Boxing for Parkinson’s Disease

Boxing and Parkinson’s Disease
We know without a doubt that exercise is important for people with Parkinson’s disease (PD).  Various types of exercise and movement can help people improve their balance, strength, mobility, flexibility, endurance and walking ability. Studies also reveal that exercise can help improve cognition, depression, fatigue, and sleep. We have discussed exercise in previous blogs and go into great detail in our Be Active & Beyond exercise guide. We’ve also shared tips for exercising safely while at home during the pandemic. We often get questions about boxing as exercise for people with PD – especially about Rock Steady Boxing, a specific type of boxing class for people with PD that is offered around the country. For today’s blog we’ll share a bit more info about Rock Steady Boxing and get input from two experts on the topic so you can decide if this type of class is right for you. Note: Not every boxing-style class designed for people with PD is a Rock Steady Boxing class. There are some independently-run classes that are not affiliated with Rock Steady. For the purpose of this blog, we are specifically discussing the Rock Steady Boxing program.
What is Rock Steady Boxing?
Rock Steady Boxing is a boxing program designed for people with PD, based on exercises that are adapted from the world of boxing that emphasize agility, speed, endurance, accuracy, hand-eye coordination, footwork and strength. The exercises are meant to be vigorous and to push the participants beyond what they perceive they are capable of performing.  Various levels of training have been developed to meet the needs of people with PD at different stages of the disease.  Started at a gym in Indiana in 2006, Rock Steady Boxing developed a system to train fitness instructors across the country and now operates out of more than 870 affiliate locations worldwide. Those interested (personal trainers, physical therapists, boxing coaches, long term care facility staff, etc.) undergo a two-part Affiliate Training Camp — an online course, followed by an interactive in-person or virtual-based hands-on training. Trained personnel can then set up an affiliate Rock Steady Boxing program.
Rock Steady Boxing in the medical literature
Although there is a lot of anecdotal evidence that promotes Rock Steady Boxing, there have only been two small trials that sought to examine the clinical benefits of Rock Steady Boxing. In one study, 31 people with PD were assigned to either a boxing exercise training or traditional exercise for 24-36 sessions, each lasting 90 minutes over 12 weeks. Participants were tested before and after completion of training on measures of balance, balance confidence, mobility, gait velocity, gait endurance, and quality of life. Although the researchers state that their original hypothesis was that boxing would lead to greater improvements than traditional exercise, the study did not bear that out. Both groups demonstrated gains on multiple measures. No outcome measure demonstrated a significant difference between groups except for balance confidence which favored the traditional exercise group. Despite the fact that boxing was not shown to be better than traditional

Is a vaccine for Parkinson’s disease possible?

As the world awaits an effective vaccine for SARS-CoV2 (the virus that causes COVID-19), vaccines and vaccination are at the front and center of the news and in our minds.
A vaccine is a substance that is introduced into the body in order to stimulate the immune system to provide protection against a particular disease.
Did you know that many pharmaceutical companies are working on vaccinations as a treatment for Parkinson’s disease (PD)?  It is important to note that while a vaccine is not imminent, each clinical trial and study that is underway is teaching us something new and important that will hopefully get us closer to a successful outcome. Even the projects that fail offer us substantial learnings that can be applied to future research efforts in this area.
People with PD have protein deposits in their brain (Lewy bodies) which are composed of accumulated α-synuclein. Preventing alpha-synuclein aggregation and dissolving pre-formed aggregates (or clumps) may be an effective strategy for treating PD.
Two related strategies have been devised in order to protect against this accumulation:

Introduction of antibodies to alpha-synuclein into the body, also known as passive immunity
Introduction of a molecule that induces the body to produce its own antibodies against alpha-synuclein, also known as active immunity

