Amparo Network

The AMPARO Network (NeuroMat Support Network for Friends and People with Parkinson's Disease) is an initiative linked to the Research, Innovation and Dissemination Center in Neuromathematics (CEPID NeuroMat), which is supported by the São Paulo Research Foundation. Created in 2016, the AMPARO Network is a digital platform that brings together actions aimed at people with Parkinson's disease (DP), family members, caregivers, students, researchers, and professionals from different health areas such as doctors, nurses, physiotherapists, speech therapists, psychologists, nutritionists, social workers, occupational therapists, and lawyers.

History

The creation of the AMPARO Network was related to the need to expand access to qualified information about Parkinson's disease and to bring together people affected by the disease, healthcare professionals, and researchers. With the motto "Support this idea, combat helplessness, "the AMPARO Network addresses the comprehensive care of people with PD, including interprofessional treatments beyond medication. Since its creation, it has been coordinated by physiotherapist and researcher Maria Elisa Pimentel Piemonte, associate professor in the Department of Physiotherapy, Speech Therapy and Occupational Therapy at the Faculty of Medicine of the University of São Paulo (USP) and principal investigator at CEPID NeuroMat.

Based at USP, the AMPARO Network operates on the principle that care for Parkinson's disease should consider not only medication, but also functional, emotional, social, and environmental needs. In a country of continental dimensi.ons and with regional inequalities in access to specialized services, the initiative seeks to understand different Brazilian realities, disseminate accessible information, and encourage the participation of people with Parkinson's and their families in decisions related to care.

The research entitled Repark Brasil, which had the participation and support of several researchers from various regions of the country, conducted a survey that indicated that approximately 50% of patients with Parkinson's disease do not receive physiotherapy, less than 20% receive speech therapy, and less than 10% receive occupational therapy. This indicates the need for advancements in treatment for people with Parkinson's disease in Brazil compared to other countries.

Relevance of the AMPARO Network in te Brazilian context

Parkinson's disease is one of the major neurodegenerative diseases associated with aging. Data from the Global Burden of Disease Studies in 2021 estimated that approximately 11.77 million people were living with the disease worldwide that year, a significant increase compared to 1990.

In Brazil, a population-based study based on the ELSI-Brazil cohort estimated that approximately 536,000 people were living with Parkinson's disease in 2024, with a projected increase to about 1.25 million in 2060. The absence of mandatory reporting makes precise estimates of prevalence and territorial distribution difficult, but national studies indicate a high functional burden and a need for interdisciplinary care.

Approximately 1% of the world's population over 65 years of age is affected by Parkinson's disease, according to the World Health Organization, and its prevalence has doubled in the last 25 years (WHO, 2023). It is estimated that its prevalence will increase to 12-17 million people by 2040.

In addition to causing motor symptoms such as tremor, muscle stiffness, slowness of movement, gait and balance disturbances, it also causes non-motor symptoms such as cognitive decline, depression, gastrointestinal disturbances, sleep disturbances, among others. Combined, these symptoms contribute to loss of functionality, reduced social participation, and increased demand for rehabilitation, ongoing monitoring, and family support.

With the purpose of guiding, encouraging, and supporting people with Parkinson's Disease and their families, the Amparo Network develops various initiatives.

In addition to discussing strategies to overcome the difficulties caused by the disease, the AMPARO Network promotes online lectures for people with Parkinson's disease and their families and caregivers, as well as specific online lectures that are restricted to professionals who work with the disease.

The central objectives of the Amparo Network are:

• Network Formation
• Education and Training
• Interprofessional Care
• Accessible Content

The Amparo Network also aims to understand the population with Parkinson's disease in various regions of Brazil, beyond just those living in large cities. Its projects cover all five regions of the country, allowing it to identify and understand the main obstacles faced by individuals and professionals, considering the differences in economic, cultural, and social conditions, and to suggest public policies to address these needs.

