Learning to Live With Parkinson's Disease
For immediate release: May 27, 2008
Two UM Physicians Share Coping, Disease Management Tips in New Book
While there is still no cure for Parkinson's disease -- a neurological disorder that erodes the brain's ability to control movements and speech - doctors say Parkinson's patients have reasons to be optimistic. New medications and extensive research into halting the degenerative disease are making the condition easier to manage.
"When I was in medical school, the only thing that was discussed in terms of Parkinson's treatment were the use of anticholinergics [drugs first used in the 19th century to reduce Parkinson's symptoms]," said William Weiner, M.D., a professor of neurology at the University of Maryland School of Medicine and director of the University of Maryland's Parkinson's Disease and Movement Disorders Program. "Now, anticholinergics play only a small role in Parkinson's treatment. There has been tremendous growth over the years. Although the primary drugs we use today aren't perfect and have complications, they are very powerful. They have normalized patients' life spans."
Drawing on their extensive experience treating Parkinson's patients, Weiner and Lisa Shulman, M.D., an associate professor of neurology at the University of Maryland School of Medicine, co-authored the book "Parkinson's Disease: A Complete Guide for Patients and Families." The book, also co-authored by Anthony Lang, M.D., a neurology professor at the University of Toronto, offers practical coping tips and answers patients' frequently asked questions.
"We want to help people adjust to living with Parkinson's," said Shulman, a co-director of Maryland's Parkinson's Disease and Movement Disorders Program. "We want people to learn how to deal with their Parkinson's and not be overwhelmed by the diagnosis."
Parkinson's tends to strike people over the age of 50, but young-onset Parkinson's has been known to affect people in their 30s and 40s. Symptoms include tremors or shaking at rest, a loss of balance, rigidity of the limbs, a slowed walking pace and a soft, sometimes difficult-to-understand speaking voice. Occasionally, Parkinson's can also cause sleep disturbances, dementia, depression, personality changes and sexual dysfunction. Symptoms generally get worse over time.
Reasons for Hope
Despite the troubling characteristics of the disease, the accomplishments of celebrity Parkinson's patients such as Michael J. Fox, Muhammad Ali and Janet Reno have inspired other Parkinson's patients. Thanks to new medications and extensive research, the estimated 1 million Americans living with Parkinson's today can look forward to a better quality of life than their predecessors, as long as they maintain a healthy persepctive.
"There is no question that a Parkinson's diagnosis changes the rules of the game, but how well a patient is able to function with Parkinson's depends largely on how positive their outlook is," said Shulman. "I have seen patients with relatively mild symptoms who I would describe as being more 'disabled' than patients at really advanced stages of the disease. This is because of the ways they limit themselves mentally. ... Patients who remain focused on what it is they can still do instead of dwelling on the abilities they have lost tend to cope much better."
The first of the "breakthrough" drugs providing relief for people with Parkinson's was levodopa, introduced in the 1960s. Levodopa, which works by increasing dopamine levels in the brain, has remained the principal Parkinson's drug over the years.
Several new drugs, however, have improved upon levodopa by helping the brain better respond to its side effects. They prevent complications such as erratic and involuntary gyrating and wriggling movements. These drugs include COMT inhibitors like entacapone (COMTAN) and dopamine receptor agonists like pramipexole (Mirapex), ropinirole (Requip) and pergolide (Permax).
Many people believe a Parkinson's diagnosis means they will have to give up driving, traveling and working. This isn't necessarily true. Each case of Parkinson's is different and the disease follows a unique course in every individual. Some Parkinson's patients do eventually end up relying on others to feed and bathe them, but many others don't.
Although driving isn't safe in the advanced stages of Parkinson's, patients with milder symptoms who can control their impaired motor abilities can continue driving. As for work, Weiner and Shulman say that if a person enjoys what they do and are still able to perform their job, there is no reason they shouldn't continue working.
Remaining active is important for Parkinson's patients, said Weiner and Shulman. While a sedentary lifestyle isn't good for anyone, it is particularly damaging for those with Parkinson's. The doctors encourage patients to exercise as much as possible, either in a formal exercise program or simply by walking, swimming and visiting friends. Exercise and daily activity helps patients improve their overall strength and muscle tone, and avoid feelings of helplessness and passivity.
"We are living in a very hopeful time," Weiner said. "If you have to have a disease such as Parkinson's, it is an optimistic period in that there is a lot of interest in it now and a lot of research going on."
Weiner and Shulman recently began recruiting patients into clinical trials at the University of Maryland to help find more effective ways to treat Parkinson's symptoms. These clinical trials are part of larger, multi-center studies that are evaluating the medications rasagiline, entacapone and levodopa ethyl ester. Through these trials, researchers hope to discover new drugs, experiment with dosages of existing drugs and combine drugs in new ways that will alleviate Parkinson's symptoms more consistently and with fewer side effects than current treatments.
Researchers are also studying ways to stop the progression of Parkinson's in its early stages, and to deliver Parkinson's drugs directly into the brain, thereby reducing complications, said Weiner.
"I urge patients, not just Parkinson's patients but all patients, to take part in clinical trials," Weiner said. "The drugs that are used today were tested on patients in clinical trials five years ago. It is only through these studies that we can find out what is effective and what is not."
To find out more about Parkinson's disease, visit the Maryland Parkinson's Disease Center Web site at http://www.umm.edu/parkinsons/.
This page was last updated: May 30, 2013