CNS: The Parkinson Patient at Home

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THE PARKINSON PATIENT AT HOME

Robert S. Schwab, M.D. & Lewis J. Doshay, M.D.

More than ninety percent of all patients with Parkinson's disease live at home with their families. The purpose of this report is to help the patient and family to achieve better adjustments to home living. Our goal is to make each patient as comfortable and contented as possible in spite of the disease and to increase the understanding of his devoted family.

INFORMING THE PATIENT AND HIS FAMILY:

The first point to be made is that the patient, as well as his family, must be informed of the nature of his disorder just as soon as his family doctor is sure that he has Parkinsons disease. This will permit better prospects for immediate and intensive treatment, and will afford a better ultimate outlook for the patient. The patient, however, should be told in a way that will not upset, frighten or discourage him. The facts should be quietly laid before him in an optimistic way so that he may achieve a sensible adaptation. Two hundred and ninety-nine out of three hundred patients who were asked if they felt they should be told by their doctor when he was sure of the diagnosis replied "Yes".

It is quite obvious that you cannot learn to adapt and handle all the problems connected with an illness such as this unless you know what it is. It may sometimes be difficult to decide what to tell the neighbors and visitors who come regularly to the house as well as servants and others around the patient and family. It is, nevertheless, our opinion that you should be frank and honest in telling them that he has Parkinson's disease. Frankness of this type eliminates guesses that involve insanity, feeblemindedness, alcoholic brain disease, cancer of the brain, impending stroke, or something worse.

THE PREVENTION OF FALLS IN THE HOME:

Since the disorder involves awkwardness and slowness of muscle movements, periodic freezing of the legs, a tendency for the body to stumble forward or backward, and an uncertainty in getting about, the home should be arranged to minimize falls. Older patients have an added hazard from falling since their bones have lost some of the strengthening calcium, (osteoporosis) so that if they do slip to the floor, they could break an arm or leg. In their younger days such a fall would not have done any more than annoy them. The first task in fall prevention is to remove all loose or scatter rugs. Carpets, if they are fastened down well, are safe.

If possible, all doorsills should be removed, particularly those that the patient would traverse in going from one room to another. This, of course, is impossible to do in a hotel, and difficult in a rented apartment, but sometimes arrangements can be made and these can be temporarily removed in homes that one does not own. A carpenter can take away all of the doorsilis and leave the space between the rooms flat, and not unsightly, in a few hours. Doorsills are a common cause of stumbling when a patient goes from one room to another.

It is wise, also, to remove any sharp pointed tables and other bits of furniture and bric-a-brac that might cause the patient to stumble or to hurt himself seriously if he should fall onto them. Valuable objects, lamps, vases, etcetera, that might be knocked down from conspicuous places should be put on shelves and out of the way, so that in the ordinary moving about the room contact with them, will not occur. Flights of stairs from one room to another that are built into some of the modern houses, and are regarded as artistic by architects, should be avoided. If one has a home with such stairs, there is nothing that can be done except to try and make them as secure as possible. An adequate rail should be installed on both sides. If stairs in a house are a threat, an arrangement to live downstairs may reduce the number of times that the stairs must be climbed and is a matter for individual decision. However, when one is choosing an apartment or a home, the welfare of the patient with Parkinson's disease should be given close consideration. Even the presence of one step in an apartment building leading to the sidewalk can be a source of danger. The level is the very best place for a person with this disease. Ramps are alright, but stairs often constitute a difficulty.

As an added measure of safety, a carpenter should install metal or wooden handles on the walls adjacent to doorknobs of all doors. Their purpose is to afford the patient security in standing, by holding the handle on the wall with one hand, while he pulls the doorknob with the other. Moreover, some doors open all too easily and the patient may be thrown backward to the floor, if he does not have his other hand on a secure support.

INCREASING THE TIME SCALE:

The next step to consider for family understanding is that intrinsic difficulties of motor performance render it next to impossible for the patient to do one motor act at the same time that he is doing another one. He must learn and adapt to doing only one single act at a time. This inevitably leads to a slowness in accomplishing chores. A healthy person can brush his teeth and at the same time tidy up the bathroom with the other hand. The Parkinson patient finds that he cannot do this any more. If he reaches with the other hand while he is brushing his teeth, the hand holding the brush will cease to function. Since he can do only one of these motor acts at a time, they have to be done consecutively, instead of concurrently. It means that in the course of a day he will have to spend a great deal more time doing ordinary tasks.

