Young-Onset Parkinson's Disease
Parkinson's in Younger People
Parkinson's isn't just an "older person's disease." It's typically diagnosed around age 60 or later, but symptoms can start at 50 years old or earlier. If that occurs, it's referred to as young-onset Parkinson's disease (YOPD). Estimates vary, but about 10 percent of people with Parkinson's may fall into this category. While the range of potential symptoms and treatment options are the same no matter when Parkinson's is diagnosed, younger people may experience symptoms and overall course of disease somewhat differently. They also may have different approaches to treating symptoms and may encounter unique situations surrounding work and family. People diagnosed at a younger age might hide their symptoms more often or face stigma when their symptoms are misinterpreted.
People with young-onset Parkinson's may have a longer journey to diagnosis, sometimes seeing multiple providers and undergoing several tests before reaching a correct conclusion. As with Parkinson's diagnosed later in life, YOPD is diagnosed based on a person's medical history and physical examination. No biomarker -- objective measurement (protein levels seen in a lab test or imaging scan, for example) that can diagnose Parkinson's -- has been validated. When younger people and their clinicians are not expecting Parkinson's disease (PD), the diagnosis may be missed or delayed as symptoms are attributed to other conditions. It's not uncommon for arm or shoulder stiffness to be attributed to arthritis, sports injuries or other medical conditions before Parkinson's is eventually diagnosed.
Genetic and Environmental Causal Factors
In everyone with Parkinson's, both genetic changes and environmental factors likely contribute to different degrees to cause disease. In younger people, especially those who have multiple family members with Parkinson's, genetics may play a larger role. Certain genetic mutations are associated with an increased risk of young-onset PD. If you have YOPD (and particularly if you have a family history of Parkinson's), you might consider genetic testing to see if you carry one of these mutations. Testing can be done through your doctor's office but is mainly done in the context of clinical studies since results currently don't change clinical management. (In other words, knowing you have a genetic mutation wouldn't necessarily alter your treatment.) As part of research and a larger collective, genetic information offers valuable insights toward better understanding of disease and potential therapies. Discuss the pros and cons with your doctor, genetic counselor and family.
Symptoms and Progression
Those with YOPD may have different symptoms. They are more likely to experience dystonia -- an involuntary muscle contraction that leads to an often painful abnormal posture, such as an inward turning of the foot. In some people, dystonia is the first symptom of Parkinson's and comes on after exercise. (It also can occur later in the course of disease.) On the other hand, people with YOPD are less likely to have significant problems with balance, or considerable impairment of memory or thinking (dementia). Gradual progression of disease over time is, in general, slower.
Options for managing Parkinson's symptoms are essentially the same no matter when Parkinson's is diagnosed. Younger people might choose to postpone starting medication or begin with drugs other than levodopa, especially if symptoms are mild and don't interfere with work, physical activities or social interactions. Younger individuals are more likely to develop dyskinesia -- involuntary, uncontrolled movements, often writhing or wriggling -- as a complication of long-term levodopa use combined with a prolonged course of Parkinson's disease. So, they might instead opt to start with an MAO-B inhibitor, amantadine, a dopamine agonist or, when tremor is particularly prominent, an anticholinergic drug. (Read more about the medications used to treat Parkinson's.) Physicians and researchers have long engaged in a healthy discussion over whether it's better to start levodopa sooner to control symptoms, maximize quality of life and allow a person to remain active as long as possible, or to avoid levodopa in order to potentially delay motor complications. Ask your physician for his or her take on this issue and consider the positives and negatives of both approaches for yourself. Work closely with your movement disorder specialist to determine which medication is right for you and when.
Unique Considerations and Situations
Although everyone with Parkinson's probably wonders what the years ahead hold, this may be top of mind in those who have a longer future with PD. Concerns often center on the potential implications of disease on personal, family and professional desires and responsibilities.
Relationships and Marriage
Sharing your Parkinson's diagnosis at work
Find practical advice in our two-part guide to help decide when to share your Parkinson's diagnosis at work, how to continue the conversation and manage professional relationships over time.