse groups, to better understand the effects of stress on Parkinson’s patients, as well as the potential benefits of practicing mindfulness.

“The significant beneficial effects that patients experienced from self-management strategies such as mindfulness and physical exercise encourages future trials into the clinical effects and underlying mechanisms of these therapies,” they concluded.

People with Parkinson’s disease have a higher risk of dying from COVID-19

November 1, 2020 Awareness, Change, Life, Research

A new study of approximately 80,000 patients shows that people with Parkinson’s disease (PD) have a 30% higher risk of dying from COVID-19 than people without the neurodegenerative condition.

The new analysis conducted by researchers with University of Iowa Health Care based on patient data in the TriNetX COVID-19 research network suggests that Parkinson’s disease is an independent risk factor for dying from COVID-19.

The UI research team led by neurologists Qiang Zhang, MD, and Nandakumar Narayanan, MD, PhD, identified the COVID-19 patient cohort as of July 15 and analyzed the mortality data eight weeks later. They found that 5.5% (4,290 out of 78,355) of COVID-19 patients without PD died compared to 21.3% (148 of 694) COVID-19 patients who also had PD.

However, the patients with PD were generally older, more likely to be male, and less likely to be African American than the patients without PD. All of these factors also increase the risk of death from COVID-19. So, the UI team used two approaches to account for these differences: logistic regression with age, sex, and race as covariates, and matching each PD patient with five non-PD patients with the exact age, sex, and race, and performing a conditional logistic regression. In both cases, the researchers found that the risk of dying from COVID-19 was 30% higher for patients with PD. The findings are published in the journal Movement Disorders.

“We recognize the limitations of this study, it is retrospective data from a single database, but we are confident that these data show that Parkinson’s disease is independent risk factor for death in COVID-19,” says Narayanan, UI associate professor of neurology and a member of the Iowa Neuroscience Institute. “We believe this observation will be of interest to clinicians treating patients with Parkinson’s disease, and public health officials.”

The researchers say the findings should also inform patients with PD, and their physicians, of the increased importance of preventing COVID-19 infection in these patients.

“For our own patients, we can give advice that it’s important that you wear a mask. It’s important that you socially distance,” says Zhang, an associate in the UI Department of Neurology.

Zhang adds that physicians should also weigh the increased risk of death from COVID-19 when considering how to care for PD patients in person during the pandemic.

A potential reason why PD patients have an increased risk of death from COVID-19 may be related to the fact that COVID can cause pneumonia and pneumonia is a leading cause of death in patients with PD. This is partly because Parkinson’s patients can have trouble swallowing or choking that can cause aspiration.

“We are all focused on COVID right now, but this is a clear example of a respiratory illness that leads to increased mortality [in PD patients]. These findings may also have implications for understanding risks for PD patients from other diseases, including influenza,” Narayanan says. “I would recommend a flu vaccine and pneumonia vaccine to try to prevent these problems in patients with PD.”

In addition to Narayanan and Zhang, the UI research team included Jordan Schultz, PharmD, Georgina Aldridge, MD, PhD, and Jacob Simmering, PhD.

Article from University of Iowa Carver College of Medicine.

Long Distance (Virtual) Caregiving: Staying Connected

November 1, 2020 Awareness, Change, Life, Research

When someone you love is sick, it can cause stress and anxiety. Illness, especially Parkinson’s, can take a physical and emotional toll on caregivers and family, particularly when they are far away. For everyone dealing with a Parkinson’s diagnosis, there is generally worry and uncertainty.

Around 7 million people in the US today are caregivers; nearly 20 percent perform this role long distance. As baby boomers continue to age, the number of caregivers is projected to increase significantly in the coming years. Developing strategies to partner in caregiving can help families stay involved with the progression of treatments, and ease the varied burdens of a Parkinson’s diagnosis on families.

What is caregiving?

