Tips for Daily Living

How 6 Social Workers Are Helping People with Parkinson's

Six social workers for social work month

Many people don’t realize just how much a social worker can help them because the profession is so diverse. Social workers can be found in many settings including hospitals, mental health care facilities, long-term care facilities, veteran centers and non-profit organizations. Although there are many kinds of social work, members of the profession all share common core values such as service, social justice, worth of the person and the importance of human relationships.

When it comes to living with Parkinson’s disease (PD) or helping a loved one, social workers can often provide counseling in clinics, leading support groups, engaging in research and more. 

March is Social Work month. In celebration, we are highlighting social workers who break barriers in the PD community and how they can help you navigate Parkinson’s:

1. Social workers connect you to community resources.

Emily Hall headshot

As the Southeast Parkinson’s Disease Research, Education, & Clinical Centers (PADRECC) Senior Social Worker at the Central Virginia VA Healthcare System, I break barriers in the Parkinson’s community by trying to connect the VA and available community resources for our veterans and their caregivers to ensure that any and every resource is being utilized to address their whole health needs. 

As part of our Interdisciplinary Clinic Care Team, I work to address any psychosocial barriers that may be impacting the veteran’s ability to participate in any of our team’s recommended medical or therapeutic services. We assist with addressing barriers to care by completing assessments for utilization of VA-issued iPad devices to bring therapists into the home for those unable to afford their own smart-devices and have difficulty leaving the home for face-to-face appointments.

–  Emily Hall, LCSW, Southeast PADRECC Senior Social Worker, Central Virginia VA Healthcare System

Read More: Veterans & Parkinson’s

2. Social workers help ensure that your voice is heard in Parkinson’s research.

Lance Wilson headshot

As the social worker, education and outreach coordinator for Jefferson Health's Parkinson's Disease and Movement Disorders Center, I break barriers by ‘showing up’ and amplifying the voice of individuals who are not in the room.

I recently had the opportunity to serve on a Patient Advisory Board where I was able to make sure those missing from the table had an advocate to keep them in mind as policy and programming was being created. Working with this population directly grants me the privilege to hear from those impacted by Parkinson's care and hear what they feel is most important, and I get to bear witness and advocate on their behalf.

– Lance M. Wilson, MSS, LSW, C-SWHC, ASW-G, Social Worker / Education & Outreach Coordinator, Jefferson Health's Parkinson's Disease and Movement Disorders Center

Visit our Join A Study page

3. Social workers provide ongoing support through palliative care. 

Adriana González headshot

When the opportunity came to start a neuro-palliative clinic, I was quickly on board and ready to work in collaboration with a neuro-palliative physician to meet the ongoing needs of people living with Parkinson's disease. By walking this PD journey alongside them we could be that extra layer of support to help them avoid crisis.

As a team made up of a physician, social worker, chaplain, and nurse case manager, we worked together to break the barrier of fear around "palliative care" and brought some peace to many of the anxieties experienced by people with Parkinson’s. Utilizing the palliative care lens enabled us to have difficult conversations, support families in documenting their wishes to ensure quality of life all the way through to their end-of-life experience.

– Adriana González, LCSW, Parkinson & Other Movement Disorders Center, UC San Diego Department of Neurosciences

Read More: Planning Ahead

4. Social workers organize and lead support groups.

Haejin Ban headshot

As Director of Care Lift Corp, which provides advocacy, education and support for care partners, I break barriers in the Parkinson's community by connecting people with Parkinson’s and their care partners whose first language is not English with Parkinson's Foundation programs and resources. Care Lift has monthly support groups in Korean for the people with Parkinson's and their care partners — in-person in Metro Atlanta and virtually nationwide.

– Haejin Ban, LMSW, Parkinson’s Foundation Ambassador; Director, Care Lift Corp

FIND LOCAL RESOURCES: CONTACT OUR HELPLINE

5. Social workers help plan educational programs about Parkinson’s. 

Elaine Book headshot

Sometimes barriers exist because of unintentional ignorance of facts...a lack of information or knowledge. To me, part of breaking barriers as a social worker is done by increasing awareness. Next month, our team will be holding an awareness event in our center, educating people about PD as well as highlighting what the person with PD and their families can do to achieve wellness while living with PD. Breaking barriers to live a full life!

