WHAT’S HAPPENING AT APDA

WHAT’S HAPPENING AT APDA
Optimism Walk Update
All 2020 Optimism Walks are being held virtually, and there’s one last chance for you to join us – no matter where you live! Register today for our October APDA Virtual Optimism Walk taking place on Saturday, October 17 at 11:00 am ET. You’ll join an inspiring group of participants from our St. Louis, Connecticut, Iowa, and Long Island Walks (and beyond) as we come together for a fun Online Ceremony & Celebration and then set out to walk locally in our own neighborhoods. Photos and stories from across the country will be shared using #OptimismWalk to add to the camaraderie and sense of community! Register today by clicking here.
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KEEPING IN TOUCH ONLINE

KEEPING IN TOUCH ONLINE
Virtual events have been a great source of information and activity as we all work to adhere to various health regulations and social distancing guidelines. For APDA, keeping people with PD and their families connected, motivated, and informed has been a top priority. As a result, APDA has created many virtual programs and resources, including two special series: Dr. Gilbert Hosts, a live Q&A series featuring expert guests, as well as Let’s Keep Moving with APDA, a series of fitness-focused webinars to help people exercise safely at home.
Stay Informed with Dr. Gilbert
Early on in the pandemic, we saw that our PD community was very concerned about COVID-19 and had a lot of questions about their personal risk. Dr. Gilbert Hosts began as an online series of expert interviews and Q&A sessions to educate people weekly on specific issues related to COVID-19 and PD. Due to the popularity of the program, it is continuing monthly through the end of 2020. You can register for upcoming programs or watch previous sessions online here.
Each episode features Dr. Gilbert and an expert in the field of PD to discuss timely topics and answer questions from the audience.
Coming up next on October 19, Dr. Gilbert will speak with a care partner about the challenges and blessings of caring for someone with PD. We hope you’ll join us. All sessions are recorded and archived in the Educational Video Library on our website, in case you miss an episode.
Keeping Active with APDA
In partnership with the APDA National Rehabilitation Resource Center for Parkinson’s Disease at Boston University, Let’s Keep Moving with APDA was created to help people with PD and their families stay motivated and learn how to exercise properly at home. These short (approximately 30 minutes long) sessions are led by licensed physical therapists and include lots of great Q&A’s from the audience.
Available through APDA’s Educational Video Library, you can view any of the Let’s Keep Moving with APDA sessions, including topics like Be Active at Home: Exercise tips for people with PD; How to Stay Motivated for Physical Activity with Social Distancing; Setting up for Success at Home: Creating an Exercise-Friendly Area; a three-part series on balance and PD; and so much more.
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Planning for the What Ifs – Progressive supranuclear palsy and corticobasal degeneration

Atypical parkinsonian syndromes
Progressive Supranuclear Palsy and Corticobasal Degeneration
As part of our Planning for the What Ifs series, today we expand the definition of advanced Parkinson’s disease (PD) by discussing atypical parkinsonian syndromes (APS), neurodegenerative disorders that are related to PD. Our guest author, Dr. Pravin Khemani, a Movement disorders neurologist at Swedish Medical Center in Seattle and Medical Director of the APDA Northwest Chapter, will discuss two of these disorders – progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).
PSP and CBD can mimic each other and can also mimic PD early in the clinical course, so it can be confusing and difficult to diagnose. As the diseases progress however, they produce clinical signs and symptoms which assist in their distinction as separate neurodegenerative disorders. Because there can be a significant overlap between PSP and CBD, it makes sense to discuss them together. Both diseases are caused by abnormal deposition and spread of misfolded tau protein in the brain. Hence, they are referred to as tauopathies.
CBD is less common than PSP, and both are significantly less common than PD. Based on one recent study, the combined number of new cases of PSP and CBD per 100,000 people per year was between 3 and 5. Based on these results, PD is about 5 times more common than these two diseases combined. However these diseases are still seen relatively frequently in Movement disorders clinics and many of our readers are grappling with these conditions.
Progressive supranuclear palsy (PSP):
 Since its recognition as a distinct neurodegenerative disorder in 1964, PSP has undergone more than one reorganization into various subtypes based on the increased recognition of its clinical symptoms. In PSP, the distribution of tau protein in specific brain regions is associated with progressive death of neurons which causes clinical signs and symptoms unique to this disorder. The most recent consensus classifies PSP into several clinical subtypes (Table 1). However, the following four primary clinical signs are key features in a majority of cases, although they may not be present all at once in every patient:

Eye movement abnormalities

These are detected by a careful examination which can reveal difficulty shifting the eyes down when not moving the head. Patients may also complain of difficulty walking downstairs, double vision, blurred vision or light sensitivity, and frequent involuntary blinking or forceful closure of eyelids (or blepharospasm).