In addition, since he may be insecure and unsure of himself, he must be very careful to maintain a comfortable as well as a secure posture, so that he may not slip or fall. All this entails extra time. Dressing, for example, in a patient who has a moderate degree of involvement with Parkinson's disease may take three to five times as long as before. It is, nevertheless, very important to keep his muscles in action and that he do as many of these ordinary chores himself. The happy, contented, satisfied patient with this disorder is one who is completely independent of the help of others. In order to achieve this he has to be given adequate time. If it took him twenty minutes before he had the disease to dress and shave, he should allow himself an hour, or even an hour and a quarter. Working out a proper time schedule for the patient so that he will not be under pressure or hurried, and yet will do all of the things himself, requires a great deal of understanding and cooperation on the part of the relatives as well as on the part of the patient.

Many tasks involving visits to his business, shopping and so on, will have to be curtailed or even omitted on certain days, because the energy potentials can vary from day to day for sundry reasons. It is also important in altering the time scale that the patient should not be made over-tired by the necessity of completing all his chores. If he is allowed to help his wife set the table in a slow and deliberate way, and he completes his meal at a more leisurely pace than he did formerly, he should then be permitted to sit and read the paper rather than be compelled to help in cleaning up and doing dishes. Reasonable arrangments can easily be worked out by intelligent and understanding people, for the best interests of the patient and all concerned.

MEALS AND FOOD:

It is necessary in handling the problem of the meals for the other members of the family to appreciate and cooperate with the patient in his longer time scale. Children and other members of the family should be encouraged to sit around the table and carry on coonversation, rather than to get up and leave the patient alone to finish his meal because of the greater time that he takes.

There are various aids that can make it more pleasant for the patient at a table. His meat should be cut for him in advance, since handling a knife is a rather difficult problem for a patient with advanced Parkinson's disease. It can also help to obtain an electric warming tray, which keeps the food warm and palatable over the longer period required for the patient. Some foods are more difficult for a Parkinson patient to manage. For example, he should be permitted to eat peas with a spoon instead of a fork. Patients with dentures and those who have difficulty chewing hard meats or vegetables, in consequence of which they eat sparingly and lose weight will benefit by having some of the food ground up by ordinary electrically driven blendors and served as thick soups, stews or meat loaf.

MAINTAINING WEIGHT:

It is essential in the care of a patient at home to maintain the patient's body weight. Nearly seventy per cent of our patients show various levels of loss of weight during their illness. This is due almost entirely to the inability to consume enough calories for their daily needs. Some of it derives from the failure to complete the meal in the required time. There is also the difficulty in chewing and handling the food items themselves. The diet of a patient with this disease must be supervised carefully so that he consumes 1500 to 2000 calories per day. Sometimes it is better for him to eat lightly at breakfast, followed by a mid-morning snack such as a sandwich and a glass of milk, a light lunch, something in the mid-afternoon, a moderate meal at supper and, finally, a sixth light meal before he goes to bed. In this way an adequate amount can usually be maintained for all his requirements. He should be weighed approximately once a week, and if the weight loss does not respond to the above suggestions, his physician should institute a more rigid form of high caloric intake, possibly adding vitamins or other supplements to the diet.

Steady weight loss due to inadequate intake of food means that the body is using, instead of food, its own tissues, fat stored in the muscles, and even the muscle protein itself, as well as stored supplies of fat and tissue under the skin, which are burned up as fuel. In this situation we can use an analogy of a steamship that has inadequate coal aboard and in order to keep its engines running tile boilers have to be fed from the timbers of the vessel itself. Naturally, this can only lead to disaster. In the case of a patient with this disease the consumption of his own tissues to make up for deficiencies in food intake and calories can also lead to disaster. Loss of tissue substance can lead to weakness in standing and walking. There is tremendous fatigue for ordinary activity which, added to weakness of the muscles that support the body, entails a much greater risk of falling. Moreover, the loss of tissue substance deprives the bones of the pelvis and legs of a good deal of natural padding and protection. Hence, if a fall does occur, the bones bear the full brunt of the blow rather than the muscles. A fracture may thus result from ordinary slipping to the floor, whereas previously it would only have resulted in a bruised muscle.

