Two New Resources Will Enable APDA to Reach & Support More People With Parkinson’s
NEW YORK, NY, July 6, 2022 – The mission of the American Parkinson Disease Association (APDA) is to provide the support, education, and research to help everyone impacted by Parkinson’s disease (PD) live life to the fullest. However, it is challenging to meet this goal when everyone impacted by PD doesn’t speak the same language, or have access to reliable wifi, or live near medical specialists, etc. Therefore, it is part of APDA’s current three-year strategic plan toexpand its reach to under-served, under-studied and under-represented communities in order to promote health equality and access to care, and provide much-needed education and support. Just one step in this direction is the launch of two newly transcreated resources, the APDA Parkinson’s Disease Handbook, and the APDA Medical ID Card, both of which are now available in Simplified Chinese. They can be downloaded for free from the APDA website or free hard copies can be mailed to your home.
“We are very excited to launch these two key resources in Simplified Chinese as a first step in better serving the Chinese community,” states Leslie A. Chambers, President & CEO of APDA. “There are so many more people we want to help and support. We have created and translated a wealth of resources for the Spanish-speaking community and we will continue to expand those offerings; and now we are so eager to begin better serving those who speak Chinese as there is a severe lack of credible Parkinson’s disease information available to them. We still have a long way to go, but we are happy to make this progress.”
The APDA Parkinson’s Disease Handbook is an essential starting point and reliable reference guide for those who are newly diagnosed and anyone who is looking to learn more about PD. Everyone deserves the same level of care and support, but when there is a language barrier it can be challenging to get access to the information you need to understand your diagnosis, to feel empowered, and to make decisions about your treatment plan. The new APDA Parkinson’s Disease Handbook in Simplified Chinese can help. Chambers added, “we have yet to find such a thorough overview of the disease designed specifically for this community and we hope this resource fills an unmet need.”
To make sure the Handbook would be accurately translated and culturally relevant, APDA enlisted the help of several medical experts and staff who are fluent in Mandarin to oversee the project. Dr. Tao Xie, a movement disorders neurologist at the University of Chicago and the Medical Director of the University of Chicago APDA Information & Referral Center played a key role in this new Handbook. He explains, “many Chinese patients with Parkinson’s disease may find it difficult to fully understand the complexity of the disease and various terminologies in English. Their access to specialty care may not always be possible and their questions related to Parkinson’s disease may not be always properly answered. This handbook will break the language and terminology barriers and bring the up-to-date expert information to the Chinese-speaking members of our Parkinson community. It will greatly help them to better understand the disease features, and its diagnosis and treatment, and connect them to the people and organizations who care about them and will support them so they can live life to the fullest.”
The APDA Parkinson’s Disease Handbook has been designed to provide a strong overview of PD, including:
- an explanation of the disease
- common symptoms
- available treatments for disease management
- practical tips on caring for someone with Parkinson’s
- research currently underway
- and much more
In addition to the Parkinson’s Disease Handbook, APDA also translated it’s Medical ID Card into Simplified Chinese. Many people with PD exhibit symptoms that can be misconstrued, and the ID card can help alleviate these misunderstandings and put people at ease. It can also serve as an important form of communication with first responders when patients are in an emergency situation. The common visible symptoms of PD such as tremor, a masked expression, balance issues, and freezing of gait can cause others to think the person with PD is under the influence of alcohol or drugs or is acting suspiciously. The APDA Medical ID card not only clarifies the medical issue at hand, but also provides important emergency contact information.
Through its nationwide network of Chapters and Information & Referral Centers, along with an extensive array of virtual resources and programming, APDA can help people along every step of their PD journey. By creating resources in additional languages, they are able to expand their reach and serve and support more and more people impacted by PD.
To view a video statement from Dr. Tao Xie in English: https://www.youtube.com/watch?v=mpNjZIeuvKo
To view a video statement from Dr. Tao Xie in Mandarin: https://www.youtube.com/watch?v=Elx03hWoviA
For more information about APDA programs, services, support, and PD research visit www.apdaparkinson.org, call 800-223-2732, or email apda@apdaparkinson.org.
About the American Parkinson Disease Association:
The American Parkinson Disease Association (APDA) is the largest grassroots network dedicated to fighting Parkinson’s disease (PD) and works tirelessly to help the more than one million people in the U.S. with PD live life to the fullest in the face of this chronic, neurological disorder. Founded in 1961, APDA has raised and invested more than $226 million to provide outstanding patient services and educational programs, elevate public awareness about the disease, and support research designed to unlock the mysteries of PD and ultimately put an end to this disease. To join us in the fight against Parkinson’s disease and to learn more about the support APDA provides nationally through our network of Chapters and Information & Referral (I&R) Centers, as well as our national Research Program and Centers for Advanced Research, please visit us at www.apdaparkinson.org.