PARKINSON’S AT HOME
References: Robert S. Schwab, M.D. & Lewis J. Doshay, M.D.
A BETTER UNDERSTANDING
By Linda Kinser, PT, Cert MDT, CMP
EPIDEMIOLOGY
• Approximately 1 million Americans diagnosed with Parkinson’s Disease
• Affects men > woman & Affects white males > other races
• The mean age of onset is 60 years old (but as early as 30 years old)
MOTOR FEATURES
The Motor features include tremor, rigidity, and bradykinesia, postural instability, gait
instability, and fine motor control problems.
Resting Tremor
• Resting Tremor (tremor at rest) is the most classic and visible sign, it subsides
with action (intended movement)
• 70% of these individuals present with resting tremor as their chief complaint
• “Pill-rolling” quality and can affect all four limbs and the head
• Most difficult symptom to treat but the least disabling.
• The resting quality of the tremor allows activities of daily living within some
limitations, tendency to shy away from social activities due to fear of social stigma
and being labeled as ill.
• Stress can intensify tremor, further limiting social life.
Rigidity
• Rigidity is often described as a resistance to passive movement, characterized as
stiffness.
• “Cog Wheeling” Cog Like release of muscle resistance in the arms and legs as the
limb is moved passively.
• Can cause the face to take on a mask like quality, causing a change in facial
expression. The face appears fixed and rigid, and previously recognizable
nonverbal messages are misinterpreted or lost in communication.
Bradykinesis "My brain is sending the message to the body, but the body won't listen.”
• Bradykinesia refers to difficulty with initiating and continuing movement.
• Movements are slowed and are performed with conscious effort.
Postural Instability and Gait Characteristics
Due to the changes with posturing over time there is a distinct change in quality of gait
compromising autonomy and safety. The need for assistive devices may occur to retain
the ability to walk and decrease risk for falls. Common gait characteristics are:
• Slumped Forward Posturing -(forward flexion of the neck, hips, knees, and elbows)
• Shuffled Gait - Rigidity and postural changes, produce a shuffling quality to the
walk pattern with small steps.
• Festinating Gait - occurs when a propulsion disturbance develops (pattern of gait
is uncontrolled from a slow walking pace to running with an inability to stop, unless
grabbing stationary objects such as a door frame. May appear as under the
influence of drugs or alcohol.
On-Off Phenomenon
This phenomenon describes when movement/walking is freely volitional one minute and
then the next minute ambulation ability is "frozen", unable to move, as if someone has
turned off a “go” switch and the feet get stuck. It is unpredictable.
NON-MOTOR FEATURES
Depression
• Research indicates that 20% to 90% of these individuals experience depression
There are two types of Depression with shared clinical features
• "Reactive Depression" develops as a result of becoming demoralized with
the diagnosis of Parkinson’s. This depression is typically resolved with
psychotherapy/counseling to help with acceptance.
• “Endogenous Depression” is the most typical form of depression. It is
caused by a biochemical imbalance in the brain and can be life-threatening
if not treated.
Dementia
• 20% of people with Parkinson’s will become demented.
• It can be defined as an acquired, persistent impairment of intellectual function with
compromise in at least three of the following areas of mental activity: language,
memory, visual spatial skills, emotionality and personality and cognition in the
presence of clear consciousness.
• The retention of long-term memory preserves normal social behavior early in the
disease.
• The severe loss of ability to learn new material and the limitations of short-term
memory result in episodes of frustration that can escalate into agitation.
• May have enough insight to experience a clear sense of loss, thus leaving
patients and families demoralized and dispirited.
DRUG THERAPY
The primary medications used are classified as:
• Anticholinergics
• Antihistamines
• Dopaminergics
• Dopamine Agonists.
Medication is needed when a problem develops with simple activities of daily living or
when embarrassment from tremor or gait disturbances is expressed. The goal is to
maintain a conservative level of medication to maintain mobility. Exercise is
recommended. There are side effects of the medication and a risk in developing a
tolerance to medication usually occurs. Delirium and hallucinations may also occur.
IN THE HOME
More than 90% of all patients with Parkinson's disease live at home with their families.