Because of its affiliation with CEPID NeuroMat , a research center, the Amparo Network stands out by promoting the connection between basic research and its clinical application. The Amparo Network, together with CEPID NeuroMat, has contributed to research such as:

• The impact of motor, non-motor, and social aspects on the sexual health of women living with Parkinson's disease;
• The impact of motor, non-motor, and social aspects on the sexual health of men living with Parkinson’s disease;
• A non-expensive bidimensional kinematic balance assessment can detect early postural instability in people with Parkinson’s disease;
• Comparison of disability level between Early and Late Onset Parkinson's Disease using WHODAS 2;
• Association between balance performance in functional tests and two-dimensional kinematic analysis in people with Parkinson's disease;
• Comparison of the effects of a face-to-face and distance education program for people with Parkinson's disease: a randomized clinical trial.

NeuroMat develops new tools for the early diagnosis of Parkinson's disease as a result of its research and innovation activities. For example, NeuroMat has been researching the application of video games to identify possible cognitive and motor deficits in very early stages of the disease's development, not yet detectable by other methods, such as the use of the "Jogo do Goleiro." (Goalkeeper Game).

Among the activities of the AMPARO Network are: promoting a space for people with Parkinson's disease to share their experiences, disseminating the results of current research conducted by researchers with experience working with patients with Parkinson's disease, addressing sexual health for people with Parkinson's disease, and promoting physical activity, among other informative campaigns.

The AMPARO Network focuses on promoting education for people with Parkinson's disease, their families, and caregivers, so that they can perform self-care and care at home and have a more active role in decisions about the treatment of the disease.

During the COVID-19 pandemic, the AMPARO Network was active in Brazil as a channel for information and promotion of preventive measures to control the transmission of COVID-19 infection, such as social isolation. Recognizing that people with Parkinson's disease were among the population considered at risk, it disseminated on its website the results of studies published on people with Parkinson's disease infected with COVID-19, which showed that they are more prone to sudden worsening and suffer a greater risk of death. The Amparo Network went further, concerned with the care needed to combat the alterations and progression of Parkinson's disease, developing the campaign "Stay home, but don't stay still". The campaign's actions involved sending people, in PDF format, the complete or abridged exercise program from the book Weekly Exercise Program for Patients with Parkinson's Disease, published in 2003; and demonstrations of the program's exercises through live broadcasts on the Amparo Network's social media, thus reinforcing its social relevance.

Lectures

In its first year, Rede Amparo promoted a series of lectures that addressed various topics encompassing the lives of people with Parkinson's disease, as indicated below.

• How to improve the effectiveness of Parkinson's Disease medications through better management.
• How can you speak on the phone and be understood?
• Patient-centered care: what is it and why do we want it?
• Healthy role changes within the family in the face of Parkinson's disease progression.
• Overcoming obstacles: the steps to your rights
• Functional nutrition for people with Parkinson's disease
• I, a person with Parkinson's, and I, a caregiver: how can we work together to improve our quality of life?
• Changing attitudes towards Parkinson's Disease: shortening the path between receiving and giving.
• The importance of increased physical activity in slowing the progression of Parkinson's Disease.
• Have you ever fallen? Learn how to assess your fall risk and how to prevent them.
• How can an occupational therapist help improve the quality of life for people with Parkinson's disease?

Campaigns and Workshops

Among the campaigns already carried out by the Amparo Network are:

• AMPARO Workshop: In search of a better quality of life for people Living with Parkinson's Disease in Brazil;
• 'Stay home, but don't stay still'
• Sex and Parkinson's: We Need to Talk About It
• Exercise for Pre-Qualification
• Let's dance with Parkinson's

External links

• AMPARO Network website
• Goalkeeper Game Podcast
• Goalkeeper Game Podcast Podcast Living with Parkinson's

References

This article "Amparo Network" is from Wikipedia. The list of its authors can be seen in its historical and/or the page Edithistory:Amparo Network. Articles copied from Draft Namespace on Wikipedia could be seen on the Draft Namespace of Wikipedia and not main one.

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