May 10, 2023
While still in the developmental stage, genetic and cell-based therapies hold some promise for people with Parkinson’s disease (PD). This webinar will review what those considering gene-based or cell-based therapy may expect in terms of symptom management and disease progression.
Roger Barker, BA, MBBS, MRCP, PhD
University of Cambridge
Parkinson's disease (PD) has an uncanny ability to catch you off guard, striking when you least expect it. I was 39 years old and living an active life when my first symptoms emerged. My wife actually noticed before I did, when she pointed out that my right arm appeared stiff during a walk.
Soon after, while I was playing golf, I had a moment where my mind and body seemed to exist in two separate worlds, leading to several out-of-control shots. I also noticed that my symptoms were concentrated on my right side, affecting my fine motor skills and leading to a change in my gait.
My symptoms progressed and reached a breaking point when a stumble over my right foot sent me tumbling down the stairs at home. It was a wake-up call and a realization that I needed to find out what was causing these problems.
The following year and a half became a flurry of doctor’s appointments and diagnostic tests in search of answers. After seeking second opinions, the verdict finally arrived in 2007: Parkinson's disease. Accepting this harsh reality was a struggle, followed by the onset of anxiety, fatigue and an apprehension towards even the simplest of tasks. These limitations became my new companions, guiding my decisions.
In pursuit of a better life, I explored different treatment options — acupuncture, hyperbaric oxygen therapy, massage, muscle activation techniques, peptide therapy, IV nutrition therapy and more. Although I was making progress, I needed to go further.
A pivotal turning point was when I engaged with a movement disorder specialist (MDS). This collaboration reshaped my perception of how to manage Parkinson’s. Together, we created a holistic approach to tackle my symptoms head-on, establishing a plan that revolved around exercise, diet and stress management. We connected in a profound way that changed my outlook and helped me learn new techniques for dealing with PD.
I also began looking into resources from the Parkinson’s Foundation to help navigate the disease. I found the Living with Parkinson's section on their website to be a great resource for information. One of my initial challenges after being diagnosed was finding support, so I started incorporating their emotional and mental health tips into my everyday life.
Fueled by positivity and visualization, I envisioned a life free of mobility hindrances, propelling me towards greater activity and diminished fear. This journey of embracing Parkinson's became a lesson in understanding my body and its signals.
However, in February 2020, a setback led me to the emergency room. My Parkinson’s medications had become ineffective, and I felt like my body was betraying me. Three months of at-home care steered me towards a groundbreaking decision — deep brain stimulation (DBS) surgery. After meticulous research and consultations with my neurologists, I underwent the DBS procedure in November 2020. This surgery marked a new chapter in my life, bringing improvements to my mental, physical and spiritual well-being.
Utilizing the lifestyle strategies from my MDS and feeling rejuvenated after DBS surgery, I began exploring creative outlets. Inspired by my love for writing, I established Be Still Publishing, a platform where I share my poetry, lyrics and music. In 2023 I released my first audiobook, "Embracing Parkinson's: A Journey of Acceptance and Healing," featuring one-on-one conversations between me and my MDS, Joe Green, offering insights into the world of a person living with PD and strategies for managing the condition.
In my journey to understand and deal with Parkinson’s, I discovered one of the best ways to manage this disease is through the help of healthcare professionals. I was surprised to learn that only 9% of people with PD receive care from a movement disorders specialist. This hit close to home, as I worked very closely with my MDS for years and it made a huge difference in the way I viewed and managed my Parkinson’s.
I am grateful for the support of my neurologist and MDS, as well as my friends and family. Despite the challenges I face, I refuse to let Parkinson’s sideline my spirit.
People living with Parkinson's who seek expert care have better outcomes. Find expert care near you.
from the Parkinson's community
Typical treatment of Parkinson’s disease (PD) consists of oral levodopa/carbidopa, along with other oral medications. Although there is no one-size fits all treatment, people with PD may experience more “off” periods, or symptom fluctuations, as the disease progresses. In this case, non-oral treatments, such as pump therapy, may be another option to consider.