The theory is that in both scenarios, the antibodies to alpha-synuclein (either introduced directly or created by the body) would bind to clumped alpha-synuclein and aid in their removal. Let’s look at these scenarios in more depth.
Alpha-synuclein antibodies (passive immunity)
There are multiple research efforts underway to create and test antibodies against alpha-synuclein.
The prasinezumab antibody
This antibody was studied in a Phase 2 trial called PASADENA, with 316 participants, all with newly diagnosed PD who had mild symptoms and were not on any medication for PD. The trial was double-blinded and placebo controlled which means some people received the drug and some did not, and neither the participants nor the researchers knew which group anyone was in.
This trial has been completed and the data has been analyzed. As happens sometimes in research, it unfortunately did not meet its primary endpoint (the original goal which was stated at the outset as the definition of success of the trial). The primary end point for the trial was an improvement over the course of the year in the total Movement Disorder Society-United Parkinson’s Disease Rating Scale (MDS-UPDRS). This scale has four parts. The first two are filled in by the patient or care partner and assess the motor and non-motor symptoms of PD from the patient’s perspective. The third part is a scale that reflects the motor examination performed by the clinician during the office visit. Part four captures historical and objective information about motor fluctuations and dyskinesias. The trial did not show any difference in the total MDS-UPDRS after one year between those receiving the antibody and those who did not.
It did, however, succeed in meeting some of its secondary endpoints (outcomes that were also determined at the start of the trial, but thought to be of lesser significance than the

Update on COVID-19 and Parkinson’s disease

Latest Research on COVID-19 & Parkinson’s disease
UPDATE: This post (originally published in June) has been updated with the latest information available.
We will continue to keep this post up-to-date as new information develops.
As citizens of the world, we all continue to grapple with the COVID-19 pandemic. And as members of the Parkinson’s disease (PD) community, we continue to have specific concerns about COVID-19 and how it relates to PD. There is so much information out there, some of it misinformation, so it is important to rely on credible, trusted sources. In this post, I will cover the latest information (as of the date this was published) that investigates the relationship between PD and COVID-19.
What the research data tells us
Over the past eight months, physicians and scientists with expertise in PD have gathered their preliminary data on the experience of people with PD with COVID-19. These findings have been published in journals for others to learn from. This type of work is not unique to PD of course. Physicians are collating the data on how COVID-19 affects different people with the entire array of human conditions.
The data falls into two general categories:

Data regarding the lived experience of people with PD during the era of the pandemic COVID-19 (meaning the effect of the COVID-19 situation at large on their lives, not the effects of having contracted the virus)
Data regarding people with PD who have contracted COVID-19

Studies that investigate the relationship between PD and COVID-19

A study of anxiety during the pandemic was conducted in Iran. Patients with PD were asked to fill out questionnaires to rate their levels of anxiety. Questionnaires also contained questions related to PD and COVID-19. Data was collected from patients, caregivers and controls. The study showed that:

Levels of moderate and severe anxiety were significantly increased in PD patients over caregivers or controls.
20% of patients that were polled felt that the COVID-19 pandemic exacerbated their PD symptoms.
12% increased their PD medication use during the pandemic.

A study of the impact of the COVID-19 lockdown on PD patients was conducted in Egypt. Patients from the movement disorders clinic were assessed over the phone. The study demonstrated that:

Compared to controls, PD patients had significantly increased levels of stress, depression and anxiety along with decreased measures of quality of life, as compared to controls.
PD patients also reported a significant decline in physical activity as compared to pre-lockdown.

Two movement disorders groups – one in London and one in Italy – published a case series of 10 patients with advanced PD symptoms and COVID-19. The average age of the group was 78 with a 12-year duration of disease. The study showed that:

Most of the group that was studied required additional levodopa during their COVID-19 infection.
Anxiety, fatigue, orthostatic hypotension, cognitive impairment, and psychosis worsened during the infection.
Four patients (40%) died.
The case series was not large enough to statistically determine if risk of death is increased in people with advanced PD over other patients of the same age.

Another study took a different approach and did not report on the known cases of

Peripheral neuropathy and Parkinson’s disease

Today I will address the potential link between Parkinson’s disease and a common neurologic condition called peripheral neuropathy. This topic was submitted via the Suggest a Topic portal. I am grateful for your suggestions so please continue to let us know what you’d like to learn more about!
In order to understand what peripheral neuropathy is and what symptoms it can cause, we will briefly review the components of the nervous system.
Central nervous system vs. peripheral nervous system
Neurologic control of the body is very broadly divided into two systems – the central nervous system which consists of the brain and the spinal cord – and the peripheral nervous system which consists of the network of nerves that are outside the brain and spinal cord, and innervate the limbs and the organs of the body.
The peripheral nervous system is composed of three types of nerves: autonomic nerves, sensory nerves and motor nerves. Different types of nerves have varying diameters and are generally divided into those that are small and those that are large.

