Journal of Gerontological Nursing

NEWS UPDATE 

LIVING WITH PARKINSON'S: GUIDELINES FOR FAMILY AND PATIENT

Abstract

New York - Parkinson's disease can be neither cured nor prevented, and patients, especially those who do not respond well to medications and are to some degree disabled, must be prepared to accept physiological and social changes in their lives. Since more than 90% of Parkinson patients live at home with their families, all concerned parties should know how to make the adjustments in lifestyle less traumatic - both physically and psychologically - for everyone involved.

According to doctors specializing in the long-term care of Parkinson patients, there are dozens of ways that patients, or Parkinsonians, as they prefer to be called, and the families can make lifestyle adjustments without diminishing the Parkinsonians' selfrespect or enjoyment of life. Their success inevitably depends on the ability to respond constructively to obvious and subtle changes occurring in the patient.

Inform the Patient and Family - Studies show that more than 99% of all Parkinsonians believe doctors should inform patients about their disease as soon as the diagnosis is certain. Not only does this help the patient to understand the symptoms that are being experienced, it helps in the prompt administration of whatever treatment or therapies may be required. And, while patients may be disturbed to learn the diagnosis, it will eliminate guessing about other possibilities, such as brain tumor, which could be more frightening.

Family members should also be apprised of the situation, so that they know how to assist and comfort the patient. Studies show conclusively that patients who are contented, prospering, and adapting most effectively and courageously are those who have understanding, cooperative, and adaptive families.

Maintain the Patient's Morale - An important way to keep up morale is to keep the patient contented, wanted in the family environment, and active in home activities, such as card games, family discussions, and especially the visits of friends and family who come into the home. Consideration should also be given to avoiding public embarrassments, such as spilling glasses of water, but not in such a way that damages or trivializes the patient's selfesteem.

Parkinsonians should be consulted about family affairs and be encouraged to participate in parties, outings, and ceremonies and should be introduced to new friends. Careful attention should be paid to showing that the patient is wanted and his or her presence valued. Remember that pity can be as devastating to the morale as isolation.

Change the Time Schedule - Families must understand that the slowness that accompanies Parkinson's is beyond the patient's control. It is most frustrating for the patient, whose will to move is normal, but whose muscle response is agonizingly slow.

Family members should also realize that the patient is capable of performing many tasks as usual and should be allowed to do so. Acts formerly performed concurrently may have to be performed consecutively. All involved must adjust their time schedules accordingly.

In fact, it is imperative that patients be allowed to do whatever is possible for themselves, since this will help maintain independence. A common mistake is to have personal and household chores performed for the patient. This not only has an adverse effect on the patient's body, it leads to increased dependency and fosters feelings of inadequacy and helplessness.

Prevent Falls in the Home - Since the disorder involves awkwardness and slowness in initiating movements, the home should be arranged to minimize falls, especially for older patients who are more likely to break bones. For example, remove throw rugs and loose carpets. Doorway thresholds should also be removed. Perhaps the patient's bedroom can be moved to the main floor of the house, eliminating the need…

New York - Parkinson's disease can be neither cured nor prevented, and patients, especially those who do not respond well to medications and are to some degree disabled, must be prepared to accept physiological and social changes in their lives. Since more than 90% of Parkinson patients live at home with their families, all concerned parties should know how to make the adjustments in lifestyle less traumatic - both physically and psychologically - for everyone involved.

According to doctors specializing in the long-term care of Parkinson patients, there are dozens of ways that patients, or Parkinsonians, as they prefer to be called, and the families can make lifestyle adjustments without diminishing the Parkinsonians' selfrespect or enjoyment of life. Their success inevitably depends on the ability to respond constructively to obvious and subtle changes occurring in the patient.

Inform the Patient and Family - Studies show that more than 99% of all Parkinsonians believe doctors should inform patients about their disease as soon as the diagnosis is certain. Not only does this help the patient to understand the symptoms that are being experienced, it helps in the prompt administration of whatever treatment or therapies may be required. And, while patients may be disturbed to learn the diagnosis, it will eliminate guessing about other possibilities, such as brain tumor, which could be more frightening.

Family members should also be apprised of the situation, so that they know how to assist and comfort the patient. Studies show conclusively that patients who are contented, prospering, and adapting most effectively and courageously are those who have understanding, cooperative, and adaptive families.

