WELCOME TO THE EVERY VICTORY COUNTS COMPANION SITE
While we love holding actual books in our hands, we also know they come at a price. And that price is the time, resources, and money it takes to update it every time we learn about a new study, breakthrough, medication, or protocol related to Parkinson’s. So, this companion site is our answer to that dilemma. We want the Every Victory Counts manual to be a living document that can be changed and updated in real time as new information becomes available. Welcome!
Following the organization of the Every Victory Counts print manual, the supplemental content on this site is organized into three main sections: Living with Parkinson’s (which includes additional content to supplement Chapters 1-6), Parkinson’s Treatments and Therapies (to supplement Chapters 7-11), and Living Well with Parkinson’s (to supplement Chapters 12-16). You will also find content about YOPD, women and Parkinson’s, living alone with Parkinson’s, and Parkinson’s research, as well as sections for Every Victory Counts worksheets, discussion guides, and audio recordings.
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Special Interest Topics
Young Onset Parkinson’s Disease (YOPD)
Regardless of age at the time of diagnosis, your Parkinson’s is unique to you. No two people experience Parkinson’s the same way, and symptoms, severity, rate of progression, and other aspects of Parkinson’s can vary greatly from one person to the next. However, when you’re diagnosed with Parkinson’s under the age of 50, your unique Parkinson’s journey is likely to be quite different from the journey of someone diagnosed later in life. In this collection of YOPD resources, we’ll look at how.
Women and Parkinson’s
In general, women and men diagnosed with Parkinson’s experience differences in presenting symptoms, sleep problems, cognitive impact, responses to surgery, medication side effects, emotional health, and the care partner experience. When a woman is diagnosed with YOPD, you can add challenges related to contraception, pregnancy, menstruation, menopause, hormones, body image, aging, and more, to their plate. Here, we’ll hear from women living with YOPD and Parkinson’s experts about the Parkinson’s journey for women.
Living Alone with Parkinson’s
Many people with Parkinson’s may not reside with a spouse acting as a care partner or have children or other family members nearby who can help. When you live alone, staying informed, being engaged in your own health, and remaining connected to your friends and community become even more critical. There are numerous ways to stay connected and involved (for more on that, see the chapter about social connection), create a safe living environment for yourself, find the help you may need, and more. In this resource collection, we’ll take a close look at strategies on living well with Parkinson’s when you live alone.
Parkinson’s clinical trials, surveys, and studies for Parkinson’s treatments can be as simple as completing an online form or as involved as a years’-long drug trial. Some trials are observational, where researchers simply monitor participants in their natural state over time. Others are interventional, where participants take a new medication or modify their behavior, such as incorporating a new exercise routine or eating plan so researchers can see how the changes impact their Parkinson’s symptoms. In this research resources collection, we’ll explore the different types and phases of research, why people choose to get involved, and more.