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<% SELECT Case request("issue") Case "diabetes" %>
Help for Patients and Caregivers : Diabetes
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What is type 2 diabetes?
Diabetes is a disease in which blood glucose levels are above normal.
People with diabetes have problems converting food to energy.
After a meal, food is broken down into a sugar called glucose,
which is carried by the blood to cells throughout the body. Cells
use the hormone insulin, made in the pancreas, to help them
process blood glucose into energy.
People develop type 2 diabetes because the cells in the muscles,
liver, and fat do not use insulin properly. Eventually, the pancreas
cannot make enough insulin for the body’s needs. As a result, the
amount of glucose in the blood increases while the cells are starved
of energy. Over the years, high blood glucose damages nerves and
blood vessels, leading to complications such as heart disease, stroke,
blindness, kidney disease, nerve problems, gum infections, and
amputation.
How can type 2 diabetes be prevented?
Although people with diabetes can prevent or delay complications
by keeping blood glucose levels close to normal, preventing or
delaying the development of type 2 diabetes in the first place is
even better. The results of a major federally
funded study, the Diabetes Prevention
Program (DPP), show how to do so.
This study of 3,234 people at high risk
for diabetes showed that moderate diet
and exercise resulting in a 5- to 7-percent
weight loss can delay and possibly prevent
type 2 diabetes.
Study participants were overweight and had
higher than normal levels of blood glucose,
a condition called pre-diabetes (impaired glucose
tolerance). Both pre-diabetes and obesity
are strong risk factors for type 2 diabetes.
Am I at Risk for Type 2 Diabetes?
Because of the high risk among some minority groups, about half
of the DPP participants were African American, American Indian,
Asian American, Pacific Islander, or Hispanic American/Latino.
The DPP tested two approaches to preventing diabetes: a healthy
eating and exercise program (lifestyle changes), and the diabetes
drug metformin. People in the lifestyle modification group exercised
about 30 minutes a day 5 days a week (usually by walking)
and lowered their intake of fat and calories. Those who took the
diabetes drug metformin received standard information on exercise
and diet. A third group received only standard information on
exercise and diet.
The results showed that people in the lifestyle modification group
reduced their risk of getting type 2 diabetes by 58 percent. Average
weight loss in the first year of the study was 15 pounds. Lifestyle
modification was even more effective in those 60 and older. They
reduced their risk by 71 percent. People receiving metformin
reduced their risk by 31 percent.
What are the signs and symptoms
of type 2 diabetes?
Many people have no signs or symptoms. Symptoms can also be so
mild that you might not even notice them. Nearly six million people
in the United States have type 2 diabetes and do not know it.
Here is what to look for:
- increased thirst
- increased hunger
- fatigue
- increased urination, especially at night
- weight loss
- blurred vision
- sores that do not heal
Types of Diabetes
The three main kinds of diabetes are type 1, type 2, and
gestational diabetes.
Type 1 Diabetes
Type 1 diabetes, formerly called juvenile diabetes or insulindependent
diabetes, is usually first diagnosed in children,
teenagers, or young adults. In this form of diabetes, the
beta cells of the pancreas no longer make insulin because
the body’s immune system has attacked and destroyed them.
Treatment for type 1 diabetes includes taking insulin shots or
using an insulin pump, making wise food choices, exercising
regularly, taking aspirin daily (for some), and controlling
blood pressure and cholesterol.
Type 2 Diabetes
Type 2 diabetes, formerly called adult-onset or noninsulindependent
diabetes, is the most common form of diabetes.
People can develop type 2 diabetes at any age, even during
childhood. This form of diabetes usually begins with insulin
resistance, a condition in which fat, muscle, and liver cells do
not use insulin properly. At first, the pancreas keeps up with
the added demand by producing more insulin. In time, however,
it loses the ability to secrete enough insulin in response
to meals. Being overweight and inactive increases the
chances of developing type 2 diabetes. Treatment includes
taking diabetes medicines, making wise food choices, exercising
regularly, taking aspirin daily, and controlling blood
pressure and cholesterol.
