7 things you need to do after a yopd diagnosis

What to Do Right After a Young Onset Parkinson’s Disease (YOPD) Diagnosis

Being diagnosed with Young Onset Parkinson’s Disease (YOPD)—which typically occurs before the age of 50—can be overwhelming. However, taking proactive steps early on can help you maintain a fulfilling, active, and independent life. Here’s what you should do next:

1. Educate Yourself on YOPD: Understanding YOPD will empower you to make informed decisions about your health and future. Unlike Parkinson’s diagnosed later in life, YOPD often progresses differently, with slower movement-related symptoms but a higher likelihood of dystonia (muscle cramps) and medication-related side effects.

• Parkinson’s Foundation - Young Onset Parkinson’s Disease: A comprehensive overview of YOPD, symptoms, treatment, and research.
• Davis Phinney Foundation - YOPD Resources: Offers guides, webinars, and inspirational stories.
  
• Michael J. Fox Foundation - Guide to the Newly Diagnosed: Provides essential information for navigating a Parkinson’s diagnosis.
  

2. Find a Movement Disorder Specialist (MDS): A general neurologist may not have the expertise needed to manage YOPD effectively. A Movement Disorder Specialist (MDS) is a neurologist with additional training in Parkinson’s disease and related disorders.

• Use the International Parkinson and Movement Disorder Society (MDS) Specialist Directory to locate a specialist near you.
• The Parkinson’s Foundation Helpline (1-800-4PD-INFO) can also help you find an MDS in your area.

3. Connect with Others Who Have YOPD: Joining a support group can help you feel less alone. There are many communities specifically for people with YOPD:

• YOPD Facebook Support Group: A private group where members share advice, personal stories, and encouragement.
  
• Twitchy Woman: A blog and community dedicated to women with Parkinson’s, including YOPD-focused content.
  
• PD Avengers: A global advocacy group working to end Parkinson’s and support those living with the disease.
  

4. Start Exercising Immediately: Exercise is one of the best ways to slow disease progression and improve symptoms. Research shows that people with YOPD who exercise regularly experience fewer movement issues and a better quality of life.

• Power Over Parkinson's: Exercise is the only known therapeutic that can actually slow the progression of the Parkinson's Disease.
  
• Rock Steady Boxing – A non-contact boxing program designed for people with Parkinson’s.
  
• PD Warrior – A high-intensity exercise program designed for early-stage Parkinson’s.
  
• Brian Grant Foundation Exercise Library – Features videos and exercise plans tailored for Parkinson’s.
  

5. Understand Your Treatment Options: Your doctor will discuss treatment options, which may include:

• Medication: Levodopa (Sinemet), dopamine agonists, MAO-B inhibitors, and more.
  
• Lifestyle Adjustments: Diet, sleep, and stress management.
  
• Surgical Options: Deep Brain Stimulation (DBS) may be an option later in the disease course.
  

For a deep dive into treatments, visit:

• Michael J. Fox Foundation - Treatments & Medications
  
• Parkinson’s Foundation - Medications
  

6. Plan for the Future: While YOPD progresses slowly, planning ahead can provide peace of mind:

• Work & Disability: Some people with YOPD continue working for years, while others may need to explore disability benefits. Learn more at Social Security Disability Benefits for Parkinson’s.
  
• Financial Planning: Consider consulting a financial planner who understands chronic illnesses.
• Legal Considerations: Establish a power of attorney and discuss long-term care options with loved ones.

7. Stay Informed & Get Involved: Advocacy and participation in clinical trials can help drive research forward:

• Fox Trial Finder – Find Parkinson’s clinical trials near you.
  
• The Cure Parkinson’s Trust – Dedicated to funding research for a cure.
• Parkinson’s Policy & Advocacy – Learn how to advocate for Parkinson’s funding and support.

Final Thoughts: A YOPD diagnosis changes your life, but it does not define you. By educating yourself, seeking expert care, staying active, and building a support network, you can continue to live a meaningful and independent life.

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Click on the below image to read an article from Yale school of medicine

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Exercise Equipment to get strong

Kettlebells

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