Caregiving describes the time and attention needed to care for relatives or friends when they require additional support caring for their own needs. Help provided can take different forms; it may include everyday tasks like grocery shopping, transportation, and meal preparation. It can also encompass managing medical appointments and household finances, and full-time personal care. Caregiving is generally unpaid, done out of love or sometimes a sense of obligation.

Caregivers can come from different places: a husband, wife, or partner, a child, parent, or sibling, other relatives, friends, even neighbors. Someone close to the patient is the most important non-medical member of the care team. Yet the fears and urgency of caring for someone so ill can take a physical, psychological, and financial toll on caregivers and their own families.

Caregiving can take its toll

Caregivers often experience physical and psychological side effects when caring for a family member or friend. Studies have shown that those who provide informal, unpaid care to someone with significant limitations to their independence can experience a negative impact on their own health and personal lives.² For example, some people don’t take the time to eat right and exercise; this may result in both weight gain and mood disturbances. Others may find they don’t have the time for a social life or to participate in their regular leisure activities.

Long distance caregivers

Those who live far enough away that they are unable to have daily, face to face interactions with their relatives are known as long-distance caregivers. Caregiving can be more complex when distance, time, cost, and other factors limit accessibility. Factors like work, family, and transportation can affect the ability to sustainably provide care. Communications from long-distance caregivers can be occasional or regular, but for many, it is more just periodic checking in. Making a phone call to say hello and share updates about work, family, and life in general is an example of how long-distance touchpoints have value.²

Challenges of long distance caregiving

Long-distance caregivers have support needs that may differ from nearby caregivers.² They typically are not part of the medical team and thus have limited relationships with or access to the doctors involved in care and treatment of their loved one. Many report high stress and anxiety over the changing health status of their loved one.²

The impact on family dynamics can also be stressful when care is split between nearby and long-distance caregivers. If the primary caregiver is nearby they may feel that the family member or friend who is far away may be of less help, and not feel the same impact of the burden of caregiving. This can lead to resentment and disputes. Yet, studies have demonstrated that caregivers who are unable to see their family member regularly are stunned by physical and functional changes associated with treatments. This can result in experiencing more stress for the remote caregiver over the dramatic changes seen, due to lapses in time between visits. By comparison, for caregivers nearby, observed changes in a loved one undergoing treatments are more gradual.

Staying connected across any distance

There are steps long-distance caregivers can take to stay connected and participate in a more involved way. When someone you love is sick it can be upsetting and disruptive. Getting to know the medical team providing care, whether in the hospital, medical office or at home, can help you stay connected with medical updates and treatment decisions. Some people use technology to stay in touch. For example, FaceTime and Skype can be used for video chatting and offer a sense of being closer.²

Technology can also make it possible to be a part of medical appointments and treatment decision discussions. Try to arrange in advance for some kind of video conferencing technology with the medical team. That way you can listen to what the doctors have to say as well as ask questions.²

Research supports findings that long-distance caregivers do better personally when they participate in appointments via videoconference, get their own personal counseling time with social workers and improved access to medical information and caregiving resources.²

Long-distance caregivers who are heavily involved in caregiving estimate they spend at least one day a week managing the affairs of their loved one. They report missing work, having to rearrange their schedules, and other distractions when caring for someone far away.

Practical tips for long distance caregiving

Stay in touch

Regular contact makes people feel more connected
Make a schedule for phone calls
Plan ahead for travel, if possible
Keep up to date with their medical team

Set up regular communication time

Call
Email/text
Skype or FaceTime

Use technology

Send family photos and videos to keep your loved one involved
Establish a videoconference routine with providers
Make a budget and help track expenses

Get help

Accept support from friends and family when you need to be away
Find a support group in your own community

Most importantly, remember to listen to your loved one, support them when making treatment decisions, and prioritize your own self-care. There may be distance between you and your loved one, but that doesn’t mean you can’t still support and care for them.

Article from Parkinsonsdisease.net.