– Elaine Book, MSW, RSW, Clinic Social Worker, Movement Disorders Clinic, Djavad Mowafaghian Centre for Brain Health, Pacific Parkinson's Research Centre

Explore our in-person and virtual events

6. Social workers create programs for special populations within the Parkinson’s community.

Lissa Kapust headshot

As the coordinator of WellnessWorks programs at the Center of Excellence at Beth Israel Deaconess Medical Center, I break barriers by creating and launching programs for people with PD and care partners that go beyond the pill bottle. A recent Parkinson’s Foundation-funded program, “Parkinson’s Pride” reached out to individuals identifying with the LGBTQ+ community who have Parkinson’s, offering an opportunity to share experiences, network with others around the country and learn about resources. 

One participant described “Parkinson’s Pride” as a powerful, “life-changing” experience. Parkinson’s Foundation community grants provide a yearly challenge for me to think outside the box, to dream about bold programs and then have the good fortune to implement them. 

– Lissa Kapust, LICSW, Health and Wellness Program Coordinator, Palliative Care Champion, Parkinson’s Center of Excellence at Beth Israel Deaconess Medical Center

Read More: LGBTQ+ & Parkinson’s

Learn more about how social workers can help you navigate a new Parkinson’s diagnosis in our podcast episode, How Social Workers Can Help Ease Anxiety About the Unknown.

Videos & Webinars

Newly Diagnosed: Living Your Best Life with Parkinson’s

The Newly Diagnosed webinar will discuss how each newly diagnosed patient is different from another. In this webinar we will discuss the assessment and awareness necessary as a provider to understand each unique patient’s background, life stage, and social status in order to deliver the most optimal support. We will discuss the palliative care model in Parkinson’s disease as well as the interdisciplinary approach and initiating at time of diagnosis. This provides not only support to the patient but can help prevent caregiver burden and strain.

Speaker

Jenna Iseringhausen BSN, RN
NYU Langone Marlene and Paulo Fresco Institute for Parkinson's and Movement Disorders
Parkinson’s Foundation Center of Excellence

Raise Awareness

8 Questions You’ve Always Wanted to Ask a Physical Therapist

Jenny Wilhelm and group at walk

Did you know that physical therapy can help delay the progression of Parkinson’s disease (PD) symptoms? Jenny Wilhelm, PT, DPT, NCS, is a physical therapist at Oregon Health and Science University, a Parkinson’s Foundation Center of Excellence. We asked Jenny the most frequently asked questions about Parkinson’s disease and physical therapy.

What is the difference between physical therapy and exercise?

Exercise is a tool that physical therapists use to treat people with Parkinson's disease. Exercise can take several different forms such as aerobics, strengthening, stretching and balance.

Physical therapy can help you design an exercise program that will benefit you personally. In addition to the movement symptoms addressed by exercise, physical therapy can also improve your non-movement symptoms such as pain, low blood pressure and bladder or bowel problems. We teach people with Parkinson’s life strategies so they can stay safe at home, and we also train care partners to help support their loved one with PD.

How can physical therapy benefit people with Parkinson’s disease?

I would give my hats off to occupational therapists first, for teaching people with PD how to adapt their behavior and how to move. Physical therapists are next in line in helping with activities of daily living: getting on and off the toilet, sitting down and standing up from the couch and getting in and out of bed.

Physical therapy can help people with Parkinson's throughout the stages of the disease. Early on, we educate clients about the types of exercises that might be most effective for them. Later in PD, the physical therapist can help problem solve and make modifications to address new or changing symptoms. We help people with Parkinson’s adapt to everyday life scenarios in a way that is easier, safer and more enjoyable.

Is seeing a physical therapist who specializes in movement disorders more effective than seeing a general physical therapist?

In a perfect world, all people with Parkinson’s disease would be seen at a Center of Excellence by an interdisciplinary team. Research has shown that people with PD do better if they see someone who knows a lot about Parkinson’s.

For people who live in rural areas, however, it may be difficult to find a physical therapist who specializes in Parkinson’s. If you do not have access to a PD specialist, try to see someone who at least knows neurological physical therapy. Or you could try virtually seeing a physical therapist who specializes in Parkinson’s. Even if you only check in with this person a few times per year, their guidance will help with your overall symptom management.

Why did you become a physical therapist?

The story of how I became a physical therapist is a little unique. I've always been interested in research. I started doing research at the University of Nebraska when I was 16. Then I grew into basic neuroscience research but as I was doing that, I really missed people. I ended up in physical therapy for myself for a low back injury, and it seemed like a good fit.