Autonomic nerves exert control over functions that are not under conscious direction such as respiration, heart function, blood pressure, digestion, urination, sexual function, pupillary response, and much more. This information is conveyed on small fibers.
Motor nerves carry information on limb movement from the brain and spinal cord to the limbs. This information is conveyed on large fibers.
Sensory nerves carry information on the various sensations felt by the limb to the brain and spinal cord. There are two main types of sensory nerves:

Pain and temperature fibers which are small fibers
Vibration and joint position sense fibers which are large fibers

The peripheral nervous system and Parkinson’s disease

It is well-established that the autonomic nervous system can be significantly affected in PD causing symptoms such as constipation, urinary dysfunction and orthostatic hypotension. The autonomic nerves that bring signals to the gut for example, can be directly affected by Lewy body-like accumulations and neurodegeneration. (This is not the only way that automatic functions of the body are affected in PD however. There can also be Lewy bodies and neurodegeneration in the parts of the brain that control these functions.)
What remains unclear is if motor and sensory nerves are also affected in PD.
What is peripheral neuropathy?
Peripheral neuropathy (PN) is a condition in which there is damage to peripheral nerves. Symptoms depend on which type of nerves are affected and can result in:

Imbalance with walking
Pain or paresthesias (sensations such as burning or tingling) in the limbs

The legs are more commonly affected than the arms because the nerves to the legs are longer than the arms and therefore more prone to damage.
Symptoms of peripheral neuropathy
The symptoms of PN can be non-specific, and a person therefore may not be able to distinguish on their own whether his/her symptoms are due to PN or another condition. PN, however, often results in specific findings on a neurologic exam, such as decreased sensation to pin prick or vibration or the lack of ability to discern which way a toe is being pointed without looking.

Drug-induced parkinsonism

I’m so thankful to those of you who submit potential topics for my blog as it helps me understand what you would like to know more about. A frequent topic that I am asked about is symptoms of Parkinson’s disease (PD) that are caused by medications. So today, I will address drug-induced parkinsonism.
Common symptoms of drug-induced parkinsonism
The motor features of PD are often (but not always) very easy to see via a neurologic exam in a doctor’s office. Rest tremor (which is a tremor that goes away with movement, but often returns when the limb is at rest) for example, is seen in virtually no other illness and can therefore be very important in diagnosing PD. But there is one other common condition that induces the symptoms of PD, including a rest tremor, which must be considered every time PD is being considered as a diagnosis, and that is drug-induced parkinsonism.
Parkinsonism is not technically a diagnosis, but rather a set of symptoms including slowness, stiffness, rest tremor, and problems with walking and balance. This set of symptoms can be caused by PD, but also can occur as a side effect of certain prescription medications (that have nothing to do with PD).
A number of medications can cause parkinsonism because they block the dopamine receptor and thereby mimic the symptoms of PD that are caused by loss of dopamine neurons in the brain. Reviewing a patient’s medications is therefore a critical step for a neurologist when seeing someone with parkinsonism. Anti-psychotics and anti-nausea treatments make up the bulk of the problematic medications, although there are other medications that can also cause parkinsonism. The primary treatment for this type of parkinsonism is weaning off of the offending medication, if possible.
For some people, it is not possible to stop the problematic medication. For example, some people with bipolar disorder or schizophrenia have tried multiple medications to control their mental health issues and the one that works best also causes parkinsonism. In these difficult situations, some amount of parkinsonism might be tolerated in order to maximize the person’s mental health. This is a tricky clinical situation, and one that typically requires the psychiatrist and neurologist to work together to optimize the circumstances.
The connection between PD and drug-induced parkinsonism
In addition to potentially causing parkinsonism in the general population, these medications should definitely be avoided in people who have parkinsonism from other causes, such as PD. APDA has created a list of Medications to be Avoided or Used With Caution in Parkinson’s Disease. It is important to note that there are anti-psychotics and anti-nausea medications which do not cause parkinsonism and can be used safely by people with PD.
Sometimes, a person without a diagnosis of PD is prescribed a medication which leads to a side effect of drug-induced parkinsonism. The prescribing physician may stop the new medication, but the parkinsonism does not resolve. The patient remains off the medication with continuing symptoms, and eventually is given a diagnosis of PD. In this scenario, that person most likely had dopamine depletion in the brain (prior

Want to Join A Virtual Support Group?

