Caring for loved ones with Parkinson's disease involves providing support with daily tasks, managing medical needs, and offering emotional support as the disease progresses.
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Caring for Loved Ones With Parkinsonâ——s Disease
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Published Jul 11, 2013
Debbie Humphrey from Home Helpers Shares Caring for Loved Ones With
Parkinson s
Disease
Debbie Humphrey from Home Helpers Shares Caring for Loved Ones With
Parkinson s
Disease
Published in Health & Medicine , Education
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Parkinson's disease (PD) is a chronic and progressive movement disorder,
meaning that symptoms continue and worsen over time. Parkinson s involves
the
malfunction and death of vital nerve cells in the brain, called neurons.
Parkinson's primarily affects neurons in deep parts of the brain that
control movement. Some of these dying neurons produce dopamine, a chemical
that sends messages to the part of the brain that controls movement and
coordination. As PD progresses, the amount of dopamine produced in the brain
decreases, leaving a person unable to control movement normally.
http://www.pdf.org/en/about_pd
Nearly one million people in the US are living with Parkinson's disease.
The cause is unknown, and although there is presently no cure, there are
treatment options such as medication and surgery to manage its symptoms.
Approximately 50,000 Americans are diagnosed with Parkinson's disease
each year; however, this number does not reflect the thousands of cases that
go undetected. Experts say that determining an actual count may be impossible
as many people in the early stages of the disease assume their symptoms are
the result of normal aging and do not seek help from a physician. Also,
diagnosis is sometimes difficult and uncertain because other conditions may
produce symptoms of PD and there is no definitive test for the disease. Men
are one and a half times more likely to have Parkinson's than women,
although it s unclear why there is a discrepancy. Incidence of Parkinson s
20. increases with age, but an estimated four percent of people with PD are
diagnosed before the age of 50.
http://www.ninds.nih.gov/disorders/parkinsons_disease/detail_parkinsons_disease.
htm#195683159n
The causes of Parkinson s remain unknown, despite decades of intensive
study.
Many experts think that the disease is caused by a combination of genetic and
environmental factors, which may vary from person to person. Environmental
Theory: Some scientists have suggested that Parkinson's disease may
result from exposure to an environmental toxin or injury. Research has
identified several factors that may be linked to Parkinson s, including
rural
living, well water, manganese and pesticides. It is important to note that a
simple exposure to an environmental toxin is never enough to cause
Parkinson s. http://www.pdf.org/en/genetics__parkinsons_gwinn
Genetic Theory: The vast majority of Parkinson's cases are not directly
inherited. About 15 to 25 percent of people with Parkinson s report having a
relative with the disease. In large population studies, researchers have found
that people with an affected first-degree relative, such as a parent or
sibling, have a four to nine percent higher chance of developing PD, as
compared to the general population. So, if a person s parent has PD, his or
her chances of developing the disease are slightly higher than the risk among
the general population. http://www.pdf.org/en/genetics__parkinsons_gwinn
The specific group of symptoms that an individual experiences varies from
person to person. Primary motor signs of Parkinson s disease include:
TREMOR,
BRADYKINESIA, RIGIDITY, POSTURAL INSTABILITY. Resting Tremor: In the early
stages of the disease, about 70 percent of people experience a slight tremor
in the hand or foot on one side of the body, or less commonly in the jaw or
face. The tremor consists of a shaking movement, and usually appears when a
person's muscles are relaxed, hence the term "resting tremor."
The affected body part trembles when it is not performing an action.
Typically, the fingers or hand will tremble when folded in the lap, or when
the arm is held loosely at the side. The tremor usually ceases when a person
begins an action. Some people with PD have noticed that they can stop a hand
tremor by keeping the hand in motion or in a flexed grip. The tremor of PD can
be made worse by stress or excitement, sometimes attracting unwanted notice.
The tremor often spreads to the other side of the body as the disease
progresses, but usually remains most apparent on the initially affected side.