A third reason to combat weight loss is that when the body is forced to utilize its own tissues to maintain the energy of life, important minerals such as calcium are taken from the bones themselves by nature. This causes the structure of the bones to become weakened so that minor falls are more likely to produce serious fractures than otherwise.

This thinning of the bones during weight loss, very difficult to combat, is called osterporosis, and is less likely to occur when weight is maintained at a satisfactory level.

CHAIRS AND BED:

One of the problems of patients with Parkinson's disease is getting in and out of certain chairs. This can be helped by setting aside a special chair for the patient and placing 2" x 4" blocks under the back legs, or the legs can be lengthened 2" by a carpenter. A chair that is slightly tipped forward allows a Parkinson patient to get in and out more easily. This is a simple convenience which, along with all the others, makes the patient's life more comfortable at home. Getting out of bed can be rendered easier by tying a sheet to the bed post and a knot at the other end, which the patient can grasp to rise to a sitting position.

CLOTHES:

In handling clothes there are a number of recommendations. Buttons, especially small ones, are always difficult for the patients. These can be replaced by zippers on coats, trousers, shirts and dresses. Tying shoelaces may take so much extra time and energy that the patient finally gives up in desperation and goes around with loose laces, which can lead to falls. It is possible to purchase elastic shoelaces that can be tied in place permanently and the shoes are then taken off without having to untie them; also zippers or snaps can be substituted for shoelaces. The use of bowling shoes with upturned toes reduces scuffing and stumbling. Ordinary neckties are quite difficult for some patients to handle and they should be replaced by clip ties which slip under the collar.

The sleeves of coats at the junction of coat and sleeves are usually too narrow for the arm to enter easily. These can be widened 2 inches by a tailor, which will permit the patient to get his coat on without outside assistance. An overcoat or topcoat is a sourcc of great difficulty for most patients. At the Institute of Rehabilitation in New York there are a number of special garments for patients with various types of muscle and motor handicaps, and a patient living in this area might profit by having his family go there, or go there himself, to see what special garments are available which would make his life easier.

TOILET:

Patients with this disease, particularly those with bilateral involvement of slow and rigid muscles, find ordinary toilet cleanliness an arduous task. This is again due to the fact that there is difficulty in performing two motor acts at the same time. Ordinarily, he cleans himself while in a half-errect posturc. A Parkinson patient, if he gets into this posture, is unable to do the other motor act with his hand and falls back on the toilet seat. A very simple device is to have the plumber raise the scat two inches above the bowl by inserting four metal or wooden supporting legs which allows the patient to remain seated while performing his act of cleaning. Special elevated toilet seats are now available in surgical supply stores. Supports in the form of a bar or frame at the side of the toilet prove helpful to the patient in adjusting his clothes.

HOME TEMPERATURE:

The more clothes a patient has to put on and take off the more difficulty he has. Therefore, if the patient can spend at least part of the year in a warm climate where he has only to wear a sport shirt and a pair of shorts, life is a great deal easier for him. Not everyone, however, has the means or facilities to go to the tropics or even to the southern part of the United States for three or four months of each year and most of them have to remain in the north throughout the winter. If the temperature in the home can be maintained a little above average, the patient gets along with fewer clothes and finds it easier getting dressed and undressed.

EXERCISE:

Exercise, such as walking outdoors, is an essential part of keeping healthy with this disease, but in winter when there is snow and ice about, this can prove hazardous. Ordinary exercise machines have not been too efficient, hence a special Parkinson exercising chair, called the Electric Rocking Chair, has been produced for the needs of such patients. The advantage of this is to give the patient in his own home the necessary passive flexion and extension to his muscles for twenty minutes several times a day, without requiring, the presence of a physiotherapist. This apparatus passively exercises wrists, elbows, shoulders, as as hips, knees and ankles. A simple model that exercises the legs only is also now available. Because stiffness of the muscles interferes with circulation in the legs and because patients tend to remain sitting for hours, swelling of the feet becomes a problem. The rocking chair exercise machine will, if used several times a day, prevent this. Elevating the feet several times a day for a half hour is also helpful.

