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THE PARKINSON PATIENT AT HOME
ROBERT S. SCHWAB, M.D.
LEWIS J. DOSHAY, M.D.
More than ninety per cent 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 pos-
sible in spite of the disease and to increase the understand-
ing 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 Parkin-
son,s disease. This will permit better prospects for immedi-
ate and intensive treatment, and will afford a better ulti-
mate 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 adapta-
tion. Two hundred and ninety-nine of three hundred pa-
tients who were asked if they felt they should he 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 diffi-
cult 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
*Some Of these suggestions obviously are not indicated for the very mild
patients who are around 85 per cent of normal, but all patients should be
Interested in what can be done for the severe symtoms of this disease.
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 ten-
dency for the body to stumble forward or backward, and
an uncertainty in getting about, the home should be ar-
ranged to minimize falls. Older patients have an added
hazard from failing 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 fas-
tened down well, are safe.
If possible, all doorsills should be removed, particu-
larly 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. Doorsilis
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 modernhouses, and are re-
garded 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 down-
stairs may reduce the number of times that the stairs must
be climbed and is a matter for individual decision. Hoiv-
ever, when one is choosing an apartment or a home, the
welfare of the patient with Parkinson't 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 afriglit, but stairs
often constitute a difficulty.
As an added measure of safety, a carpenter should in-
stall metal or wooden handles on the walls adjacent to door-
knobs 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 lie 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 lie will have to spend a great deal more time
doing ordinary tasks.
In addition, since he may be insecure and unsure of
himself, lie must be very careful to maintain a comfortable
as well as a secure posture, so that lie 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-
lie had the disease to dress and shave, he should allow him-
self 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 co-
operation 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 omitteci on
certain days, because the energy potentials can vary from
day to day for sundry reasons. It is also important in alter-
ing the time scale that the patient should not he 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 leis-
urely pace than he did formerly, he should then be per-
mitted to sit and read the paper rather than be compelled
to help in cleaning up and doing dishes. Reasonable ar-
rangments 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 co-
operate 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 table. His meat should be cut for him
in advance, since handling a knife is a rather difficult prob-
lem 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. Pa-
tients 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 blend-
ors and served as thick soups, stews or meat loaf.
MAINTAINING WEIGHT:
It is essential in the care of a patient at home to main-
tain the patient's body weight. Nearly seventy per cent of
our patients show various levels of loss of weight during
thier illness. This is due almost entirely to the inability to
comsume enough calories for their daily needs. Some of it
derives from the failure to complete the meal in the re-
quired time. There is also the difficulty in chewing and
handling the food items themselves. The diet of a parent
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
*Salton Electric Warming Tray. Available in department stores.
meal at supper and, finally, a sixth light meal before lie
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 insti-
tute a more rigid form of high caloric ifitake, possibly add-
ing 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
deficientcies in food intake and calories can also lead to dis-
aster. 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 fall-
ing. Moreover, the loss of tissue substance deprives the
bones of the pelvis and legs of a good deal of natural pad-
ding and protection. Hence, if a fall does occur, the bones
bear the fill 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
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 struc-
ture 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 diffi-
cult 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 dis-
ease 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 recom-
mendations. Buttons, especially small ones, are always dif-
ficult 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 bowl-
ing shoes with upturned toes reduces scuffing and stumb-
ling. 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 itarrow'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 bi-
lateral 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 avail-
able 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 south-
ern 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. Or-
dinary 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, with-
out requiring,, the presence of a physiotherapist. This ap-
paratus 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 mach-
cine will, if used several times a day, prevent this. Eleva-
ting 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 short-
ens the muscles, twists the joints out of shape and progres-
sively 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, shop-
ping 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 pa-
tients, a special bookiet 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 help-
ful means to relax rigid and frozen muscles. This is, how-
ever, often impossible to achieve even once a week, because
the distince to reach a physiotherapist and the cost in-
volved 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 ad-
vanced Parkinsoin's disease. They may require help in get-
ing 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 acci-
dents. Even so, it is advisable to have someone with the pa-
tient 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 pa-
tient with this disease is to keep him contented, wanted
in the family setting, and participating in as many activi-
ties 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 in-
sure 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 se-
cure 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 move-
ments. The stiffness is the problem that produces the most
awkward form of disability. The shaking, however, both-
ers many patients because they are self-conscious and em-
barassed 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, men-
tioning 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 ac-
cept 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 cliairs 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 hal-
lucinations 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 rela-
tive 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 see-
ing 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 correct in-
crease this tendency, the night can become a fearful prob-
lem 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 win-
dows open for night sounds, and making occasional visits
to the patient's room and talking with him. A little imagi-
nation and ingenuity can help to combat this tendency and
render it unnecessary 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 dur-
ing 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 occu-
pationial therapist can prove helpful, since they have great
experience in making suggestions and working out interest-
ing 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, nov-
cls, biographies and history proves satisfying to still others.
The entire program should be geared to keep them occti-
pied 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" ac-
tivities 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 use 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 cap-
sules 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 rela-
tive to pour out the exact amount of medicine in the morn-
ing, 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 dis-
turbances 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 bed-
ridden and those who remain on sofas or in chairs through-
out 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 sleep-
ing without producing undesirable, habit-forming reac-
tions.
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 in-
creasing 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 his illness.
Another helpful publication is PARKINSON's
DISEASE: A GUIDE FOR PATIENT AND FAMILY,
by Roger C. Duvoisin M.D., published by Raven Press.
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This information provided by The Center for Neurologic Study. Please visit us at http://www.cnsonline.org