Parkinson’s disease that develops in a person before the age of 40 (or 50 in some studies and references). About 5 to 10 percent of people with Parkinson’s have early-onset disease. A person’s age at diagnosis significantly affects a number of aspects of the disease, including severity of symptoms, rate of progression of symptoms, and treatment decisions. Early-onset Parkinson’s is sometimes called young-onset Parkinson’s or less commonly juvenile Parkinson’s. Although Parkinson’s disease in people younger than age 20 is rare, people in their early teens have been diagnosed with the disease. in young people, a diagnosis of Parkinson’s is a result of ruling out all other possible diagnoses and monitoring the progression of symptoms over time. As with classic idiopathic Parkinson’s, Levodopa response (use of levodopa relieves symptoms) provides the strongest evidence that the diagnosis is indeed early-onset Parkinson’s.
Genetic Factors
Some scientists believe that most early-onset Parkinson’s has a significant genetic component and have identified connections to a number of gene mutations, particularly to a group of genes called parkin genes. Currently identified parkin gene mutations are very rare except in very early (before age 30) onset. A number of genes appear implicated at present, and research is exploring links to others. Studies vary widely as to the percent of people who have early-onset Parkinson’s and have other family members who have Parkinson’s disease, but around 25 percent is commonly quoted. However, people with idiopathic Parkinson’s disease sometimes also have gene mutations, so evidence of the genetic connection is far from conclusive. As with other types of Parkinson’s, a combination of genetic and environmental factors is the probable cause of early-onset Parkinson’s. Much research remains necessary to decipher the Parkinson’s puzzle.
Symptoms
Symptoms in early-onset Parkinson’s tend to be less severe and less conclusive than in idiopathic Parkinson’s. in about half of those ultimately diagnosed with early-onset Parkinson’s, a seemingly isolated symptom such as painful muscle spasms in one muscle group, most commonly a foot or finger, causes the person to seek medical attention. People with early-onset Parkinson’s are also far more likely to have depression than are people with classic Parkinson’s, as well as to seek treatment for it. Further examination reveals subtle symptoms that are also characteristic of Parkinson’s such as slight problems with balance and foot drag. Although tremors are the most characteristic symptom in classic Parkinson’s, only about 40 percent of people with early-onset Parkinson’s have tremors. bradykinesia, another of the cardinal symptoms in classic Parkinson’s, is even less common in early-onset Parkinson’s.
With the caveat that the course of Parkinson’s is inconsistent and impossible to predict, generally early-onset Parkinson’s tends to progress more slowly than classic Parkinson’s. A person with early-onset Parkinson’s often can enjoy decades in which anti-parkinson’s medications keep symptoms in check. However, the undesired dyskinesias that occur as side effects of anti-Parkinson’s medications tend to manifest themselves earlier in the medication regimen, making it necessary to try different medication combinations to keep both symptoms and side effects under control. So although people with early-onset Parkinson’s can experience long periods without noticeable symptoms, it also requires more medical diligence to manage the medication regimen that makes this possible.
The progression of Parkinson’s is sometimes rapid and aggressive in younger people with the disease. As best scientists understand at present, this characteristic is attributable to the unpredictability of Parkinson’s, rather than a response related to age. Classic Parkinson’s can as well progress on a sharp curve, as symptoms become severe enough to cause significant impairment quite early in the disease. This remains yet another of the unknowns about Parkinson’s that researchers hope to unravel as they learn more about the disease as well as the neurochemical functions of the brain.
The Levodopa Debate
Levodopa, the medication most potent in treating Parkinson’s disease at present, commonly induces the onset of motor complications after a few years. With adjunct therapies that incorporate additional medications, treatment can generally keep symptoms in reasonable control for a few decades. in people who are in their 70s or 80s when Parkinson’s is diagnosed, this is less of a concern because levodopa in combination with adjunct therapies using other anti-parkinson’s medications can adequately control the symptoms of Parkinson’s for the remainder of their lives.
When Parkinson’s disease is diagnosed in people who are in their 30s, 40s, 50s, and most people in their 60s, this is not as likely to be the case; their life expectancy exceeds the expected timeframe for the development of significant motor complications from levodopa. As Parkinson’s progresses, it takes increasingly higher doses of levodopa to produce the same level of symptom relief. Eventually these higher dosages of levodopa produce undesired side effects such as dyskinesias and fluctuating response and, because of the continuing depletion of dopaminergic neurons in the brain, can no longer accommodate the brain’s need for dopamine. As well, these side effects tend to occur earlier in the course of levodopa treatment than for people with classic Parkinson’s, creating the need for innovative medication management earlier in the course of treatment.
Innovative Treatment Approaches
People with early-onset Parkinson’s challenge doctors to attempt innovative treatment approaches that traditionally have not been necessary in older people who have classic Parkinson’s. The overall increasing vigor and life expectancy of the average person in their 50s, 60s, and even 70s, as well as young onset patients, has led most movement disorders experts to argue for treatment algorithms using other agents prior to using levodopa as a means of delaying levodopa associated motor complications. Most knowledgeable physicians would strongly consider using dopamine agonists as the initial treatment, deferring to levodopa when the person with Parkinson’s has some decrease in cognition or other factors that would make dopamine agonists too risky.
