About Parkinson’s Disease
It’s important to take the time to fully understand the diagnosis and symptoms of Parkinson’s in order for individuals, their families and caregivers to adapt to the unique challenges and progressions of the disease.
Young Onset Parkinson’s Disease
Young onset Parkinson’s Disease (YOPD) is Parkinson’s Disease that occurs in people younger than 50 years of age. Most people who develop Parkinson’s Disease will do so and show symptoms at 50 years of age and older. YOPD effects almost 5% of the one million people living with Parkinson’s Disease in the United States.
Symptoms of YOPD are similar to that of late onset Parkinson’s Disease. However, it is important to understand that the challenges YOPD individuals will face at an employment, family and financial level. In extremely rare occurances, Parkinson’s-like symptoms can appear in teenagers and even children. These cases are referred to as Juvenile Parkinsonism and is often associated with specific, high Parkinson’s Disease risk genetic mutations.
Importance of distinguising YOPD
People who are affected by Parkinson’s Disease at a younger age will experience the disease differently. These individuals are at a different life stage that can affect a number of aspects of their lives, often resulting in less time to engage in their own care. They might also have children or are planning to have children and have concerns about passing on Parkinson’s Disease genetically.
From a medical perspective, doctors will tailor treatment when it is a younger person with Parkinson’s Disease. The younger an individual is with Parkinson’s Disease, the more likely the disease is genetic in nature. Your care team might offer genetic testing or even counseling. Younger individuals may also have higher neuroplasticity (the brain’s ability to grow and change in response to therapy) potential which allows the brain to handle and respond to the disease and treatments differently.
How is Young Onset Different
People who are diagnosed with YOPD tend to have a greater family history of Parkinson’s disease and a longer survival time frame. Those living with YOPD may experience:
> Less frequent cognitive problems such as dementia.
> More side effects from dopaminergic medications, such as more frequent dyskinesias (involuntary body movements).
> Slower progression of symptoms over time, staying functional and cognitively intact for longer durations.
> Earlier and more frequent dystonias (cramping and abnormal postures) such as arching of the foot.
How to navigate YOPD
While a YOPD diagnosis can be life-altering, disruptive and unexpected, it doesn’t necessarily have to stop you from reaching your life goals. After the initial diagnosis, spend some time thinking about your current family and career responsibilities and establish a new long-term plan. Take one day at a time, one step at a time as you work toward identifying and achieving your goals and priorities.
Talk to your family
Parkinson’s doesn’t just affect the individual diagnosed, it affects the entire family. You might be concerned about telling your children or other family members on account it might cause undue worry, stress or anxiety. Creating an open, honest and age-appropriate dialogue early on can help all family members (including children) understand Parkinson’s Disease related changes and feel more secure.
Build a care team
In addition to working with your primary care physician, find a movement disorder specialist or a neurologist with specific expertise in the area of movement disorders. This physician will help you find the medication that is right for you and help determine which additional specialists can come along side you and support you in your future health goals.
Build community
Connecting with other people in the greater movement disorder community is important to your overall physical, mental and emotional well-being. The GAPS community is here to be a community that stands together in the fight against this disease, offering support groups, educational programs, and wellness classes to support you along the way. We stand at the ready to support you in any way that we can.
Online YOPD Support Group
2nd and 4th Tuesday of each month
6:00pm Central time