Examples of currently available pump therapies for Parkinson’s include medication, namely apomorphine, delivered under the skin (subcutaneous) from a pump, or a gel containing levodopa/carbidopa delivered by a pump inserted through the skin directly into the upper part of the small intestine (intestinal gel pump).
In June 2023, expert Parkinson’s clinicians and researchers led a course in Poland about current pump therapies and what may be coming in the future. In today’s episode, Professor Ray Chaudhuri, one of the course leaders and Director of the Parkinson’s Foundation Centre of Excellence at King’s College Hospital in London, discusses some of the topics in the course, including who would be a good candidate for pump therapy, the benefits and risks, and recent developments in pump treatment options.
Released: August 22, 2023
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For all of our Substantial Matters podcast episodes, visit Parkinson.org/Podcast.
Occupational therapists help people with Parkinson’s disease (PD) remain independent and pursuing the activities they enjoy. Heather Simpson, OTD, OTR/L is an occupational therapist at the Norman Fixel Institute for Neurological Diseases at the University of Florida. At the Fixel Institute, she treats people with Parkinson's and other movement disorders while serving as co-clinical coordinator for their Parkinson’s Foundation Center of Excellence. In this article, Heather answers the most frequently asked questions about Parkinson’s and occupational therapy (OT).
Occupational therapy is a form of rehab therapy in which therapists use everyday activities to promote health, wellbeing and your ability to participate in meaningful activities in your life. OT works on “occupations,” which include self-care activities (like dressing, eating, bathing and toileting), home management activities (like cooking and driving) and leisure activities. Occupational therapy is individualized, but our goal is to make each person feel comfortable with who they are and help them live independently for as long as possible.
Research supports that occupational therapy intervention, along with physical therapy and speech therapy, can be very helpful for people with Parkinson’s disease. Starting occupational therapy early on is highly recommended. Even if you are independent when you first get diagnosed with Parkinson’s, starting OT can provide you with a home program that reacts to existing PD symptoms and prevents additional PD symptoms from occurring. OT can also give you tips and strategies to make sure you're feeling your best during daily activities.
What I love about OT is that it's holistic. We provide evidence-based interventions to help people enjoy life through everyday activities. OT is also tailored to your individual needs as a person with Parkinson’s. For movement symptoms, we can help with posture, rigidity, bradykinesia and fine motor skills. For non-movement skills, we work on improving sleep, vision, cognition and mood. Occupational therapy is useful because it’s available in many different settings — it can be found in outpatient therapy, inpatient therapy, hospitals, nursing homes and more.
Getting occupational therapy services is important no matter what, but therapists at Parkinson’s Foundation Centers of Excellence are specialized in Parkinson's and related disorders. They do a lot of research and learning, particularly about Parkinson's, and can work together with your local providers to give PD-specific recommendations.
Occupational therapists at specialized facilities also work directly with the physicians on your multidisciplinary team. This type of collaboration can help make sure that we're understanding your symptoms and your needs.
Occupational therapists are an important part of the care team for people living with Parkinson’s. We are directly involved with physicians and nurses, as well as physical therapists and speech-language pathologists. Since occupational therapists may work with you more regularly than you see your neurologist, we can be the eyes and the ears for other members of the team.
For example, if you come into an OT session and we notice you are experiencing new movement fluctuations, we can reach out to your doctor on your behalf to address the issue. Occupational therapists coordinate closely with your doctor and help make critical decisions for your care.
Occupational therapy is meaningful because it is person-centered and works to meet an individual’s needs. One of my clients was highly motivated by her role as a mother and a grandmother. She had a hard time moving her arms, hands and fingers, but through OT we found ways to adapt board games so she could play with her grandkids when they came to visit. Even though she had limited physical ability, we were able to maintain what she found important in her daily activities through these personalized interventions.