Although tremor is the most noticeable outward sign of the disease, not all
people with PD will develop tremors. Bradykinesia: Bradykinesia means  slow
movement.  A defining feature of Parkinson s, bradykinesia also describes
a
general reduction of spontaneous movement, which can give the appearance of
abnormal stillness and a decrease in facial expressivity. Bradykinesia causes
difficulty with repetitive movements, such as finger tapping. Due to
bradykinesia, a person with Parkinson s may have difficulty performing
everyday functions, such as buttoning a shirt, cutting food or brushing his or
her teeth. People who experience bradykinesia may walk with short, shuffling
steps. The reduction in movement and the limited range of movement caused by
bradykinesia can affect a person s speech, which may become quieter and less
distinct as Parkinson s progresses. Rigidity: Rigidity causes stiffness and
inflexibility of the limbs, neck and trunk. Muscles normally stretch when they
move, and then relax when they are at rest. In Parkinson s rigidity, the
muscle tone of an affected limb is always stiff and does not relax, sometimes
21. contributing to a decreased range of motion. People with PD most commonly
experience tightness of the neck, shoulder and leg. A person with rigidity and
bradykinesia tends to not swing his or her arms when walking. Rigidity can be
uncomfortable or even painful. Postural Instability : One of the most
important signs of Parkinson s is postural instability, a tendency to be
unstable when standing upright. A person with postural instability has lost
some of the reflexes needed for maintaining an upright posture, and may topple
backwards if jostled even slightly. Some develop a dangerous tendency to sway
backwards when rising from a chair, standing or turning. This problem is
called retropulsion and may result in a backwards fall. People with balance
problems may have particular difficulty when pivoting or making turns or quick
movements.
http://www.ninds.nih.gov/disorders/parkinsons_disease/detail_parkinsons_disease.
htm#195683159s
Though not all people with Parkinson s will experience all of
these…additional
secondary motor symptoms include: Freezing   which is stopping suddenly
while
walking Stooped posture, a tendency to lean forward Impaired fine motor
dexterity and motor coordination Impaired gross motor coordination Decreased
arm swing Speech problems, such as softness of voice or slurred speech caused
by lack of muscle control AND Difficulty swallowing & chewing   also due
to muscles working less efficiently http://www.pdf.org/symptoms_secondary
In addition to motor symptoms, most people with Parkinson s experience
nonmotor symptoms, those that do not involve movement, coordination, physical
tasks or mobility. While a person s family and friends may not be able to
see
them, these so-called  invisible  symptoms can actually be more
troublesome
for some people than the motor impairments of PD. Early Symptoms Many
researchers believe that non-motor symptoms may precede motor symptoms   and
a
Parkinson s diagnosis   by years. The most recognizable early symptoms
include: loss of sense of smell sleep disorder - difficulty staying asleep at
night, restless sleep, nightmares and emotional dreams, and drowsiness or
sudden sleep onset during the day mood disorders - Emotional changes such as
fear and anxiety - Some people become fearful and insecure. Perhaps they fear
they cannot cope with new situations. They may not want to travel, go to
parties, or socialize with friends. Some lose their motivation and become
dependent on family members. Others may become irritable or
uncharacteristically pessimistic. Depression - This is a common problem and
may appear early in the course of the disease, even before other symptoms are
noticed. Fortunately, depression usually can be successfully treated with
antidepressant medications. If a person has one or more of these symptoms, it
does not necessarily mean that individual will develop Parkinson s, but
these
markers are helping scientists to better understand the disease process. Other
Nonmotor Symptoms fatigue and loss of energy - The unusual demands of living
with PD often lead to problems with fatigue, especially late in the day.
Fatigue may be associated with depression or sleep disorders, but it also may
result from muscle stress or from overdoing activity when the person feels
well. skin problems   The skin may become very oily or very dry. These
problems are also the result of an improperly functioning autonomic nervous
system. Standard treatments for skin problems can help. cognitive issues -
Some, but not all, people may develop memory problems and slow thinking. In
some of these cases, cognitive problems become more severe, leading to a
condition called Parkinson's dementia late in the course of the disease.