Unprovoked falls

Early in the disease course when turning, starting to walk or changing position; falls can occur in any direction, but falling backwards is suspicious for PSP.

Parkinsonism

A feature of PD which can be presented with slowness on one or both sides of the body, soft speech, reduced expression, and stiffness. However, a classic PD rest tremor is uncommon in PSP, and mobility does not show long-term improvement with Levodopa.

Behavioral, speech and cognitive problems early in the course:

impulsive and socially inappropriate behavior
apathy which can be misconstrued as indifference or lack of compassion
inflexibility of thought
laughing or crying out of context (also known as pseudobulbar affect)
difficulty following the steps in a task
stuttering speech with words running into each

APDA Announces Funding For 2020-2021 Research Grants

New, Innovative Parkinson’s disease Research Being Funded by APDA
For people impacted by Parkinson’s disease (PD) the search for answers – the causes, a cure, better treatments – may seem elusive, too slow, frustrating. But all of us at APDA will not give up our pursuit, and rather than be deterred, we are inspired, energized and hopeful about the progress that has been made. And we are particularly optimistic when we see the exciting new work being done by some of the brightest minds in PD and we are extremely proud to support these researchers with funding through our grant process.
Today, APDA announced our research grantees for the year ahead. Our grant recipients are working tirelessly to understand the complexities of PD in an effort to develop new treatments and eventually, a cure, and we are honored to support their work. This year APDA awarded $1.4 million in grants that will support a wide range of fascinating research. This year, we also awarded the first-ever APDA Diversity in
APDA Scientific Advisory Board Members
Parkinson’s Disease Research grant to help address the issues and disparities regarding PD in underserved populations – more info about this new grant below.
The APDA Scientific Advisory Board thoroughly vetted each application and chose these grantees very carefully. While the science can seem complicated and the medical jargon confusing, rest assured that this work is not only significant, but exciting as well. Below, I present the research proposals to you and point out why they are important.
Post-doctoral Fellowships
Post-doctoral fellowships are awarded to support post-doctoral scientists whose research holds promise to provide new insights into our understanding of PD.
April Darling, PhD
University of Pennsylvania School of Medicine
Engineering therapeutic TRIM11 disaggregases
Major question to be answered: Can we create a molecule that efficiently prevents and dissolves aggregates of alpha-synuclein?
Why is this important? Such a molecule could serve as a new therapy for PD.
People with PD have protein deposits in their brain (Lewy bodies) which are composed of accumulated α-synuclein. Preventing α-synuclein aggregation and dissolving pre-formed aggregates may be an effective strategy for treating PD. A class of proteins known as protein disaggregases have the ability to dissolve protein aggregates. One recently identified disaggregase is TRIM11. This project aims to find the most effective variant of TRIM11 at dissolving aggregates and preventing clumping of α-synuclein.
 
Judit Pallos, Ph.D.
Oregon Health and Science University
Mechanisms of LRRK2-induced neurodegeneration
Major question to be answered: How does the protein Prospero, which is known to be involved in outgrowth of nerve cell projections, contribute to nerve cell death in an animal model of PD?
Why is this important? This work will further our understanding of why nerve cell death occurs in PD which may identify new targets for therapy,
Degeneration of the axon (the long projection of the nerve cell that extends out from the cell body to communicate with other nerve cells) is observed in the cells of people with PD as well as in animal models of the disease. Here, the role of the protein Prospero, known to control neuronal outgrowth, will be explored

First-Ever Diversity-Focused Research Grant Among Fresh Crop of Grants Awarded by the American Parkinson Disease Association

