An interview with Josefa Domingos, Josefa Domingos, Physiotherapy & Parkinson Europe on July 22, 2023 by George Ackerman, Ph.D, J.D.
Josefa Domingos is a Physiotherapist specializing in Parkinson’s with almost 20 years of working exclusively with people with Parkinson’s & other movement disorders. Josefa’s career has focused on creating and implementing specialized care for people living with Parkinson’s. In 2005, she played a pivotal role in introducing Parkinson’s disease specialized Health Services in Portugal and has since founded numerous specialized services for people with Parkinson’s across the country. Her expertise and commitment have significantly impacted the lives of countless individuals within the Parkinson’s community.
Josefa Domingos currently holds the position of National Health Coordinator at the Portuguese Parkinson Patient Association (APDPk). Furthermore, she is a co-founder of Young Parkies Portugal (YPP). As an educator, clinician, and researcher, she is currently finishing her Ph.D. on the Practicalities of Community-based exercise in PD at Radboud University Centre (The Netherlands) under the supervision of Prof. Dr. Bas Bloem and Prod. Dr. Joaquim Ferreira.
On an international scale, she is the current the president of Parkinson’s Europe and has been serving as a board member of Parkinson’s Europe since 2019. Josefa also contributes her expertise as a member of the scientific committee of the Davis Phinney Foundation and actively participates in the Wellness Group of the Movement Disorder Society (MDS). Her involvement in these esteemed organizations highlights her dedication to advancing Parkinson’s research, advocacy, and support both nationally and internationally.
Please tell me a little about your background and what got you involved with awareness.
I have been working as a physiotherapist in Portugal for over 20 years, specializing in Parkinson’s disease. I joined the Portuguese Parkinson Patient Association (APDPk) as a clinician in 2004 and later became the National Health Coordinator. In this role, I have been focused on creating and implementing specialized community care for people with Parkinson’s. This focus has also driven me to actively engage with the international Parkinson’s community, fostering collaboration and knowledge exchange on a global scale.
Can you tell me more about your advocacy?
I have been actively engaged with various well-known Parkinson’s disease advocacy organizations for many years. Currently, I serve as a clinician and National Health Coordinator at the Portuguese Parkinson Patient Association (APDPk) since 2004. Additionally, I co-founded Young Parkies Portugal (YPP) in 2022, focusing on addressing the needs of young onset people with PD in Portugal. At present, I also hold the esteemed position of President at Parkinson Europe, the sole European Parkinson’s umbrella organization that has been tirelessly advocating and collaborating with the global Parkinson’s community for nearly three decades.
Through these organizations, I contribute to diverse advocacy efforts concerning Parkinson’s disease, including raising awareness, supporting research, providing resources, enhancing care services, and striving for improved policies. My involvement in these initiatives includes organizing awareness campaigns, educational events, and initiatives to educate the public about the impact of Parkinson’s on individuals and their families. As part of my commitment, I actively participate in support groups, online forums, and helplines, offering assistance and support to those in need through emails, phone calls, and SMS communication.
Given my professional background as a physiotherapist, I have been passionately engaged in activities aimed at enhancing access to specialized care and services for people with Parkinson’s. I have also played a pivotal role in creating platforms for the exchange of experiences, knowledge, and best practices in the realm of exercise and Parkinson’s management.
Moreover, my involvement with Parkinson Europe allows me to contribute to advocating for improved policies and legislation related to Parkinson’s at a European level. In this capacity, I work to influence policymakers to better support the needs of Parkinson’s patients and their families.
Furthermore, my dedication to advancing Parkinson’s research extends to my participation as a member of the scientific advisory board for the Davis Phinney Foundation. This role involves reviewing research grant applications to ensure that valuable projects receive the necessary funding to drive progress in the field of Parkinson’s research.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is simple – helping those affected by Parkinson’s. This has driven my involvement in many organizations and initiatives over the years. Through my work, I am committed to making a positive impact on the lives of people with Parkinson’s and their families, striving to enhance their quality of life and provide them with the support, treatment, and care they need to face the challenges of the condition with strength and resilience. I am committed to empowering them to lead fulfilling and comfortable lives despite the challenges posed by the condition.