22. This dementia may affect memory, social judgment, language, reasoning, or
other mental skills.
http://www.ninds.nih.gov/disorders/parkinsons_disease/detail_parkinsons_disease.
htm#195683159d
One of the keys to caregiving is to be educated on Parkinson s Disease. PD
is
complicated. Symptoms will change and often worsen over time. Understanding
that this will occur can help prepare for the future. Keep in mind that PD and
its treatment can create a situation of  more questions than answers.  Not
every symptom of the disease can be managed by medical treatment. A better
understanding of Parkinson s will result in more effective coping, proper
long-term management and a more successful therapeutic outcome.
Another KEY TO CAREGIVING - Understand that PD is unpredictable. Symptoms of
severity can vary throughout the day. Proper medical management is key to
keeping the most predictable response to treatment. It is important to
remember, most people with PD are performing at their personal best. Report
abrupt changes in your loved one s ability to move. It s suggested by
medical
professionals, that any abrupt changes in a Parkinson s patient should be
recorded in a journal or diary, so that members of the treatment team can all
be aware of the patient s current condition. Home Helpers Caregiver Training
Curriculum
A 3 rd key to caregiving is managing the disease. Since there is an increased
risk of injuries in people who are physically disabled, accomplishing daily
tasks should be made as easy and safe as possible. Obtain any adaptive
equipment or clothing needed. You may using specially designed eating utensils
or choosing clothing with Velcro rather than buttons. Document any noticeable
changes in your loved one. Just like it s recommended to keep a journal of
abrupt changes in your loved ones  ability to move….include in the journal
any
other noticeable changes. Modify any areas you need to within the home to
promote safety. You may suggest customizing seating, toilets, tubs, &
showers or installing grab bars where appropriate . Build relationships -
Build relationships with everyone that is part of the  team    other
family
members, doctors, caregivers, and friends. This assures that your loved one is
getting the best treatment possible and that everyone is on the same page. The
goal is to maximize the independence. The physical and mental tolls of the
disease make it all the more important that the person feels they have control
over as much of their life as possible. Home Helpers Caregiver Training
Curriculum
Caring for a loved one with Parkinson s can sometimes be frustrating. Family
caregivers need to develop a support system for themselves. You must also
realize you are not super human. Set realistic, attainable goals, and then
strive to attain them. Don t expect to tackle every problem right away.
Avoid
acting on emotions with unconstructive behaviors. Having an understanding of
Parkinson s and what your loved one is facing will likely help to eliminate
frustration and allow you to be more patient with them. Talk to someone about
what you are feeling. Join a support group so that you can share mutual
experiences, learn together, and even receive support in coping with a common
problem. Adopt some survival strategies. Remember that what works one day may
not work another day. Home Helpers Caregiver Training Curriculum
23. Let s move on to some basic caregiving tips: Learn when to help and when not
to. Also, it s important to allow time for your loved one to do things for
themselves when possible   even if it does take longer. Good communication
is
critical! Communication is more than just speaking; gestures, a look, a shrug,
the written word are all ways of conveying meaning. Make the most of the
communication skills that your loved one has. Some communication hints: Ask
them to repeat what they ve said, if you do not understand it Ask them to
speak more slowly. Echo their phrases to help slow them down and to show
understanding. Be aware that talking may be frustrating and tiring for them.
Give them time to respond. Allow them to finish their thought. Do not try to
anticipate what you think they want to say. Watch for signs of depression .
According to the Parkinson s Disease Foundation, up to 60% of Parkinson s
patients experience mild or moderate depressive symptoms. It can be difficult
to diagnose as some of the symptoms of depression are similar to those of PD,
such as low energy, insomnia, excessive sleep, weight loss etc. Encourage
Exercise, as appropriate   Exercise maintains joint mobility, reduces
rigidity
and joint stiffness, prevents muscle weakness and wasting, improves endurance
and functional ability, improves circulation, and most importantly, it
enhances mood and general well-being. Newest research suggests that exercise
may influence the progression of Parkinson s disease. Be certain to consult
a
physician, physical therapist or occupational therapist before beginning any
exercise plan. Home Helpers Caregiver Training Curriculum
One of the secondary motor symptoms we mentioned earlier is freezing. Many
people with Parkinson s describe freezing as times when their feet get
 glued
to the ground . They might not be able to move forward again for several
seconds or minutes. They might feel like their feet are  frozen  or stuck,
but
that the top half of their body is still able to move. They might freeze when
they start to walk or when they try to turn around. But freezing does not just
affect walking. Some people freeze during speaking or during a repetitive
movement like writing or brushing their teeth. While experts do not know what
causes freezing, it often happens when something interrupts or gets in the way
of a sequence of movement. Some techniques you can try with your loved one:
Management Method: • STOP: calm yourself. • THINK: what do you want to do?