Understanding, cooperative and adaptive families are those families that cope best with
the disease process. 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, and the home should be arranged to
minimize falls and the complications that may arise from falling.
TRAVELING
Travel is sometimes difficult for people with advanced Parkinson's disease. Help may be
required in getting in and out of automobiles, trains, airplanes, etcetera, but travel on the
whole is very good for them. Companions are recommended. Travel must be cleared by
physician (medical contra-indications). Traveling by automobile is particularly good 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.
DRIVING A CAR
It is advisable to have a companion drive along in case fatigue or difficulties arise.
Evaluation of driving skills by a professional driving instructor may provide a no
threatening avenue to assess auto safety. Family members should be involved in the
evaluation of driving to arrange alternate transportation if driving is found to be unsafe.
SLEEP DISTURBANCE
Those individuals who are kept busy and active during the day 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.
Those individuals 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 are many different types of medicines that aid
sleeping without producing undesirable, habit-forming reactions.
“Sensory Deprivation” can develop, day or night. This develops due to an inadequate
amount of stimulation (remaining confined in a chair in one room for hours at a time with
no light, no sound for 10 – 12 hours at a time). Night time can become a fearful problem
for the entire family. Confusion and hallucinating may occur in the silence and darkness. It
is possible to reduce or eliminate the confusion and hallucination by:
• Keeping a light on at night.
• Playing a radio softly in the background.
• Keeping the windows open for night sounds.
• Making occasional visits to the room and hold conversation.
MORALE
Keeping up morale is important. Family members may need to provide a certain amount
of personal supervision, ensuring a comfortable adaptation to each situation as it occurs.
Allow and encourage continued active participation in activities, family affairs/parties,
decision making, outings, etc. Encourage as much independence as is safe and possible,
short of encountering fatigue, stress, or worry. Prevent or avoid situations that may cause
embarrassment and pity, as these can be devastating to morale.
Consider:
• When playing cards, if shuffling the cards is difficult; shuffle the cards for them to
avoid embarrassment of spilling the cards on the floor.
• Place secure holders on the table, and especially when friends or visitors are
about to avoid spills with glasses of liquid, cups of hot beverage, etc.
FALL PREVENTION TIPS
1. REMOVE ALL LOOSE OR SCATTER RUGS
Carpets, if they are fastened down well, are safe. Doorsills are a common cause of stumbling going
from one room to another. If possible, all doorsills should be removed, particularly those that
traverse 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 doorsills and leave
the space between the rooms flat, and not unsightly, in a few hours.
2. REMOVE ANY SHARP POINTED TABLES/FURNITURE
Sharp or pointed pieces of furniture can be hazardous. These may cause these individuals to
stumble or to hurt themselves seriously if falling onto them occurs. Valuable objects such as lamps,
vases, etc. should be positioned on shelves out of the way of ordinary moving about in the room so
that contact with these objects does not occur.
3. AVOID STAIRS
When choosing the style of your home, the welfare of the person with Parkinson's disease should
be given close consideration. The FIRST LEVEL is the very best place for a person with this
disease. Even the presence of one step in an apartment building leading to the sidewalk can be a
source of danger. Ramps are alright, but stairs often constitute a difficulty. Flights of stairs from one
room to another that are built into some of the modern houses 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.
4. SECURE WALL HANDLES AT ALL DOORS
Install metal or wooden handles on the walls adjacent to doorknobs of all doors. This affords the
individual with increased security in standing, by holding the handle on the wall with one hand, while
pulling the doorknob with the other. Moreover, some doors open all too easily and the individual
may be thrown backward to the floor, if he/she does not have the other hand on a secure support.
5. TAKE ONE TASK AT A TIME & ALLOW FOR MORE TIME
Reasonable flexible time schedules for the day are a necessity. There are intrinsic difficulties of
motor performance of an individual with Parkinson’s disease. One must learn and adapt to doing
only one single act at a time. Working out a proper time schedule will allow for enough time to
complete the tasks or activities without feeling rushed, hurried, relieving any under pressure to
complete in an unreasonable amount of time. This requires great deal of understanding and
cooperation on the part of relatives as well as on the part of themselves.