Exercise and activity are the basis of life for the muscles. Muscles that do not move soon undergo wasting or atrophy and become replaced by scar tissue which shortens the muscles, twists the joints out of shape and progressively leads to the deformities, infirmities and disabilities of later years. People must understand that muscles are composed of 80 per cent water and just as "running water floes not freeze" so moving muscles do not freeze, shorten or ache. Every activity, be it work, walking, visiting, shopping or playing cards, is exercise and should be engaged in to the fullest in order to keep the muscles alive until a cure is discovererd. For advanced and partially disabled patients, a special booklet illustrating various corrective exercises for home use is available on request.

PHYSIOTHERAPY:

This brings us to the problem of physical therapy. Everyone agrees that physiotherapy, is one of the most helpful means to relax rigid and frozen muscles. This is, however, often impossible to achieve even once a week, because the distince to reach a physiotherapist and the cost involved are prohibitive. Whenever it is possible to obtain a competent physiotherapist to treat the patient once or twice a week, it is the most profitable investment of the family's resources for the future comfort and well-being of the patient. The lattcr must not rely entirely upon such treatment to achieve results but should carry out a program of daily home exercises, which the physiotherapist can set for his individual needs, and practice with him. These are as essential and important to do faithfully as the taking of medicine.

TRAVEL:

Travel is sometimes difficult for patients with advanced Parkinson's disease. They may require help in geting in and out of automobiles, trains, airplanes, etcetera, but travel on the whole is very good for them. We always recommend it, provided they have companions to go along with them and there are no medical contra-indications. The traveling patient is usually helped by the employees of railroads, buses, airlines to such an extent that he finds little if any real difficulty. They see new sights and have many interesting experiences. Traveling by automobile is particularly good for such patients since the movement of the car tends to relieve some of the rigidity. The constantly changing scenery and the feeling of getting away from the confines of the home help to elevate the morale of the patient.

DRIVING A CAR:

A patient with this disease should be permitted to do so as long as he does not become involved in heavy traffic or places where his slowness would be a hazard to himself and others. Driving around the suburbs of the city, or in the country, is usually safe. In our experience patients with moderate levels of symptoms are rarely involved in accidents. Even so, it is advisable to have someone with the patient who can take over, should fatigue or difficulties arise.

MORALE:

The whole aspect of muscle exercise and activity, communication, and travel, should be worked out on the basis of the patient doing as much as possible, short of encountering fatigue, stress or worry.

An important way to keep up the morale of the patient with this disease is to keep him contented, wanted in the family setting, and participating in as many activities in the home as possible, such as playing cards, and other games, sitting around the family circle, being read to, and talking with friends and visitors who come to the house. This requires a certain amount of personal supervision to insure a comfortable adaptation to each situation as it occurs. For example, if he is involved in a card game, shuffling cards might prove difficult, but playing the game would not be. Therefore, somebody should shuffle the cards for him without exposing him to the needless embarrassment of spilling the cards on the floor. Similar consideration should be exercised with glasses of liquid, cups of hot beverage, etcetera, so that they would not be spilled by a patient who is awkward with his hands. They should be placed in secure holders on the table, and especially when friends or visitors are about.

The patient should be consulted often about his family affairs. He should be encouraged to participate in parties, outings, ceremonies. He should be introduced to all new friends. In short, he must be made to feel that he is still a valuable source of family prestige, that he is wanted, and is important. Embarrassment and pity are devastating to a patient's morale. Patients should realize that the shaking of Parkinson's disease by itself does not cause weakness or much loss of motor skills except the very finest finger movements. The stiffness is the problem that produces the most awkward form of disability. The shaking, however, bothers many patients because they are self-conscious and embarassed when others notice it in public, and, therefore, they are shy about such shaking. Every effort should be made to accept the shaking without embarrassment, mentioning it themselves when they are with friends or their family. Shaking is so common in the world that we live in, that strangers may notice it but certainly only in passing, and usually would not be upset by it. Patients should accept some shaking in public and with strangers just in the same way that a person without hair accepts his baldness.

SLEEP AND NIGHTS:

Patients with Parkinson's disease usually sleep without too much difficulty and frequently they may fall asleep in their chairs while watching television or reading a book or paper. These cat-naps should be tolerated by the family since they are good for the patient and rarely interfere with the regular night's sleep.