Gestational Diabetes
Some women develop gestational diabetes during the late
stages of pregnancy. Although this form of diabetes usually
goes away after the baby is born, a woman who has had
it is more likely to develop type 2 diabetes later in life.
Gestational diabetes is caused by the hormones of
pregnancy or a shortage of insulin.
Am I at Risk for Type 2 Diabetes?
Sometimes people have symptoms but do not suspect diabetes.
They delay scheduling a checkup because they do not feel sick.
Many people do not find out they have the disease until they have
diabetes complications, such as blurry vision or heart trouble. It is
important to find out early if you have diabetes because treatment
can prevent damage to the body from diabetes.
Should I be tested for diabetes?
Anyone 45 years old or older should consider getting tested for
diabetes. If you are 45 or older and overweight (see BMI chart on
pages 10 and 11), it is strongly recommended that you get tested.
If you are younger than 45, overweight, and have one or more of
the risk factors on page 5, you should consider testing. Ask your
doctor for a fasting blood glucose test or an oral glucose tolerance
test. Your doctor will tell you if you have normal blood glucose,
pre-diabetes, or diabetes.
What does it mean to have pre-diabetes?
It means you are at risk for getting type 2 diabetes and heart disease.
The good news is if you have pre-diabetes you can reduce the
risk of getting diabetes and even return to normal blood glucose
levels. With modest weight loss and moderate physical activity,
you can delay or prevent type 2 diabetes. If your blood
glucose is higher than normal but lower than the diabetes range
(what we now call pre-diabetes), have your blood glucose checked
in 1 to 2 years.
Doing My Part: Getting Started
Making big changes in your life is hard, especially if you are faced
with more than one change. You can make it easier by taking these
steps:
- Make a plan to change behavior.
- Decide exactly what you will do and when you will do it.
- Plan what you need to get ready.
- Think about what might prevent you from reaching your
goals.
- Find family and friends who will support and encourage you.
- Decide how you will reward yourself when you do what you
have planned.
Your doctor, a dietitian, or a counselor can help you make a plan.
Here are some of the areas you may wish to change to reduce your
risk of diabetes.
Reach and Maintain a Reasonable Body Weight
Your weight affects your health in many ways. Being overweight
can keep your body from making and using insulin properly. It can
also cause high blood pressure. The DPP showed that losing even a
few pounds can help reduce your risk of developing type 2 diabetes
because it helps your body use insulin more effectively. In the DPP,
people who lost between 5 and 7 percent of their body weight significantly
reduced their risk of type 2 diabetes. For example, if you
weigh 200 pounds, losing only 10 pounds could make a difference.
Body mass index (BMI) is a measure of body weight relative to
height. You can use BMI to see whether you are underweight,
normal weight, overweight, or obese. Click here to view the BMI table.
- Find your height in the left-hand column.
- Move across in the same row to the number closest to your
weight.
- The number at the top of that column is your BMI. Check
the word above your BMI to see whether you are normal
weight, overweight, or obese.
If you are overweight or obese, choose sensible ways to get in
shape:
- Avoid crash diets. Instead, eat less of the foods you usually
have. Limit the amount of fat you eat.
- Increase your physical activity. Aim for at least 30 minutes
of exercise most days of the week.
- Set a reasonable weight-loss goal, such as losing 1 pound a
week. Aim for a long-term goal of losing 5 to 7 percent of
your total body weight.
Make Wise Food Choices Most of the Time
What you eat has a big impact on your health. By making wise food
choices, you can help control your body weight, blood pressure, and
cholesterol.
- Take a hard look at the serving sizes of the foods you eat.
Reduce serving sizes of main courses (such as meat), desserts,
and foods high in fat. Increase the amount of fruits and
vegetables.
- Limit your fat intake to about 25 percent of your total calories.
For example, if your food choices add up to about 2,000 calories
a day, try to eat no more than 56 grams of fat. Your doctor or a
dietitian can help you figure out how much fat to have. You can
check food labels for fat content too.