•
PLAN: how are you going to do it? • DO: complete the task or movement.
Weight
Shift Method: • When they freeze, remind them to not try and move forward
right away. Instead, have them gently move most of their weight to one leg
(this is what normally happens when you go to walk). A shift of weight to
their supporting leg will let them then step forward with the opposite leg. â€
¢
They may be able to re-start walking again by gently rocking their head and
shoulders from side to side. This rocking can help them shift body weight to
the supporting leg. • Try walking on the spot/in place, to keep the stepping
rhythm going, when stopping to open a door, for example. Using counting, sound
or a rhythm can help   so you may like to try some of the ideas below: •
Decide which foot you are going to step with first, then step forward after
saying something like  one, two, three, step  or  ready, steady, go .
You can
say this aloud or silently to yourself, or it could be said by someone who is
with you when you freeze. Whichever you choose, a strong, clear voice will
encourage you to get started again. • Count your steps from one to 10 (start
24. counting again when you get to 10), or chanting,  one, two, one, two, one,
two  or  left, right, left, right, left, right . • Try re-starting
your
walking by saying a trigger word or phrase such as  step ,  big step 
or  go .
Encourage listening to music with a good rhythm on an MP3 player as you walk
to prevent freezing. Floor strips If they tend to freeze in the same places at
home and the previous methods described here don t work, you could try using
floor strips to help in overcoming freezing trouble spots. These are strips of
tape stuck to the floor. They can help in doorways, corners, hallways, or in
other narrow areas. 1. Take some sticky tape, such as masking or electrical
insulating tape, in a color that contrasts with the floor or carpet. 2. Cut
the tape to lengths of around 40cm to 55cm. 3. Stick them firmly to the floor
or carpet, around 35cm to 50cm apart. 4. Where there is a corner, place the
strips in a fan shape around the bend. 5. If the floor color or texture
changes through a doorway, put a strip on the joint. If the flooring is the
same on each side of the doorway, put strips the same distance on each side of
the threshold. When walking over the strips, don t worry where feet are
placed. Step on or between the lines to suit yourself. These are simply
methods that can give  cues  to trigger one to move again once they ve
frozen.
http://www.parkinsons.org.uk/PDF/FS63_FreezinginParkinsons.pdf
Difficulty swallowing is another symptom. Some ways to help cope with this:
Make sure they are sitting upright and help them tilt their head forward. Cut
food into small bites and encourage them to take small sips of liquid. If they
tire while eating, serve smaller meals more often. Try serving well-cooked,
smoother-textured food and more tender cuts of meat. You can also chop food in
a food processor. See that your loved one eats a balanced diet and consumes
enough to maintain proper weight. A good, nutritious, balanced diet is the key
to good health in patients with PD, as it is with the general population. One
point that came up repeatedly during the research was the importance of
caregivers for Parkinson s patients knowing the Heimlich maneuver which, or
course, could save a choking person s life. Home Helpers Caregiver Training
Curriculum
Tremors can be bothersome and are among the most early and common symptoms. It
may help to hold the affected limb in certain positions or have the person
hold on to something for stability. They may also try holding the upper arm
against the body. If tremors occur or worsen at the end or beginning of a
dosing period, this may indicate the person is experiencing  wear off.  As
a
caregiver, you should communicate what you are seeing. The physician may need
to be consulted as a change in medication may be needed   such as the dosage
or time of day the dosage is given. This can greatly help to reduce tremors.
