Young-onset Parkinson’s disease (YOPD) is a growing subset of people who develop the disease at a younger age, typically between the ages of 21 and 50. 

Incidences of YOPD (sometimes referred to as early-onset Parkinson’s disease) are relatively rare, making it difficult to estimate exactly how many people are diagnosed annually. Recent data suggests that between 5-7% of people living with Parkinson’s have YOPD in the western hemisphere.

Because YOPD is relatively uncommon, it can be a lonely journey for those with a diagnosis. PCLA is dedicated to spreading awareness of YOPD so those living with it may receive the appropriate support and resources unique to early-onset PD.

Here are the signs & symptoms of YOPD and the next steps for treatment and resources.

Journey to Diagnosis

While the symptoms of YOPD are similar to those later in life, the journey to diagnosis can be significantly different.

Younger people may need to see multiple doctors before finally receiving a correct diagnosis. Doctors aren’t necessarily looking for YOPD or have the experience to address it. 

As a result, physical symptoms can be incorrectly attributed to sports injuries or even stress and anxiety. In such cases, prescribed medications seldom address the underlying condition.

Young-onset Parkinson’s can have a greater impact on a person’s life, as it can alter your relationship with work, family, money, school, and social activities. Check out these helpful tips on next steps after receiving a new diagnosis.

Potential Causes

The cause of YOPD is largely unknown. However, it’s commonly linked to a combination of genetic and environmental factors, with genetics playing a larger role.

Researchers point to mutations in genes like SNCA, PARK2, PINK1, and LRRK2 as a potential cause or increased risk. So if you have Parkinson’s disease and an extensive family history of PD, getting tested for these genes is worthwhile to see if it’s likely to be passed on.

On the other hand, environmental factors have not been proven to increase a person’s risk of developing YOPD. It’s best to limit exposure to known toxins, like pesticides and mercury.

Symptoms of YOPD

Recognizing the signs and symptoms of YOPD is crucial for early intervention, which can significantly improve the quality of life for those affected.

The symptoms of YOPD can vary widely among individuals, but there are common signs that indicate its presence. It’s important to note that these symptoms are sometimes subtle in the early stages and may be overlooked or attributed to other causes.

1. Tremor

A slight tremor in one hand is often one of the first signs of YOPD. This tremor usually occurs at rest and may improve with movement. It can also affect the chin, lips, or legs.

2. Slowness of Movement (Bradykinesia)

Individuals with YOPD may experience a gradual slowing down of movements. This can make everyday tasks challenging and time-consuming. Bradykinesia is a hallmark symptom of Parkinson’s disease and significantly affects quality of life.

3. Rigidity

Muscle stiffness or rigidity is common in YOPD. This stiffness can occur in any part of the body and often contributes to a decreased range of motion and pain.

4. Postural Instability

Problems with balance and coordination are common as YOPD progresses. This can lead to difficulties in walking and an increased risk of falls.

5. Non-Motor Symptoms

YOPD also includes a range of non-motor symptoms that can significantly affect an individual’s daily life. These may include:

• Sleep disturbances
• Constipation
• Mood disorders, such as depression and anxiety
• Cognitive changes, including difficulties with memory and planning
• Autonomic dysfunction, which can affect blood pressure, digestion, and bladder control
• Loss of sense of smell

Distinguishing Traits of YOPD

YOPD and Parkinson’s in older adults (referred to as late-onset Parkinson’s disease, or LOPD) share many similarities in terms of their symptoms and the underlying loss of dopamine-producing neurons in the brain. 

However, there are several key differences between early-onset and late-onset Parkinson’s disease. Understanding these differences is crucial for the effective management and treatment of individuals with YOPD. 

In general, YOPD has the following distinguishing characteristics:

• Diagnosed between the ages of 21 and 50, compared to LOPD, which is diagnosed in people over 60 years old
• Slower disease progression over time, with less rapid cognitive decline
• Dystonia and dyskinesias as early symptoms or as side effects of medication
• On average, more likely to be tied to genetics
• Less frequent occurrence of dementia and memory issues

Additionally, people with YOPD may experience more severe impacts on their mental health, such as anxiety and depression.

Navigating a life-altering diagnosis at a young age may present significant mental health challenges, especially given the lack of resources for people living with YOPD.

These distinctions highlight the need for a tailored approach to managing YOPD, focusing on the unique challenges and needs of younger patients.

Navigating a YOPD Diagnosis

Navigating a YOPD diagnosis can be challenging, but taking proactive steps helps to better manage the condition and maintain quality of life. 

Here are steps and suggestions for those newly diagnosed with YOPD.

1. Seek a Specialist

Find a Movement Disorder Specialist. These neurologists specialize in movement disorders, including Parkinson’s, and they work with you to provide a more accurate diagnosis and tailored treatment plans.

2. Educate Yourself

Understanding the disease, its symptoms, progression, and treatment options can empower you to make informed decisions about your care.

3. Establish a Care Team

Build a multidisciplinary team, including a movement disorder specialist, physical therapists, occupational therapists, and mental health professionals.

4. Consider Medication Options

Medications can help to relieve symptoms such as tremors, rigidity, and slowness of movement. The most common are levodopa and dopamine agonists.

Work closely with your doctor to find the most effective medication regimen with the fewest side effects, understanding that this may evolve over time.

5. Lifestyle Modifications

Stay active with regular exercise, which can improve mobility, flexibility, and overall well-being. Incorporate a balanced diet to support general health and alleviate certain symptoms. Prioritize good sleep hygiene to combat fatigue and sleep disturbances.

6. Plan for the Future

Consider financial planning and explore disability benefits if applicable. Communicate with your employer about your diagnosis and discuss potential accommodations that can help you continue working effectively.

7. Seek Support

Joining a YOPD support group can provide emotional support and practical advice from others who understand your experience.

Additionally, talk to your family to plan for your care and long-term goals. It’s important to help them learn how to be an effective care partner through healthy communication and mutual understanding. 

8. Address Mental Health

Be proactive in addressing depression, anxiety, and other mental health issues with the help of healthcare professionals.

9. Stay Informed

Stay up-to-date with the latest research and treatments for YOPD to be aware of new opportunities for care.

10. Advocate for Yourself

It’s crucial to advocate for your needs, especially early in a diagnosis. Actively participate in your healthcare decisions, ask questions, and seek second opinions if necessary.

Navigating a YOPD diagnosis requires a comprehensive approach that includes medical care, lifestyle adjustments, and strong support networks. By taking proactive steps, individuals with YOPD can manage their symptoms effectively and continue to lead fulfilling lives.

Next Steps for People Living with YOPD

Having a community network is critical for people living with YOPD. PCLA is proud to host a free, monthly virtual support group for individuals with YOPD to connect and discuss their shared experiences.

In honor of Parkinson’s Awareness Month and the members of our YOPD community, PCLA is hosting a YOPD Panel on April 11, 2024, from 7 to 8 pm. Find event and registration details here!

Additionally, check out our resources page for a full list of recommendations for support, education, exercise classes, and programs designed for people living with Parkinson’s.

As with most aspects of PD, research on YOPD is severely lacking. PCLA is committed to engaging with professionals in the field and bringing cutting-edge research straight to our community so together we can better understand the causes of YOPD and treatments to enhance quality of life.

Stay tuned for exciting updates on PCLA’s commitment to YOPD in 2024!