- You may also wish to reduce the number of calories you have
each day. People in the DPP lifestyle modification group lowered
their daily calorie total by an average of about 450 calories.
Your doctor or dietitian can help you with a meal plan that
emphasizes weight loss.
- Keep a food and exercise log. Write down what you eat, how
much you exercise—anything that helps keep you on track.
- When you meet your goal, reward yourself with a nonfood item
or activity, like watching a movie.
Be Physically Active Every Day
Regular exercise tackles several risk factors at once. It helps you
lose weight, keeps your cholesterol and blood pressure under
control, and helps your body use insulin. People in the DPP who
were physically active for 30 minutes a day 5 days a week reduced
their risk of type 2 diabetes. Many chose brisk walking for exercise.
If you are not very active, you should start slowly, talking with your
doctor first about what kinds of exercise would be safe for you.
Make a plan to increase your activity level toward the goal of being
active at least 30 minutes a day most days of the week. Choose activities you enjoy. Here are some ways to work extra
activity into your daily routine:
- Take the stairs rather than an elevator or escalator.
- Park at the far end of the lot and walk.
- Get off the bus a few stops early and walk the rest of the way.
- Walk or bicycle instead of drive whenever you can.
Take Your Prescribed Medications
Some people need medication to help control their blood pressure
or cholesterol levels. If you do, take your medicines as directed.
Ask your doctor whether there are any medicines you can take to
prevent type 2 diabetes.
Hope Through Research
We now know that many people can prevent type 2 diabetes
through weight loss, regular exercise, and lowering their intake of
fat and calories. Researchers are intensively studying the genetic
and environmental factors that underlie the susceptibility to obesity,
pre-diabetes, and diabetes. As they learn more about the molecular
events that lead to diabetes, they will develop ways to prevent and
cure the different stages of this disease. People with diabetes and
those at risk for it now have easier access to clinical trials that test
promising new approaches to treatment and prevention. For information
about current studies, see http://ClinicalTrials.gov.
Diabetes - Staying
healthy from
head to toe
If you have diabetes, controlling your
sugar is always the first priority. A healthy
diet, regular exercise and good medical
care can help.
When your blood sugar is under
control you’re also at lower risk for
complications from diabetes. High
blood sugar levels can damage your
nerves and blood vessels.
When levels are too high it can cause
damage and disease in your eyes, teeth
and feet. That’s why these parts of your
body need special care, according to
the American Diabetes Association.
Eyes. To keep your eyes healthy,
get an eye exam every year. You
should also go to the doctor if:
- Your vision gets blurry.
- You see double.
- Your eyes hurt.
- You see spots.
Teeth and gums. Have your teeth
cleaned and checked every 6 months.
Brush your teeth, front and back,
twice daily with a soft brush. Floss
once a day. See your dentist if you
notice any problems with your
gums or teeth.
Feet. Wash and dry your feet
every day. Use lotion to keep the
skin from drying out.
Check every day for sores, blisters,
calluses or swelling. Don’t try to treat
calluses or corns at home. See your
doctor.
Cut toenails straight across. Look
for sharp edges—they can cut your
Check shoes inside and out for
sharp objects before you put them
on. Pebbles, nails or even a torn
shoe lining could cause problems.
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<% Case "cerebral_palsy"%>
Help for Patients and Caregivers : Cerebral Palsy
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What is Cerebral Palsy?
Cerebral palsy is an umbrella-like term used to describe a group of chronic disorders impairing control of movement that appear in the first few years of life and generally do not worsen over time. The disorders are caused by faulty development of or damage to motor areas in the brain that disrupts the brain's ability to control movement and posture. Symptoms of cerebral palsy include difficulty with fine motor tasks (such as writing or using scissors), difficulty maintaining balance or walking, involuntary movements. The symptoms differ from person to person and may change over time. Some people with cerebral palsy are also affected by other medical disorders, including seizures or mental impairment, but cerebral palsy does not always cause profound handicap. Early signs of cerebral palsy usually appear before 3 years of age. Infants with cerebral palsy are frequently slow to reach developmental milestones such as learning to roll over, sit, crawl, smile, or walk. Cerebral palsy may be congenital or acquired after birth. Several of the causes of cerebral palsy that have been identified through research are preventable or treatable: head injury, jaundice, Rh incompatibility, and rubella (German measles). Doctors diagnose cerebral palsy by testing motor skills and reflexes, looking into medical history, and employing a variety of specialized tests. Although its symptoms may change over time, cerebral palsy by definition is not progressive, so if a patient shows increased impairment, the problem may be something other than cerebral palsy.
