My name is Sydney Richards, and I am a student in the Master’s in Genetic Counseling Training Program at the University of Maryland School of Medicine. I am conducting a new research study to better understand the experience of individuals with Parkinson’s disease with genetic testing. My passion in this research is personal, as one of my family members has Parkinson’s disease.
People who have and have not had genetic testing are encouraged to take part! Individuals over age 18 who have a diagnosis of Parkinson’s disease, are English-speaking, and live in the US can take part in the study. We kindly ask those who have a caregiver or family member presently acting as their healthcare representative at medical appointments do not take the survey.
Participation consists of an anonymous, online survey that should take about 15 minutes to complete. We will ask questions about your demographic information, your diagnosis of Parkinson’s disease, and your experience with and opinions about genetic testing.
Participation in the study is voluntary. Your decision to participate will not affect your medical care.
Thank you for your consideration. We hope the knowledge gained will help to provide better patient care and to further provider understanding of the experiences of those with Parkinson’s disease with genetic testing.
If you are interested in learning more about this study, please use the link below by November 16th, 2021:
Master’s in Genetic Counseling Candidate
University of Maryland School of Medicine
Shannan Dixon, MS, CGC
Director, Master’s in Genetic Counseling Training Program
University of Maryland School of Medicine
You, Me, and PD Podcast
Hear their journey. Learn their perspective. Find strength in their words. Written & narrated by SEAYOPD members, Jeremy & Doreen Likness.
The Parkinson’s Fitness Project
Nate Coomer and staff run an incredible physical therapy business that specializes in Parkinson’s. They have developed a renowned facility that can help everyone improve mobility, emotional stability and strength. Please do check it out! We’re very lucky to live in the Seattle area and have Nate, France and the rest of the team to help care for us.
Not close enough to Nate’s clinics? The Daily Dose web-based program can be done from anywhere at any time. Access a series of 20-30 minute videos you can follow along with. They range from sitting in a chair-level exercises to full-on sweat your butt off and feel great afterwards levels.
Dr. Mischley CAM Study Information
The link has a great list of summaries of the information she has learned to date. There are three GREAT, simple, easy-to-read graphs that show you the +/- effects on PD symptoms of social, dietary and exercise habits. You can also participate in the research.
The Parkinson’s Experience podcast by Sheryl Lowenhar
Hear an interview with marathon runner, American Ninja Warrior, husband, father, son and PWP Jimmy Choi. This chat will give you the motivation to get out and move. Additionally, the two-part series on deep brain stimulation (DBS) gave one of us the knowledge needed to not be scared of something that even four years post-diagnosis was still scary.
When Life Gives You Parkinson’s podcast by Larry Gifford
Here’s another podcast that takes a light-hearted, informative look at life with PD.
FREE Online Activity Classes are coming from APDA NW
The American Parkinson’s Disease Association (APDA) Northwest Chapter has a wealth of resources available.
Washington State Parkinson Disease Registry
The purpose of the Washington State Parkinson Disease Registry is to make Parkinson’s disease (PD) research happen faster by connecting people with PD to the research community.
Oregon Health and Sciences University (OHSU) Deep Brain Stimulation Guide
Northwest Parkinson’s Foundation
Northwest Parkinson’s Foundation transforms the way people live with Parkinson’s. They provide free one-on-one navigation services in all areas of life impacted by Parkinson’s–such as employment, benefits, and family relationships–through their Social Work team. NWPF facilitates free educational events tailored for and by Northwest communities. NWPF is the local, independent and community-driven non-profit organization serving WA, ID, AK, and MT.
Davis Phinney Foundation
Newly diagnosed? Get the free Every Victory Counts manual (download or hard copy). You can also connect with an ambassador, participate in events and access resources.
Like Facebook? Want to connect with other PWPs there? Facebook groups are plentiful. From Facebook, go to Groups and Search Groups. Some we know about: SEAYOPD Group, Parkinson’s Road Fitness Fun, Young Onset Parkinsons, Very Young Parkinson’s Disease, STRONGHER Women Fighting Parkinson’s, YOPD Women Unite and Parkinson’s Disease Humor Group.
A new support group for single PWPs. This is not a dating group. The facilitator is a licensed mental health counselor. This a group for people to support each other through camaraderie.
If you are interested, contact firstname.lastname@example.org.
Pass to Pass
Pass to Pass is an eastern-Washington based non-profit that organizes llama-assisted hikes and camping trips for people with Parkinson’s along the Pacific Crest Trail and other locations.