After the diagnosis: living with Parkinson's

There’s no cure for Parkinson’s disease, but new treatments can ease the symptoms and prolong independence.

“You’ll be fine for years. Go out and do your job.”

That’s how Janet Reno, diagnosed with Parkinson’s disease (PD) at age 57, recalls her neurologist’s advice. She took it to heart, not only returning to her demanding job as U.S. attorney general but also taking up kayaking.

Reno and about a million others in the United States and Canada are living with PD, a progressive disorder caused by a loss of brain cells that produce the chemical messenger dopamine, most noticeably in an area of the brain that controls movement. For now, there’s no cure, but advances in treatment have made it easier for Reno and others to remain active for many years.

What goes wrong

Normally, smooth and controlled movements are regulated in a mid-brain area called the substantia nigra. Classic PD symptoms — tremor, slow movement, rigidity or stiffness, and poor balance and posture — occur when 80% of the dopamine-producing cells in this area are lost. What causes the loss of cells isn’t clear.

Some theories link PD to chronic inflammation, premature aging, or an overabundance of free radicals — molecules that are produced during normal metabolism but may damage cells if not disarmed by protective antioxidants. Discovering the combination of factors that causes PD will point the way to better strategies for preventing and treating it.

Starting treatment

If your symptoms improve when you take a single dose of a PD medication, it’s likely that you have the disorder. But all PD medications have side effects, so your clinician may wait a while before starting drug treatment.

“It’s okay to have some of the symptoms as long as they’re not interfering with your professional or other important activities,” says Dr. Anne B. Young, head of the neurology department at Boston’s Massachusetts General Hospital. “When you’re not able to work, be active socially, or travel, it’s time for treatment.”

Several nondrug approaches — including exercise and physical therapy to improve strength, balance, stamina, and flexibility — can help maximize your ability to function. Other types of therapy can help ease swallowing and speech difficulties and teach you new ways to carry out movements and tasks made difficult by PD.

Once symptoms warrant treatment, patients may receive a dopamine-boosting agent or other drugs such as selegiline and amantadine. Sinemet, an older but effective medication, is also commonly used. More than 90% of patients respond to Sinemet, with motor symptoms and the ability to carry out normal activities improving by about 50%. Possible side effects include nausea and abnormal involuntary muscle movements called dyskinesias.

After the honeymoon

Unfortunately, levodopa and other medications often provide reliable relief only for a brief “honeymoon” period. After that, medications may become less effective or totally ineffective — or effective only on and off (called the on-off phenomenon). You may need higher doses that can cause troubling side effects, including dyskinesias.

Medications and surgery may ease symptoms, but they don’t stop or reverse the underlying disease process. Odds are that if you have Parkinson’s disease, your symptoms will eventually become worse, you will require more medications, and you will need to adapt in new ways.

Whatever your condition, take advantage of the excellent practical materials and support offered to people with PD and their caregivers by organizations like the National Parkinson Foundation, Inc.

On the horizon

The search continues for ways to slow or halt the progression of PD and make the disease more manageable.

At the first World Parkinson Congress in Washington, D.C., NINDS announced that two compounds — the antibiotic minocycline and the amino acid creatine — showed enough promise to warrant large clinical trials of their ability to protect healthy nerve cells and delay the need for drug treatment in early PD. Investigators are also considering new ways to deliver standard dopamine-influencing drugs (such as keeping dopamine levels steady by the use of a skin patch or direct infusion into the intestine), medications that act on other neurotransmitters involved in movement control, and a protein that promotes the growth of brain cells.

If you aren’t yet in need of drug treatment, ask your neurologist about participating in a trial of neuroprotective therapies. You can learn about government-funded studies at www.clinicaltrials.gov. To have your experience with PD included in a developing database intended to guide new research, go to the Web site for the Muhammad Ali Parkinson Center, www.maprc.com.

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