When Young People Get Parkinson’s Disease
With celebrities like Michael J. Fox putting early-onset Parkinson's disease in the spotlight, more and more information is available to those with the disease. Although Parkinson's is similar in both older and younger patients, treating early-onset Parkinson's disease often includes additional concerns since many of these patients want to remain active, work and prevent the disease from taking over their busy lives.
How can you remain independent when the disease is causing your body to lose control? Dr. Alida Griffith, medical director of the Booth Gardner Parkinson's Care Center, outlines what you need to know about early-stage Parkinson's.
What is Parkinson's disease?
Parkinson's disease is a neurodegenerative disorder, meaning that the neurons in your brain degenerate over time, specifically your dopamine-secreting cells. Consequently, people experience problems with movement, including rigidity, muscle stiffness and muscle slowness. They also develop a tremor that starts asymmetrically, more on one side of the body than the other, usually involving the fingers first. Later symptoms include poor balance.
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At what age does Parkinson's disease normally appear?
The median age of onset is about age 65. Parkinson's disease in someone under the age of 60 is considered to be early-onset Parkinson's disease. But it's much rarer in younger people. In individuals under 50 years, it's about 50 per 100,000, and for people under 40 years, it's fewer than 5 per 100,000.
What causes early-onset Parkinson's disease?
Nobody knows entirely. In Parkinson's disease, in general, there is probably a combination of genetic and environmental factors. In early-onset Parkinson's disease, it's thought that the genetic factors are more common. Often there is a family history of the disease, and about 50 percent of patients have a mutation in the gene called parkin.
What symptoms are typical of early-onset Parkinson's disease?
Typically, the early symptoms are really nonspecific and vague. People complain of fatigue, malaise, muscle pain, weakness and depression. Dystonia, which includes cramping of the toes and a flexed-down position with pain in the soles, is more common in younger people with the disease, but it can come on in older people as well. Unfortunately people can have foot dystonia when they walk and, in early-onset Parkinson's disease, the foot can also turn inward, called foot inversion.
Is there anything that can slow the progression of Parkinson's disease?
There are basically two kinds of treatment- symptomatic and neuroprotective. Neuroprotection is really the Holy Grail in Parkinson's research. Drugs such as selegiline and rasagiline are part of a group called monoamine oxidase inhibitors. They are thought to reduce toxic physical stress to the neurons involved in Parkinson's disease. They probably have a modest neuroprotective effect, meaning that they slow the progression of Parkinson's disease a little. Selegiline, which has been used for years, has been shown to help stop the degradation of dopamine, helping you make the most of what dopamine is available in your brain. It has a very modest neuroprotective effect and a modest symptomatic effect.
Other neuroprotective agents include coenzyme Q10. While there is a small study suggesting some modest benefit from high doses of coenzyme Q10, the effect was seen only at 1,200 milligrams a day.
Finally, exercise is probably the most effective neuroprotective treatment. There was a study showing that exercise in young men was associated with a lower lifetime risk of Parkinson's disease. Experts know that neurons are produced throughout your lifespan and exercise is one of the things that seems to stimulate their growth. "It's also my personal experience, that the patients who exercise regularly and vigorously are better off in terms of their motor and mental symptoms," says Griffith.
What treatments are available to control the symptoms of Parkinson's disease?
All patients with Parkinson's disease will eventually require levodopa for control of their symptoms. It really is the gold standard for treatment of Parkinson's disease.
Older patients are more likely to start with levodopa, and younger patients are more likely to start with the dopamine agonists. The most common dopamine agonists used in this country include Mirapex (pramipexole) and Requip (ropinirole). Starting an early-onset patient on these medications is associated with a lower incidence of motor complications.
Older patients have a difficulty tolerating the side effects associated with a dopamine agonist, which can include nausea and vomiting. Hallucinations and obsessive behavior such as gambling are rare, but may also occur. Dopamine agonists can also cause lightheadedness and hallucinations. Dyskinesias are extra movements that affect the head, neck, trunk and limbs, and are a long-term side effect of levodopa treatment. People who have early-onset Parkinson's disease tend to get earlier and more severe dyskinesias with this drug, so the dopamine agonists are more commonly used.
What other treatments may a patient with early-onset Parkinson's disease receive?
A lot of younger patients will have deep brain stimulation simply because they develop motor complications associated with levodopa earlier. In deep brain stimulation, holes are made in the frontal areas of the skull and an electrode is threaded down into the brain. Younger patients tend to do better with this surgery than older patients.
Both physical and occupational therapy have been demonstrated to be effective in the treatment of Parkinson's disease, no matter what age. Occupational therapy can be helpful for early-onset Parkinson's patients staying on the job longer. Certainly, it can be helpful in terms of organizing your work schedule. Physical therapy is very helpful for flexibility, range of motion, gait and balance.
What is the psychological impact of Parkinson's disease on younger patients?
The incidence of depression is very common in Parkinson's disease. And certainly the way Parkinson's is going to affect the life of a younger person is going to be different than in an older person. The stress on younger patients is much more severe, simply because they're trying to work jobs and take care of children. "I encourage my patients to work as long as they feel they can, but stress can certainly make the symptoms of Parkinson's worse," says Griffith. "Psychological counseling can also be a helpful outlet for them."
The other things involved are cognitive symptoms associated with Parkinson's. People can develop problems with executive function, decision-making and judgment. Multitasking is difficult as well, so a job where you have five things to do at once can become very difficult.
What advice would you give someone who's just been diagnosed with early-onset Parkinson's disease?
Griffith recommends getting as much exercise as possible. "Walking is a good exercise," she says, "but I tell my patients that anything that you enjoy and will do on a regular basis is good exercise." Many of Griffith's patients enjoy yoga, which helps maintain maintains flexibility.
Finally, a lot of people feel that they're better off if they resist taking any kind of medication for as long as possible. "I'll see patients who have been suffering with their Parkinson's symptoms for months, if not years, because they think medication is going to accelerate the progression of the disease", she says. In fact, results of a study presented at the movement disorders meeting suggest that people who were diagnosed early actually do better if they are treated, than if they just suffer through the symptoms. "When people are thinking about whether or not to take treatment, they really need to think about their quality of life," Griffith says. "There is not much benefit to suffering now because you think you might suffer less in the future."