Awareness

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:

WPC Launches Dual Language Webinar Series

December 1, 2020 Awareness, Caregivers, Community Outreach, Education, Life

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

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

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

View the schedule HERE.

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.

How to Deal with Cabin Fever

June 1, 2020 Awareness, Caregivers, Life, Support Groups

Cabin fever is often associated with being cooped up on a rainy weekend or stuck inside during a winter blizzard.

In reality, though, it can actually occur anytime you feel isolated or disconnected from the outside world.

Indeed, cabin fever is a series of emotions or symptoms people experience when they’re confined to their homes for extended periods of time. This may be due to a variety of circumstances, such as a natural disaster, lack of transportation, or even social distancing for pandemics like COVID-19.

Recognizing the symptoms of cabin fever and finding ways to cope may help make the isolation easier to deal with. Keep reading to learn more about how to do this.

What is cabin fever?

In popular expressions, cabin fever is used to explain feeling bored or listless because you’ve been stuck inside for a few hours or days. But that’s not the reality of the symptoms.

Instead, cabin fever is a series of negative emotions and distressing sensations people may face if they’re isolated or feeling cut off from the world.

These feelings of isolation and loneliness are more likely in times of social distancing, self-quarantining during a pandemic, or sheltering in place because of severe weather.

Indeed, cabin fever can lead to a series of symptoms that can be difficult to manage without proper coping techniques.

Cabin fever isn’t a recognized psychological disorder, but that doesn’t mean the feelings aren’t real. The distress is very real. It can make fulfilling the requirements of everyday life difficult.

What are the symptoms?

Symptoms of cabin fever go far beyond feeling bored or “stuck” at home. They’re rooted in an intense feeling of isolation and may include:

restlessness
decreased motivation
irritability
hopelessness
difficulty concentrating
irregular sleep patterns, including sleepiness or sleeplessness
difficulty waking up
lethargy
distrust of people around you
lack of patience
persistent sadness or depression

Your personality and natural temperament will go a long way toward determining how cabin fever affects you.

Some people can weather the feelings more easily; they may take on projects or dive into creative outlets to pass the time and ward off the symptoms.

But others may face great difficulty with managing day-to-day life until these feelings pass.

What can help you cope with cabin fever?

Because cabin fever isn’t a recognized psychological condition, there’s no standard “treatment.” However, mental health professionals do recognize that the symptoms are very real.

The coping mechanism that works best for you will have a lot to do with your personal situation and the reason you’re secluded in the first place.

Finding meaningful ways to engage your brain and occupy your time can help alleviate the distress and irritability that cabin fever brings.

The following ideas are a good place to start.

Spend time outdoors

Research shows that time spent in nature is time well spent for mental health.

Not only does spending time outdoors boost your cognitive function, it may also help:

improve your mood
alleviate stress
boost feelings of well-being

Depending on your reason for isolating, be sure to check all local regulations and avoid any spaces that are closed for safety or health reasons.

If getting outdoors isn’t an option, you could try:

opening up your windows to let the outdoor breeze in
adding a bird feeder outside your window to bring birds closer to your living space
ordering or buying fragrant, fresh-cut flowers and placing them where you can see and smell them throughout the day
growing herbs or small plants on a windowsill, patio, or balcony

Give yourself a routine

You may not have a 9-to-5 job to report to while you’re isolated, but a lack of routine can cause disruptions in eating, sleeping, and activity.

To keep a sense of structure, try to create a daily routine that consists of work or house projects, mealtimes, workout time, and even downtime.

Having an outline for your day helps you keep track of the trajectory of your hours and gives you mini “goals” to hit throughout the day.

Maintain a social life

So you can’t go to the movies or meet your friends for dinner. But you can still “meet up” with them — just in a different way.

Use real-time video streaming services, like FaceTime, Zoom, or Skype, to chat with your friends, colleagues, and loved ones. Face-to-face chat time can keep you in contact with the “outside world” and make even your small home feel a whole lot bigger.

