Living Well With Parkinson's Disease

Many people associate Parkinson's with the legendary Muhammad Ali or with Michael J. Fox, but you don't have to be an athlete to get this disease. In fact, it's relatively common: Nearly 50,000 Americans will be diagnosed with Parkinson's disease (PD) this year, according to the National Institutes of Health. But what exactly is PD, and what do you (and your caregivers) need to know about living with this condition? While some aspects are still unknown, there is a fair amount of established research that points to tactics for living well with PD.

We talked to Darolyn O'Donnell, MS, CTRS, the recreation therapy coordinator at the Barrow Neurological Institute's Muhammad Ali Parkinson Center, for further insight.

What Is Parkinson's Disease?

The shaky hands associated with PD were first described by Dr. James Parkinson in 1817. Over the years, research has identified PD as a movement disorder caused by the loss of certain cells in the brain. These brain cells produce dopamine, a chemical -- called a neurotransmitter -- that helps nerve cells tell muscles when to move. Without the dopamine, the classic symptoms of Parkinson's begin to appear, mainly tremor, muscle stiffness, slower movements, and balance problems. There are also non-motor symptoms, such as cognitive changes, anxiety, depression, and problems with sleep that can occur.

PD Causes and Risk Factors

At this time, researchers do not know exactly what causes the disease. According to experts at the Barrow Neurological Institute's Muhammad Ali Parkinson Center, PD may be caused by a combination of genetics and exposure to environmental toxins such as pesticides. Genetics and heredity can play a role in a very small percentage of cases.

When it comes to risk factors, one in particular stands out: "The No. 1 risk factor for PD is aging, so the chances of being diagnosed with it increase as we grow older," O'Donnell said. PD occurs most frequently in people over the age of 60, with men slightly more frequently than women. Approximately 10 to 20 percent of Parkinson's patients are diagnosed under the age of 50.

There appears to be an association between repeated exposure to toxins, such as Agent Orange, and the development of PD. "What makes this so difficult is, if I were to ask you which toxins you've been exposed to in the past year, that would be impossible to answer -- let alone which toxins over the past several decades that you've been exposed to," explains O'Donnell.

At this time, there are no known risk factors for Parkinson's that you can control.

Expectations and Outcomes

PD remains an incurable condition, but it can be treated with medications and advanced medical procedures. Medication therapy targets the specific symptoms giving you trouble. For instance, some medications work to ease muscle stiffness, while others address tremor.

In advanced cases of PD, doctors will consider performing a procedure called deep brain stimulation (DBS). DBS involves implanting a device in your brain that helps regulate movement. This device has been compared to a heart pacemaker, only for the brain. "DBS is a very effective treatment for people who are the right candidates," O'Donnell said.

PD has been called a "designer disease" because it manifests differently in each person. "PD is such a complex disease, and everyone is different in terms of how the disease presents," said O'Donnell, "(whether that's) the motor and nonmotor symptoms, the medication regime, how each individual responds to medication, etc."

Living With PD

Experts at the Muhammad Ali Parkinson Center say you can take several steps to help yourself or a loved one experience the best possible quality of life while living with the disease. These steps include:

• Exercise. Planned physical activities can have a very positive effect on your PD symptoms and your mood. "You should be getting your daily dose of exercise, just as you do your medication," explains O'Donnell. It is also important to seek out the expertise of physical, occupational, and speech therapists.
• Join a support group. There are many specialized PD support groups available. Groups for patients, families, and caregivers can offer a sense of inspiration and hope as you cope with this progressive disease. "It can be very easy for someone diagnosed to isolate and withdraw," said O'Donnell. "People who participate in support groups are able to learn and share with one another in a safe and comforting environment, surrounded by others who truly know what they are facing, experiencing, and living with on a day-to-day basis."
• Maintain your social life. When you are first diagnosed with Parkinson's, you may feel a desire to withdraw from life. Don't do it. Instead, make it a point to continue socializing with family and friends, and within the Parkinson's community, as this can be crucial to your overall sense of well being, better brain health, and keeping your spirits up.
• Consider participating in research. Talk with your doctor about clinical trials of medications, procedures, and other research to advance scientific understanding of what causes PD and how to cure it.

Many people live long, active lives with PD. In fact, "active" is the key word in this case: "Probably the biggest thing someone with PD should avoid is inactivity," O'Donnell says. So while Parkinson's disease is a progressive, incurable condition, that doesn't mean you shouldn't stay hopeful in the face of diagnosis.