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 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.
Disease Progression and Treatment
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.
Impact on life
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 cause of PD remains elusive, but recent advances have opened many avenues for investigation and raised many possibilities concerning the mechanisms that make brain cells die and how this might be prevented. The majority of PD cases are not caused directly by the genes that patients inherit from their parents, but rather are probably the result of a complex interaction between an individual’s susceptibility to toxins and lifelong exposure to those agents.
A small number of PD cases have an exclusively genetic basis. These cases are caused by problems that prevent single genes from functioning correctly. Such rare, purely genetic, forms of PD are more common among young-onset patients. The importance of these cases is that, in instances where the responsible genes have been identified, we now know exactly what triggers the disease.
It is possible, therefore, that the first treatments that effectively slow or halt the progression of PD may specifically target these rare genetic forms of PD that account for some young-onset cases. For example, introducing an intact copy of a damaged gene into patients’ brains by gene therapy might specifically treat some types of purely genetic PD.
Research into such approaches is being pursued by many laboratories across the world, including our laboratories in Pittsburgh.
Dr. Ed Burton, Dr. Sarah Berman, and Dr. David Hinkle are movement disorder specialists at the UPMC Comprehensive Movement Disorders Clinic. They treat patients and engage in research into the cause and cure for Parkinson's disease.