Connecting with others who are in a similar situation can also help you feel that you’re not alone. Sharing your thoughts, emotions, and challenges with others can help you realize that what you’re feeling is normal.

Connecting with others may even help you find creative solutions to an issue you’re grappling with.

Express your creative side

Did you play a band instrument in high school? Were you once interested in painting? Do you have stacks of vacation photos you once promised yourself you’d put in a scrapbook? Is there a recipe you’ve always wanted to try but never had the time?

Use your time in isolation to reconnect with creative activities that you’ve had to put on hold because life got too busy. Spending time on creative activities keeps your brain busy.

Keeping your mind occupied and engaged may help ward off feelings of boredom or restlessness and make the time pass more quickly.

Carve out some ‘me time’

If you live with others, feelings of cabin fever may be intensified by the nearness of other individuals.

Parents have responsibilities to children; partners have responsibilities to one another. But that doesn’t mean you shouldn’t have any time on your own.

Give yourself time “away” from others to relax. Find a quiet place to read a book, meditate, or pop in some earbuds for an engaging podcast.

If you’re feeling stressed, you may even want to tune in to a podcast on mental health or anxiety.

Break a sweat

Research has shown that people who exercise regularly are less prone to anxiety than people who don’t exercise. That’s because physical activity lowers your body’s stress hormones, such as cortisol.

At the same time, exercise causes your brain to release endorphins. These neurochemicals can boost your mood and overall feeling of well-being.

If you can’t get outside, you can do a strength training workout at home using just your body weight or simple equipment, like dumbbells or resistance bands.

Or you can put together your own routine by focusing on a few basic but effective exercises, such as:

pushups
squats
burpees
lunges
planks

If you need a more structured program, there are plenty of online exercise options on YouTube and through various exercise apps.

Chill out

Not every minute of every day you spend at home has to be planned. Give yourself some time to rest. Look for constructive ways to relax.

Mindfulness, deep breathing, and relaxation exercises may help you maintain your emotional health and balance feelings of isolation or frustration.

When to Get Help

Cabin fever is often a fleeting feeling. You may feel irritable or frustrated for a few hours, but having a virtual chat with a friend or finding a task to distract your mind may help erase the frustrations you felt earlier.

Sometimes, however, the feelings may grow stronger, and no coping mechanisms may be able to successfully help you eliminate your feelings of isolation, sadness, or depression.

What’s more, if your time indoors is prolonged by outside forces, like weather or extended shelter-in-place orders from your local government, feelings of anxiety and fear are valid.

In fact, anxiety may be at the root of some cabin fever symptoms. This may make symptoms worse.

If you feel that your symptoms are getting worse, consider reaching out to a mental health professional who can help you understand what you’re experiencing. Together, you can identify ways to overcome the feelings and anxiety.

Of course, if you’re in isolation or practicing social distancing, you’ll need to look for alternative means for seeing a mental health expert.

Telehealth options may be available to connect you with your therapist if you already have one. If you don’t, reach out to your doctor for recommendations about mental health specialists who can connect with you online.

If you don’t want to talk to a therapist, smartphone apps for depression may provide a complementary option for addressing your cabin fever symptoms.

The Bottom Line

Isolation isn’t a natural state for many people. We are, for the most part, social animals. We enjoy each other’s company. That’s what can make staying at home for extended periods of time difficult.

However, whether you’re sheltering at home to avoid dangerous weather conditions or heeding the guidelines to help minimize the spread of a disease, staying at home is often an important thing we must do for ourselves and our communities.

If and when it’s necessary, finding ways to engage your brain and occupy your time may help bat back cabin fever and the feelings of isolation and restlessness that often accompany it.

Article from Healthline.com

Teen Scientist Working on Parkinson’s Treatment

January 1, 2020 Awareness, Change, Research

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Article from NBCDFW.

“Poor Me”? Or “Lucky Me!”

January 1, 2020 Awareness, Community Outreach, Life, Support Groups

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

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