I got into physical therapy school, and my combined interest in physical therapy and neuroscience led me to specialize in neurological conditions.

Can you share a feel-good story about helping people with PD?

Last year, I supported a van full of people who were doing a 130-mile relay race to raise awareness for Parkinson’s. I met with half a dozen people with Parkinson's (most of whom I had never met before) and assessed them on their symptoms and ability to walk two legs of a relay, to help them finish this race successfully.

During the race itself, we encountered some obstacles due to various PD symptoms. I had to get out of the van and massage someone’s foot at 2 a.m. because her dystonia was so bad that she couldn't walk. I had to help someone with gait training because they were pushing themselves and walking fast. I had to help hydrate someone who had low blood pressure. Despite these setbacks, however, everyone was determined to complete the race.

The important thing is that we were able to successfully support this team and get them across the finish line. I think the experience was empowering for this small group of individuals. The hope is that their success can inspire other people to step up to the challenge and raise awareness for Parkinson’s.

What do you do to manage the stress of your job?

I'm a part of a huge team, which is super helpful. In clinic, I work primarily with people with Parkinson's, but I see patients who are living with all neurological diseases. With PD, I have such a functional team that it makes a huge difference in being able to treat patients effectively. When there are issues, I can lean on other people to help me through problems that I might be having.

I am also a big fan of vitamin N: nature. My family and I do a lot of outdoor activities — being outside is my biggest stress management tool.

Is it ever too late to start physical therapy?

It is never too late to start physical therapy. People with PD may want to see a physical therapist for numerous issues throughout the course of the disease. I see a lot of people who have back pain or shoulder pain. They may not be coming to me directly because of Parkinson's, but I can help address their pain issues so they can continue to exercise.

Ideally, you would begin seeing a physical therapist shortly after diagnosis. But even if you are in the late stages of PD, there are still ways that physical therapists can help you move better and improve your quality of life.

If you have not yet seen a physical therapist, talk to your movement disorders specialist or neurologist to get a referral.

What is one takeaway the PD community should know about physical therapy?

I have never seen someone living with Parkinson's with an issue that physical therapy can't address. No matter what stage of PD you are currently in, there is a role for physical therapy to make your life a little bit easier.

For help finding a physical therapist near you, contact our Helpline at 1-800-4PD-INFO (1-800-473-4636).

My PD Story

Sara Romeo on a walk
People with PD

Sara Romeo

A while back, I started to notice a difference in my body. After a two-year search to identify and diagnose my symptoms, I finally got a confirmed diagnosis of Parkinson’s disease (PD) in September 2021. This diagnosis was not unexpected, as my older brother had passed away with Parkinson’s five years earlier. My brother had lived with PD for more than 30 years, and he introduced me to the Parkinson’s Foundation.

After I received my diagnosis, I immediately began to search for a gym where I could get out of the house and get some exercise. I was in touch with the Jewish Community Center in Tampa but had not yet joined any of their programs. By the end of September, I became a member of the Jewish Community Center’s Philip Shayman Parkinson’s Program and began the Rock Steady Boxing class immediately. I was not sure I could even participate in exercises due to my low energy, lack of strength and tremors.

Sara Romeo at a picnic gathering

The first person I met in the boxing class was Sam Scaff, a volunteer who was coaching the class about boxing techniques. Sam is a retired heavyweight boxer who had boxed professionally. He was instructing the class on boxing techniques designed to help with agility, strength and balance. Sam had been volunteering for this class for over three years and felt it was a calling for him, even though he does not have PD himself.

When I started the class, I was very tired and weak, but I instantly felt like this class was the right place for me. We met twice weekly, and Sam was always there to help us get the moves right. He was very reassuring, helpful and was always joking with me. We became good friends at the gym, but soon that friendship began to blossom. The JCC’s boxing class days became my favorite days of the week! With Parkinson’s disease you often lose social ties, but Rock Steady Boxing gave me the opportunity for not only exercise but also socialization with my peers. I have started a beautiful new relationship with Sam, and I also made many new friends in my classes who all share a common goal: BEAT PARKINSON’S!

In October 2022 I had my annual check-up, and my neurologist was amazed at my incredible progress. My gait, strength, balance and energy had all improved greatly. The Rock Steady Boxing program has allowed me to regain so much energy and strength that I am now able to socialize and maintain my relationship with Sam, as well as being able to play an active role in the lives of my three grandchildren. Exercise is truly the key to managing Parkinson’s. I encourage my peers to challenge themselves to exercise daily — you will feel much better.

