Episodio 25: Opciones quirúrgicas en el tratamiento de la enfermedad de Parkinson
Aunque los medicamentos suelen ayudar a minimizar las fluctuaciones motoras de la enfermedad de Parkinson, hay ocasiones en las que la medicación no es suficiente y se plantean opciones de tratamiento avanzadas.
Es importante explorar las opciones quirúrgicas con su especialista en la EP si esto es algo que puede considerar. La cirugía a menudo se reserva para quienes han optimizado y agotado los medicamentos para el temblor de Parkinson o que experimentan profundas fluctuaciones motoras.
En este episodio de podcast, escuchamos al Dr. Gonzalo Revuelta, profesor asociado de neurología y director médico del programa de estimulación cerebral profunda en MUSC, la Medical University of South Carolina, sobre las opciones de tratamiento quirúrgico disponibles para las personas con la enfermedad de Parkinson.
Publicado: 25 de abril de 2023
Gonzalo J. Revuelta, DO, MSc, FANA, es catedrático SmartState de enfermedades neurodegenerativas y profesor asociado de neurología. Dirige el Murray Center for Research In Parkinson’s Disease and Related Disorders y es el director médico del programa de estimulación cerebral profunda en MUSC (Medical University of South Carolina). Se licenció en Medicina por la University of Medicine and Dentistry of New Jersey—School of Osteopathic Medicine. Completó su residencia en neurología en la Drexel University College of Medicine en Filadelfia. Tras la residencia, completó un entrenamiento especializado en trastornos del movimiento y estimulación cerebral profunda en la Emory University School of Medicine en Atlanta. Su investigación se centra en el desarrollo de terapias de neuromodulación para los bloqueos de la marcha en la enfermedad de Parkinson.
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Parkinson’s Foundation Presents Findings on Depression, Genetics and Palliative Care at Annual Neurology Meeting
More than 10,000 neurology professionals gathered to learn the latest in research and treatments at the American Academy of Neurology Annual Meeting in Boston, MA. This year, the Parkinson’s Foundation hosted a presentation and shared two posters in research and care. Notably, the Foundation’s PD GENEration: Mapping the Future of Parkinson’s study received special distinction and was selected as an oral presentation as part of the session on Movement Disorders Genetics and Risk.
1. Screening and Treatment of Depression in Parkinson's Disease Within Movement Disorders Centers
It is estimated that 50% of people with Parkinson’s experience depression. Regularly screening for depression among people with PD can help identify untreated depression and prompt treatment. In this new study using data from our Parkinson’s Outcomes Project, we studied whether offering a systematic screening for depression (including the use of the Geriatric Depression Scale (GDS-15)), can help improve quality of life.
Study takeaways:
Five Centers of Excellence began providing depression screening, diagnosis and treatment practices, and evaluated them through medical record reviews.
During the implementation phase, when the formal screening rates where all done with a validated screening instrument (GDS-15) it was found that 68% of people with Parkinson’s reported symptoms of depression across the five sites.
Prior to offering a systematic depression screening, screening rates for depression ranged anywhere from 56 to 92%, but only 14% used a validated screening instrument.
Systematic screening for depression will help improve the standard of care and quality of life by educating clinicians and people with PD.
Authors: James C. Beck, PhD, Janis Miyasaki, MD,FAAN, Connie C. Marras, MD, Nabila Dahodwala, MD,FAAN, Kelly A. Mills, MD, Meredith Spindler, MD,FAAN, Daniel Weintraub, Eugene Nelson, Sneha Mantri, MD, Amy Brown, MD, Anna Naito, PhD, Zachary Meyer,Allison Marie Allen, Marilyn Neault, PhD
2. Frequency of Known Genetic Variants for Parkinson’s Disease in the PD GENEration Study Cohort
This presentation assessed the prevalence of genetic variants for PD through the Parkinson’s genetics study, PD GENEration. Widespread genetic testing will help inform previously unsuspected individuals with PD that they have a genetic mutation in one of the seven major genes known for PD, and ultimately qualify more people for enrollment in genetic-based PD clinical trials.
Study takeaways:
PD GENEration genetic testing shows that among participants, ~13% have a genetic variant linked to Parkinson’s.
Although reportable variants were more likely to be found in those with either young-onset PD high-risk ancestry or a positive family history, 8% of those without these features had a genetic variant for PD.