“Black individuals don’t get as much time with doctors, studies show”

October 1, 2020 Awareness, Change, Life, Research

Dayne Beccano-Kelly shares his experience as a black professional working in Parkinson’s research, explains why visibility and education are the key to increasing diversity – and how unrepresentative studies and a lack of information are failing black people with Parkinson’s around the world

I describe my work as a researcher as like a telephone conversation that I’m listening into. For people with Parkinson’s, the line gets a bit faulty. I’m trying to see what causes the messages to change so that we can clean up the line.

I spend a lot of time in a lab here at Oxford University, however I do try to see individuals living with Parkinson’s, too. We have a Parkinson’s group doing outreach and funding. We also host Oxford Parkinson’s Disease Centre day, where we organise talks and bring together collaborators, independent scientists, carers and people with Parkinson’s. This always really puts what I’m doing into perspective.

As a researcher, it’s important to have a cold scientific approach so as not to be biased – but I think it’s vitally important to remember that while you cannot be completely emotionally driven, you must remember that the money we are spending is going towards finding something to help.

“They looked at my skin colour before talking to me”

I’ve worked in two principalities across four different countries, and I’ve never encountered a senior black member of academic staff in neuroscience within my departments.

I’ve been told by professionals in my field that I was there because of positive discrimination. It’s very hard to be told that, but you have to remind yourself ‘no, that’s not true’. They looked at my skin colour before talking to me and decided that I must be in my position because of the colour of my skin. That’s racism.

I believe that there are two key things that you can do to promote BAME (black, Asian and minority ethnic) individuals in STEM (science, technology, engineering and mathematics): visibility and education. Telling students from an early age, ‘you are capable of getting there’. Raising the issue, talking to everybody in the room – not just the black students – and making them fully aware that you can begin to end the problem with your generation.

“It’s important for the black community that we’re informed enough”

Disorders like ALS (amyotrophic lateral sclerosis), MS (multiple sclerosis) and essential tremors have all been shown to have different levels of prevalence and incidence – as well as a wide range of symptoms – within different ethnic groups. But there has not been enough research into how Parkinson’s affects individuals from different ethnic groups. While some studies suggest black individuals are less likely to get Parkinson’s than Caucasian western individuals, others may indicate it is equal.

There has been instances where it has been proven that in African and West Indian communities, individuals tend not to go to the doctors enquiring about Parkinson’s because they only experience non-motor symptoms. By not manifesting typical Parkinson’s features, they may be treated for something else, meaning it takes them longer to receive the treatment they really need.

In certain parts of the world, it’s common for black patients to not get as much time with doctors, and for their symptoms to be deemed milder than somebody of Caucasian descent. We need more global information about Parkinson’s in those underserved groups. It’s important for the black community that we’re informed enough to notice these non-motor symptoms and seek help.

“Diversity needs to become normative”

Parkinson’s studies are biased towards people of Caucasian descent. We need to address that fact and keep pressing forward with recruiting more BAME individuals into the research. Parkinson’s organisations need to be a part of that – diversity needs to become normative.

We must see that there is a disparity in what researchers are sampling; check the ethnic groups present and break research down to realise that we can’t draw a conclusion because there are simply not enough black people.

Having more information will help us help people with Parkinson’s, and that means when they come to the doctor they won’t be turned away, not because of the colour of their skin, but because they don’t believe that they’re presenting symptoms in the way that they would expect.

There is this issue across the board with BAME treatment. Whether it be in the workplace or care, there needs to be acknowledgement coupled with action.

Dayne Beccano-Kelly is a career development fellow in Neurobiology at the Department of Physiology, Anatomy and Genetics, University of Oxford. He completed his undergraduate degree and PhD at the University of Leeds, UK, before undertaking postdoctoral research in Dundee, UK, and Vancouver, Canada. Article from Parkinsonslife.eu.

Why do people with Parkinson’s develop addictive behaviours?