What are the different types of Cerebral Palsy?
Cerebral palsy may be classified by the type of movement problem (such as spastic or athetoid cerebral palsy) or by the body parts involved (hemiplegia, diplegia, and quadriplegia). Spasticity refers to the inability of a muscle to relax, while athetosis refers to an inability to control the movement of a muscle. Infants who at first are hypotonic wherein they are very floppy may later develop spasticity. Hemiplegia is cerebral palsy that involves one arm and one leg on the same side of the body, whereas with diplegia the primary involvement is both legs. Quadriplegia refers to a pattern involving all four extremities as well as trunk and neck muscles. Another frequently used classification is ataxia, which refers to balance and coordination problems. The motor disability of a child with CP varies greatly from one child to another; thus generalizations about children with cerebral palsy can only have meaning within the context of the subgroups described above. For this reason, subgroups will be used in this book whenever treatment and outcome expectations are discussed. Most professionals who care for children with cerebral palsy understand these diagnoses and use them to communicate about a child's condition.
As noted above, a useful method for making subdivisions is determined by which parts of the body are involved. Although almost all children with cerebral palsy can be classified as having hemiplegia, diplegia, or quadriplegia, there are significant overlaps which have led to the use of additional terms, some of which are very confusing. To avoid confusion, most of the discussion in his book will be limited to the use of these three terms. Occasionally such terms as paraplegia, double hemiplegia, triplegia, and pentaplegia may occasionally be encountered by the reader; these classifications are also based on the parts of the body involved. The dominant type of movement or muscle coordination problem is the other method by which children are subdivided and classified to assist in communicating about the problems of cerebral palsy. The component which seems to be causing the most problem is often used as the categorizing term. For example, the child with spastic diplegia has mostly spastic muscle problems, and most of the involvement is in the legs, but the child may also have a smaller component of athetosis and balance problems. The child with athetoid quadriplegia, on the other hand, would have involvement of both arms and legs, primarily with athetoid muscle problems, but such a child often has some ataxia and spasticity as well. Generally a child with quadriplegia is a child who is not walking independently. The reader may be familiar with other terms used to define specific problems of movement or muscle function terms such as: dystonia, tremor, ballismus, and rigidity. The words severe, moderate, and mild are also often used in combination with both anatomic and motor function classification terms (severe spastic diplegia, for example), but these qualifying words do not have any specific meaning. They are subjective words and their meaning varies depending on the person who is using them.
What causes Cerebral Palsy?
We do not know the cause of most cases of cerebral palsy. That is, we are unable to determine what caused cerebral palsy in most children who have congenital CP. We do know that the child who is at highest risk for developing CP is the premature, very small baby who does not cry in the first five minutes after delivery, who needs to be on a ventilator for over four weeks, and who has bleeding in his brain. Babies who have congenital malformations in systems such as the heart, kidneys, or spine are also more likely to develop CP, probably because they also have malformations in the brain. Seizures in a newborn also increase the risk of CP. There is no combination of factors which always results in an abnormally functioning individual. That is, even the small premature infant has a better than 90 percent chance of not having cerebral palsy. There are a surprising number of babies who have very stormy courses in the newborn period and go on to do very well. In contrast, some infants who have rather benign beginnings are eventually found to have severe mental retardation or learning disabilities.
Is there any treatment?
There is no standard therapy that works for all patients. Drugs can be used to control seizures and muscle spasms, special braces can compensate for muscle imbalance. Surgery, mechanical aids to help overcome impairments, counseling for emotional and psychological needs, and physical, occupational, speech, and behavioral therapy may be employed
What is the prognosis?
