Young Onset (YOPD)
Thousands of young adults in the United States and around the world are living with Parkinson's disease. They're tackling the challenges of career, parenting, and pursuing goals for the future. Learn more about Young Onset Parkinson's disease and the YOPD Support Group in this area.
Parkinson's disease (PD) most commonly occurs in older individuals, but about 10 percent of new cases involve people younger than 50. Their concerns and needs often differ from those of older patients.
The development of a progressive neurological illness, such as PD, and the related loss of mobility and independence are significant life events. The consequences can be wide-ranging, with impact on the patient’s employment, finances, family obligations, relationships, and perceptions of self-worth, self-esteem, and social stigma.
A recent study examined the impact of PD on patients’ lives and identified differences between those with onset ages above and below 50. Disease severity and resulting physical disability, as perceived by the patients, were identical in the young and older onset cases that were studied.
A major difference was that younger patients reported more depression and scored lower on tests that rate quality of life. This was partially explained by perceptions of stigma associated with the disease, the impact of PD on marital relationships, and the higher rate of unemployment due to disability.
The results of this study indicate that the same level of physical disability may have quite different meanings for younger and older PD patients. This is an important point for physicians and patients to consider; the expectations of young patients regarding treatment results may be radically different from those of older patients.
The symptoms of young-onset patients worsen over time, as do those of older patients, with some notable differences. First, younger patients’ symptoms tend to worsen more slowly. As a result, the disease runs its course over decades rather than years. Also, the time between initial diagnosis and the need for treatment is generally longer.
Another difference is that although young-onset patients are highly responsive to PD medications, they are often very susceptible to side-effects. L-DOPA (one of the components of Sinemet) remains the most potent medication for the treatment of PD symptoms. Some young patients are extremely sensitive to very small doses, and many develop abnormal involuntary movements (dyskinesias) much sooner than older patients. Consequently, use of L-DOPA is generally delayed in young patients until absolutely necessary.
Fortunately, there are alternatives to L-DOPA for milder symptoms that require treatment. Some of these medications – trihexyphenidyl, amantidine, and selegiline – are generally better tolerated by younger patients, and they often produce better symptomatic relief than in older patients.
Once these medications are no longer effective alone, the dopamine agonists pramipexole or ropinirole may be added to further delay the need for L-DOPA. At some point, most patients require L-DOPA treatment. Exact doses are carefully adjusted to allow maximum benefit with minimum side-effects.
Finally, deep brain stimulation (DBS) surgery is generally more effective and better tolerated in younger patients than in older patients. Older patients more commonly suffer from strokes, dementia, or other medical illnesses that disqualify DBS surgery or limit its usefulness. As a result, DBS is used more with younger patients, who often see very significant improvement in their symptoms.
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Support groups share information and offer mutual support. Group members are often the sounding board in talking out fears, concerns, or set backs and celebrating victories along the way.