Thursday, April 14, 2005

Being "Normal"

Because of actor Michael J. Fox, Parkinson Disease (PD) has entered the public's awareness. But living with the disease remains challenging. One reader recently diagnosed with PD asked me what she could do to continue living as normal a life as possible. About 60,000 American men and women are diagnosed with PD each year, adding their numbers to the 1.5 Americans who already have the disease. Although PD usually develops in people after age 65, about 15% of those diagnosed are under 40, as was Fox. PD is a neurological disorder caused by the dysfunction of certain nerve cells (neurons) that make dopamine, a brain chemical that allows the body to function in smooth, coordinated movements. When approximately 80% of the cells that produce dopamine are secreting low levels, PD results, with its distinctive tremors, slow movements, rigidity and balance problems. The path of PD is quite individualistic, advancing more slowly in some than others. The disease is not fatal... medical treatment is vital but yet there is no cure. To discuss how best to live with PD, I called Lyvonne Carriero, RN, coordinator of PD support programs at Shands Jacksonville, University of Florida. Carriero's first and most urgent advice is to stay positive. There is much patients can do to live comfortably with PD, but it requires an active and determined approach. What patients do in the early stages, she says, also impacts how well they deal with PD as it progresses.
Because PD disrupts normal physical movements, getting regular exercise is of paramount importance. You can continue with the sports and activities you enjoyed before -- even tennis -- but you probably will need to adapt somewhat to a slower pace and allow for tremors. Most important, though, is to practice types of exercise that build strength, flexibility, coordination and balance -- ideally, yoga and tai chi, says Carriero. She encourages all PD patients to start them immediately. (Of course, check with your doctor first, and be sure to alert the instructor that you have PD.) You should take at least one class of either or both each week, preferably more, and practice your yoga or tai chi every day. She finds that patients see physical improvement even after the first class, and all patients notice that performing regular exercise lifts their mood.
Exercising your mind is also vital. Dementia develops in some PD patients, but keeping the mind active, Carriero says, helps to reduce the degree of dementia and may delay its onset. She advises playing games such as Scrabble and Bridge, doing crossword puzzles and any other activity that engages and challenges you mentally. You also need more sleep with PD... and you will function better physically and mentally if you take a daily nap, she says.
Two characteristic physical patterns are particularly challenging for PD patients and those around them. These are the slowed movements (called bradykinesia) caused by the delay of brain signals to the muscles... and something called "freezing," a sudden and involuntary inability to continue moving that is fairly common, especially as PD advances. Bradykinesia generally develops so gradually that family members are more likely than patients to notice it, says Carriero. The primary advice concerning this slowness is for patients to be sure those around them understand this is part of the disease and that living in "slo-mo" is simply to be expected. Freezing is more complicated, though. People with PD might be walking through a door or across a familiar room and are suddenly unable to move -- they quite literally freeze. Anticipation and behavioral techniques can help the person get through this. Carriero advises patients to distract themselves by singing or listening to a ditty or rhythm in their head, or to create an imaginary line on the floor and then picture themselves crossing it. Changing direction also can ease the situation -- instead of trying to continue moving forward, take a small step to the side or the back. She observes that freezing sometimes accompanies feelings of claustrophobia such as happens when walking down a crowded hallway or being in a room with a lot of furniture. For this reason, she suggests that patients keep their environments simple and clutter-free. It is also important to rid the home of anything that might cause tripping, such as area rugs.
There are no specific recommendations concerning diet and PD, but obviously, a healthy diet is important, as is maintaining a healthy weight. A recent monkey study by the National Institute on Aging suggested that eating a lower-calorie diet may help with PD symptoms. For six months, researchers fed one group of monkeys a normal diet and another group a diet with 30% fewer calories. They then gave both groups a toxin that causes damage similar to that of PD. The leaner monkeys, although affected by the toxin, better retained their ability to move and their speed of motion. A healthy diet also can help with constipation, a frequent problem with PD. As to dietary supplements, Ray Sahelian, MD, who has studied and written extensively on the use of supplements and natural herbs, advises PD patients to take antioxidants including 30 milligrams (mg) to 100 mg of coenzyme Q10 daily and 50 micrograms (mcg) to 100 mcg of selenium. (Again, check with your doctor first.) A separate visit to a naturopathic physician with special training and interest in neurology may provide additional help for this disease. It's not unusual for people diagnosed with PD to want to withdraw socially because of anxiety about tremors, freezing and other side effects. Carriero tells patients that they can maintain their former lifestyles. Educate yourself and those around you about the nature of the disease and its symptoms, seek out a support group if you feel that will help (you can find these through the Parkinson's Disease Foundation or the American Parkinson Disease Association, Inc.), and be fearless about living fully.


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