I love what I do for work, but I think it’s also very important to maintain the other roles I play in my life: friend, sister, daughter and spouse. I take time to pursue activities outside of work that fulfill those roles. I exercise, go to therapy and plan specialized date nights with my friends.
People in the Parkinson’s community may have a similar experience when it comes to the roles they play in life. When someone is diagnosed with PD, they may feel like they have to exercise full-time. Care partners may feel like they need to be a care partner at all times, and they lose their role as a spouse. I think it’s important to find a balance between your various roles whenever possible.
Occupational therapy is an individualized therapy that ensures safety, independence and happiness. It allows you to maintain your sense of self. OT is critical throughout all stages of Parkinson’s, from diagnosis to palliative care, but it is designed to help you maintain a sense of self and be happy with who you are.
For help finding an occupational therapist near you, contact our Helpline at 1-800-4PD-INFO (1-800-473-4636).
Of the one million people living with Parkinson’s disease (PD) in the United States, nearly one-third of them will have a hospital encounter each year. When hospitalized, three out of four people with PD will not receive their medications on time, possibly leading to worsening symptoms, medical emergencies, and a significantly increased length of stay, greatly increasing costs to the medical system overall.
To address this problem, the Parkinson’s Foundation developed key tools and resources for patients and providers as part of our Hospital Care Recommendations. Today’s guest, Peter Pronovost, MD, PhD, a major force in advancing hospital safety, helped develop these recommendations for making hospitals safer for people with PD, which includes standards of care. Dr. Pronovost practices critical care medicine and is Chief Quality Officer and Chief Clinical Transformation Officer at University Hospitals in Cleveland, Ohio.
Released: July 25, 2023
Don't forget to subscribe! There are many ways to listen: Apple Podcasts, TuneIn (Amazon Echo), Spotify or RSS Feed. (Need help subscribing? See our quick guide.)
For all of our Substantial Matters podcast episodes, visit Parkinson.org/Podcast.
I’m Benjamin ‘B.J.’ Bement. I was diagnosed with PD in October 2013 at the age of 44.
I was employed at a chemical plant for 18 years. Leading up to my initial symptoms I had taken three rounds of strong steroids in 2012 in response to three health issues that include a pinched cervical nerve with neuropathy, severe bronchitis and an adverse reaction to blood pressure medication. I left work on New Year’s weekend unaware I would not be returning.
After the hives and swelling abated, my energy and stamina did not return. My fatigue grew worse. I could not walk more than 100 yards without feeling like I would collapse. I stabilized myself with a cane or hanging onto a shopping cart at the store. I was too weak to pass the pulmonary test to resume work.
I started an aggressive search for answers. Over the next 10 months, I would see 14 different specialists and make more than 100 visits to doctors’ offices or labs. I wouldn’t take, “I don’t know” for an answer.
My general practitioner took 14 vials of blood to conduct every test he could think of. They all came back negative. My cholesterol, blood pressure, blood sugar and everything else were okay for a man of my size.
About five months later, I picked up a CD, splaying my fingers out to grip the wide plastic case. My hand started wavering backward and forward. I immediately thought it was probably something neurological.
It took a couple of months to see a general neurologist. He pursued multiple sclerosis tests, which came back negative. He referred me to a movement disorders specialist (MDS) [a neurologist with specialized training], who ordered a DaTscan to ‘rule out Parkinson’s,’ but it was positive.
The MDS placed me on carbidopa/levodopa, which resulted in immediate improvement, confirming the Parkinson’s disease (PD) diagnosis. I was put on short term, then long term disability. Although I had good benefits, they wouldn’t last forever, so I hired a lawyer to handle my Social Security filing.
I entered the holiday season of 2013 without a path forward. I had a four-month pity party mourning the loss of my past life. After the last holiday and the last football game, I had nothing else to distract me.
I began to search online for answers. I stumbled across a support group on Facebook and commented on some posts. A wonderful person named Michelle Lane replied and invited me to Washington D.C. for a Parkinson’s Action Network conference and Hill Day. I had no idea what to expect and was scared to meet people who were further along than me.
