APDA American Parkinson Disease Association
Information & Referral Center

Recently Diagnosed with Parkinson's Disease?

This page is focused on issues of the newly diagnosed, including Young Onset Parkinson's. At the bottom, are a few non-English language resources. More general information about Parkinson's disease can be found on our PD101 page.

Relevant Publications - Downloadable

Diagnosis Parkinson's Disease: You are Not Alone
Published by Parkinson's Disease Foundation, 2009.
This 30-page booklet serves to answer questions that may arise upon diagnosis.

Parkinson's Disease Handbook
Published by American Parkinson Disease Association, 2009.
This 44-page booklet reviews the symptoms, cause, and treatment of PD. There are also sections on social issues and patient support as well as a glossary of key terms.

Parkinson's Disease Q&A, Sixth Edition
Published by Parkinson's Disease Foundation, 2012.
This 68-page booklet answers the most frequently asked questions about PD symptoms, treatments, common problems and research.

 

Relevant Online Information

Guide for the Newly Diagnosed
Published by the Michael J. Fox Foundation.
This is a list of 45 questions and answers, applicable to someone newly-diagnosed with PD. It is a compilation of the experiences of six people with PD.

“Pronostico de la Enfermedad de Parkinson”
Publicado por Michael J. Fox Foundation
Esta breve pagina web incluye;  Me han diagnosticado enfermedad de Parkinson. Debería obtener una segunda opinion?  Como puedo sobrellevar mi diagnostico?  Que implica para mi la enfermedad de Parkinson?  Como evolucionara mi enfermedad de Parkinson?  Morire debido a la enfermedad de Parkinson?  Como puedo ayudar a encontrar una cura?  

“Surprising Gifts Parkinson’s has Given Me,” bu Amy Dressel-Martin, MA
Published by the Davis Phinney Foundation, January 23, 2017
This short essay was written by a woman with young onset Parkinson’s disease, who had DBS.  She reflects on how Parkinson’s has changed her priorities for the better, and introduced her to wonderful friends.  She may be happier now than she would have been without Parkinson’s disease.  She certainly has more gratitude.

“What is Parkinson’s?”
Published by the Michael J. Fox Foundation
This one page info-graphic gives the statistics on Parkinson’s disease to promote awareness and research support.  It tells how many people have it, what are some lesser-known symptoms, when the best drug was developed, what causes it, what tests are there, that are the early symptoms, and more.

 

Relevant Online Lectures and Webinars

“Assembling Your Team to Manage Your Best Life with Parkinson’s Disease”
By Partners In Parkinson’s, May 6, 2015
This 1-hour audio with slides is an interview of a movement disorder specialist, social worker, and speech and physical therapist.  They discuss the breadth of medical professionals who treat aspects of Parkinson’s disease and actions you can take to build the right health care team upon diagnosis, to addresses your experience with Parkinson’s: from mobility issues to relationship implications.

Diagnosis Parkinson's Disease: You are Not Alone
Produced by Parkinson's Disease Foundation, 2009.
This 25-minute video is a companion to Parkinson's Disease Q&A. It was created to provide some comfort and encouragement for a person who has just been diagnosed with Parkinson's disease. It includes testimonials from people with Parkinson's on how they learned to cope and live with the diagnosis, scientific and medical information from healthcare experts and helpful tips and resources. A DVD can be ordered from the Parkinson's Disease Foundation.

“Diagnosis PD, Now What? Managing the First Few Years with Parkinson’s”
By the Parkinson’s Disease Foundation, March 7, 2017
In this 1-hour webinar Dr. Suketu Khandahar reviews the basics of Parkinson’s symptoms and diagnosis, the honeymoon period, and uses simple diagrams to demonstrate the benefit of exercise, developing a care team and working with them effectively, when to start medications, the importance of becoming an informed patient and creating a sense of community.

“Parkinson’s Disease - Introduction to Treatment”
Produced by Panorama Patient Network, 2017.
In this 12-minute video, neurologist Matt Stern, MD, explains how Parkinson’s disease is often best treated with a mix of medications.  Using low doses minimizes the risk of long-term side effects.  In the second half of the video, neurologist Susan Fox, MD, discusses the importance of lifestyle in dealing with Parkinson’s disease, emphasizing the importance of sleep and exercise.

Parkinson's Diagnosis - Real Life Stories
Published by Parkinson's UK.
There are over 50 online videos of people in the UK describing being diagnosed with PD.

“Parkinson’s 101: Know Your PD Meds”
Published by Jasmine Sturr on YouTube, May 20, 2016
This 26-minute video is a comprehensive overview of parkinson’s medications.  Ms. Sturr was diagnosed with Juvenile Parkinson’s.  She has a bachelor’s in chemistry.  This video is a guide for patients to understand the options, how they work, and why your doctor is prescribing them.

“Patient Voices: Parkinson’s Disease,” by Karen Barrow
Published by The New York Times, August 2008
Patient Voices is an audio-visual series that tells the stories of people living with chronic illness.  The Parkinson’s Disease edition has 5 videos about people diagnosed in different stages of life and their different paths to live with it.

 

Relevant Publications for Young Onset PD - Downloadable

"Young onset" is a loosely-defined term. In the medical community, it refers to those diagnosed with Parkinson's Disease at age 39 or younger. In the PD community, it often refers to those who were diagnosed with Parkinson's Disease at age 49 or younger. Whatever the age, this is the best print publication, offering basic information on YOPD -- perfect for someone newly-diagnosed with young onset PD. It is downloadable at no charge.

“Ask the MD: Young-Onset Parkinson’s Disease”
Published by the Michael J Fox Foundation, November 7, 2016
This 3:58-minute video by Dr. Rachel Dolhun defines the age at which Parkinson’s is termed young-onset and outlines their unique circumstances as they may have young children and be employed.  They are frequently misdiagnosed as they may have different symptoms from those diagnosed later in life.  Approach to symptom management may also differ due to long-term use of medications.

"Young Parkinson's Handbook: A Guide to Patients and Their Families"
Published by American Parkinson Disease Association National Young Onset Center, 2008.
This 53-page booklet provides the basics on PD and YOPD. There are also chapters on mind, memory, and behavior as well as changing roles and relationships.


Non-English Publications

“10 cosas que puede hacer ahora!” (in Spanish)
Published by American Parkinson Disease Association
This 2-page brochure verifies that most people with PD can live well for many years with a positive attitude and good health care habits.  It suggests 10 ways to take action toward living well with Parkinson’s disease.

An Introduction to Parkinson's Disease (in Chinese - complex characters)
Published by American Parkinson Disease Association, 2009.
This 4-page introduction to PD was translated into Chinese. (The English language 4-page introduction is also provided.)

 

Last updated by Denise Dagan and Robin Riddle for Stanford Parkinson's Community Outreach, January 2017.

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