Maintain the Patient's Morale - An important way to keep up morale is to keep the patient contented, wanted in the family environment, and active in home activities, such as card games, family discussions, and especially the visits of friends and family who come into the home. Consideration should also be given to avoiding public embarrassments, such as spilling glasses of water, but not in such a way that damages or trivializes the patient's selfesteem.

Parkinsonians should be consulted about family affairs and be encouraged to participate in parties, outings, and ceremonies and should be introduced to new friends. Careful attention should be paid to showing that the patient is wanted and his or her presence valued. Remember that pity can be as devastating to the morale as isolation.

Change the Time Schedule - Families must understand that the slowness that accompanies Parkinson's is beyond the patient's control. It is most frustrating for the patient, whose will to move is normal, but whose muscle response is agonizingly slow.

Family members should also realize that the patient is capable of performing many tasks as usual and should be allowed to do so. Acts formerly performed concurrently may have to be performed consecutively. All involved must adjust their time schedules accordingly.

In fact, it is imperative that patients be allowed to do whatever is possible for themselves, since this will help maintain independence. A common mistake is to have personal and household chores performed for the patient. This not only has an adverse effect on the patient's body, it leads to increased dependency and fosters feelings of inadequacy and helplessness.

Prevent Falls in the Home - Since the disorder involves awkwardness and slowness in initiating movements, the home should be arranged to minimize falls, especially for older patients who are more likely to break bones. For example, remove throw rugs and loose carpets. Doorway thresholds should also be removed. Perhaps the patient's bedroom can be moved to the main floor of the house, eliminating the need to climb stairs. As a precaution, tables with sharp corners, and valuable objects that can be damaged if knocked over should be moved out of harm's way.

Finally, handles or rails should be installed wherever they might provide assistance to the patient: in the bathroom, at bedside, and especially in doorways, as opening or closing doors can cause the patient to lose balance more easily than one might expect. Having a firm support while swinging open a door can prevent a disaster. Wooden or metal railings are suitable.

Give Special Attention to Meals and Nutrition - Parkinsonians' caloric needs remain normal, although their ability to feed themselves and even to chew their food and swallow may be impaired. Weight loss and inadequate nutrition often result, unnecessarily weakening the patient. It is especially important for family members to make sure the patient is well-nourished.

Doctors suggest increasing the number of meals while decreasing the portion size. Not only is this physically less demanding on the patient, it will lessen the patient's opportunity to become frustrated with the time needed to eat a meal.

Special utensils are available that cannot inadvertently drop from the hand. For the Parkinsonian, simply holding a fork, without trying to move it between plate and mouth, may require all of his or her available concentration. Obviously, food should also be prepared so that it can be eaten directly, without cutting or mixing.

If family members can be encouraged to sit at the table and converse until the patient has finished eating, the feeling of security and well-being generated by such gatherings will help to maintain a healthy appetite.

Start Exercises - Most Parkinsonians benefit from exercise. Although exercise will not affect the course of the illness, it will help to slow the progression, and will assist in maintaining mobility.

Parkinson self-help groups provide an open environment for Parkinsonians to participate in exercise programs. The social interaction boosts morale and motivation, and the gathering of similarly affected people will diminish embarrassment and self-consciousness. Parkinson self-help groups have been established throughout the country. The Parkinson's Disease Foundation at Columbia Presbyterian maintains an up-to-date list of these groups.

Find Places To Go and New Hobbies - While travel can be difficult for some patients, it is highly recommended whenever possible. Getting out in the world decreases feelings of isolation and provokes involvement with others. Almost all forms of public transportation - trains, planes, buses - have procedures and facilities to accommodate travelers with disabilities and personnel are usually trained to assist them as needed. Even travel by car, offering steadily changing scenery, a fresh breeze, and a chance to visit familiar locales, is a welcome change from one's own backyard.

While many people do not develop traditional hobbies during their lives, such pastimes are almost essential for those who have difficulty getting about. The ability to remain productive and involved with an ongoing activity helps maintain a positive outlook.

Other Considerations and More Information - There are other areas of daily life mat will require special attention, such as clothing, furnishings, bathroom fixtures, and medication administration. Ingenerai, adaptations can be made that maintain a sense of normalcy in the patient's daily life, and helpful advice can usually be obtained from therapists, physicians, and other medical professionals.

10.3928/0098-9134-19860701-17

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