After I arrived, I saw there was nothing to worry about. Over the next three days I saw many people with more advanced symptoms being extremely passionate, active and hopeful. This began my advocacy journey.
I have since worked with many organizations and committees. I am in my third year of serving on the People with Parkinson’s Advisory Council for the Parkinson’s Foundation, my first year on the newly formed Gulf Coast Chapter Board, and my fourth year as chair of Moving Day Baton Rouge.
I have many ideas that I would love to see take life. Although I have been in advocacy for almost 10 solid years, I feel I am just getting started.
I could not make this journey without my awesome wife Kelly, my family, my church family, my local PD support group members, and the Parkinson’s Foundation staff. Here’s to another 10 years of new beginnings.
Benjamin is a Parkinson’s Foundation volunteer who received our Community Service Award in 2023. Meet our top volunteers and explore ways to get involved today.
from the Parkinson's community
Regularly seeing a neurologist can improve the lives of thousands of people with Parkinson’s disease (PD) each year. However, access to expert Parkinson’s care is not always easily available. A new Parkinson’s Foundation-funded study found that only 9% of Medicare beneficiaries with PD received care from a movement disorders specialist (expertly trained neurologists who can recognize PD’s distinct nuances and tailor treatments to each patient), while 50% saw a general neurologist.
The study identifies critical gaps in care for people with Parkinson’s in the U.S. Those with the greatest disparities in care are women, people of color (those who identify as Asian, Black, Hispanic and Native American) and residents of rural areas. Published in the official, peer-reviewed journal of the Parkinson’s Foundation, npj Parkinson’s Disease, the study analyzed 2019 U.S. Medicare data.
“By utilizing Medicare data from 2019 that represents 90% of people living with Parkinson’s in the U.S., this research provides not only the timeliest but the most comprehensive study of people with PD yet conducted,” said James Beck, PhD, senior author of the study and Parkinson’s Foundation chief scientific officer. “Our findings underscore that Parkinson’s specialists are not the main care providers for people with PD — it is the general neurologists and other clinicians. These professionals, and their patients, could greatly benefit from additional training in PD care.”
50% of people with PD receive care for the disease from general neurologists.
29% receive PD care from primary care providers.
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There are only 660 movement disorders specialists who practice in the U.S., with a total of six in rural areas. There are one million people in the U.S. living with Parkinson’s.
Forty-one percent of people with PD on Medicare do not see a neurologist or movement disorders specialist. Prior research has shown that receiving care from a PD specialist leads to a better quality of life. These doctors know how to help people manage PD symptoms, screen for crucial symptoms like depression and anxiety, and can help personalize medication and treatment plans.
The Parkinson’s Foundation conducted this study to better identify how it can improve access to specialized PD care. As a result of this study, the Foundation is now expanding disease-specific training to general neurologists and other healthcare providers, and pursuing strategies that improve access to care across all demographic and population groups. The findings from the study will also support policy development and future research that dives deeply into access issues.
The vision of the Parkinson’s Foundation is for all people to have access to quality PD care. The Foundation oversees multiple initiatives aimed at better understanding and improving care, providing professional education opportunities and working to remove care barriers for people with PD. Learn more about how we are increasing access to care through our care programs.
Every year, 90,000 people in the U.S. are newly diagnosed with PD. Unfortunately, many navigate the disease alone for years. Receiving an accurate PD diagnosis can be half the battle, while the other half is finding quality PD care. Those who engage with healthcare professionals trained in PD in the early stages of the disease report better outcomes and quality of life.
The economic burden of Parkinson’s disease to individuals, families and the U.S. government is nearly $52 billion every year and will cost $80 billion annually by 2037. Not only is expert care critical to living better with Parkinson’s, receiving care early on can reduce the economic burden of Parkinson’s drastically both on a personal and nation-wide basis.