Younger people sometimes respond differently to conventional treatment regimens than older people with classic Parkinson’s and often feel they have little to lose by trying new approaches or treatments. People with early-onset Parkinson’s often benefit from seeking treatment through health care facilities and providers linked with research programs. it is critical for every person who considers any investigational treatment, particularly one that is invasive such as surgery, to understand fully the potential risks as well as the possible benefits.
Career and Work Decisions
Many people in their 40s and 50s not only are still working, but also are enjoying the most productive years of their careers. The variable nature of Parkinson’s disease makes prediction of how and when symptoms will affect work difficult. it is important to evaluate symptoms and work responsibilities at the time of diagnosis and continually as symptoms change. For some people, the changes will be slow and have little effect on job tasks. For other people, the changes whether slow or quick will have significant impact on work responsibilities. As well, medications taken to treat Parkinson’s disease can affect various aspects of functionability, such as mental alertness and fine motor control. Most of the changes due to medication are positive as these drugs hold symptoms in check.
The decision whether to continue working is individual and personal and takes into consideration many factors beyond the ability to continue doing the work. When the person with Parkinson’s is the primary income source for the family, he or she likely also provides for the family’s health insurance and related needs as employment benefits. Leaving work, in most cases, means giving up these benefits. it is important to make work and career decisions carefully. Most people find that their colleagues are supportive and concerned and want to do as much as possible to allow the person with Parkinson’s to continue working.
Many people who are still working when they learn they have Parkinson’s disease find that the americans with disabilities act (ADA) protects their employment rights. The ADA requires qualifying employers to make reasonable workplace accommodations to allow employees to fulfill the essential requirements of the job. The interpretation and implementation of the ADA vary widely and often are the subject of lawsuits. As well, some classifications of employers are exempt. Some people choose not to notify their employer of their diagnosis, reserving that option until symptoms become apparent. it is important for the person with Parkinson’s disease to fully understand the employment requirements of his or her job and organization and to comply with any obligations to notify the employer of health conditions.
Effects on Families
Parkinson’s disease at any age has a significant effect on loved ones, particularly immediate family members who might find themselves taking on the role of caregiver. When the person is young, family responsibilities may be more significant. There may be young children still at home, as well as responsibility for aging parents. Younger people with
Parkinson’s often struggle with decisions about how much and when to tell children, parents, friends, and coworkers. When treatment succeeds in suppressing symptoms, younger people tend to be reluctant to let others know that they have Parkinson’s. Just as having Parkinson’s changes life for the person who has it, it changes the perceptions of others. As well, the element of uncertainty in the initial diagnosis is somewhat higher with early-onset Parkinson’s that manifests just one or two of the classic symptoms even with positive response to levodopa treatment, often causing the person to feel reluctant to share information with others that could prove false.
It is difficult for family members to confront and accept an illness that typically affects older people. Children, especially teenagers, may not understand the involuntary nature of symptoms and find them embarrassing, particularly in public settings or around their friends. Even though this response is normal, it creates difficulties for the person with Parkinson’s, who also may feel embarrassed by his or her lack of control over symptoms. Medical experts encourage families to be open and honest, as is age-appropriate, in discussing Parkinson’s disease with children, so children understand that Parkinson’s is a disease for which the parent takes medicine but that the parent will still (and often unpredictably) sometimes have problems.
Children often want to know whether the affected parent is going to die of Parkinson’s; parents can honestly answer this question with “no” as Parkinson’s itself seldom causes death. The child’s age and maturity, in combination with the degree to which symptoms affect the parent’s abilities, determine what other details are necessary. This is generally an evolving situation, as children are growing up and maturing as the Parkinson’s progresses and acquire capacity for deeper understanding as the parent’s symptoms become less controllable. support groups can be helpful resources for parents who are not sure how to discuss the subject with their children.
Health Care Implications
People with early-onset Parkinson’s are decades from qualifying for medicare, the government-funded health care program for seniors, unlike those with classic Parkinson’s who are in their 60s, 70s, or 80s at the time of diagnosis. This difference has significant ramifications in terms of health care and medical insurance. For those who receive health insurance through their job this often becomes a key factor in decisions about whether to remain employed, particularly when the person’s employment also provides medical insurance for other family members. anti-parkinson’s medications and other treatments are expensive. The typical person with Parkinson’s disease may need $2,000 to $6,000 of medications a year just to treat the Parkinson’s. Costs for doctors’ visits and related care can add substantially to this expense.
Most medical insurance covers most of the care-related costs and at least some of the cost of drugs; some plans do not cover drugs. it is crucial to fully understand medical insurance coverage limitations and restrictions when considering any changes that affect insurance status, such as retirement or change of jobs. The best source for information is the insurance company that issues the medical plan. All states have some form of medical assistance programs, known generally as medicaid, for people who have no other medical insurance options and meet the program’s qualifications. Every state also has an insurance commissioner’s office that can provide information and assistance about an insurer’s legal obligations related to coverage of health care expenses.
Typically, the person with early-onset Parkinson’s has no greater risk for other health problems in the early and mid stages of the disease than does a person of similar age who does not have Parkinson’s and so is no more likely to need health care services. The exception is the risk of injuries caused by falls, which increases when balance problems and gait disturbances are among the prominent symptoms. In the later stages of Parkinson’s, extensive limitations on movement create increased risk for health problems such as pneumonia and other infections that increase the need for health care services. .