First-Ever Diversity-Focused Research Grant Among Fresh Crop of Grants Awarded by the American Parkinson Disease Association
From Levodopa-induced dyskinesias to modeling Parkinson’s disease progression, $1.4 million in innovative research to be funded for 2020 – 2021 year
NEW YORK, NY – September 1, 2020 – The American Parkinson Disease Association (APDA) has just awarded $1.4 million to support cutting-edge Parkinson’s disease (PD) research for the 2020-2021 funding year. Investigating everything from deep brain stimulation to the genetics of PD, these researchers are among the most dedicated and innovative in the PD field. Grants have been awarded in the form of three Post-Doctoral Fellowships; five Research Grants; APDA’s first-ever Diversity in Parkinson’s Disease Research grant; and eight APDA Centers for Advanced Research. With someone diagnosed with PD every nine minutes, this research is critical as we push for better treatments and ultimately, a cure.
The new APDA Diversity in Parkinson’s Disease Research grant is the direct outcome of the first-of-its-kind Diversity in Parkinson’s Disease Research Conference hosted by APDA in May 2019. “The APDA Diversity in Parkinson’s Disease Research Conference explored the unique and urgent needs surrounding PD in diverse and under-represented communities” commented David G. Standaert, MD, PhD, John N. Whitaker Professor and Chair of Neurology at the University of Alabama at Birmingham, School of Medicine, and Chairman of APDA’s Scientific Advisory Board. “We are proud to award the first grant of this kind to encourage and support a researcher who is committed to diversity-focused research so we can learn more about how the disease affects different populations and ultimately better serve people with PD from all communities.”
All APDA grants are awarded through a competitive application process and reviewed by APDA’s Scientific Advisory Board (SAB) which is comprised of scientists with a wide array of backgrounds and expertise in all areas relevant to PD research. The SAB meets annually to review all grant proposals and set the scientific direction of APDA’s annual research investment. “APDA is steadfast in our research focus – identifying and supporting researchers early in their careers to encourage them to either commence or continue dedicating themselves to PD research, as well as to help established investigators pursue new and novel ideas” states Rebecca Gilbert, MD, PhD, Vice President and Chief Scientific Officer, APDA. “We are excited for these researchers to commit themselves to their work and have hope for meaningful outcomes that can make a difference for people living with PD.”
The 2020-2021 APDA Research Grants
 
APDA Diversity in Parkinson’s Disease Research Grant:

Chantale Branson, MD, Morehouse School of Medicine
Understanding racial demographics of Parkinson’s disease among African Americans

 
Post-Doctoral Fellowships are awarded to support post-doctoral scientists whose research holds promise to provide new insights into the pathophysiology, etiology and treatment of PD. This year’s awardees are:

April Darling, PhD, University of Pennsylvania School of Medicine
Engineering therapeutic TRIM11 disaggregases
Judit Pallos, PhD, Oregon Health and Science University
Mechanisms of LRRK2-induced neurodegeneration
 Monika Sharma, PhD, The Brigham and Women’s Hospital
Systems biology of a novel neuronal mitochondrial mechanism: relevance to Parkinson’s disease therapies

 
Research Grants are awarded to investigators performing innovative

The Future of Parkinson’s Disease Treatments

The Parkinson’s Disease Medication Pipeline
The pipeline for Parkinson’s disease (PD) medications is extremely crowded these days, with multiple medications at various stages of research development. This is very exciting news for the PD community and is a perfect example of the “hope in progress” part of our organization’s motto. It is thrilling to see the research that is underway, especially the potential treatments that have already made it to the clinical trial phase of development. However, this progress brings with it the welcome challenge of keeping track of all the potential compounds that are in research development! Recently, a review was published in the Journal of Parkinson’s Disease which cataloged the 145 compounds that are currently being studied in humans via clinical trials for PD. This is a staggering number and is even more exceptional when you consider the many more compounds that are not quite yet ready for human trials, but are currently being studied in the laboratory in test tubes, cell culture or animal models of PD. The number also does not account for compounds that have been studied in small clinical trials, garnered promising data, and will be studied in larger clinical trials in the near future – but are not being tested in clinical trials right now.

145 is a pretty long list, so we’re not going to cover all of them here. Instead we will examine the science behind some of categories of the disease modifying therapies (more on this below) that are currently being investigated as PD therapeutics in clinical trials, and I will aim to present highlights, not be comprehensive.  In future blogs, we will examine other categories.
Some background on the review
Of note, the review was authored by Kevin McFarthing, Susan Buff and Gary Rafaloff, (along with scientists at The Cure Parkinson’s Trust, a non-profit PD organization based in London, UK). McFarthing, Buff and Rafaloff are three people with PD who have each developed an exceptional knowledge of the current state of PD research and have been heavily involved in explaining that research to the PD community.
Types of medications to treat Parkinson’s disease
Medications in the research pipeline can be divided into two main categories: those that treat the symptoms of PD and those that are disease modifying (which means that they aim to slow down or halt disease progression). Of note, all medications currently available for PD are symptomatic treatments. There is no medication at this time that can affect the progression of the disease. Of course, the PD research community is extremely eager to find a medication that is disease modifying or neuroprotective (meaning it protects the nerve cells from damage or degeneration). There have been many attempts over the past number of years to demonstrate through clinical trials that particular compounds have neuroprotective effects but, to date, these attempts have not been successful.
If you are interested in getting involved in a clinical trial, Clinicaltrials.gov is a database of all clinical trials for all diseases worldwide. When a clinical trial is registered with

A Discussion with Parkinson’s Disease Care Partners

What does it mean to be a Parksinon’s disease care partner?