Authors: James Beck, Kamalini Ghosh Galvelis, Martha Nance, Anna Naito, Niccolo Mencacci, Ignacio Mata, Anne Hall, Jeanine Schulze, Rayza Priscila Hodges, Anne Marie Wills, Michael Schwarzschild, Karen Marder, Tanya Simuni, Mandy Miller, Jennifer Verbrugge, Lola Cook, Laura Heathers, Michelle Totten, Tatiana Foroud, Roy Alcalay
3. Outpatient Palliative Care for Parkinson’s Disease: Results from a National Survey
Palliative care, also known as supportive care, addresses physical, social, emotional and spiritual needs to improve the quality of life for a person with Parkinson’s and their family. Emerging evidence also shows that receiving palliative care improves patient and family-centered outcomes. However, little is known about the availability of resources and current practices among physicians in addressing palliative care needs in their clinics. The goal of this study is to describe the current availability of outpatient palliative care for people with Parkinson’s and their care partners at 33 US Parkinson’s Foundation Centers of Excellence.
Study takeaways:
A survey was sent to 665 healthcare professionals across 33 Centers of Excellence in the U.S.
15% screen for grief, guilt and additional spiritual concerns
4% report they discuss and review advance care planning documentation
Many physicians are currently assessing and managing important palliative care needs for their patients with room for improvement in certain key components.
Non-movement symptom screening is a more utilized palliative care component while referral to hospice when appropriate and discussing advanced care planning are reported less.
This program will cover various treatment options for Parkinson’s Disease, from exercise, therapies, medications, and surgery options.
Speakers
Dr. Fernando Pagan
Dr. Yasar Torres-Yaghi
More speakers are to be announced.
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their families, friends, and the community.
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Expert Briefing: Freezing and Fall Prevention in Parkinson's
April 12, 2023
While aging may put us all at an increased risk for falling, people living with Parkinson’s disease have twice the risk of their peers. Falls often result in injuries ranging from minor cuts to serious fractures, impacting mobility and quality of life. Learn how freezing and other movement and non-movement symptoms can contribute to falls and how to lessen the risk.
Colum MacKinnon, PhD
Professor, Department of Neurology, Institute of Translational Neuroscience, University of Minnesota
My PD Story
People with PD
Chris Cluff
I had just begun to live my dream of being a stand-up comedian when I was diagnosed with Parkinson’s disease (PD). The physical signs of the disease were present for over a year, but I just ignored them until I couldn’t any longer.
I was used to doing a lot of fun things. I taught yoga more than 40 years, and I enjoyed skiing as a hobby. Unfortunately, as my Parkinson’s symptoms progressed, even those activities were suddenly too much for my body to handle. I became extremely depressed and realized I needed to find an outlet for my emotions.
I happily discovered that laughter was my best friend. I started to take improv classes, which led to performing and teaching as well. When it came to my stand-up comedy, I realized I could use comedy to talk about Parkinson’s disease and share my story with others. I feel strong and whole when on stage, and making people laugh feels amazing! I wish I could extract the magic that comedy puts in my veins and share it with other people living with PD!
Since I wanted to share my comedy with members of the PD community, I decided to produce a stand-up comedy show benefitting the Parkinson’s Foundation. The show starred three of the top headlining comedians in the state of Arizona… and me!
We had a great crowd and I helped them see that Parkinson’s can also be treated with humor. I told them that I have a different relationship with my doctor these days. He doesn’t just say, “How are you doing?” — he asks, “What’s shaking?”
The event turned out well and was a lot of fun. The comedians did not disappoint; we all got in lots of healing laughter. Quite literally, comedy and performing has kept me alive. As long as I can get up on that stage, I will keep making laughter my way of giving back.
When I was diagnosed with Parkinson's disease (PD) in the fall of 2019, I was devastated. As an occupational therapist for over 30 years, I knew how debilitating Parkinson's could be and how the trajectory of my life would be changed forever. However, once I came to terms with my PD diagnosis, I vowed to do everything in my power to slow the progression of this disease.
As someone who enjoys information gathering, I set upon learning as much as I could about Parkinson’s. I scoured the Parkinson's Foundation website for information about being newly diagnosed and viewed countless webinar recordings on subjects such as nutrition and diet, exercise, medication and research. I also enjoyed reading the stories of other people living with PD and getting inspiration from their experiences.
After learning more about PD, my routine included regular check-ins with my neurologist at NYU Langone Medical Center, a Parkinson’s Foundation Center of Excellence, as well as managing my symptoms with medication. In addition, I embarked upon an exercise regimen 4 to 6 days per week which included strength training, kickboxing, Pilates and yoga.
However, when my husband and I decided to take dance lessons to prepare for our son's wedding, I wasn’t sure if Parkinson’s would interfere. Would the dystonia in my feet slow me down? Would my decreased balance interfere with my ability to negotiate turns? Would my fear of falling affect my ability to move? Would my bradykinesia interfere with the fluidity of my movements? However, with the support of our very talented and patient instructor along with the rest of the team at the Fred Astaire Dance Studio in Marlboro, New Jersey, I was able to dance the night away at our son’s wedding.