Sam is still assisting the class with boxing techniques, and our relationship has grown into a wonderful and supportive pairing. Without the Philip Shayman’s Parkinson’s Program classes, I would have never met Sam or improved my physical and mental health. I tell everyone that exercise is the best thing you can do for Parkinson’s disease. Sam and I walk, box and continue to write our bucket list every day. I hope you will too!

Connect with your chapter to find your local exercise program.

My PD Story

Kristy Brennan headshot
People with PD

Kristy Brennan

I am a 51-year-old grandmother of one, mother of two, and wife to the best man I know. I was diagnosed with Parkinson’s disease (PD) in June 2017.

I had been seeing a neurologist since 2015 because of daily headaches. At one of our appointments in 2017, he noticed a problem with the way I was walking. He pointed out that I was dragging my right side and that I was not swinging my right arm. He immediately ordered a DaTscan.

I went to the scan appointment alone because I truly believed they were going to tell me that the test was negative. That day, the physician’s assistant looked at me and said the words that would change my life forever: "Your test results indicate that you have Parkinson’s disease."

I did not react well to the news. I started to ask questions, but with every word, I cried harder. She gave me no empathy, just a prescription that was supposed to help with the tremors. I tried to make a follow-up appointment on my way out and I couldn't even manage that. Walking as fast as I could to my car, I got in, started the car, and began to sob. My husband didn't know how to react to the news either. We weren't talking to each other; not because we were angry, but simply because we didn't know what to say. I got through the first week, then the second, and so on, but I wasn't feeling any better.

A few weeks after I received my Parkinson’s diagnosis, I finally paused the crying enough to really think about things. I started doing research on the best neurologists who specialize in Parkinson's, and I found out that one of the most renowned neurologists in the country is right here in Las Vegas. His name is Dr. Mari, and he works at the Cleveland Clinic Lou Ruvo Center for Brain Health, a Parkinson’s Foundation Center of Excellence. It took me about three months to get an appointment there, but I already felt better about making progress toward treating the disease. I stopped asking, "Why me?" and started asking, "Can I improve?".

At my appointment, Dr. Mari put me through several physical tests and confirmed the Parkinson’s diagnosis. He changed the medication I was on — since I hadn’t followed up with my previous doctor, I wasn’t taking the correct dosage. He also put in a referral for physical therapy, explaining that this PT was set up specifically for my symptoms. It was not necessarily to help with pain, but to help with movement, so I agreed to go.

I met with the physical therapist, and we went over everything. At my first appointment, she tested how many steps I could take in 6 minutes. I was only able to take 375 steps, when the average amount is 1,800 steps. Other tests showed that I was also experiencing problems with reach and balance. We set up weekly appointments to work on improving my mobility.

Five weeks later, we had a “test day” to see how much my symptoms had improved since starting physical therapy. I began with the walking test, and when the 6 minutes were up, my physical therapist was smiling from ear to ear. I had walked 1,696 steps in 6 minutes! I knew that I had more work to do, but I knew I could do it. My vertigo was gone, I could walk at an almost normal pace, my balance was really improving, and I had my confidence back. I continued to exercise for at least 30 minutes a day, and I got better and better.

Fast forward to Spring 2019, I got a team together for Moving Day Las Vegas. While I was there, I met Darbe Schlosser from Recalibrate Motorvation. Her program received a community grant from the Parkinson’s Foundation, and she asked me if I was interested in becoming a client. Of course I was! I was gifted with 16 boxing sessions, where she taught me how to extend my reach, build my stamina, increase my balance and reaction times, and move my feet and arms at the same time again.

As I continued my battle with Parkinson's disease and I started to feel almost normal again, I began to wonder about my new purpose in life. I could no longer work as a social worker; due to a cognitive problem related to PD, my mind couldn't handle the stress and paperwork involved. I started to realize that I could design art pieces out of everyday products. I had never experienced this kind of creativity before, but I decided to try. I began painting, designing, and drawing one-of-a-kind pieces.

Is it possible that Parkinson's can be a blessing? I believe, in my case, it is a blessing. I have a whole new purpose in life, and while there are times when I don't feel well, I know that when I am feeling good, I can spread positivity through my writing and creation of art.

