## Breadcrumb - [Home](/) - [Resources & Support](/resources-support) - [Parkinson's Today Blog](/resources-support/blog) ## Breadcrumb - [Home](/) - [Resources & Support](/resources-support) - [Parkinson's Today Blog](/resources-support/blog) Raise Awareness # Navigating the Challenges of Young-Onset Parkinson's Sep 29, 2020 ![Woman talking to her daughter](/sites/default/files/styles/no_sizing/public/images/navigatingyoungonset-blog_0.jpg?itok=1GEhAhUm) People living with [young-onset Parkinson’s disease](/understanding-parkinsons/what-is-parkinsons/young-onset-parkinsons "Young-Onset Parkinson's") (YOPD) ― those diagnosed before age 50 ― are often managing careers, raising families or juggling both at the time of diagnosis. Finding time to take an early, active approach to YOPD care can seem daunting, but it is essential. Discovering expert [team-based health care](/living-with-parkinsons/finding-care/building-your-team "Building Your Care Team") to treat your Parkinson’s disease (PD) needs can slow Parkinson’s progression and decrease symptoms. This is especially true for people diagnosed with Young-Onset Parkinson’s, where early intervention benefits can be monumental. Younger brains have greater neuroplasticity ― the ability to grow and change in response to therapy. *This article is based on a Parkinson’s Foundation Expert Briefing “Not What I Planned, For Me or My Family” hosted by Allison Allen, MSW, LCSW, from Duke University Medical Center, a [Parkinson’s Foundation Center of Excellence](/living-with-parkinsons/finding-care/global-care-network "Global Care Network").* ### Young-Onset Parkinson’s Distinctions About 100,000 of the nearly one million people living with Parkinson’s disease in the U.S. live with YOPD. While there are many [motor](/understanding-parkinsons/movement-symptoms "Movement Symptoms") and [non-motor symptom](/understanding-parkinsons/non-movement-symptoms "Non-Movement Symptoms") similarities between PD and YOPD, there are also notable differences: - Young-onset PD symptoms may progress slower. - People living with YOPD can be more likely to experience involuntary movements and muscle tightening or cramping like [dyskinesias](/understanding-parkinsons/movement-symptoms/dyskinesia "Dyskinesia") and [dystonia](/understanding-parkinsons/movement-symptoms/dystonia "Dystonia") from common PD medicines, such as levodopa. - There may be greater fluctuations between “on” and “off” times in YOPD. - People with YOPD are more likely to carry [genes linked to PD](/understanding-parkinsons/causes/genetics "Genetics & Parkinson's"), though not all who carry such genes will develop the disease. - Younger brains are capable of more easily learning or being trained or retrained after an illness or an injury. ### Prioritize Early Collaborative Care Though people with young-onset Parkinson’s are often in one of the busiest stages of life, prioritizing self-care is vital. It is also important to acknowledge your feelings surrounding the diagnosis and those of your family. Treat yourself with compassion. A movement disorder specialist (a neurologist skilled in movement disorders) is central to living optimally with YOPD. Early collaborative care ― including social workers, physical and occupational therapists, and other health professionals ― also improves quality of life. Baseline assessments with multidisciplinary care specialists can help you determine healthcare goals, discover opportunities to stay well or identify areas for improvement. ### Steps to Navigating YOPD After Diagnosis While a diagnosis can be disruptive and unexpected, it doesn’t have to stop you from reaching your goals. When you are ready, think about your current family and career responsibilities, and set up a new long-term plan. Take one step at a time as you move toward achieving your priorities. **1. Build a Care Team:** Work with your movement disorder specialists or neurologist to find the medication that is right for you. Your doctor can also help you determine which collaborative care specialists can help you further your goals. The Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) can recommend PD specialists in your area. **2. Talk to Family:** Parkinson’s affects everyone in the family. You may be concerned that telling your children you have Parkinson’s will cause undue worry. Fostering an[ open, honest and age-appropriate conversation](/library/fact-sheets/children-teens "Parkinson's and Your Children/Teenagers") early can help children understand PD-related changes and feel secure. **3. Tell Your Employer When You are Ready.** Many people with Young-Onset Parkinson’s are still working. You decide when, with whom and how to share your diagnosis. **4. Discover Community:** Whether finding a support group, educational program or [getting involved with a non-profit](/how-to-help "How You Can Help"), there are many ways to connect with others living with PD. Consider joining the Parkinson’s Foundation online [PD Conversations](https://www.pdconversations.org/s/) community, which features a [young-onset PD](https://www.pdconversations.org/s/topic/0TO3b000000kU5eGAE/young-onset) discussion group. **5. Genetic Testing:** People with YOPD who have children, or who are considering pregnancy, may wonder whether they carry a PD-related genetic mutation. The Parkinson’s Foundation [PD GENEration](https://www.parkinson.org/PDGENEration)[: Mapping the Future of Parkinson’s Disease](/advancing-research/our-research/pdgeneration "PD GENEration: Powered by the Parkinson’s Foundation") national testing initiative offers free, confidential Parkinson’s-related genetic testing and counseling. ### Planning Parkinson’s disease impacts the whole family. While it may seem challenging, planning for the future can alleviate stress and foster security. - Familiarize yourself with your disability and long-term care insurance policies. - Take [legal, financial and insurance planning](/living-with-parkinsons/legal-financial "Legal, Financial & Insurance") into consideration. - Complete health care power of attorney (HCPOA), advanced directive and family care plans. These documents are critical to your care ― and that of your family ― in an emergency, and they can always be updated. ### Proactive Ways to Live Well As important as it is to plan ahead, it is even more important to live well in the present. There are many steps you can take today to live your best life with Parkinson’s, start with these: - [Exercise](/living-with-parkinsons/treatment/exercise "Exercise") has known neuroprotective benefits for people living with PD. Good for the mind and body, exercise should be a top priority. - Stay ahead of symptoms by prioritizing [PD-related healthcare visits](/living-with-parkinsons/finding-care/global-care-network "Global Care Network") early in your journey. - Create a daily routine to realize goals. - Allow your plans and goals to evolve with you. - Grow your support system. **Explore the Parkinson’s Foundation [10 Helpful Young-Onset Parkinson’s Resources](/blog/tips/young-onset-resources "10 Helpful Young-Onset Parkinson's Resources") for more tips on living well with YOPD.** ## Related Blog Posts ![Woman working from home with family in the background](/sites/default/files/styles/500x360/public/images/2026-science-news-6-blog-hero.jpg?h=ed9ce7df&itok=FfSOrcf_) Science News ### [ Early-Onset Parkinson’s in Younger Adults Is Rising Worldwide, Global Study Finds ](/blog/science-news/early-onset-parkinsons-rising) READ NOW ![Simmering Headshot](/sites/default/files/styles/500x360/public/images/Simmering%20Headshot.png?h=9105c3fe&itok=eKTNHp-X) Advancing Research ### [ Meet a Researcher Aiming to Improve Early Detection and Diagnosis of PD ](/blog/research/meet-jacob-simmering) READ NOW ![Woman talking to her daughter](/sites/default/files/styles/500x360/public/images/navigatingyoungonset-blog_0.jpg?h=ae1281eb&itok=HWHHbNTg) Advancing Research ### [ Neuro Talk: Early-Onset Parkinson’s Disease (EOPD) ](/blog/advancing-research/early-onset-parkinsons) READ NOW [VIEW ALL BLOGS](/resources-support/blog) ### Subscribe for the latest news - Share on Facebook - Share on X - Share on LinkedIn