One year after we started our dance journey, my husband Nick and I danced a spotlight foxtrot at our studio's monthly dance party. It was terrifying... and exhilarating! I had done it! Despite my fears and lack of confidence in my ability as a person with Parkinson’s disease, I had performed a (mostly) fluid and graceful foxtrot in front of a room full of dancers with my husband. The video of us dancing received over 15,000 views on social media!
My husband and I have recently set a new goal of dancing a spotlight tango and learning to salsa. I hope to continue to dance for many years and to inspire other people living with PD not to let their fears hold them back!
Parkinson’s disease (PD) has made me a better basketball player — and a better bicyclist, birdwatcher and bowler. I know that sounds counterintuitive. With a degenerative brain disease, after all, things worsen over time. Right? In the long run, perhaps so.
In the years preceding my diagnosis, however, the churning currents of daily responsibilities — mainly job-related — carried me away from healthful activities that I enjoyed in my younger years.
Then came 2020 — the year I stopped walking right.
I was 49.
Looking back, I now recognize that the first signs of Parkinson’s disease popped up years before that — increased anxiety, attention deficits, fatigue, muscle rigidity and shoulder stiffness. But it was the sudden onset of persistent cramping in my left foot that figuratively (and literally) threw me off my stride. The cramps progressed to a constant limp that dogged me even when no cramps were present. I began bicycling for exercise rather than my usual walking or running — because bicycling did not trigger the cramps.
I finally saw a neurologist. After months of uncertainty, I received my Parkinson’s diagnosis in February 2022. Directly upon diagnosis, my neurologist at Indiana University Health, part of the Parkinson’s Foundation Global Care Network, provided me with educational books published by the Parkinson's Foundation.
Upon learning more about my symptoms, I found out the foot cramps were Parkinson’s-induced dystonia. To my great relief, a regimen of carbidopa-levodopa dramatically reduced the dystonia and the limp. I began enjoying walking again — with a new appreciation for being able to do so. Across a spectrum of activities, my PD diagnosis brought me back to doing things that promote better mental and physical health.
Support of family and friends is paramount. My wife, Amy, has been a constant partner at every step. Together, motivated by a mutual desire to stay active, we have spent more time doing things we love like hiking, birdwatching and bowling. Likewise, I have valued the encouragement of my three daughters — along with my parents, in-laws, friends and co-workers. I’ve also appreciated interacting on Facebook and Twitter with others facing Parkinson’s disease.
Basketball has become my primary therapy. I play 4-on-4 half-court hoops two nights a week. When I’m on the basketball court, I don’t think about my symptoms.
After playing infrequently during my 40s, I now enjoy trying to improve my skills each week. My outside shot — such as it was, anyway — has largely survived. But when I drive to the basket, I miss layups time after time. So, my current goal — besides passing the ball better — is to actually score the bucket after getting past defenders on the way to the hoop.
Exercise is so enormously beneficial for Parkinson’s disease. Conversely, the worst thing for PD, in my experience, is spending long periods sitting at a desk or otherwise being sedentary. After years as a news journalist, I have now worked in state government since 2014. My job requires hours at a computer keyboard, but I do my best to get up and be active in the midst of workdays.
As I now deal with some dyskinesias and other symptoms, I realize that Parkinson’s is a tough opponent. But we can keep scoring points, nonetheless.
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Check-in and exhibitor tables open at 2 p.m. ET
Parkinson’s disease effects multiple aspects of a person’s life. Join us and learn about some of the cognitive, emotional, and movement symptoms that can come with Parkinson’s, hear from top researchers in the state about advancements in treatments and care, and get connected with local wellness classes and support groups so that you can live your best life with Parkinson’s.
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends and the community.
Expert Speakers:
Mitesh Lotia, MD
Movement Disorder Neurologist, AdventHealth Neuroscience Institute
Dawn Bowers, PhD, ABPP/CN
Neuropsychologist, UF Departments of Neurology and Clinical & Health Psychology
UF Research Foundation Professor, the Director of the Cognitive Neuroscience Laboratory
Norman Fixel Institute for Neurological Diseases, a Parkinson's Foundation Center of Excellence
Expert Panelists:
Moderator: Joanne August, MSN, BSN
OPS Research Scholar
UF Departments of Neurology & Movement Disorder
Laura Patrick, PT, DPT
Clinical Neuro Program Manager, AdventHealth
Mia Watler, MSW
Brain Health Clinical Social Worker, AdventHealth
Tammy Dunseath
Genesis Health Clubs Brownwood
Gary Canner, Parkinson's Foundation Ambassador & Person with Parkinson's Joan Canner, Gary's Spouse and Care Partner
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
Tips for Daily Living: Building Your Mental Health Team
Addressing movement symptoms in Parkinson’s disease (PD) is often the first step to improving daily life and overall well-being. Attending to mental health is equally as important for quality of life, especially given that stress and anxiety can worsen PD movement symptoms.