The number of people with PD will continue to increase substantially in the next 20 years due to the aging population. That is why we are determined to educate healthcare professionals so that people with Parkinson’s will receive a diagnosis earlier, treatment sooner and better care. Our goal is for people with Parkinson’s actively avoid unnecessary complications, such as prolonged hospital stays, and live better with this disease.
If you are living with or caring for someone with Parkinson’s, find PD care near you with these resources:
Read more about Finding Care and Treatments.
Since routine outpatient procedures may pose special needs and risks for someone with Parkinson’s disease (PD), extra planning is in order for the period before, during, and after the procedure. The procedures may be medical or dental, for example, teeth cleanings, colonoscopy, or magnetic resonance imaging (MRI).
Fortunately, the Parkinson’s Foundation has developed a course that highlights key recommendations and strategies to promote optimal care and health outcomes for people with PD during planned and unplanned hospital stays, which can include inpatient, outpatient, and emergency department hospital encounters.
In this podcast episode, movement disorders neurologist Muhammad Nashatizadeh, MD of the University of Kansas Medical Center in Kansas City, a Parkinson’s Foundation Center of Excellence, discusses how people with PD can incorporate this same safety protocol to ensure optimal outcomes when they plan for and have routine outpatient healthcare procedures.
Released: June 27, 2023
Don't forget to subscribe! There are many ways to listen: Apple Podcasts, TuneIn (Amazon Echo), Spotify or RSS Feed. (Need help subscribing? See our quick guide.)
For all of our Substantial Matters podcast episodes, visit Parkinson.org/Podcast.
My journey with Parkinson’s disease (PD) began at age 65, when I received a PD diagnosis. Doctors believe I had Parkinson’s for about four years prior to diagnosis. One chapter of my PD journey concluded with deep brain stimulation (DBS) surgery followed by programming and meeting with my neurosurgeon. My goal is to continue to enjoy adventure travel, cycling, photography and playing music with friends for as long as possible. There’s no doubt that DBS will add years of quality time to my life.
I began writing poetry as a catharsis for dealing with the disease and treatments. Up until my diagnosis, I had never written or even been particularly interested in poetry. Looking back, my brain’s response to the stress and adversity emerged in the form of poems that created an emotional vocabulary to express the disease at a visceral level. I never intended to share these poems with anyone.
Having come through the other side of the DBS process, and at the request of my neurosurgeon Dr. Kendall Lee, I felt it was important to share my work to give others a real understanding of the process of treating Parkinson’s with deep brain stimulation. This experience inspired me to write a book titled No Turning Back: Journey from PD Diagnosis to DBS Surgery. The goal of the book is to change antiquated perceptions about DBS as a treatment of last resort for people with PD.
I had the good fortune of working with Mary GrandPré, whose talent and artistry interpreted my words and infused a level of visual emotion beyond my imagination. I hope you will find this writing to be honest, raw, vulnerable and accessible. This is one patient’s experience with DBS.
I have also connected with the PD community through volunteering for the Parkinson’s Foundation. My daughter, wife and I volunteered for Moving Day Twin Cities in Minnesota. It was a great experience that we plan to repeat for years to come. We are also hosting a No Turning Back book launch event at the Walker Art Center in Minneapolis, with all ticket and book sale proceeds going to the Parkinson's Foundation.
from the Parkinson's community
Treatment may include things that you do yourself, such as exercise, or things that you do with oversight, such as physical therapy, occupational therapy, and speech therapy or talk therapy. It may also include medications specific to your needs, such as medications aimed at improving your movement, and others aimed at improving non-movement symptoms such as constipation, urinary dysfunction, or sleep. The treatment of Parkinson’s is often best served via a team approach, with you – the person with PD – at the center and incorporation of your care partner, healthcare provider, therapists and other healthcare providers who treat specific symptoms of Parkinson’s.
For more information on treatments for Parkinson’s disease, visit Parkinson.org/Treatment.