Anyone who has been given a life-changing diagnosis like Parkinson’s should know that, with a little research, you can find help and resources.

You are not alone. Call our Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s disease questions.

Science News

Most Popular Science News Articles of 2022

Parkinson's Foundation Science News blogs

Research brings hope to those living with Parkinson’s disease (PD) and their families. Knowing about the current Parkinson’s research studies can be empowering. Our Science News blog series focuses on the latest Parkinson’s studies and what they can mean for you or your loved one living with this disease.

The Parkinson’s research realm is vast. A breakthrough in treatment can stem from any lab or researcher, which is why we fund numerous research grants every year. Ready to participate in Parkinson’s research? Visit our Join A Study page to learn more.

Catch up on our top 5 Science News articles of 2022:

1. Aerobic Exercise Positively Alters Parkinson’s Brain

Multiple clinical trials have shown that aerobic exercise can enhance cognitive functioning, such as learning, thinking, remembering and problem solving. We know brain heath and cardiovascular fitness are connected. What we don’t know is how and where in the brain aerobic exercise is enhancing cognitive functions and reducing movement symptoms for people with PD.

This study sought to investigate how aerobic exercise may influence PD-related changes in the brain. Researchers also explored the effects of aerobic exercise on the substantia nigra, the area in the brain that plays a key role in dopamine production.

READ THE FULL ARTICLE

2. Freezing of Gait: Comparing Treatments Options

80% of people with PD experience freezing of gait

The sudden feeling that your feet are glued to the floor when trying to take a step is called freezing of gait — or more commonly, “freezing.” Unfortunately, freezing can happen often for people with Parkinson’s.

A new analysis compared the 11 most common techniques used to help a person with PD recover from a freezing episode. Some of these techniques include general exercise, verbal cues (like counting or clapping) and gait training. Find out the top three techniques that help with freezing.

READ THE FULL ARTICLE

3. The Unmet Needs of Women with Parkinson’s

40% of all people living with PD are women

When it comes to PD research, women are woefully underrepresented. Compared to men living with Parkinson’s, women with PD experience different symptoms, risk factors, side effects to treatments and have more difficulty getting a diagnosis and, later on, care.

We know these health inequalities exist, so how is research addressing them? A study authored by women sought to rigorously document the current knowledge, gaps and possible ways to address the unmet needs of women living with PD.

READ THE FULL ARTICLE

4. Dopamine Medication May Help with Sleep, Depression and Pain

Think of non-movement symptoms in Parkinson’s as fingerprints — everyone has them, but they’re different for every person. These symptoms can include depression, anxiety, problems sleeping and more. They often go under-reported and under-treated in people with Parkinson’s.

A type of drug known as a Monoamine oxidase-B (MAO-B) inhibitor helps make more dopamine available to the brain. These drugs can mildly improve some PD movement symptoms, but we do not if or how these medications help with non-movement symptoms. Parkinson’s Foundation National Medical Advisor Michael S. Okun, MD, co-authored a study analyzing a total of 60 MAO-B inhibitor studies and how they impact non-movement symptoms in Parkinson’s. Find out which symptoms improved, and which ones did not.

READ THE FULL ARTICLE

5. PD & Pollution: Something in the Air

Most experts agree that PD is caused by a combination of genetic and environmental factors

Air pollution is linked to heart disease, stroke, respiratory diseases, and diabetes, as well as neurogenerative diseases such as Alzheimer’s disease. Mounting evidence suggests that Parkinson’s might be added to the list soon.

A new study shows that air pollution is an emerging risk factor in the development of Parkinson’s. Exactly how do polluted air particles negatively impact the brain? From the lungs to the gut, study authors explain the pathways air pollution takes to enter the brain — all of which are linked to an increased risk of developing PD.

READ THE FULL ARTICLE

My PD Story

Sumedha and his daughter
Family Members

Sumedha Jayaraman

My grandfather S. Jayaraman used to be one of the healthiest people I knew. He had an excellent daily routine, great food habits, never took any medication, was full of youthful energy, and inspired many. He would play the instrument he loved like no other, the Veena — the national instrument of India beautifully demonstrating the astonishing dexterity of his fingers.

When he was 73 years old, in the summer of 2021, during one of our walks around the community I noticed he slowed down a little and I also observed a tremor in his right hand. A bit perplexed, I returned home and shared this with my parents. The family was not clear as to what was going on.