At this time, cerebral palsy cannot be cured, but due to medical research, many patients can enjoy near-normal lives if their neurological problems are properly managed.
For more information on Cerebral Palsy visit:
-
The National Institute of Neurological Disorders & Stroke
- Cerebral Palsy - A Guide for Care |
<% Case "muscular_dystrophy"%>
Help for Patients and Caregivers : Muscular Dystrophy
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What is Muscular Dystrophy?
The muscular dystrophies (MD) are a group of genetic diseases characterized
by progressive weakness and degeneration of the skeletal muscles that
control movement. There are many forms of muscular dystrophy, some noticeable
at birth (congenital muscular dystrophy), others in adolescence (Becker
MD), but the 3 most common types are Duchenne, facioscapulohumeral, and
myotonic. These three types differ in terms of pattern of inheritance,
age of onset, rate of progression, and distribution of weakness.
Duchenne MD primarily affects boys and is the result
of mutations in the gene that regulates dystrophin - a protein involved
in maintaining the integrity of muscle fiber. Onset is between 3-5 years
and progresses rapidly. Most boys become unable to walk at 12, and by
20 have to use a respirator to breathe.
Facioscapulohumeral MD appears in adolescence and
causes progressive weakness in facial muscles and certain muscles in the
arms and legs. It progresses slowly and can vary in symptoms from mild
to disabling.
Myotonic MD varies in the age of onset and is characterized
by myotonia (prolonged muscle spasm) in the fingers and facial muscles;
a floppy-footed, high-stepping gait; cataracts; cardiac abnormalities;
and endocrine disturbances. Individuals with myotonic MD have long faces
and drooping eyelids; men have frontal baldness
What are the forms of muscular dystrophy?
The major forms of muscular dystrophy are myotonic, Duchenne, Becker,
limb-girdle, facioscapulohumeral, congenital, oculopharyngeal, distal
and Emery-Dreifuss.
Some of these names are based on the locations of affected muscles. For
example, "facioscapulohumeral" refers to the muscles that move
the face, scapula (shoulder blade) and humerus (upper arm bone). Others
are based on the type of muscle problem involved ("myotonic"
means difficulty relaxing muscles), the age of onset of the disease (as
in "congenital," or birth-onset, dystrophy), or the doctors
who first described the disease (Duchenne, Becker, Emery and Dreifuss
are doctors' names).
As the root causes (gene defects) of the muscular dystrophies are discovered,
doctors are beginning to change their thinking about how to classify some
of the dystrophies. In some cases, a type of muscular dystrophy that looked
like it might be one disease has been found to be several different diseases,
caused by several different gene defects. This is true for limb-girdle,
congenital and distal dystrophies. In other cases, diseases that looked
different have been found to be one disease with variations in severity.
This is the case with Duchenne and Becker dystrophies.
How do the forms of muscular dystrophy
differ?
They differ in severity, age of onset, muscles first and most often affected,
the rate at which symptoms progress, and the way the disorders are inherited.
What causes muscular dystrophy?
Flaws in muscle protein genes cause muscular dystrophies. Each cell in
our bodies contains tens of thousands of genes. Each gene is a string
of the chemical DNA and is the "code" for a protein. (Another
way to think of a gene is that it's the "instructions" or "recipe"
for a protein.) If the recipe for a protein is wrong, the protein is made
wrong or in the wrong amount or sometimes not at all..
Are muscular dystrophies always
inherited?
There is no specific treatment for any of the forms of MD. Respiratory
therapy, physical therapy to prevent painful muscle contractures, orthopedic
appliances used for support, and corrective orthopedic surgery may be
needed to improve the quality of life in some cases. Cardiac abnormalities
may require a pacemaker. Corticosteroids such as prednisone can slow the
rate of muscle deterioration in patients with Duchenne MD but causes side
effects. Myotonia is usually treated with medications such as mexiletine,
phenytoin, or quinine.
Is muscular dystrophy contagious?
No. Genetic diseases aren't contagious.