It has recently been brought to the attention of the public, as well as to doctors, that normal elderly people, who are forced to remain quiet in a completely soundproof room in absolute darkness, will very shortly develop hallucinations and other mental disturbances because of the failure of sensations entering the brain in a normal way, such as through the ears and eyes. This phenomenon, which scientifically is called "sensory deprivation", occurs fairly often among elderly disabled patients, such as those with Parkinson's disease. It could develop if the relative tries to find a very quiet place for the patient, a room where noise from traffic and neighborhood will be reduced or eliminated. Heavy drapes and soft carpets further serve to reduce sounds of the world outside. The lights are turned off at night so that the patient is not hearing or seeing anything for 10 to 12 hours at a time. Even by day, such patients usually experience an inadequate amount of stimulation, remaining confined in a chair in one room for hours at a time. Thus, it is not difficult to conceive that such patients can develop a sensory deprivation phenomenon.

Even when they do not take medicine that could increase this tendency, the night can become a fearful problem to both the patient and his family. Ordinary objects in the darkened room take on the aspect of monsters or people invading their privacy, and in this imposed silence and darkness they both hear and see things that are not there. It is possible to reduce or eliminate these nocturnal episodes of confusion and hallucination by keeping a light on at night, having a radio playing softly, keeping the windows open for night sounds, and making occasional visits to the patient's room and talking with him. A little imagination and ingenuity can help to combat this tendency and render it necessary to cut down the medication, which may sometimes contribute to the problem. As long as it is understood, a great deal can be done to make it tolerable to both the patient and the family.

HOBBIES:

Many people never develop satisfactory hobbies during their lives. When they find themselves in retirement or handicapped by a chronic illness, they suddenly come to realize the seriousness of this deficiency, at a time when it is not easy to develop new hobbies. Consulting an occupationial therapist can prove helpful, since they have great experience in making suggestions and working out interesting spare-time activities and "do-it-yourself" tasks, which can be done in the home. There are many types of sets available in hardware or department stores that can serve to keep such patients interested, amused, and busy during the day. Ship model construction, metal and leather work, a certain amount of carpentry, all have their place and appeal to some individuals. Many find new enjoyment with television, radio and record machines, since muscle difficulties usually render their own production of music unsatisfactory, or too difficult. Reading of magazines, novels, biographies and history proves satisfying to still others. The entire program should be geared to keep them occupied and interested during the waking hours.

Programs in community houses have recently been set up for "shut-ins" and other patients with chronic illness, and the family should investigate any "senior citizen" activities in the neighborhood. They are most worthwhile, since a group of patients with fairly similar disorders find mutual interests that they can share and discuss.

PROBLEMS AT HOME WITH MEDICINES:

The family doctor or specialist will give the patient a schedule of medicine which is to be used to reduce the shaking and stiffness. If a patient is not alone, his spouse or other members of the family can assist him in keeping his schedule as accurately as possible, pouring the medicine out of a bottle or counting out the necessary tablets or capsules during the different times of the day. However, if a patient has to be left alone in the home, the use of a small plastic bottle holding one-half ounce will allow the relative to pour out the exact amount of medicine in the morning, and leave it in this container on the table. The patient can then take it at the prescribed time without difficulty. Tablets and capsules are even easier to leave for a patient, in different boxes, to be taken at specified hours.

If a new medication produces confusion or mental disturbances during the night, it should be discontinued until the physician is consulted by telephone. Sometimes very slight changes in the schedule or the elimination of a pill after supper will stop the disagreeable disturbances at night.

Patients who are kept busy and active by day usually sleep well during the night, whereas those who are bedridden and those who remain on sofas or in chairs throughout the day have considerable difficulty in sleeping. The family physician usually can take care of this trouble. There arc many different types of medicines that aid sleeping without producing undesirable, habit-forming reactions.

While on the subject of medicines, the problem of constipation occurs in nearly every patient with Parkinson's disease. This should be presented to the family doctor who knows best how to handle it. There are many laxatives that can be taken every day without harm. Sometimes increasing the amount of water intake will serve the purpose, and, of course, muscular activity throughout the day proves helpful. One need not be worried if the bowel movement does not occur every day, since there is no truth to the notion that one should have a daily bowel movement in order to remain healthy. There are many people in normal health who have only two or three bowel movements a week. This problem should be discussed with the family doctor and his advice followed.

CONCLUSION

Patients whom we have seen over the past fifteen years, who are contented, prospering and adapting most efficiently and courageously to their illness, are those who have understanding, cooperative and adaptive families. Even more important than an understanding physician is an understanding and adaptable spouse. This situation, when present, finds the patient indeed blessed by one of the most important assets for living with this illness.