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Family Health Magazine - Fall/Winter 2001

When a Loved One Has Parkinson's Disease

Sherri Kevoe, a licensed clinical social worker, still remembers one particular session of her monthly Parkinson's DiseaseMan with Cane Being Guided Support Group offered by the Saint Barnabas Institute of Neurology and Neurosurgery. The meeting occurred during a snowstorm and despite the severe weather, eight dedicated individuals showed up. Some of those in attendance came with walkers and canes.

"I was almost in tears," recalls Ms. Kevoe. "That really says something about their determination. I have found Parkinson's patients to be one of the most hopeful groups of people. They and their caregivers are very aggressive in trying to find more information about their condition.

They are really out there trying."

Parkinson's Defined

Parkinson's disease is a progressive and degenerative neurological disorder that affects over one million people in the United States. Named after Dr. James Parkinson, a London physician who was the first to describe the syndrome in 1817, Parkinson's disease causes a gradual deterioration of a small area of cells in the mid brain known as the substantia nigra. The degeneration of these cells results in a reduction of a chemical known as dopamine that affects voluntary movement. The loss of dopamine can produce one or more of the classic signsof Parkinson's disease.

"The presence of a tremor while at rest is one of the cardinal features of Parkinson's disease in 80 percent of patients," says Marvin Ruderman, M.D., Co-Chief of Neurology at Saint Barnabas Medical Center. "Many patients also experience a slowness of gait, a reduction of movement and stiffness of limbs."

Other symptoms of Parkinson's disease can include: reduction in handwriting size; lack of arm swing on the affected side; decreased facial expression; lowered voice volume; episodes of feeling "stuck in place" when initiating a step; and less frequent blinking and swallowing.

A Complex Condition

Dr. Ruderman reports that the cause of Parkinson's disease remains a mystery and there is no definitive research that identifies an actual gene linked to Parkinson's, although there are ongoing studies in this area. Most people with the condition suffer from primary or "Idiopathic Parkinson's Disease." Idiopathic means the etiology or exact cause is unknown. There are also less common "Parkinson's syndromes." Although 15 percent of patients are diagnosed before age 50, it is generally considered to be a disease that targets older adults, according to the American Parkinson's Disease Association (APDA). While there is, as yet, no cure for this condition, progressive treatments allow many patients to maintain a high level of function throughout their lifetimes.

"It is a variable disease," says Dr. Ruderman. "Parkinson's can present as a very mild disease for many years in some individuals and treatment would not be needed immediately. By the time someone actually has symptoms, he or she may have lost 80 to 85 percent of their dopamine. The onset of treatment is determined by when the condition begins to affect the patient's lifestyle. "

Helping the Parkinson's Patient

CaregiverWhile there are currently no treatments to prevent progression of the disease, there are medications that can treat the symptoms effectively. The first step, says Dr. Ruderman, is to address the most prominent symptom. If a patient is mainly bothered by tremors, anticholinergic medications may be prescribed. If the patient has difficulty walking because of a balance problem, levadopa combined with a dopa decarboxylase (DDC) inhibitor (e.g., cardidopa, benserazide) maybe prescribed.

Levodopa, which is converted into dopamine in the brain, can effectively replace the missing neurotransmitter in many patients. However, as the disease progresses, the benefits received from levodopa tend to decrease because there are fewer cells in the brain to store it, Dr. Ruderman relates. At this point, it is often necessary to increase the dose or frequency of levodopa administration to ensure that enough of the medication consistently reaches the brain. These dosage manipulations are not always completely effective."Levadopa is not a cure, but it can make patients close to normal in the beginning," says Dr. Ruderman. "Because its effectiveness can decrease over time, many younger patients do not use it right away. Another treatment option for those patients on levodopa who are experiencing "wearing off" of the effects of their medication before the next dose is to add a cathechol-o-methyl transferase inhibitor (eg. Comtan), which prolongs the action of levodopa."

The use of a dopamine agonist medication (eg. Permax, Mirapex or Requip), either alone or in combination with levodopa, has also become an increasingly utilized treatment option, particularly in younger patients, says 4Dr. Ruderman. Experimental or less common treatments may include surgery to destroy tissues responsible for tremors, which may reduce symptoms in some people. Dr. Ruderman says that the most active area of research insurgery involves deep brain stimulation and ablative therapies. For example, some patients have found relief from tremors after undergoing a procedure that creates a lesion in the thalamus, located in the forebrain.

Emotional Support May Be Beneficial

When meeting with a newly diagnosed Parkinson's patient, Dr. Ruderman emphasizes that Parkinson's is "a treatable disease" and that most individuals can be restored to good function. The current pharmaceutical treatment is generally very effective and, while there is a fair amount of uncertainty, Dr. Ruderman relates that in most cases progression of the disease is not rapid. Emotional support for the person with Parkinson's and his or her caregivers may help in coping with the changes caused by the disease. Ms. Kevoe's support group, held at the Saint Barnabas Ambulatory Care Center, provides information, education and assistance in learning to cope with the emotional aspects of the disease. Monthly speakers have included occupational therapists, speech therapists, nutritionists, integrative alternative therapy representatives, a neurologist, a pharmacist with APDA and an exercise physiologist. "Our sessions are for those who are looking for information to help themselves," says Ms. Kevoe.


With disease advancement, motor complications may include muscle
tightness or cramping, uncontrollable movements and inability to move. Patients may be increasingly unable to perform daily activities such as walking, dressing, speaking or rising from a chair. Preventing falls becomes a major priority. In many cases, physical, speech and occupational therapy may help promote functioning and independence. Also, simple aides such as railings or banisters, special eating utensils or other devices, may help.

"Group members share their ideas and it is very helpful," notes Ms. Kevoe. "One suggestion is to use silk sheets because it makes it easier for patients to slide in and out of bed. Patients are always bringing in articles. They learn a great deal from one another."

For more information about the Parkinson's Disease Support Group, please call the Saint Barnabas Institute of Neurology and Neurosurgery, at (973) 322-6600. For a referral to a Saint Barnabas Medical Center neurologist, please call 1-888-SBMC-DOC.

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