Findings from our Parkinson’s Outcomes Project, the largest clinical study on PD, uncovered that mood symptoms, such as depression and anxiety, can have a greater impact on the health of people with Parkinson’s than movement issues.
Parkinson’s mood symptoms are often intertwined with everyday life challenges and the emotions of coping with a PD diagnosis. Whether or not you are experiencing depression and anxiety, recognizing your individual emotional needs, and building a strong support network that includes mental health professionals, is part of a comprehensive plan to live well with PD.
This article accompanies our virtual round-table conversation, Building Your PD Mental Health Team, which is part of our Mental Wellness Series. In this article, we highlight tips that can help you build a support team for your unique mental health needs.
Reflect on your unique emotional journey.
Take time to acknowledge the wide range of emotions that can come with PD — from sadness, grief and anger to relief, gratitude and hope — sometimes all at the same time!
As your emotional needs change throughout your PD journey, so will the people and tools you rely on. Make a list of your mental health goals and concerns. Explore new and different types of support. Reaching out for help can seem scary and overwhelming but it is often an important step to getting the support you need to feel better.
Foster positive connections.
Surround yourself with people who will listen, uplift and encourage you when you need them. Look for support among your friends, family and community.
Creating connections with others on a similar journey can remind us we are part of a larger, resilient community and keep us moving forward. PD Conversations is an online discussion group where you can discover a network of support. Ask your healthcare team or the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) about local support groups and explore events offered by your nearest Parkinson’s Foundation chapter.
Rely on professional therapy.
Psychologists, professional counselors, clinical social workers, marriage and family therapists are trained mental health providers who can offer strategies to ease stress and build coping skills. For example, a therapist trained in cognitive behavioral therapy can help you develop tools to change behaviors and thoughts that impact your emotional health.
Keep in mind that therapists are trained to listen and provide nonjudgmental feedback that both the people living with PD and care partners can benefit from.
Does your anxiety and depression last longer than a few weeks or impact your daily life?
Anxiety and depression are treatable. Talk to your healthcare providers to find the treatment option that works best for you. Call our Helpline for referrals at 1-800-4PD-INFO (1-800-473-4636).
Find the right therapist.
Mental health providers can be in short supply depending on where you live or what type of insurance you have. Be persistent and consider virtual sessions if you are unable to find a therapist in your area.
It may be difficult to find a therapist who is familiar with PD, but those who are specialized in chronic illness, grief, anxiety and depression can often address common feelings and experiences of living with a PD diagnosis
Look for a therapist who inspires feelings of comfort and confidence. Don’t be afraid to consider a different therapist if the relationship or chemistry doesn’t work for you. Your doctor, healthcare team, support group, friends or family may be able to offer referrals. The Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) can also provide information on therapy professionals in your community.
Consider medication for mood.
Sometimes people with PD needmedications to improve depression, anxiety and other mental health challenges just as they do for the treatment of movement symptoms.Neurologists, psychiatrists, psychiatric nurse practitioners or physician assistants are among the medical providers who can help find the right mood medication for you.
An individualized approach that includes a combination of the right medications, counseling, exercise and social support has been found to be the best approach to supporting mental health.
Make necessary lifestyle modifications.
Exercise is medicine for PD. Not only is movement vital to managing movement symptoms (such as balance, strength and mobility) and overall disease progression, research has found that increasing physical activity and creating a regular exercise plan can improve depression and anxiety.
Additionally, regular social engagement, relaxation time and non-PD-related activities help promote a healthy balance.
Helpful Resources
The Parkinson’s Foundation is here for you. Explore our mental wellness resources now:
Get out and move with your community! Every dollar raised supports the Parkinson’s Foundation mission to make life better for people affected by Parkinson’s disease (PD). At Moving Day Community Walks across the country, we’re fighting Parkinson’s and celebrating movement — proven to help manage Parkinson’s symptoms — and we’re doing it together. The Moving Day Community Walk Program is a complement to the Parkinson’s Foundation Moving Day, A Walk for Parkinson’s. These walks are family-friendly and help the Foundation make life better for people with PD.
The Community Walk program offers volunteers an opportunity to organize a walk in their own community that does not have a Moving Day event. The program leverages the personal experiences and community leadership of passionate volunteers to promote Parkinson’s awareness and raise funds for the Parkinson’s Foundation.
