Without a doubt, Michael J. Fox, diagnosed at age 30 with Parkinson’s is the most visible person when the subject of early or young onset Parkinson’s comes up. Although most people with Parkinson’s first develop the disease after age 60, about 5% to 10% experience onset before the age of 50, the age cutoff used to determine whether to classify it as early onset Parkinson’s.
While that seems like a small percentage, the reality of this diagnosis is anything but minimal to those diagnosed and their loved ones. In the 2017 study referenced above, a startling rise in the prevalence of young onset, increasing more than 50% in the span of five years (2012-2017) is also of note.
In this blog, we discuss the characteristics of young onset Parkinson’s that differ from its presence in people over 50 and introduce FAQs that people with young onset PD can relate to.
Young Onset Parkinson’s Disease (YOPD) and Medications
More than half, or 57%, of those 30-44 take medications for the YOPD whereas 81% of 45-54 and 87% of those 55-59 years of age use medication to manage their symptoms. The main reason for this includes being more physically fit and healthier at a younger age. It is also less likely that changes to thinking skills have developed when we are younger and newly diagnosed. It is also expected that the progression will be slower progression and physical symptoms may be more easily managed with lifestyle changes, discussed more below.
Some people choose to start medications later or increase them at a slower rate due to the tendency of people with YOPD to have more sensitivity to dyskenesias over time that dopaminergic medicines, such as carbidopa levodopa can cause.
Young Onset Parkinson’s and Disease Progression
People with young-onset Parkinson’s appear to have a slower progression of the disease over time, says Gregory Pontone, M.D., director of the Johns Hopkins Movement Disorders Psychiatry Clinic. “They tend to have a milder course, staying functional and cognitively intact for much longer.
Young Onset Parkinson’s Disease and Genetics:
By now, you’ve heard the all-encompassing umbrella of genetics, environmental and lifestyle influences as being a cause of this disease. However, in those 50 and under, there is an increase in the number of cases that are familial or genetic, according to Dr. Pontone.
Young Onset Parkinson’s Disease and Other Treatments:
Because people with YOPD live with the disease for a longer period of time and may be subject to taking many pills a day to manage their one and off times, they often can be good candidates for deep brain stimulation or DBS. It is also helpful that they tend to be younger, healthier, and have fewer thinking skill changes helping them prepare for a successful surgery. However, there have not been robust studies of this population. The studies that do exist show similar long-term outcomes, regardless of age.
Exercise is extremely important in the management of Parkinson’s Disease. Multiple studies have shown that people who can engage in 150 min a week of high intensity exercise, meaning you elevate your heart rate to 75% of your heart rate max, are able to slow the progression of their disease and release neuro protective proteins in the brain that keep their dopamine producing cells alive longer. Functional exercise that targets movement patterns we use everyday, such as squats for standing and sitting, help us practice functional skills that we want to prevent from declining. Those who are younger, healthier, and have better thinking skills, have fewer barriers to exercise. Therefore, they are able to take advantage of this powerful tool in managing their disease progression.
Young Onset Parkinson’s Disease and Things to Consider
Many living situations for older adults have 55+ age thresholds without exceptions for a Parkinson’s diagnosis. In addition, being diagnosed earlier may mean you are in the “sandwich generation” taking care of both your children and your parents. Another consideration is your ability to continue working in a physically demanding job as your symptoms progress.
There are many modifications you can make to your home to prepare for when your symptoms progress over time. These include handrails, rearranging furniture and installing benches and bidets in your bathroom. Exploring care options for your children and elderly parents through sites like A Place for Mom and Care.com may also ease some of the responsibility from you and your spouse.
Parkinson’s Pointe board member, Steve Galpern, diagnosed at age 52, was told that he either had Parkinson’s (more likely) or ALS, and relayed that it was an exceptionally scary time.
“I wondered about telling my employer, how soon I would start to decline physically, figuring out what part of my anxiety came from my General Anxiety Disorder and how much from Parkinson’s. I was afraid we would need to move to a one-floor apartment rather soon. A neurologist told me about Pedaling for Parkinson’s but they didn’t push specific types of exercise too hard and I didn’t know the value of meeting other people with Parkinson’s (although I went on an online support group with people who were older and had more severe symptoms and it was kind of scary, feeling as if this was my future, not realizing that everyone progresses differently).”
We’re thankful Steve found Parkinson’s Pointe and that he has taken in a mentorship and leadership role to help others. He now participates in classes and has formed friendships with others in this community. Steve is one of our Pathfinder Advisors so that he can assist others in avoiding some of the challenges he faced at diagnosis.
Online and in-person connection is available for those with Parkinson’s whether you’re in the Denver metro area or in another state, or even country! Find out more about our classes and programs here.