Understanding Young Onset Parkinson’s Disease

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What is Young Onset Parkinson’s Disease?

When Parkinson’s disease (PD) is diagnosed between the ages of 21 and 50, it is called young onset, or early onset Parkinson’s disease (YOPD). Though symptoms overlap with typical PD, younger people face unique challenges, and even some surprising advantages, in managing the disease.  

Who Gets Young Onset Parkinson’s Disease?

Around 10% of all Parkinson’s cases meet the criteria for early onset, meaning roughly 9,000 new U.S. diagnoses annually fall in this age range.

Any person’s risk of developing PD is due to a combination of genetic and environmental risk factors. Genetic factors may play a larger role in YOPD compared to late-onset cases and include mutations in specific genes such as PRKN, LRRK2, DJ-1, SNCA and PINK1. Factors in the environment that contribute to PD risk have been getting increasing amounts of attention, with concern directed at pesticides such as paraquat and solvents such as trichloroethylene (TCE).  Many other environmental factors may be important and research to uncover these contributors is vital.  

What Makes Young Onset Parkinson’s Different?

Juggling the social, financial, and mental health impacts of a diagnosis at an earlier stage of life — while also managing the symptoms of a chronic, neurological disorder — can make the experience of people with YOPD quite different from that of their older counterparts. Dating, parenting, and career progression are just a few of the additional concerns that someone with YOPD could be navigating.

Below is an overview of the many facets of YOPD to consider. Each topic is complex, and each person experiences PD in a slightly different way, so use the information below as a framework for further discussion.

How Symptoms for Young Onset PD Differ

Younger people typically experience a slower disease course, with fewer cognitive issues and longer maintenance of daily function.

People with YOPD may be more susceptible to motor fluctuations while on levodopa therapy. Motor fluctuations, also known as ON-OFF times, are changes in a person’s ability to move throughout the day and are due to periods of time when a person’s levodopa works well and allows for good movement, alternating with periods of time when the medication wears off and becomes less effective.

Levodopa-induced dyskinesias (LIDs, or involuntary and uncontrollable small, writhing movements) and dystonias (sustained, twisting movements) typically occur at times throughout the day, either when the brain experiences peak doses of levodopa or rapid increases or decreases in levodopa levels.

Cognitive decline is less common in YOPD than in the general PD population.  On the other hand, pain and mental health concerns such as anxiety and depression can be more substantial in younger patient populations with PD.

Diagnosis and Genetic Testing for Young Onset PD

Diagnosing PD in younger patients can be delayed or misdirected because doctors may not immediately suspect PD before the age of 50.  Be persistent if you feel your doctor is too quick to dismiss your concerns and seek a second opinion if needed.

Genetic testing is increasingly available and may help identify inherited causes.

Treatment for YOPD

Whereas treatment options for YOPD and late-onset PD are generally the same, there are some differences in the approach to treating YOPD.

Medications and Surgery:

As mentioned above, younger individuals may be more vulnerable to motor fluctuations, dyskinesias, and dystonias from levodopa treatment.

Doctors may begin with other medications such as MAO-B inhibitors (selegiline, rasagiline, safinamide), dopamine agonists (pramipexole, ropinirole, rotigotine), and amantadine (which can help with PD-related movement symptoms and reduce dyskinesia).

At some point however, levodopa becomes necessary to adequately treat the tremor, slowness, and stiffness of PD. When LIDs and motor fluctuations become problematic and affect quality of life, advanced therapies are considered. These include carbidopa/levodopa or apomorphine infusion therapies, deep brain stimulation, and focused ultrasound. Deciding between these options can be challenging and requires a knowledgeable movement disorders physician to help a person with YOPD navigate the options.

In addition, physical, occupational, and speech therapies are essential, and younger patients often respond well to therapy due to greater baseline strength and mobility.

Fitness:

Research has demonstrated that exercise in PD can be very effective in treating motor and non-motor symptoms and may even be a neuroprotective agent. A person with YOPD should aim to do aerobic exercise that increases heart rate at least five times a week.  Activities such as dancing, yoga, and non-contact boxing can all be beneficial. People diagnosed with PD at any age are encouraged to start exercising. APDA’s Be Active & Beyond exercise guide can help you get started.