September 1, 2020 Awareness, Life, Research

In the latest in Parkinson’s Life’s ‘Ask the expert’ series, psychiatrist and neuroscientist Dr Philip Mosley explains how behavioural addictions can affect the lives of people with Parkinson’s – and shares how a recent study used a virtual casino to find out more about the condition.

What causes some people with Parkinson’s to develop impulsive and compulsive behaviours?

That’s a complex question. From a biological standpoint, dopaminergic medication seems to act on the brains of people with Parkinson’s to bias risky decision-making and reinforce sensation-seeking behaviour, even if it comes at great personal cost.

As well as being involved in the regulation of movement, dopamine is an important ‘teaching signal’ in the brain that helps us to learn from negative and positive experiences, so that our future behaviour is ‘optimal’ for our environment.

The theory is that dopamine from Parkinson’s medication imbalances this signalling in certain regions of the brain and causes a ‘better than expected’ teaching signal – so that rewards are more rewarding and losses are less painful. Only some of the people who take dopaminergic medication develop these compulsive behaviours, so we believe there is something about the specific pattern of degeneration in the brains of those that do that makes them at higher risk.

Why is it important for scientists to understand why some people with the condition develop compulsive behaviours – and others don’t?

If we can unravel why a problem occurs, or at least explain some of the variability, then we can deliver more accurate and personalised information to people with Parkinson’s who are making decisions about the risks and benefits of their treatment.

If we understand who is at higher risk, we can also develop personalised management plans that take into account this vulnerability profile – whether that be choice of drug, the timing of follow up, the provision of external psychological support and how much the family are involved in oversight of the treatment plan.

Can you tell us how these behaviours can impact the lives of people who experience them?

Common behaviours I talk to my patients about include pathological gambling, compulsive spending, binge eating, hypersexuality and becoming excessively involved in hobbies or pastimes to the exclusion of all other interests.

These behaviours can be absolutely devastating. I have met people who have gambled away their life savings, lost their marriage or been prosecuted for actions they have performed whilst under the influence of these medications. There is often an ethical quandary to navigate: people generally know their behaviour is ‘wrong’ but feel compelled to continue to act in this manner despite being intellectually aware of the potential ramifications.

Stigma prevents people from seeking help and acknowledging their difficulties, which only serves to prolong these problems and magnify the fallout. My personal approach is to encourage a non-judgemental atmosphere in which people feel comfortable enough to talk freely without fear of embarrassment.

Can you tell us about how you used a virtual casino in your research?

The aim of our research was to understand more about why some people with Parkinson’s are vulnerable to developing these impulsive and compulsive behaviours. We hypothesised that brain structure, which varies between different people, was a key factor in determining whether or not compulsive behaviours would follow after people received dopaminergic medication.

We took a group of 57 people with Parkinson’s on dopaminergic medication and focused on two brain networks thought to be crucial for decision-making: a network for ‘choosing’ the best course of action and a network for ‘stopping’ inappropriate actions. We used an advanced method of brain imaging which allowed us to visualise the structure of connections between the different brain regions involved in these circuits.

Alongside the brain imaging, we created a virtual casino for our participants. We measured their level of impulsive behaviours through their tendency to place high bets, switch between slot machines and accept “double or nothing” gambles. We then compared behaviour in the virtual casino to the connectivity of the ‘choosing’ and ‘stopping’ networks, to see if there was an association.

The virtual casino was developed by a team of amazing collaborators at the Translational Neuromodeling Unit, in Zurich Switzerland, led by Professor Klaas Enno Stephan. Much of the research into impulsivity and compulsivity in people with Parkinson’s is carried out using pen-and-paper tests or else quite rarefied paradigms that don’t have much relevance to ‘real life’. We felt that our casino would simulate an environment with greater overlap and relevance to the problems experienced by our patients. In Australia, slot machines (known as ‘poker machines’ to Australians) are a huge public health concern with high levels of problem gambling throughout the community, and so it seemed appropriate to adopt this model.