A great deal more time is required to complete ordinary tasks when only one motor act can be
accomplished at a time. Extra time is needed to allow these individuals to obtain and maintain
comfortable and secure posture, to promote safe balance in avoiding slips or falls.
• It becomes impossible to brush the teeth while simultaneously wiping off the countertop
because one hand ceases function.
• Dressing for those with a moderate degree of involvement with Parkinson's disease may take
three to five times as long as before. It is very important to keep the muscles in action and do
as many ordinary chores independently to maintain independence.
• If it takes 20 minutes before the disease to dress and shave, then allow an hour to an hour
and a quarter.
• 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. Avoiding fatigue is very important.
• Be patient and flexible, some days can be very unpredictable.
MEDICATION TIPS
The family doctor or specialist will give a schedule of medicine. If not alone, a family
member can help keep the schedule accurate by pouring the medicine out of a bottle or
counting out the necessary tablets or capsules during the different times of the day.
TIPS when left alone in the home:
• Use 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 medicine can then be taken at the prescribed time without difficulty.
• Tablets and capsules are even easier to manage, in different boxes, to be taken at
specified hours.
NUTRITION AND SPEECH
Weight should be monitored approximately once a week, and discuss any problems with
your physician. 70% experience various levels of weight loss. This occurs when one
does not consume enough calories for their daily needs. Calorie consumption is ~ 1500 to
2000 calories per day. A consultation with a dietician and speech therapist may be
indicated if difficulty with swallowing impairs ability to maintain needed caloric intake.
It is essential to maintain a healthy body weight for 3 important reasons:
1. Muscle weakness develops in the body especially with standing and walking,
increasing the risk for falling.
2. Loss of muscle bulk deprives the bones of the pelvis and legs of a good deal of
natural padding and protection. The bones bear the full brunt of the blow of a fall
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.
3. Osteoporosis develops 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. The bones become weak increasing the risk for
fractures with even minor falls.
TIPS FOR MEAL TIME
Allow more time for meals. Family members should be encouraged to sit around the table
and carry on conversation, rather than leaving before everyone is finished with the meal.
There are various aids that can make it easier at meal time:
• Since handling a knife is a rather difficult problem, meat should be cut in advance.
• Help keep food warm and palatable over the longer period required for eating by
using an electric warming tray under the plate.
• If some foods are more difficult to manage replace forks with spoons.
• For denture wearers and those who have difficulty chewing hard meats or
vegetables, grind the food up in a blender and serve as thick soups/stews, or serve
softer meat options like meat loaf.
TIPS FOR SPEECH, FACIAL EXPRESSION, AND CHEWING DIFFICULTIES:
• Practice singing and reading aloud with forceful lip movements. Talk into a tape
recorder, if one is available.
• Practice making faces in front of a mirror (see sheet).
• Recite the alphabet and count numbers with exaggerated facial motions.
• Massage your face with vigor when washing and bathing.
• When chewing food, chew hard and move the food around; avoid swallowing large
lumps.
MINIMIZE PHYSICAL BARRIERS – “PROMOTE INDEPENDENCE”
CHAIRS (getting in and out of a chair more easily by):
• If you become glued a few steps before you reach the chair, try this: Don't aim for
the chair but some object past it. Pass the chair as closely as possible and as you
go by it sit down.
• To sit down, bend forward as far as possible and sit down slowly. Get close to the
chair. Do not fall into the chair.
• To get up, move to the edge of the chair, bend forward and push up vigorously
using your arms; try to count 1, 2, 3, GO!
• If you have a favorite armchair, raise the back legs with 4" blocks. This will help
you to get up easily.
• A chair that is slightly tipped forward allows you to get in and out more easily.
• Don't let people drag you up by your arms, but help you by pulling you under your
arms, or with a slight push on your back.
BED (getting in and out of bed more easily by):
• Place 2 – 4 inch blocks under the legs of the head of the bed. This will elevate the
head of the bed, & make it easier for you to sit up and swing the legs off the bed.