If you would like to attend a support group while staying safe at home, we can help! The Coffee Break Support Group is meeting every Wednesday at 10 a.m. Eastern via Zoom. If you would like to join the discussion, do some exercise with the group or just make some new acquaintances in the PD Community, email and let us know. We will set you up!
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Highlights From The Movement Disorders Society Virtual Congress 2020

Every year the International Parkinson and Movement Disorder Society (MDS) holds a conference and every year APDA is there, learning about the newest research and sharing our resources with the wider PD community. The MDS Congress is the preeminent gathering of medical professionals from around the world who are dedicated to Parkinson’s disease (PD) and other movement disorders.  So much fascinating information is shared at the Congress that each year we report back to our readers about what we have learned. You can read our recaps from 2018 and 2019 to learn more.
This year the world has been turned upside down due to the COVID-19 pandemic, and an international conference that typically brings together thousands of people from dozens of countries around the world, was not possible. And much like many other in-person gatherings, this one went virtual.  It was a great accomplishment to conduct such a massive meeting on a virtual platform, and it was very exciting to be a participant in that inaugural event.
The event consisted of scientific talks as well as abstracts, or brief reports of new research.
Highlights from the Research Presented
Here are my highlights from the research abstracts presented at the first-ever MDS Virtual Congress 2020 along with a comment about why each project is important. It was interesting to see several COVID-19-related research projects presented.
Neurological manifestations of COVID-19 in Parkinson’s disease (Agarwal, P. et al)
The abstract reported neurologic manifestations in seven patients with Parkinson’s disease (PD) and COVID-19. Among this cohort, it was common to present with neurologic symptoms such as increased confusion. One patient presented with falls and worsening of tremor, which was initially attributed to progression of PD. Two of the patients died and five recovered to their baseline.
Take home message: It is important to recognize neurological manifestations of COVID-19 in PD patients in order to correctly identify and treat COVID-19 in this population. (Learn more about research related to the intersection of PD and COVID-19.)
Utility of deep brain stimulation remote programming for Parkinson’s disease during the COVID-19 outbreak (Zhang C. et al)
SceneRay, a medical device company based in China developed a deep brain stimulation (DBS) system that enables remote programming. The system allows the physician to change the DBS parameters of an individual’s device from a remote location. This technology is not available yet in the US. This abstract described the experience of practitioners using this technology in six centers in China both before and during the COVID-19 pandemic.
Take home message: Physician adjustment of DBS parameters remotely is available in some parts of the world (and hopefully will be available in the US in the future). Because of its convenience, it can be very helpful for patients who might have trouble getting to the doctor in person, especially during the COVID-19 pandemic.
UCB0599 transition to the clinic: An orally available brain-penetrant inhibitor of alpha-synuclein misfolding in Phase I development for Parkinson’s disease (Smit JW at al)
As explained in a recent blog, targeting of misfolded alpha-synuclein is one of the prime targets for

Ask the Doctor Q&A

Ask the Doctor Q&A
Q: I have PD. Now that the country is “opening up”, what should I do? Should I start to venture out or continue my current practices of staying at home and only going out for walks if I can safely stay six feet away from others?
A: Various states are creating plans to “reopen” as the rate of new cases of COVID-19 slows down. (It should be noted that in some places in the US, new cases are not slowing, yet reopening is taking place anyway.)  It is important to reiterate that the risk of a complicated course of COVID-19 is not the same for everyone. People who are over 65 and have underlying medical conditions will continue to need to be careful even if their city is opening up. Small studies from around the world are examining whether PD is an underlying medical condition that increases the risk factor for worsened COVID-19. For those with advanced symptoms, the answer seems to be yes. For those with mild symptoms, the jury is still out. The PD community will therefore have to be more careful than the general population as we ease back into “normal” life. If you must be in a situation in which there are other people around, wearing masks and staying more than six feet away are important, and don’t forget to wash your hands frequently. These measures reduce (but do not eliminate) the risk of transmission and should continue even if others around you are not complying.
Q: Since my diagnosis of PD in 2014, my eyesight has been affected in a number of ways. One thing I now have trouble with is following the ball when I play golf. I try to focus on the ball, but I can feel my eyes lose their focus. Is this related to PD? Is there anything I can do about it?
A: I wonder if the problem is what we call convergence insufficiency – you are able to see the ball at a distance, but not when the ball is closer to you, because your eyes don’t work together to see close objects. Ask your neurologist for a referral to a neuro-ophthalmologist who can test for this and other eye movement conditions. Sometimes prisms in your glasses can help with this problem.
Q: My husband has had PD for 14 years and recently started to have sudden falls, where he crumbles to the floor. They are very scary for me to watch, but he seems to quickly be OK once he is on the floor. What could be going on?
A: Sudden falling could be due to a number of issues and your husband definitely needs a complete medical evaluation to figure out what is going on. One possibility is that he is experiencing drops in blood pressure as he is walking, which is a common non-motor symptom of PD. Talk with his neurologist about what is going on because this problem needs to be solved quickly. Sudden falls can cause

