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Neurological Disorders

The Truth About Early Onset Parkinson’s Disease

Allison Toepperwein (right) and Christian Banda (left), Photos: Courtesy of Abdulai Sesay

When many people think about Parkinson’s disease (PD), they picture an older person, perhaps their grandparent or an elderly neighbor. They don’t usually think about a 34-year-old young man who is about to become a dad. They don’t think about an active 37-year-old single mom.

Christian Banda and Allison Toepperwein are just two of many younger adults who have been diagnosed with PD at a young age. When an adult between ages 21 and 50 receives a diagnosis of PD, it is referred to as early onset Parkinson’s disease, or young onset Parkinson’s disease. While the symptoms of the disease are mostly the same at whatever age it develops, younger people will experience the disease differently due to their unique life circumstances. Managing the disease can be particularly challenging for a younger person and their family from a medical, psychological, and social standpoint.

A life changing diagnosis

About 10 to 20 percent of those diagnosed with PD are under age 50, and about half of those are diagnosed before age 40. Approximately 60,000 new cases of Parkinson’s are diagnosed each year in the United States, meaning somewhere around 6,000 to 12,000 of those diagnosed are young onset patients.

What sets young onset Parkinson’s apart from a diagnosis at an older age? Because the majority of people who get PD are over the age of 60, the disease is often overlooked in younger people, causing many to go undiagnosed or misdiagnosed for extended periods of time. However, once it has been diagnosed, the rate of the disease’s progression is usually much slower in younger than older people, due in part to the fact that younger people have fewer general health problems and are more capable during physical therapy treatment.

Another difference is that people in this younger age bracket are often parenting younger children, in the midst of their careers, perhaps single and dating. Aside from their physical symptoms, their lifestyle priorities and demands are typically different from someone who is diagnosed in their 60s or 70s. For this reason, there are support groups geared towards people with young onset PD so they can focus on the concerns that are particular to their age group.

Finding treatment

To date, there is no known cure or way to prevent PD. However, research is ongoing and remarkable progress is being made. There is very real hope that the causes, whether genetic, environmental, or some combination of the two, will soon be identified and the precise effects of these causes on brain function will be understood. Although there currently is no cure for the disease, by identifying symptoms and determining a proper course of treatment, most people with the disease are able to remain active and lead fulfilling lives.

Research shows that exercise can be very beneficial for people with PD. Both Christian and Allison turned to exercise as a way to take some control and help keep PD symptoms in check – and did so in a big way.

Christian became an endurance athlete. He competed in long-distance races, obstacle course runs, and more. Allison took it to another level by training for and competing in the television show American Ninja Warrior. Their commitment to exercise helps them feel strong and healthy, and their motivation and determination is inspiring to others, showing the world that people with PD are so much more than just their disease.

Symptoms of early onset Parkinson’s disease

While common symptoms of PD may be similar no matter what age you are, the progression is often different. There are four primary motor symptoms of PD, including: tremor, rigidity, bradykinesia (slow movement), and postural instability (balance problems). 

Young people often have more involuntary movement problems due to side effects from the most commonly prescribed PD medication, levodopa. Other problems associated with PD such as memory loss, confusion, and balance difficulties tend to be less frequent in young people with the disease.

Raising awareness

Both Allison and Christian use their personal PD stories to spread awareness about PD, particularly young onset PD, to others. They were both were featured cast members in a public service announcement for the American Parkinson Disease Association that airs on television across the country, and they each have told their story publicly to help others who are facing their own PD journey. They encourage people to seek out the information and help they need to live their best life with PD.

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