“You have to start somewhere, so even if you’ve never worked out, do it in baby steps, and before you know it, you’ll be able to do more. I promise you – I couldn’t do more than one pull-up, and now I can do fifty.” – Steven Eury, noticed symptoms in his late 20’s

Complementary therapies, such as art and music therapy, may also help when implemented into treatment plans.

Diet and Nutrition:

A healthy diet is associated with improved brain health and increased energy levels. Consuming a Mediterranean diet, which incorporates fruits, vegetables, legumes, whole grains, olive oil, fish, and nuts may slow cognitive decline and support neuronal health. Decreasing ultra-processed foods may reduce inflammation and oxidative stress, which are both implicated in PD progression. It is also important to understand how food and your medications may interact. In some people, dietary protein can interfere with levodopa absorption, requiring the need to separate medication doses from protein intake.

Social and Life-Stage Challenges

Younger people diagnosed with PD often face unique emotional and social hurdles. It may be difficult for people newly diagnosed with PD to navigate the right time to disclose their diagnosis to their family, employer, romantic partner, and peers.

“The support has been phenomenal, and it has been incredibly heartwarming for me to see. I didn’t anticipate feeling this amount of love, and a part of me regrets not telling people sooner. The amount of brain energy and time that I spent on hiding symptoms was enormous and added a huge amount of stress to my life. Once I told everyone, I had a tremendous sense of relief. YOPD creates a lot of unique challenges, and most people will not understand what we are going through, but you are not alone.” – Bryan Hill , diagnosed in his early 30’s

Family and Parenting:

Balancing PD symptoms with raising children, perhaps being a care partner of an elderly parent, and deciding when/how to share the diagnosis with loved ones all present significant challenges to YOPD patients.

“I think what puts our kids in a very beneficial place is that we’re teaching them lessons they will never learn anywhere else. They will be more empathetic, more understanding, and more insightful.” – Allie Toepperwein , diagnosed at 37

Here are some additional resources for parents with PD:

My Mommy Has PD
Talking to Your Teen About PD
Dr. Gilbert Hosts: Parenting and PD

Employment Concerns:

When to disclose a diagnosis to an employer, how to maintain productivity, and whether to modify a role at work are all career challenges that a person with YOPD faces. Career planning and legal protections (like The Americans with Disabilities Act, or ADA) can help. YOPD may unfortunately lead some to leave the workforce earlier than planned, leading to emotional and financial stress. Questions about disability benefits may be answered by lawyers or financial planners with expertise in this area.

Peer Support:

Many benefit from YOPD support groups, which focus on concerns about family, work, dating, independence, and wellness. Connect with an APDA Chapter or Information & Referral Center near you to find a support group in your area.

Living with Young Onset Parkinson’s

At diagnosis, YOPD can feel overwhelming, but there is reason for optimism. Younger individuals often respond more robustly to therapies, benefit from healthier baselines, and have time to adapt and plan. Scientific and clinical progress continue to build hope with earlier detection tools, gene-based understanding, and lifestyle-based interventions that all carry the potential to transform outcomes.

If you or someone you love has been diagnosed with YOPD, it is important to know that you are not alone. Connect with specialized medical care, build a supportive team (family, peers, clinicians, etc.), and strive for the best possible outcomes while incorporating lifestyle changes to take control of how you combat PD.  APDA can help you every step of the way.

Tips & Takeaways:

• YOPD is defined as PD that occurs between the ages of 21­–50 and represents about 10% of all cases of PD.
• Genetic factors may play a larger role in YOPD compared to late-onset cases.
• People with YOPD may be more susceptible to motor fluctuations and levodopa-induced dyskinesias than others and may benefit from advanced therapies in consultation with a movement disorders physician.
• Essential lifestyle modifications include participating in regular aerobic exercise and eating a Mediterranean diet
• Physical, speech, and occupational therapies are essential for maintaining function.
• Mental health issues such as anxiety, depression, and stress must be addressed.
• Many people with YOPD have concerns about family and employment and may benefit from peer support to help them navigate these issues.
• To learn more, see our early onset Parkinson’s page

This blog was written by Clark Jones, PhD, and was reviewed, edited, and approved by Dr. Rebecca Gilbert.

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