My dad decided to get to the bottom of this. The doctor arranged for a series of blood work diagnostics, and we were referred to a neurologist in Hamilton, New Jersey. After seeing my grandfather over a couple of visits, the doctor confirmed that my grandpa had developed Parkinson’s disease (PD). He started becoming inflexible so he could no longer play the Veena freely. I was shocked, as he has been my music teacher ever since I can remember.

Our family had no background in Parkinson’s, let alone knowledge of the potential causes and treatment for this disease. The doctor prescribed my grandfather dopamine medication that he needed to take regularly for the rest of his life. Everything was so obscure. But one thing the doctor said during our visit stuck with me: grandpa’s Parkinson’s disease could be controlled by regular tailored physical exercises.

Armed with this insight, my family decided to invest at least one hour every day with my grandpa to help him move. My dad, my mom, my younger sister, and I would take turns exercising with him. We came up with an exercise schedule. I would also create writing assignments for him every day. We could see that the regular exercises were helping him to move more freely.

With my pocket money, I bought him a leg strap so he could do his leg stretches, a stress ball for his hand, a whistle for his vocal muscles, a specialized pen, a timer, and a journal to help schedule and track each activity.

The regular exercise routine and the intergenerational bonding we established through these activities greatly helped my grandpa. By the fall of 2021, we saw a noticeable change. Our musical lessons restarted, and my happiness knew no bounds. Encouraged by the progress my grandpa was showing, I decided to help more people with Parkinson’s. I designed a kit containing exercise resources that I wanted to share with fighters like my grandpa in the New Jersey and Pennsylvania region.

I did not know exactly how I would reach these fighters and bring about awareness of exercise. I created a presentation about mobility and emotional assistance for people with Parkinson’s and shared it with PD support groups, physicians, and rehabilitation centers. I was moved by the number of people who wanted to support my idea. I was encouraged to start a youth-run non-profit organization. During the Christmas break of 2021, I founded Act MoveHope to care for Parkinson’s disease fighters.

Sumedha and daughter playing the Veena

I raised funds by performing Veena music concerts, which I used to distribute mobility kits and personalized handwritten cards to 20+ fighters in partnership with Rock Steady Boxing New Jersey. The greatest gift has been receiving “thank you” phone calls and notes from the people who use the kits.

The Parkinson’s Foundation has provided encouragement throughout this year, and I am thankful for their support in sharing my story to benefit more PD fighters. There is hope for people living with PD through action and movement. I am happy to work with the Parkinson’s Foundation to continue the fight against Parkinson’s.

Want to make a difference in your local PD community? Become a Parkinson’s Foundation volunteer.

Raise Awareness

Parkinson’s Foundation, with support from CVS Health Foundation, Launch New Courses to Educate Healthcare Professionals

Group of health care professionals

Movement disorders specialists — neurologists with specialized training — provide people with Parkinson’s disease (PD) the best chances for a better quality of life. The reality is that not every person with Parkinson’s has access to these specialists. To increase access to quality PD care for the one million Americans living with this disease, the Parkinson’s Foundation, with support from the CVS Health Foundation, created a series of free, accredited online courses to help healthcare professionals learn how to provide tailored PD care.

Launched in November, the Education Series for Community Providers is a six-part series of free, online courses that offer essential Parkinson’s information designed for healthcare professionals who are not experts in Parkinson’s disease. The first course in the series is now live — register now . The Parkinson’s Foundation will release all courses over the next 12 months.

“When working towards a degree in the healthcare field, we have found that most healthcare curriculums minimally cover Parkinson’s disease,” said Eli Pollard, Chief Education and Training Officer at the Parkinson’s Foundation. “Due to our aging population, Parkinson’s numbers are on the rise, and all our healthcare workers — from local general practitioners to hospital staff — are going to treat more people with Parkinson’s in their everyday practice. This online series is designed to help them know how to best care for their patients living with this disease.”

The professional education series will highlight best practices gleaned from evidence-based research and learned through the Foundation’s Global Care Network. In addition to a movement disorders specialist, people with PD benefit most from building an interprofessional care team that helps manage troublesome symptoms that occur as this disease progresses.