What did you discover?

For the most part, the greater the strength of the ‘choosing’ network and the weaker the strength of the ‘stopping’ network, the more impulsive participants were – that is, they had a greater tendency to behave recklessly in the casino environment by placing large bets, trying lots of different poker machines and making ‘double or nothing’ gambles.

Of our 57 participants, 17 developed clinically significant compulsive behaviours problems during clinical follow up. These participants could be differentiated when we examined the interaction of brain structure, medication dosage and betting behaviour in the virtual casino.

In other words, the real-world environment of the virtual casino, which simulated one aspect of compulsive behaviour, allowed us to unpick the relationship between brain structure and dopaminergic medication to identify those who developed behavioural addictions.

Compulsive participants expressed impulsive gambling behaviour in the virtual casino, as we would have predicted. However, their brain structures suggested they would be conservative (that is, they had a weaker ‘choosing’ network and a stronger ‘stopping’ network). The size of the dose of dopaminergic medication didn’t appear to influence reckless behaviour in these individuals. This suggests the neurodegeneration associated with Parkinson’s prompts a difference in the way the brain works in these people with addiction.

Do you have any advice for people with Parkinson’s who experience compulsive behaviours?

Don’t despair – you can recover from these problems. Talk to your neurologist, your family doctor, or a psychiatrist who knows about Parkinson’s. Recruit your family or close friends, if you can, as part of your support network, and draw on the experience of those in your local support groups, if you feel comfortable sharing some information about what you are going through.

Article from ParkinsonsLife.eu.

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.

Therapy Fights Depression for People with PD

April 1, 2020 Life, Research

Cognitive behavioral therapy is a form of psychotherapy that increases awareness of negative thinking and teaches coping skills.

About 50% of people diagnosed with Parkinson’s disease will experience depression, and up to 40% have an anxiety disorder.

“The psychological complications of Parkinson’s disease have a greater impact on the quality of life and overall functioning than the motor symptoms of the disease,” says lead author Roseanne Dobkin, a professor of psychiatry at Rutgers University’s Robert Wood Johnson Medical School.

“Untreated, depression can accelerate physical and cognitive decline, compromise independence, and make it more difficult for individuals to proactively manage their health, like taking medication, exercising, and visiting the physical therapist.”

Depression in Parkinson’s patients is under-recognized and often goes untreated. Among those who receive treatment, antidepressant medication is the most common approach, though many patients continue to struggle with depressive symptoms.

The researchers investigated how adding cognitive behavioral therapy to the care individuals already received would affect their depression.

Cognitive behavioral therapy sessions helped patients re-examine their usual ways of coping with the daily challenges of Parkinson’s. Researchers individually tailored therapy, targeting negative thoughts—such as “I have no control”—and behaviors including social withdrawal or excessive worrying. Treatment also emphasized strategies for managing the disease, such as exercise, medication adherence, and setting realistic daily goals.

The researchers enrolled 72 people diagnosed with both Parkinson’s and depression. All participants continued their standard treatment. In addition, half the participants (37 people) also received cognitive behavioral therapy over the telephone weekly for three months, then monthly for six months.

By the end of treatment, individuals receiving only standard care showed no change in their mental health status, whereas 40% of the patients receiving cognitive behavioral therapy showed their depression, anxiety, and quality of life to be “much improved.”

The convenience of phone treatment reduced barriers to care, allowing patients access to personalized, evidence-based mental health treatment, without having to leave their homes, Dobkin says.

“A notable proportion of people with Parkinson’s do not receive the much needed mental health treatment to facilitate proactive coping with the daily challenges superimposed by their medical condition,” she says.

“This study suggests that the effects of the cognitive behavioral therapy last long beyond when the treatment stopped and can be used alongside standard neurological care to improve global Parkinson’s disease outcomes.”

The study appears in Neurology. Source: Rutgers University. Original Study

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.