What type of goals do individuals with Parkinson’s awareness have when working with you?
I believe the primary goal of individuals with Parkinson’s disease (PD) who work with me in Parkinson’s awareness is to have a positive impact on the lives of others affected by the disease. They strive to achieve this by increasing understanding, providing support, and enhancing access to resources, ultimately improving the quality of life for individuals living with Parkinson’s and their families.
In the Young Parkies Portugal (YPP) association, there is a specific focus on awareness and support initiatives for young onset Parkinson’s, acknowledging the unique needs and challenges faced by this particular group.
However, regardless of the organization, people with Parkinson’s disease strive to work alongside healthcare providers and stakeholders to increase their collective impact and collaborate towards raising awareness and providing support for Parkinson’s. One of our main objectives is to empower individuals with Parkinson’s to take an active role in their own care, self-management, and decision-making, emphasizing the importance of exercise and personalized treatment plans. Together, we can raise awareness about Parkinson’s disease and create a more compassionate community for those living with the condition and their loved ones. By promoting understanding and support, we can make a positive impact on the lives of everyone affected by Parkinson’s.
What effect can your advocacy have on an individual with Parkinson’s awareness?
It has the potential to create a more supportive, informed, and empowered environment for an individual with Parkinson’s. Providing them with the necessary knowledge, resources, and a sense of belonging will enable them to navigate their journey with the disease more effectively and improve their overall well-being. Parkinson’s advocacy is crucial in connecting individuals who share similar experiences, offering them much-needed emotional support and reducing feelings of isolation. We strongly encourage people to lend a helping hand to others who are going through similar struggles, as it can bring immense fulfillment.
What would you like to see as a future goal for your advocacy?
I would like to see all Parkinson’s organizations promote and support research more so that we can accelerate our understanding of the disease and get quicker to the cure. Additionally, it also creates opportunities for individuals to participate in the development and design of clinical trials, allowing people to feel they can also fight back while potentially leading to advancements in treatments and a better future outlook.
I would also like to give people the opportunity to be part of a larger advocacy movement and empower individuals with Parkinson’s to become self-advocates. They can learn how to assert their rights, communicate their needs to healthcare providers, and actively participate in decision-making regarding their care.
What events do you participate in?
I actively engage in both national and international medical congresses that focus on Parkinson’s disease, such as the Movement Disorder Societies. In these events, I participate not only as a clinician but also as a representative of patient associations. Through these dual roles, I help bridge the gap between healthcare professionals and individuals living with Parkinson’s, fostering a comprehensive approach to understanding and managing the condition.
Furthermore, I have been a dedicated participant in the World Parkinson Congress since its inception, serving as a volunteer, teacher, and speaker. This longstanding commitment reflects my passion for advancing Parkinson’s awareness and education on a global scale.
In addition to my involvement in the Parkinson’s associations, I actively participate in various educational and practical events, and bootcamps focused on exercise, physiotherapy, and well-being in Parkinson’s. Here, I have the privilege of not only attending but also organizing and leading these initiatives. This active engagement allows me to empower others with valuable information, practical skills, and a supportive environment, enhancing their ability to manage Parkinson’s effectively.
How does this also assist the caregivers?
The significance of care partners is always at the forefront of our efforts in the activities mentioned earlier. We deeply value the role they play in supporting individuals with Parkinson’s, and we are committed to providing them with the best information when they need it most. Our goal is to empower care partners, ensuring they are well-informed and connected within the Parkinson’s community.
To further support care partners, I had the opportunity to collaborate with the nonprofit Inova Parkinson’s Disease and Movement Disorder Center to develop a dedicated program. This program is specifically designed to cater to the needs of care partners, offering valuable resources and tips. The program is accessible freely at https://ipmdc.org/care-partner-tips/. With this initiative, we aim to strengthen the support network for care partners, equipping them with the knowledge and tools to navigate their important roles with confidence and compassion. By enhancing the well-being of care partners, we believe we can ultimately improve the overall quality of life for individuals living with Parkinson’s and their families.
