Spinal Cord Stimulation as PD therapy

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.

Relief from pain and improved mobility

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.

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Interview with Andrea Williams, Milwaukee Radio Group

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:

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

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.

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

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, PharmDGeorgina Aldridge, MD, PhD, and Jacob Simmering, PhD.


Article from University of Iowa Carver College of Medicine.

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Long Distance (Virtual) Caregiving: Staying Connected

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.


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

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

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Why do people with Parkinson’s develop addictive behaviours?

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.

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Diet, Nutrition, and Parkinson’s: What you Need to Know

Diet and nutrition have been found to play a crucial role in Parkinson’s. In a recent ‘Ending Parkinson’s Disease: Live’ webinar on Parkinson’s EU, Parkinson’s expert Dr Bastiaan Bloem, epidemiologist Dr Alberto Ascherio and Parkinson’s campaigner Omotola Thomas, considered how different foods can affect the risk of diagnosis, maintaining bowel health and more.

We share five key takeaways from their discussion.

1. Which foods can affect your risk of developing Parkinson’s?

Diet, said Dr Bloem, “is a really hot topic in the field of Parkinson’s”. Alongside exercise, diet and nutrition “are the big new kids on the block when it comes to improving symptoms, and perhaps, slowing down the progression of the disease.”

Dr Bloem and Dr Ascherio praised the Mediterranean diet, which varies by country and region, for its potential to lower the risk of developing Parkinson’s. The Mediterranean diet is generally high in vegetables, fruits, grains, healthy fats and fish, and is typically low in meat and dairy. Such a diet is rich in nutrients and antioxidants, making it “better than the traditional Western diet”, according to Dr Ascherio.

On the other hand, Dr Bloem theorised that “a lifetime of exposure to dairy” is associated with a higher risk of developing Parkinson’s, likely due to the pesticides ingested by cattle from contaminated grass.

Dr Ascherio added: “I don’t think that globally, dairy products are known to be a major cause of pesticide exposure. Dairy also has other effects like reducing the level of uric acid in blood, which we found to be related to a risk of Parkinson’s disease.”

2. Could you be malnourished if you have Parkinson’s?

While Dr Bloem pointed out that a regular diet should offer all the necessary nutrients, he did note that vitamin D and vitamin C can be exceptions. “Many people, particularly when you age and particularly when you’re a woman, are at risk of developing a vitamin D deficiency. There are fascinating anecdotal reports of people taking vitamin D and experiencing improved motor symptoms.”

Meanwhile, he explained, vitamin C supplements can help to prevent bladder infections in Parkinson’s patients by acidifying the urine. “Bladder infections can trigger a cascade that leads to worsening Parkinson’s symptoms.”

Dr Bloem also debunked the use of supplements like vitamin E, curcumin and Coenzyme Q190, which have been found to offer no benefits to people with Parkinson’s.

3. How can you maintain your bowel health?

Bowel problems are common in Parkinson’s patients, which Dr Bloem said can be alleviated by drinking a lot of water and eating a diet rich in fibres. People with Parkinson’s should see their general practitioner for laxatives only if all else fails. “The rule is you need to have bowel movements at least once every other day.”

Thomas added: “I have a three litre water bottle that I finish by the end of the day. It is a challenge, but I try to finish it. Because I struggle very greatly with constipation, I take three or four ounces of prune juice in the morning and that seems to help me.”

4. How should you take your Parkinson’s medication?

As food can interfere with the efficacy of levodopa medication, Dr Bloem recommended taking levodopa at least half an hour before or after a meal. In particular, he advised that protein intake be spread across the day.

“For most patients, taking your medication with a protein rich meal including dairy products and meat, can reduce gastrointestinal absorption of your levodopa. So, you need the proteins in order to keep up your muscle strength and avoid weight loss but try to spread the proteins over the day.”

Thomas acknowledged that this can be hard to do. She said: “I have a struggle spreading my proteins with my levodopa because I can’t take more than 15mg of levodopa at a time, so I’m taking it every two hours.

“That is one of those things whereby theoretically, I know what I’m supposed to do, but practically, I’m not able to.”

5. Should a dietician be part of your standard Parkinson’s care?

Yes, said Dr Bloem. “I think paying attention to the gut is part of routine clinical care at every consultation for people with Parkinson’s. Parkinson’s starts in the gut for many patients and slow bowel movements are very common, impacting the efficacy of your medication and appetite for food. It needs attention.”

While a Parkinson’s doctor or nurse can offer useful dietary advice, Dr Bloem himself recommends that his patients see a dietician at least once. “I think it’s part of standard care.”

View the webcast.

View WPA’s “Ask the Expert” video on this topic with Michelle McDonagh, RD, Froedtert & Medical College of Wisconsin

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Therapy Fights Depression for People with PD

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 NeurologySource: Rutgers University. Original Study

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Phlegm-busting Drug Ambroxol Shows Promise in Parkinson’s

One of the major genetic risk factors believed to contribute to the development of Parkinson’s disease (PD) is having a mutation in the gene called GBA1 (glucocerebrosidase). Unable to do its job correctly, this damaged gene leads to the build-up of unhealthy, misfolded clumps of alpha-synuclein in the brain. These clumps, called Lewy bodies, impact dopamine production and are the hallmark of PD. What if there was a way to prevent the build-up of Lewy bodies in the first place?

A 2020 study published in JAMA Neurology, titled, “Ambroxol for the Treatment of Patients with Parkinson Disease with and Without Glucocerebrosidase Gene Mutations: A Nonrandomized, Noncontrolled Trial” (Mullin et al., 2020), investigated whether an over-the-counter cough syrup, called Ambroxol, may be the key. The cough syrup, specifically, an expectorant, is used to break up phlegm.

This 186-day clinical trial of 17 people with PD ― with and without the GBA1 mutation ― involved participants taking progressively increasing doses of Ambroxol in the form of an oral tablet. Baseline measurements included physical and neurological examination, an electrocardiogram, blood sampling and spinal fluid examination obtained by lumbar puncture. Three additional in-person clinical visits were held on day 11, day 93, and day 186. Of note, at baseline, Ambroxol was undetectable in both the blood serum and spinal fluid. All study participants continued their normal L-dopa therapy throughout the trial.

In study participants both with and without the gene mutation:

  • Ambroxol successfully crossed the blood-brain barrier.
  • Ambroxol was safe and well-tolerated at the administered dose.
  • Ambroxol successfully bound to the mutated genes’ protein, which physically helped the protein function properly.
  • Healthy levels of alpha-synuclein increased in the spinal fluid.

What Does This Mean?
This study showed that Ambroxol is safe to use as a treatment in people with Parkinson’s. Ambroxol may slow the progression of Parkinson’s disease. How? Taking Ambroxol as a medication can prevent the negative effects of the GBA mutation ― including possibly reducing the formation Lewy bodies at the source. Ambroxol shows promise, and warrants further investigation ― including conducting larger, placebo-controlled trials.

Of note, while Ambroxol has been used as a safe and effective over the counter expectorant for adults and children in more than 50 countries for 30-plus years, the administered dose in this trial was approximately 10 times the specified dosage. Additionally, Ambroxol is currently not approved for prescription or over the counter use by the U.S. Food and Drug Administration (FDA) for any indication, at this time.

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