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April is National Parkinson’s Awareness Month, a great time to share helpful resources that can spread awareness about Parkinson’s disease.
Parkinson’s affects more than 1.1 million people in the U.S. and is the second-most common neurodegenerative disease after Alzheimer’s disease.
With this in mind, let’s learn more about Parkinson’s, how it impacts patients and families, and resources to share during Parkinson’s Awareness Month.
What Is Parkinson’s Disease?
Parkinson’s disease is defined as a “type of neurologic movement disorder, affecting the brain and causing difficulty with movements, or motor symptoms.”
While Parkinson’s can be characterized by its most common motor symptoms like tremors, stiffness or rigidity of the muscles, and slowness of movement (bradykinesia), it can also bring about non-motor symptoms including sleep problems, constipation, anxiety, depression, and fatigue, among others.
“It is a chronic and progressive condition, meaning that the symptoms become worse over time and can affect the ability to perform common, daily activities,” according to the American Parkinson’s Disease Association.
Research on prevalence of Parkinson’s found that men are more likely to have it than women and the number of those diagnosed increases with age, regardless of sex.
“The study found that the prevalence of people diagnosed with [Parkinson’s] varies by region. Researchers are currently working to find out how,” according to the Parkinson’s Foundation.
1. The Parkinson’s Foundation
The Parkinson’s Foundation provides people living with Parkinson’s and their families information to help better understand the disease and its causes and symptoms.
Additionally, the Parkinson’s Foundation has free resources that allow people to ask questions through email or phone hotline, a hospital safety guide that helps patients and caregivers plan and prepare during hospital visits, and ways to join online communities and discussion groups to connect with other people and families experiencing Parkinson’s.
The foundation also has a Parkinson’s Library with resources on different topics.
Patients and families can find help with seeking care, mental health resources, and access Spanish-language resources.
To browse the different tools, visit the Parkinson’s Foundation website.
2. The Michael J. Fox Foundation for Parkinson’s Research
The Michael J. Fox Foundation (MJFF) aims to improve Parkinson’s treatments and works to help find a cure.
“In practice, that means identifying and funding projects most vital to patients; spearheading solutions around seemingly intractable field-wide challenges; coordinating and streamlining the efforts of multiple, often disparate, teams; and doing whatever it takes to drive faster knowledge turns for the benefit of every life touched by [Parkinson’s],” the MJFF states.
Along with the goal of advancing research, the MJFF also strives to support Parkinson’s patients.
The MJFF provides resources for newly diagnosed patients along with assistance with building a care team and resources in Spanish.
There is also information on government insurance programs through MJFF for those in need of care assistance.
Educational content including webinars and podcasts on different topics.
“While we will never be satisfied until the cure is found, we take pride in our clear, wide-ranging track record of impact on the Parkinson’s research field,” according to the MJFF.
Additional resources and information can be found on the MJFF website.
3. The American Parkinson’s Disease Association
The American Parkinson’s Disease Association (APDA) aims to provide support and helpful tools to patients and families experiencing Parkinson’s.
A resource library includes:
- Parkinson’s Disease Handbook
- Questions to Ask Your Doctor About Parkinson’s Disease
- A Community connections page
- Spanish-language resources and more
A virtual events calendar is also available.
Information on medication, diet and nutrition, mental health, exercise, and more can be found on the “Living with Parkinson’s” tab.
Visit the APDA’s full website to access all of the available resources and information.
Volunteer for a Clinical Trial for Your Familia!
Diseases like Parkinson’s can hurt many of our abuelos, moms, dads, and others we love.
Clinical trials help us fight for our familia.
Clinical trials are studies that help researchers learn more to help slow, manage, and treat cancer, dementia, and other health conditions for current and future family members. But without volunteers for clinical trials, the benefits may miss this group.
Visit our clinical trials page to find a clinical trial, read about hero volunteers, and more!
“Volunteers in clinical trials are not only helping themselves, but they’re also building a future with better treatments that can help their families in the future,” said Dr. Amelie Ramirez, director of Salud America! and the Institute for Health Promotion Research at UT Health San Antonio.
Those looking for opportunities based in San Antonio can search the Mays Cancer Center at UT Health San Antonio’s Find a Clinical Trial database to learn more about available clinical trials and eligibility requirements.
On a national level, visit clinicaltrials.gov to find a clinical trial near you.
By The Numbers
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