A Primer on Young Onset Parkinson’s Disease (YOPD)

If you do a quick search for images of Parkinson’s online, most of the ones you’ll see are of older adults in stooped positions.

This contributes to a common misconception that Parkinson’s only occurs in older people. Despite this, 4-10% of people who are diagnosed with Parkinson’s begin experiencing Parkinson’s symptoms before they are 50 years old. When symptoms are experienced under age 50, this is called young onset Parkinson’s disease (YOPD)*.

Reported rates of YOPD vary, in part because studies from different parts of the world have different rates and because past studies have used different age-ranges (some used 40 years, others used 45 years, while most used 50 years as the age cutoff for YOPD).

Age of onset matters because the emotional, social, physical, and psychological needs of those diagnosed with YOPD are different from those diagnosed at an older age. A person diagnosed with YOPD might be soaring in their career, expecting a baby, raising multiple school-age children, and/or getting ready to buy their first house. These are different concerns than those who are diagnosed later in life have.

Diagnosis and Misdiagnosis

Between 1990 and 2021, the number of people newly diagnosed with YOPD increased 286%. Importantly, when people under age 50 develop Parkinson’s symptoms, they are often undiagnosed or misdiagnosed, so the actual number of people living with YOPD has likely increased even more than that.

We’ve heard many stories about people with YOPD being misdiagnosed. Some have shared how the pain started in their shoulder, so they were referred to an orthopedist and misdiagnosed with impingement or frozen shoulder. Others experienced depression for the first time and were told it was all in their head. Their doctor prescribed an antidepressant medication, which didn’t solve the issue. Some were told they were too young to have Parkinson’s. While receiving a Parkinson’s diagnosis is rarely a clear process no matter your age, people who are younger often face a more circuitous path than those who are older.

Once people are diagnosed with YOPD, they often struggle with how to share their diagnosis. Because of fear of potential consequences, some choose not to tell their boss or co-workers. Some feel isolated because they don’t know anyone else their age with Parkinson’s. Some withdraw completely because facing it head-on is too overwhelming.

These are all normal responses to hearing news that you have a chronic and progressive disease; however, delaying the start of appropriate care due to all of these factors can negatively impact the quality of your life. Starting a regular exercise program, improving sleep hygiene, taking your medications consistently, connecting with others, and eating well are all undertakings you can control. More importantly, getting support from others will give you an even better chance of making sure you do.

What’s Different About YOPD Compared To Diagnosis After 50?

Despite similarities, YOPD and a Parkinson’s diagnosis after age 50 differ in clinical features and social, psychological, and emotional issues.

YOPD is diagnosed based on the same three symptoms of Parkinson’s: 1) rigidity, 2) slowness of movement (bradykinesia), 3) and resting tremor. People with YOPD tend to experience slower progression of symptoms, but just as with later onset Parkinson’s, a diagnosis of YOPD requires a doctor to observe bradykinesia and just one of the other cardinal symptoms.

Compared with later-onset Parkinson’s, YOPD often has the following characteristics: a greater likelihood of a genetic componen, longer survival rate, stronger positive response to carbidopa-levodopa (the most common medication used for Parkinson’s), more motor fluctuations (ON/OFF periods) and greater dyskinesia (sudden uncontrolled movements) due to the side effects of medications. 

Though each person with YOPD experiences Parkinson’s differently, this table compares common clinical features of YOPD to a Parkinson’s diagnosis after age 50.

Clinical Features	YOPD	Diagnosis after age 50
Progression	Slower	Faster
Tremor	Less common	More common
Rigidity	More common	Less common
Gait instability	Less common	More common
Family history	More common	Less common
Survival	Longer	Shorter
Motor fluctuations ON/OFF Periods	More common	Less common
Dyskinesia Sudden uncontrolled movements	More common Side effect of medications	Less common
Dystonia Twisting, cramping	More common	Less common
Depression	More common	Less common
Dementia	Less likely to develop	More likely

Management of YOPD Symptoms

A variety of treatments exist to help you manage YOPD symptoms. There are many behaviors you have control over. As our founder, Davis Phinney, says, “You cannot afford to be passive in your approach, whether we are talking about your day-to-day management or your interaction with your health care provider.”

