visibility

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:

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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.

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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.

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“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.

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