This series of courses will also teach healthcare experts how to deliver optimal care to people living with Parkinson’s. The six courses are designed for a wide range of healthcare professionals, including neurologists, primary care physicians, physician assistants, nurses, pharmacists, psychologists, social workers and dentists. Courses include:

  • Comprehensive and Equitable Care for People with Parkinson’s by Community Providers
    This course introduces providers to the common movement and non-movement symptoms of PD, including evaluations and treatments used to diagnose and treat PD. We also explore misperceptions of the impact of PD across gender and race.
  • Optimizing Hospital Care for People with Parkinson’s
    This course provides key recommendations from the Parkinson’s Foundation Hospital Care Report including optimal outcomes for people with Parkinson’s via in-patient, emergency care and out-patient care settings.
  • Utilizing Quality Measures to Improve Parkinson’s Care: What Every Neurologist Needs to Know
    This covers the quality measures for neurologists, who may not primarily be focusing on Parkinson’s to better understand and deliver optimal care in their community setting.
  • The Expert Care Experience: The Role of Nurses in Caring for People with Parkinson’s
    This course is designed for nurses to better understand their role and how to deliver comprehensive care to people with PD, no matter their setting.
  • The Expert Care Experience: The Role of Social Workers in Caring for People with Parkinson’s
    This course is designed to inform and educate social workers who have a pivotal role in accessing the acute and long-term needs of people with Parkinson’s. As part of the interprofessional care team, social workers can direct people to key resources and provide assistance in the areas of mental and emotional health.
  • The Expert Care Experience: The Role of Dentists in Caring for People with Parkinson’s
    This course is designed to educate dentists and dental staff about the complexity of PD, such as swallowing, cognition and movement symptoms, along with recommendations for optimal oral hygiene regimen.

Register for course one now

My PD Story

Paul and dad at a football game
Family Members

Paul Farahvar

My father was diagnosed with Parkinsonism in 2019, which likely resulted from a traumatic head injury. He was a successful and well-respected orthopedic surgeon for almost 40 years in Chicago, IL. He was the first to bring many bone surgeries to Chicago in the 1970s and ‘80s. 

As a pioneering surgeon, he loved helping others as a physician, so much so that he didn't want to retire, even into his 70s. He was known as a no-nonsense surgeon, who always thought of surgery as a last option, not the first — which was something rare in the ‘80s and ‘90s and is even rarer now. 

He didn't need to work anymore, as he had provided for his family for years and deserved retirement. We finally convinced him to retire so that he could work on his golf and tennis games! Sadly, less than five years into his retirement, he had a bad fall and then started to experience symptoms consistent with Parkinson’s disease. It slowly took away his independence and forced him to accept assistance. We are still unsure what form of parkinsonism he has as it has progressed for the past three years, quite quickly, making his ability to walk and talk very limited. 

Paul during a comedy show

I did not know much about Parkinson's before my father's diagnosis, but since then, I have become a student of the disease, and have been raising thousands of dollars for the Parkinson’s Foundation by donating all the proceeds from the T-shirts I sell at my comedy shows. I travel the country as a stand-up comedian, promoting my "Better Call Paul" shirts at my shows — I used to be a lawyer so it's a wink and nod to the show "Better Call Saul!” 

I regularly hear stories from others who have been personally affected by Parkinson’s and continue to learn more about this disease and its wide-ranging impact. Many of these conversations and connections end with tears and hugs with fellow family members who have suffered and lost.  

When it comes helping your loved one with Parkinson’s, talk to as many people who have been affected by Parkinson’s as possible, read as much as you can, be an advocate for your loved one and be positive.

In December 2022, I launched Stand Up for Parkinson’s, a Comedy Night supporting the Parkinson’s Foundation Midwest Chapter. I hope to continue my work with the Parkinson’s Foundation in the coming years!

Looking for ways to help your local PD community? Learn more on our How You Can Help page.

Science News

Dopamine Medication May Help with Sleep, Depression and Pain

Parkinson's Foundation Science News blogs

In Parkinson’s disease (PD), non-movement symptoms can include depression, anxiety, sleep disturbances, pain, fatigue, cognitive dysfunction, apathy (lack of feeling or emotion) and even impulse control. These symptoms are common for people with Parkinson’s — and often go under-reported and under-treated. According to the Parkinson’s Outcomes Project, these symptoms have a greater negative impact on quality of life than movement symptoms. There remains considerable unmet needs when it comes to the management of these non-movement symptoms.

What are MAO-B inhibitors?

Monoamine oxidase-B (MAO-B) is an enzyme that breaks down several chemicals in the brain, including dopamine.

A MAO-B inhibitor makes more dopamine available to the brain. This can modestly improve many PD movement symptoms.

