Young Onset Parkinson's

A common misconception is that Parkinson’s is an old person’s disease. Young Onset Parkinson’s (YOPD) generally refers to a person who is diagnosed under the age of 50. As is the case with all Parkinson’s, the symptoms and rate of progression varies greatly from person to person. They also may have different approaches to treating symptoms and may encounter unique situations surrounding work and family. It is also not uncommon for people with YOPD to have a longer journey in their diagnosis as they may present with shoulder or arm stiffness which may initially be attributed to a sports injury.

YOPD is diagnosed the same as typical Parkinson’s but evidence suggests that there are some symptoms that are more common in people living with Young Onset Parkinson’s, such as:

A slower disease progression
An increased rate of dyskinesia
An increased rate of dystonia

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 Parkinson’s. Concerns often relate to the potential implications of the disease on personal, family and work commitments and responsibilities.

Nikki was diagnosed with Parkinson’s at the age of 32

YOPD APP

In a world first, the Young Onset Parkinson’s Exchange (YOP-X) App and website is an information portal and resource hub supporting people with young onset Parkinson’s, and provides a valuable workforce tool for health professionals. Developed as a living lab model, the experiences, ideas, knowledge and daily needs of people with young onset Parkinson’s have underpinned all App and website content, with more than one hundred individual stories and experiences shaping tools and resources.

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Causes & Symptoms

In everyone with Parkinson’s, both genetic changes and environmental factors likely contribute, to different degrees, to cause the disease. In younger people, especially those who have multiple family members with Parkinson’s, genetics may play a larger role.

People with YOPD are more likely to experience dystonia — prolonged muscle contractions that lead to abnormal postures, such as twisting of the foot. Also, younger people are more likely to develop dyskinesia — involuntary, uncontrolled movements, often writhing or wriggling — as a complication of long-term levodopa use combined with a long course of Parkinson’s disease.

On the other hand, people with YOPD are less likely to have significant problems with balance, or considerable memory or thinking problems (dementia). Progression of disease over time is, in general, slower.

Treatment Options

Options for managing Parkinson’s symptoms are essentially the same no matter when Parkinson’s is diagnosed. To delay dyskinesia, younger people may choose to postpone starting medication or begin with Parkinson’s drugs other than levodopa, especially if symptoms are mild and don’t interfere with work, physical or social activities. Options may be to start with an MAO-B inhibitor, a dopamine agonist; or, when tremor is particularly prominent, an anticholinergic drug.

Physicians and researchers have long engaged in a healthy discussion over the best time to start levodopa. Some believe it’s better to start sooner to control symptoms, maximise the quality of life and allow a person to remain active as long as possible. Others hold off to potentially delay motor complications, such as dyskinesia. Ask your physician for his or her take on this issue and consider the pros and cons of both approaches. Work closely with your movement disorder specialist to determine which medication is right for you and when.

Considerations

Employment

Depending on what symptoms you have, how significant they are and what you do for a living, you may be able to continue working for a significant period of time beyond diagnosis. (Many people do.) Still, having a backup plan, including schedule changes, early retirement or even a different career, may be worthwhile. Whether and when to disclose your diagnosis to coworkers and employers are personal decisions. Having a strategy that outlines who you’ll tell, how you’ll guide the conversation and how you’ll handle potential reactions can be helpful.

Finances

Financial planning may take on a new light with your diagnosis. You may want to take a fresh look at your current financial status, factoring in debt and savings and thinking about the need for regular doctors’ visits and medications. It’s a good idea to map out future financial goals and reevaluate life insurance coverage.

Parenting

Parents may worry about caring — physically and financially — for young children, whether their children are at increased risk of developing the disease, and how to tell them about the diagnosis. Sometimes engaging in family activities around Parkinson’s is comforting — for example, looking up answers to a child’s questions together, brainstorming a school project around the topic of PD or fundraising to support research.

Relationships and Marriage

Parkinson’s can impact relationships with significant others and spouses. Talking openly and honestly about present and future concerns, as well as addressing symptoms and issues as they arise, can be helpful. Communication and flexibility — important in any partnership — become even more critical when managing life with Parkinson’s together.