Being a care partner for someone with Parkinson’s disease (PD) is a whirlwind of challenges, responsibilities, setbacks and victories. It is a very difficult, but potentially very rewarding role. Knowing that many of you reading this are trying to navigate the complexities of being a care partner, we thought it would be helpful to  hear from others in your situation. If you haven’t already, you might find that reading our Becoming a Care Partner overview will be helpful as well.
For today’s blog, I spoke with three care partners to bring their unique perspectives to our readers who might be grappling with similar issues. Remember, every person with PD is different, their disease progression is different, and each care partner is different – so keep that in mind as you read on. But despite those differences, we think you will find helpful advice, bits of inspiration, and some solace in their stories. All names have been changed for privacy.
 
Q: What is the most gratifying part(s) of being a care partner for someone with Parkinson’s disease?
Ellen: We have developed a deeper connection and bond. I have also grown personally by taking an active role volunteering with APDA.
Gary: We live with Parkinson’s disease together. We are continually adjusting to this new norm. One priority is a daily exercise routine.
Brenda: I find that the most gratifying part of being a care partner is the intimacy that occurs in providing necessary care for someone you love.
 
Q: What is the most challenging part(s) of being a care partner?
Ellen: Staying patient and positive. It is difficult to know when to push him and when to back off.  I want to continue to challenge him, but it is sometimes difficult to know what he is capable of.
Gary: Anticipating my wife’s needs to keep her safe on a 24/7 basis…I can never let down my guard.
Brenda:  I would say there are three things that I find the most challenging: 1) Being responsible for EVERYTHING. I still have all my responsibilities from before PD and now I also have to do EVERYTHING my spouse once did. 2) Knowing that I cannot cure or stop my spouse’s disease and I can’t take away his pain. 3) The loneliness of my spouse’s unavailability to share and discuss issues – especially as the dementia increases.
 
Q: Do you get help from family, friends, neighbors?
Ellen: My husband is pretty self-sufficient, so I do not feel the need to ask for help at this point.  He is ambulatory but struggles with balance. Fortunately, he does not fall. He has had some mild cognitive decline and I worry most about that.
Gary: Yes, they are always available in any circumstance.
Brenda: Yes – we are blessed with WONDERFUL FRIENDS and some family members. They check in and do what they can.
 
Q: What keeps you going in the tough/challenging moments?
Ellen: Remembering to take a breath and physically give myself some space. I try to find some humor in moments. And

Planning for the What-Ifs: Sleep disorders in Advanced Parkinson’s Disease

Planning for the What-Ifs, Part Five: Sleep Disorders & Advanced Parkinson’s Disease
 Today we continue Parkinson’s Disease: Planning for the What-Ifs, a special series of posts to address both motor and non-motor issues of people with advanced Parkinson’s disease (PD). We are defining advanced PD as those who are no longer independent in their activities of daily living and require help for their self-care such as eating, bathing, dressing and toileting. Remember, PD is a very variable condition and many never reach the advanced stages. Additional background and the full introduction to the series is still available if you missed it.
In previous blogs, we’ve addressed the mental health issues in relation to advanced PD which include: cognitive decline/dementia, depression, anxiety, apathy, psychosis, mania and behavioral problems. We also addressed other topics of advanced PD including falls, extreme immobility, and drooling and swallowing difficulties and urinary and gastro-intestinal issues.
Today we will focus on sleep issues in advanced PD.
Sleep and Parkinson’s Disease
There are many sleep disorders that are associated with PD and that can be problematic throughout the disease course. These include:

Rapid eye movement (REM) behavior sleep disorder (RBD) – a sleep disorder in which the affected person is not paralyzed during dreaming (which is normally what occurs) and can therefore act out his/her dreams
Insomnia – an inability to fall asleep at the beginning of the night or in the middle of the night upon awakening
Restless leg syndrome – uncomfortable sensations, usually in the legs, which are temporarily relieved by movement of the legs
Sleep apnea – a disorder in which breathing stops and starts through the night, leading to periods of low oxygenation in the blood and frequent awakenings
Sleep fragmentation – brief arousals during sleep cause sleep to be less restful