 

Couple sitting at the table reviewing medication paperwork

Monoamine Oxidase Type B (MAO-B) inhibitors are a type of medication that can mildly improve some PD movement symptoms. Though there have been an increasing number of studies reporting the potential benefits of these drugs for non-movement symptoms, results have yet to be reviewed and summarized in any systematic way.

Parkinson's Foundation National Medical Advisor Michael S. Okun, MD, co-authored the study titled “Effects of MAO-B inhibitors on non-motor symptoms and quality of life in Parkinson's disease: A systematic review” (Tsuboi et al., 2022). The primary objective of this study was to provide an up-to-date, systematic review of the quality of life and non-movement symptom findings drawn from available studies of three commercially available MAO-B inhibitors: selegiline, rasagiline and safinamide.

After a meticulous review, this study ultimately analyzed a combined 60 studies out of 1,850 — all 60 met strict high standard research requirements, such as being peer-reviewed. Studies included:

  • Clinical studies on people with Parkinson’s disease
  • Reported effects of selegiline, rasagiline, or safinamide on non-movement symptoms or quality of life using symptom-specific assessments or objective measures
  • Assessment of non-movement symptoms including depression, anxiety, sleep disturbances, fatigue, pain, autonomic dysfunctions, olfactory dysfunctions, cognitive dysfunctions, apathy, impulse control, and rapid eye movement sleep behavior disorders.

Results

Collectively, the overall findings were broken down into non-movement symptoms include:

  • Apathy, olfactory dysfunctions and impulse control disorders – There was not enough evidence to make any determination of the effects of MAO-B inhibitors on apathy and impulse control disorders. In addition, MAO-B inhibitors are unlikely to improve olfactory dysfunctions.
  • Anxiety – No studies demonstrated significant benefits of MAO-B inhibitors on anxiety.
  • Cognitive dysfunctions – MAO-B inhibitors were unlikely to improve global cognition but might have the potential to improve fluctuating cognition (i.e., spontaneous alterations in cognition or attention).
  • Depression – Rasagiline, safinamide and selegiline may potentially improve depression symptoms.
  • Fatigue – The number of studies reporting fatigue outcomes remains scarce, and the impact of MAO-B inhibitors on fatigue appears inconsistent across studies.
  • Pain ­– Rasagiline and safinamide might improve pain, especially in people with PD in more advanced stages. There are not any selegiline studies to report on pain outcomes.
  • Quality of life – A minority of the randomized clinical trials (RCTs) (rasagiline or safinamide vs. placebo) for those with advanced PD reported statistically significant quality of life improvement. There have been no selegiline studies reporting quality of life outcomes.
  • Sleep disturbances – No RCTs (rasagiline or safinamide vs. placebo) revealed significant benefits of MAO-B inhibitors based on the sleep-specific rating scales. However, one RCT using a sleep study, and some open-label studies, reported positive effects of MAO-B inhibitors on sleep disturbances.
  • Urinary symptoms – The effects of MAO-B inhibitors on various autonomic symptoms, such as urinary symptoms, remain unclear due to the scarcity of data.

What does this mean?

“People living with Parkinson’s and their clinicians are hungry to initiate new therapies for the treatment of disabling symptoms,” said Dr. Okun. “We want people in the PD community to know that utilizing MAO-B inhibitors as specific therapies for the treatment of many non-movement symptoms, at this point, has not been shown to be effective.”

This systematic review found that MAO-B inhibitors may potentially improve depressive symptoms, sleep disturbances and pain. However, MAO-B inhibitors have not been associated with improvements in quality of life, cognition and olfactory dysfunctions. Of note, rasagiline and safinamide had more evidence supporting improvement in non-movement symptoms when compared with selegiline, however this may have been biased by when the drugs were introduced to the market.

Also of importance, this study showed a lack of evidence of the effects of MAO-B inhibitors on non-movement symptoms and quality of life in general, and on fatigue, autonomic dysfunctions, apathy, and impulse control disorders in particular.

These vast knowledge gaps concerning the efficacy of MAO-B inhibitors on non-movement symptoms for people living with PD is a genuine call to action for researchers. For example, comparing the efficacy of MAO-B inhibitors with other medication options, such as dopamine agonists, is clearly warranted. This information is vital for clinicians to be able to make good decisions in the care of PD.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and MAO-B inhibitors by visiting the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.

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