Here are eight activities you can do today to live well with YOPD:

#1 – Exercise regularly

• Davis Phinney was diagnosed with YOPD at age 40. He exercises vigorously every day to feel better and reduce his symptoms.
• There is evidence that engaging in regular moderate-intensity aerobic exercise helps slow the progression of Parkinson’s.
• The earlier you start a consistent exercise program, the better you will feel physically and psychologically.

#2 – Take your medications consistently

• Your medication works best when it is at a constant level in your body. Follow your doctor’s recommendation regarding the timing of your dosages. 
• Watch this video and listen in as Dr. K goes into depth about the importance of medication timing.
• Read this post about protein and medication timing.

#3 – Find a Movement Disorder Specialist (MDS)

• A movement disorder specialist is a neurologist who has pursued specialized training in movement disorders. Outcomes are much better in people who see a movement disorder specialist because their doctors can customize treatment and fine-tune multiple medications.
• Click here to find a movement disorder specialist in your area.

#4 – Make an appointment with a physical therapist (PT) or occupational therapist (OT)

• One of the most common phrases we hear from people with Parkinson’s is, “I wish I had seen a physical therapist sooner.” Doing your daily exercise program isn’t enough. Physical therapists and occupational therapists create individualized exercises that meet your specific needs. The activities they recommend can improve your posture, gait, arm swing, and other movement challenges.
• Click here to find a Parkinson’s PT in your area.
• Click here to learn why you’ll want to work with a Parkinson’s OT.

#5 – Eat to support Brain and Gut Health

#6 – Visit a speech-language pathologist (SLP)

• Since as many as 90% of people with Parkinson’s experience difficulty with a raspy voice or soft speech, working with a speech therapist can help. Practicing voice exercises daily can improve your voice’s quality, which can help you in your job and your social life.
• Click here to sing along to the tune “Take it Easy” by the Eagles with Davis Phinney and his daughter, Kelsey. 

#7 – Learn and be open about your non-motor symptoms

• Depression, anxiety, and apathy are common in people living with YOPD. Because these topics can affect how you care for yourself, it’s essential to address them with your doctor.
• Watch Dr. Pontone discuss how depression, anxiety, and apathy are managed in Parkinson’s.

#8 – Practice good sleep hygiene

• Being well-rested can affect your mood and motor movements. By creating a sleep schedule, limiting daytime naps, and avoiding blue light (screen technology), you can develop habits that hopefully improve your sleep.
• Read this primer on sleep and Parkinson’s.
• Watch Dr. Postuma talk about treatment for sleep issues.

#9 – Consider Deep Brain Stimulation surgery (DBS)

• Talk with your doctor about whether you would be a good candidate for Deep Brain Stimulation (DBS). DBS is an FDA-approved surgical technique that involves a surgeon implanting a neurostimulator (similar to a pacemaker) that delivers electrical current to certain parts of the brain. When these targeted areas of the brain are stimulated, it blocks the abnormal signals that cause common Parkinson’s symptoms. One person with YOPD described his DBS surgery as “a buyback of life” and “daylight savings time on steroids” because he noticed such a difference in his quality of life.
• Watch this panel of DBS experts weigh in on the benefits of DBS, and our four-part series about DBS from 2025.

#10 – Wake up and stretch

• Even if you have never tried yoga, click here for five minutes of beginner yoga with Adriene. Stretching decreases muscle stiffness and can help you feel better.

Where can I find more resources and information about YOPD?

Davis Phinney Foundation YOPD Ambassadors
Young-Onset Parkinson’s: Its Unique Features and Their Impact on Quality of Life
Physical Activity and Cognition in Young Onset Parkinson’s
An Update on the Management of Young Onset Parkinson’s
Investigation of the Treatment and Assistance Needed for People with Young Onset Parkinson’s

*In 2022, the Movement Disorder Society Task Force on Early Onset Parkinson’s Disease established that EOPD is the preferred term (rather than YOPD), but in consultation with people living with YOPD/EOPD, we have decided to continue using the term YOPD.

The same task force also established 50 as the age cutoff for YOPD, clarifying an area of confusion, as some researchers have used 40 or 45 as the age cutoff.