• A knotted rope tied to the foot of the bed can help you to pull yourself up.
• To get to a sitting position, shift the body down and rock yourself by vigorously,
throwing your arms and legs toward the side of the bed.
TOILET (managing toilet issues more easily by):
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-erect posture. 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 raised toilet seats are now available in medical supply stores.
• Toilet armrest for getting on and off the toilet.
• Supports in the form of a bar or frame at the side of the toilet prove helpful to the
patient in adjusting his clothes.
BATHTUB (managing in the bathtub more easily by):
• Place a bench, stool or chair inside the tub; have the legs sawed off to tub height.
Sit on the chair and soap yourself. Use shower to rinse, or rubber shower
extension.
• Bathtub grab bars are available. Purchase only those that attach securely.
MINIMIZE PHYSICAL BARRIERS – “PROMOTE INDEPENDENCE” CONT.
CLOTHES (managing clothing more easily)
It is more difficult to manage layers of clothing. If the temperature in the home can be
maintained a little above average, one gets along with fewer clothes (a sport shirt and a
pair of shorts) finding it easier putting clothes on and taking them off.
• Buttons, especially small ones, are always difficult to manage. These can be
replaced by zippers on coats, trousers, shirts and dresses.
• Tying shoelaces may take so much extra time and energy that the one 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 to handle and 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 allow
the individual to be able to put the coat on without help.
EXERCISE
Exercise and activity are the basis of life for the muscles. Muscles that do not move
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, and
later disability. People must understand that muscles are composed of 80 per cent water
and just as running water does not freeze, so moving muscles do not freeze. 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 healthy.
PHYSICAL THERAPY
For advanced and partially disabled individuals, a special exercise programs may be
indicated in order to provide the best exercise options. This may/may not require a
physical therapy consultation. Your physician may wish to limit the intensity of your
physical activity. The most beneficial program should be one that is in establishing a
home exercise program that can be carried out, preferably independently, but may require
care giver assistance by a family member.
TIPS TO MANAGE SWELLING
Ordinary exercise machines can be dangerous. Stiffness of the muscles interferes with
circulation in the legs resulting in SWELLING of the feet.
• Electric Rocking Chair is a home unit exercise chair for the wrists, elbows,
shoulders, hips, knees and ankles. Provides passive flexion and extension to these
muscles and can be 5 – 20 minutes used several times a day. The rocking chair
exercise machine will, if used several times a day, may prevent this.
• Elevating the feet several times a day for a half hour is also helpful.
The stiffness is the problem that produces the most awkward form of disability. Exercises
are as essential and important to do faithfully as is the taking of medication. The following
exercise suggestions are designed to help you maintain muscle power and tone and
prevent deformities of the limbs and spine.
“Just as running water does not freeze, so moving muscles do not freeze.”
TEN BASIC EXERCISES IN MANAGING PARKINSONS
1. Bring the toes up with every step you take. In Parkinson's disease, "you never
make a move", without lifting the toes.
2. Spread the legs (10 inches) when walking or turning, to provide a wide base, a
better stance, and to prevent falling. It may not look "beautiful," but neither does
falling.
3. For greater safety in turning, use small steps, with feet widely separated.
Never cross one leg over the other when turning. Practice walking a few yards
and turn. Walk in the opposite direction and turn. Do fifteen minutes a day.
4. Practice walking into tight corners of a room, to overcome fear of close places.
5. To insure good body balance, practice rapid excursions of the body.
Backward, forward and to the right and left, five minutes, several times a day.
Don't look for a wall when you think you are falling. It may not be there. Your
body will always be there to protect you, if you will practice balance daily.
6. When the legs feel frozen or "glued" to the floor, a lift of the toes eliminates
muscle spasm and the fear of falling. You are free to walk again.
7. Swing the arms freely when walking. It helps to take body weight off the legs,
lessens fatigue, and loosens the arms and shoulders.
8. If getting out of a chair is difficult, rise with "lightning speed," to overcome the
"pull of gravity." Sitting down should be done slow, with body bent sharply
forward, until one touches the seat. Practice this at least a dozen times a day.
