“There’s life after Parkinson’s.”
—CALE Y., PWP
Parkinson’s disease is traditionally thought of as a disease that only older people get, and for good reason—early 60s is the average age of diagnosis. However, this is not always the case. About 10 to 20 percent of the total population of people with Parkinson’s suffer from young-onset Parkinson’s.24 Young-onset Parkinson’s disease affects individuals under the age of 50. Because of their younger age, people with YOPD may not be expecting to see PD, so they may take longer to get to a diagnosis. For example, people with YOPD often blame shoulder or arm stiffness on sports injuries instead of Parkinson’s.
As mentioned in chapter 4, it is generally thought that PD has a combination of genetic and environmental triggers. In YOPD, though, researchers believe that the genetic trigger is more common. Many people with YOPD have a family history of Parkinson’s, and about half show the same genetic mutation.
The symptoms of YOPD are similar to those of older-onset PD, with a few differences. For example, people with YOPD are more likely to experience dystonia, those annoying and often painful sustained muscle contractions that can twist the body into places it doesn’t want to go. Mom experienced this fun PD symptom when her left foot began twisting inward so much that she had to wear a foot brace to keep it straight. People with YOPD are also more likely to develop dyskinesia due to the long-term use of levodopa and longer course of the disease. In addition, depression is very common in people with YOPD. This could be because of the potential greater stress related to work and family demands.
There are what could be considered benefits for those diagnosed before 50: they are less likely to have significant balance or thinking problems and rarely develop dementia, even if they’ve had the disease for many years. Also, people with YOPD generally experience a slower disease progression.
Women with YOPD often express concerns over becoming pregnant. Though there is limited data on pregnancy and PD, many women with PD have successfully carried healthy babies to term. If you are taking birth control, your doctor may need to adjust the dose of your PD meds or suggest other forms of contraception.