Share Your Parkinson’s Story

Share Your Parkinson’s Story
When it comes to Parkinson’s disease (PD) and the estimated 1 million people in the U.S. living with it, a story can make a world of difference. Your shared story helps raise awareness and can provide support to someone recently diagnosed who is perhaps unsure or afraid of what is to come. And it can provide hope and camaraderie to the care partner who is struggling to balance it all. One story can touch dozens, even hundreds of people.
You can make a difference
That’s why the American Parkinson Disease Association (APDA) has made it easier than ever for YOU to share your Parkinson’s story. Click here to view stories shared by others and use our new story-sharing tool to add yours. By adding your story of optimism, together, we can help people look closer at those affected by PD and see that there is so much more to a person than just their PD diagnosis.
Stories of hope
Here are just a few of the stories you’ll see in our Story Gallery.  Juanita, who praises the power of her support network, says, “Just knowing that my friends and family love and support me… every day… gives me a reason to fight every day.”
 Kermit, says, “Rather than withdrawing and feeling depressed, I made it a goal to engage life more – living each day to the fullest, embracing and savoring every moment, and surrounding myself with people who nourish me.” Allyssa, who started dancing at age 38, was inspired to get trained to teach classes for people with PD and states, “I have been so humbled at the drive and determination of my students.” She adds, “My students are truly the light of my life.” Brian is an avid cyclist and swimmer despite living with PD the majority of his life. His optimism is inspiring.
He states, “We can accomplish anything if we just try. Everybody’s journey with PD is individual. And what works today may not work tomorrow. We must keep looking for answers that work for us.”
People want to hear your story
Whether you’re living with PD or you’re a care partner, friend, family member, or even a medical partner, we hope you’ll let the world know what inspires your #PDOptimism.
Once your story is published, our new story-sharing tool makes it even easier for you to share your published story with your friends and community through Twitter and Facebook.
We hope you’ll join us in establishing a bold, optimistic, and authentic library of voices today. We know every story is powerful and we can’t wait to read yours.
Your shared story helps raise awareness and can provide support to someone recently diagnosed who is perhaps unsure or afraid of what is to come.
Create your own story
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A Message From Our CEO & President

A Message From Our CEO & President
Dear Friend,
For so many, this past year has been full of uncertainty and change. The COVID-19 pandemic has been disruptive in so many ways – but it’s thanks to your support that APDA has remained a constant resource for so many.
As you may already know, 60,000 people in the U.S. are diagnosed with PD each year, and this year, that diagnosis may have felt especially daunting since many have also been grappling with quarantining at home, concern about potential COVID-19 risks for people with PD, and/or trying to figure out how to see a doctor during a pandemic. But with your help, APDA has been providing the care and resources that help people with PD move forward and live life to the fullest. For that, I am so grateful.
In this issue of Insights, you will learn more about what APDA has done to ensure that people with PD can depend on us and will continue to receive the support, education, and research that will help them live their best life. Together, we have created a wealth of virtual programs and informational sessions to keep people with PD and their families informed, engaged, and supported. You will also learn about the inspiring stories of people with PD and how your story can make a difference.
As you read, please know that our work would not be possible without you. With your support, there is no limit to what we can accomplish.
Leslie A. Chambers President & CEO American Parkinson Disease Association
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