How can someone get in touch? What is your website?
Parkinson Europe website: www.parkinsonseurope.org
Young Parkinson Association in Portugal: www.youngparkiesportugal.org
Portuguese Parkinson Association: https://parkinson.pt/
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
For those living with Parkinson’s, their care partners, and their families, I wish you the ability to tap into your resilience and approach Parkinson’s with adaptability, strength, and patience. While the journey may be difficult, know that you have a community of individuals who are determined to thrive despite any challenges that come their way.
More on Josefa
Josefa Domingos is not only an accomplished professional but also the author of several research publications. She is a co-author of the European Guideline for Physiotherapy in Parkinson’s Disease (2010-2013). This significant publication was organized by esteemed organizations, including the Royal Dutch Society for Physical Therapy (KNGF), the Association of Physiotherapy in Parkinson’s Disease Europe, and the Movement Disorders Society. Josefa’s commitment to staying at the forefront of knowledge and expertise is evident through her consistent pursuit of additional education in specialized Parkinson’s courses. Some of these include the Allied Team Training for Parkinson’s Disease; LSVT BIG® program; Parkinson Wellness Recovery® training; Mark Morris Dance Group’s Dance for PD® Method; Ronnie Gardner Method®; Boxmaster® training; Boxercise®; Ageing, Physical Activity and Functional Independence graduate course; Aquatic NeuroRehabilitation Halliwick graduate course; Madrid Cognitive Rehabilitation Course and internship; Zumba Fitness and Gold®; MDS DBS Specializing Course; Strong by Zumba®; and Pound Drumming®. Additionally, she has been developing and researching dual-task cognitive and motor exercise programs for PD, adapting this concept to different exercise modalities (in-person & online https://dualtaskforparkinsons.com/). Furthermore, for over 12 years, she has been developing, organizing, and facilitating national and international rehab retreats/boot camps specifically designed for individuals with Parkinson’s in Portugal, the UK, Sweden, and the USA.
Internationally, she has participated in several European projects regarding People with Parkinson’s, such as Prk Treatment Eurostars Program project: Exercise System for Parkinson continuous treatment and rehabilitation (http://www.parkinsontreatment.eu/); Parkinson Disease Physiotherapy European Guidelines with Royal Dutch Society for Physical Therapy; REMPARK project (Personal Health Device for the Remote Management of Parkinson’s Disease). Project funded under the EU Seventh Framework Programme. http://www.rempark.eu/); FP7 funded project SENSE-PARK (2012—2015): Supporting and Empowering Parkinson patients in their home environment using a Novel Sensory information system that monitors daily life- -relevant parameters of Parkinson’s disease and their change (www.sense-park.eu); Physiotherapy outcomes multi-center research project in Huntington’s disease. European Huntington Disease Network (EHDN); ExerciseCast EPDA (https://www.epda.eu.com/exercisecast/) and keep it On (https://bial-keepiton.com/).
Josefa’s commitment to continuous learning and her contributions to various initiatives demonstrate her unwavering dedication to improving the lives of people living with Parkinson’s disease.
Example of recent publications:
Domingos J, Teixeira Bastos MDC, Couto R, Cameira AR, Cardoso AL, Reffóios A, Magalhães S, Massano J, Outeiro TF. People with Early Onset Parkinson’s Disease: Empowered to Improve Care. J Parkinsons Dis. 2023 May 8.
Martinez-Martin P, Skorvanek M, Henriksen T, Domingos J, Lindvall S, Alobaidi A, Kandukuri PL, Chaudhari VS, Patel AB, Parra JC, Pike J, Antonini A. Impact of advanced Parkinson’s disease on caregivers: an international real-world study. J Neurol. 2023 Apr;270(4):2162-2173.
Domingos J, Dean J, Fernandes JB, Massano J, Godinho C. Community Exercise: A New Tool for Personalized Parkinson’s Care or Just an Addition to Formal Care? Front Syst Neurosci. 2022 Jun 30;16:916237.