Certain lifestyle changes also may help make living with Parkinson's
disease easier. Encourage your loved one to eat a nutritionally balanced diet
that contains plenty of fruits, vegetables and whole grains. A balanced diet
also provides nutrients, such as omega-3 fatty acids, that may be beneficial
for people with PD. Reduce sugar intake! A diet with lots of sugar can have
too many calories and too few nutrients. Reduce how much salt and sodium you
eat to help reduce your loved one s risk of high blood pressure. Help them
to
maintain or improve their weight to reduce chances of having high blood
pressure, heart disease, stroke, certain cancers and most common types of
diabetes. People with PD often lose weight without meaning to, due to nausea,
loss of appetite, depression, and slowed movement. Unplanned weight loss
25. together with malnutrition can lead to an weakened immune system, muscle
wasting, loss of vital nutrients and risk for other diseases.
The incidence and severity of PD symptoms varies from day to day, even from
one time of day to another. It takes skill and patience to know when to assist
with a task, and when to simply allow the person more time to do the task
independently. It also takes time and ongoing education to learn the multiple
symptoms of PD and somewhat complicated medication regimes that offer the most
symptom relief and improve quality of life. Caregivers must closely observe
the Person with Parkinson s (PWP) over time to detect and respond helpfully
to
subtle changes in motor (how we move) and mood (how we think and feel).
Providing physical care to someone with advanced PD, such as re-positioning or
help with bathing, can be exhausting and even cause injury to the caregiver.
One source of information - National Parkinson s Foundation - has a plethora
of resources in regard to specific safety tips. You can find information on
bedroom, bathroom, kitchen safety…how to maintain a healthy diet, exercise
tips, etc.
http://www.parkinson.org/Parkinson-s-Disease/Living-Well/Caring-for-Someone-
with-PD-101/What-are-the-special-challenges-of-caring-for-some
Transcript
1. Caring for Loved Ones With Parkinson s Disease
2. Caring for Loved Ones With Parkinson s Disease Objectives • Overview
of
Parkinson s Disease • Symptoms of PD • Keys to Caregiving • Caregiving
Tips
The information contained on these pages is of a general nature and intended
to provide a public information service. The information is not intended to be
a substitute for consulting with a medical care provider.
3. What is it? •Chronic and progressive movement disorder •Involves the
malfunction/death of vital nerve cells in the brain The information contained
on these pages is of a general nature and intended to provide a public
information service. The information is not intended to be a substitute for
consulting with a medical care provider.
4. Who s affected? •Nearly one million people in the US live with PD
•Approximately 50,000 Americans are diagnosed each year •More likely to
affect
men •Incidence increases with age The information contained on these pages
is
of a general nature and intended to provide a public information service. The
information is not intended to be a substitute for consulting with a medical
care provider.
5. What s the cause? •Environmental Factors  Environmental toxin
 Traumatic
brain injury The information contained on these pages is of a general nature
and intended to provide a public information service. The information is not
intended to be a substitute for consulting with a medical care provider.
6. What s the cause? •Genetic Factors  Not directly inherited The
information contained on these pages is of a general nature and intended to
provide a public information service. The information is not intended to be a
substitute for consulting with a medical care provider.
7. What are the symptoms? Primary Motor Symptoms •tremor - hands, arms,
legs, jaw and face •bradykinesia - slowness of movement •rigidity -
stiffness
of the limbs and trunk •postural instability - impaired balance/coordination
The information contained on these pages is of a general nature and intended
26. to provide a public information service. The information is not intended to be
a substitute for consulting with a medical care provider.
8. What are the symptoms? Secondary Motor Symptoms •Freezing •Stooped
posture •Speech problems •Difficulty swallowing The information contained
on
these pages is of a general nature and intended to provide a public
information service. The information is not intended to be a substitute for
consulting with a medical care provider.
9. What are the symptoms? Non-Motor Symptoms •Loss of sense of smell â€
¢Sleep
disorder •Mood disorder The information contained on these pages is of a
general nature and intended to provide a public information service. The
information is not intended to be a substitute for consulting with a medical
care provider.