9. If the body lists to one side, carry a shopping bag loaded with books or other
weights in the opposite hand to decrease the bend.
10. Any task that is difficult, such as buttoning a shirt /or getting out of bed, if
practiced 20 times it day, becomes easier the 21st time.
These are suggestions to try.
If you experience any compromise to your safety,
stop and consult your physician or physical therapist for advice.
FUNCTIONAL TRAINING FOR TIGHT MUSCLES AND POOR POSTURE
STANDING (Hold onto something secure or use the wall)
1. Stand in front of a wall, facing it about 8" away. Raise arms and reach as high as
possible toward the top of the wall. Lean toward the wall and stretch.
2. With your back to the wall (or facing the wall), alternate raising legs as high as possible
by bending the knee as if marching in place.
3. Holding on to something secure, squat down as far as possible, bending knees; then
come up.
SITTING
1. Sitting in straight-back chair, place your arms behind the chair and bring your shoulders
back as far as possible; raise your head up and look at the ceiling.
2. Sitting In the same chair, grip the ends of a broom or mop stick with both hands, try to
raise it over your head until you get it behind your head. Keep head and shoulders as
erect as possible.
3. Sitting in same chair, place one leg at a time on another chair and press the knee
straight. Keep it there for a few minutes (as tolerated). Try both legs together.
4. Sitting in a chair, raise legs up from the knee alternately, as if stamping your feet.
LYING ON A FIRM BED OR FLOOR (floor only if you are able to get back up)
1. Lie on the floor or bed, flat on your back; try to press your body to the bed as flat as
possible. Make sure your head, shoulders, back, and knees touch the surface.
2. Lie on the floor or bed on your abdomen. Do the following one by one:
• Put your hands behind back and look up to ceiling, trying to raise your chest off
the floor.
• Kick your legs alternately, as if swimming.
• Turn your head from right to left as far as possible.
BETTER BALANCE (hold onto something secure if needed)
1. Stand with hands on hips, feet spread apart:
• Practice marching in place
• Practice raising leg straight out to the rear.
• Practice raising leg out to the side.
• Practice drawing a circle with the leg.
2. Standing with hands at side, feet spread apart:
• Lean forward and back
• Lean to both sides
• Lean in a circular motion and reverse the motion
FUNCTIONAL TRAINING FOR TIGHT MUSCLES AND POOR POSTURE
WALKING
1. When walking, REMEMBER:
• Take as large a step as possible
• Raise your toes as you step forward, hitting ground with your heels
• Keep legs apart and posture straight
• Swing arms and look straight ahead - your feet know where the floor is located
2. Collect a dozen magazines; lay them out in a straight line. Space them so that you can
take as long a step as possible. With your spouse, practice walking around or over the
magazines without stepping on them.
3. For a better arm swing, walk holding a rolled magazine in each hand; keep elbows
straight.
4. Practice walking sideways, backwards, and take big steps.
TURNING
1. When practicing turning:
• Keep feet spread-apart and head high
• Use small steps; rock front side to side
• Raise legs from the knees
2. When turning, if you feel glued to the floor:
• Raise your head, relax back on your heels and raise your toes
• Rock from side to side, bend knees slightly and straighten up and lift your toes
• It sometimes helps if the arms are raised in a sudden short motion
USING YOUR ARMS AND HANDS
1. Keep your fingers busy many times a day.
• Practice buttoning and unbuttoning your clothes
• Practice cutting food and writing
• Squeeze a ball or work with "Silly Putty"
• Tear paper
• Take coins out of the pocket
• Play the piano
2. Always try to dress yourself completely:
• Use shoehorns, elastic laces, or extra-long shoelaces to get a better grip.
• Dress in the most relaxed and comfortable position, sitting or standing, but make
sure you are in a safe position.
3. To keep elbows straight and shoulders loose, install a pulley in doorway:
• Place a chair under it or slightly in front.
• Stretch your arms and shoulders in all directions. By working the pulley when seated, you can get a more vigorous pull.
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Giovannini P, Piccolo 1, et al: Early onset Parkinson's disease. Movement Disorders
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Linda Kinser PT, Cert MDT
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