PD medications can interfere with sleep by causing:

Nightmares and vivid dreams
Sleep attacks (falling asleep without warning)

Finally, there are motor and non-motor symptoms of PD that interfere with sleep. These include:

Anxiety
Hallucinations
Urinary frequency
Pain
Tremor
Stiffness

In addition to all the sleep issues listed above, people with PD often have fatigue, a complicated non-motor symptom of PD, characterized by a general lack of energy, which is sometimes present even in the face of what seems like intact and restful sleep. This can be due to many causes including PD medications, but can also be independent of medication use.
All of these sleep issues can continue to be problematic for the person with advanced PD. In addition, an extreme form of fatigue, or excessive daytime sleepiness (EDS), can develop. EDS is defined as an inability to maintain wakefulness during the waking day which leads to lapses into drowsiness or sleep. Care partners often report that the person with PD will sleep for large parts of the day and care partners are not sure whether or how to intervene.
Possible causes of Excessive Daytime Sleepiness:

Poor nighttime sleep – all the sleep disorders and PD symptoms that interfere with sleep that were mentioned above can lead to non-restorative sleep at night. This can in turn lead to an overwhelming urge to sleep during the day
Medication side effect (both

Staying Connected While Social Distancing

Staying Connected While Social Distancing

Challenges often force us to adapt and learn new ways of doing things. No one knows that better than people living with Parkinson’s disease (PD).

Facing new challenges

As COVID-19 became a reality and communities implemented social distancing guidelines, the American Parkinson Disease Association (APDA) faced some significant challenges. All of our in-person programs that help keep people supported, healthy and informed could no longer take place. How could we continue to serve and stay connected to the PD community?

Jumping into action

In addition to hosting our first-ever Facebook Live, APDA created a new a weekly series of Q&A sessions, called “Dr. Gilbert Hosts,” addressing topics related to COVID-19; developed a fitness-focused series called “Let’s Keep Moving with APDA” to help people learn how to exercise safely at home, and much more.

According to Rosa Peña, Senior Director Programs and Services Field Operations at APDA, local Chapters quickly moved support groups online or connected by phone. They also sent out weekly emails to constituents with updates about COVID-19 and ongoing programs.

Making a tangible difference

This pandemic has impacted people in so many different ways, but for someone living with PD it can be especially frightening. We received a call from a Spanish-speaking gentleman who lost his medical insurance when his wife was laid off from the service industry. He needed a refill on his PD medication. After several phone calls to urgent care facilities and pharmacies, APDA was able to get him his medication and relieve some of the stress he and his wife were feeling.

Innovation and creativity

All across the country, thanks to your support, APDA Chapters found ways to keep people healthy and active despite stay-at-home orders, including free online yoga classes, improv classes, online singing programs and more. “We immediately jumped into action and contacted all of our support group leaders to help them transition to a virtual format so attendees could still feel connected and supported,” said Jennifer Gillick, Program Director, APDA Northwest Chapter.

Looking to the future

While there’s no substitute for in-person gatherings, Peña pointed out that virtual programs will continue even when social distancing restrictions are lifted. Bill Patjane, Executive Director, APDA Massachusetts Chapter, added: “The transition from in-person to virtual programs did help us to think about how we can expand the reach of many great offerings, like yoga, tai chi, and professionally-led support groups into homes and communities that haven’t always had access to our programs and services in the past.”

One of the most important takeaways for all of us is that being at home doesn’t mean being alone. APDA is here for you no matter what. “You can call us if you are having a challenging moment and we’ll see what we can do for you… We’re in it together, it’s going to get better,” says Peña.

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What’s Happening at APDA

What’s Happening at APDA

A Facebook First

Just as many of you have been learning how to work from home, connect virtually, and figure out new ways to get things done, APDA has been doing the same! We knew we had to find different ways to stay connected, so to get things started we hosted our first-ever Facebook LIVE Q&A as a new way to bring information directly to you.

Coming to you from their homes, APDA President & CEO Leslie Chambers and our Chief Scientific Officer Dr. Rebecca Gilbert hosted a virtual discussion and answered people’s questions about COVID-19 and PD. The recorded session is available here along with the additional virtual Q&A programs we have conducted since then. We encourage you to check them out.

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