10. Keys to Caregiving •Be educated •Understand PD is unpredictable â€
¢Manage
the disease •Acknowledge feelings The information contained on these pages
is
of a general nature and intended to provide a public information service. The
information is not intended to be a substitute for consulting with a medical
care provider.
11. Keys to Caregiving Educate Yourself •PD is complicated •Symptoms and
challenges vary greatly •It is a progressive illness The information
contained
on these pages is of a general nature and intended to provide a public
information service. The information is not intended to be a substitute for
consulting with a medical care provider.
12. Keys to Caregiving Understand PD is Unpredictable •Symptoms of
severity
can vary throughout the day. •Proper medical management is key to keeping
the
most predictable response to treatment. •Report abrupt changes in a
person s
ability to move. The information contained on these pages is of a general
nature and intended to provide a public information service. The information
is not intended to be a substitute for consulting with a medical care
provider.
13. Keys to Caregiving Managing the Disease •Obtain any adaptive equipment
or clothing needed. •Document any noticeable changes in your loved one.
•Modify any areas you need to within the home to promote safety. The
information contained on these pages is of a general nature and intended to
provide a public information service. The information is not intended to be a
substitute for consulting with a medical care provider.
14. Keys to Caregiving Acknowledge your Feelings •Avoid acting on emotions
with unconstructive behaviors. •Talk to someone about what you are feeling.
•Join support groups. The information contained on these pages is of a
general
nature and intended to provide a public information service. The information
is not intended to be a substitute for consulting with a medical care
provider.
15. Basic Caregiving Tips •Learn when to help and when not to. •Allow
time
for your loved one to do things for themselves, even if it takes longer. â€
¢Good
communication is very important. •Watch for signs of depression. â€
¢Encourage
exercise. The information contained on these pages is of a general nature and
intended to provide a public information service. The information is not
intended to be a substitute for consulting with a medical care provider.
16. How to Cope with Freezing •Management method (STOP, THINK, PLAN, DO)
27. •Weight shift method •Sound and vision methods •Floor strips The
information
contained on these pages is of a general nature and intended to provide a
public information service. The information is not intended to be a substitute
for consulting with a medical care provider.
17. How to Cope with Difficulty Swallowing •Sit person upright and tilt
head
forward. •Cut food into small bites and encourage small sips of liquid. â€
¢If
they tire while eating, serve smaller meals more often. •Serve well-cooked,
smoother textured food and more tender cuts of meat. The information contained
on these pages is of a general nature and intended to provide a public
information service. The information is not intended to be a substitute for
consulting with a medical care provider.
18. How to Cope with Tremors •Hold the affected limb in a variety of
positions •Have your loved one hold on to something •Press the upper arm
against the body The information contained on these pages is of a general
nature and intended to provide a public information service. The information
is not intended to be a substitute for consulting with a medical care
provider.
19. General Meal Planning Tips •Eat a nutritionally balanced diet (plenty
of
fruits, vegetables, and whole grains) •Reduce sugar intake •Reduce sodium
intake The information contained on these pages is of a general nature and
intended to provide a public information service. The information is not
intended to be a substitute for consulting with a medical care provider.
20. Special Challenges of Caring for Someone with PD •Incidence and
severity
of PD symptoms varies •Takes time and ongoing education to learn the
multiple
symptoms of PD and somewhat complicated medication regimes The information
contained on these pages is of a general nature and intended to provide a
public information service. The information is not intended to be a substitute
for consulting with a medical care provider.
21. Resources •National Institute of Neurological Disorders and Stroke
(www.ninds.nih.gov) •National Parkinson s Foundation (www.parkinson.org)
•Parkinson s Disease Foundation (www.pdf.org) •Home Helpers Caregiver
Training
Curriculum The information contained on these pages is of a general nature and
intended to provide a public information service. The information is not
intended to be a substitute for consulting with a medical care provider.
22. Questions?
23. Home Helpers:Home Helpers: Debbie Humphrey, PresidentDebbie Humphrey,
President www.TarponSpringsHomeCare.cowww.TarponSpringsHomeCare.co mm
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