Is a family medical history important?
Yes. Because the muscular dystrophies can be inherited, it's important
for the doctor to know if anyone in the family ever had a similar disorder.
How is muscular dystrophy diagnosed?
A doctor makes a diagnosis by evaluating the patient's medical history
and by performing a thorough physical examination. Essential to diagnosis
are details about when weakness first appeared, its severity, and which
muscles are affected. Diagnostic tests may also be used to help the doctor
distinguish between different forms of muscular dystrophy, or between
muscular dystrophy and other disorders of muscle or nerve.
What are some common diagnostic tests?
Studying a small piece of muscle tissue taken from an individual during
a muscle biopsy can sometimes tell a physician whether a disorder
is muscular dystrophy and which form of the disease it is.
In Duchenne and Becker muscular dystrophy, a muscle
protein called dystrophin is either missing, deficient or abnormally
formed. This protein can be examined in the muscle sample.
The reason for the flawed or deficient muscle protein is a flawed gene
for dystrophin. A test that involves looking at this gene -- DNA testing
-- can be done to diagnose or rule out Duchenne or Becker muscular dystrophies.
Another diagnostic test is the electromyogram (EMG). To do this
test, small electrodes are put into the muscle, which allows the doctor
to measure the electrical impulses coming from the muscle. The test is
uncomfortable.
Another test often performed measures nerve conduction velocity
(NCV). During this test, electrical impulses are sent down the nerves
of the arms and legs. By measuring the speed of these impulses with electrodes
placed on the skin, the doctor can determine whether the nerves are functioning
normally. This test is also uncomfortable.
Blood enzyme tests are helpful because degenerating muscles
become "leaky." They leak enzymes (proteins that speed chemical
reactions), which can then be detected in the blood. The presence of these
enzymes in the blood at higher than normal levels may be a sign of muscular
dystrophy. One such enzyme is creatine kinase, or CK.The CK level
is elevated in many forms of muscular dystrophy, some forms resulting
in a higher level than others.
Is there any treatment?
There is no specific treatment for any of the forms of MD. Respiratory
therapy, physical therapy to prevent painful muscle contractures, orthopedic
appliances used for support, and corrective orthopedic surgery may be
needed to improve the quality of life in some cases. Cardiac abnormalities
may require a pacemaker. Corticosteroids such as prednisone can slow the
rate of muscle deterioration in patients with Duchenne MD but causes side
effects. Myotonia is usually treated with medications such as mexiletine,
phenytoin, or quinine.
For more information on Muscular Dystrophy visit:
- National
Institute of Neurological Disorders and Stroke
- Muscular
Dystrophy Association
- Muscular
Dystrophy Association FAQ |
<% Case "plagiocephaly"%>
Help for Patients and Caregivers : Plagiocephaly
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What is Plagiocephaly?
Plagiocephaly is a “malformation of the head marked by an oblique slant to the main axis of the skull”. The Term has also been applied to any condition characterized by a persistent flatten spot on the back or one side of the child’s head.
What causes Plagiocephaly?
Up until about one year of age, the bones of your baby's head are very
thin and flexible. This makes your baby's head very soft and easy to mold.
For the first few months of life your baby will not be strong enough to
roll over on his own. If your baby prefers to look in one direction or
if your baby is always on his back, part of his skull may become flat.
This flattening is caused by constant pressure on one part of the skull.
This is called positional plagiocephaly. Your baby may also develop a
flat spot if he spends long periods of time in a car seat or reclining
seat.
View a more detailed diagram and description by clicking
here.
You may start to see flattening when your baby is only four to six weeks
old.
What is the diagnosis?
The diagnosis begins with an examination by a pediatrician, pediatric
neurosurgeon or craniofacial surgeon. A primary objective of the examination
is to rule out craniosynostosis (a condition that requires surgical correction).
The initial examination involves questions about gestation and birth,
in utero position, neck tightness and post-natal positioning (for example,
sleeping position). The physical examination includes inspection of the
infant's head and may involve palpation (carefully feeling) of the child's
skull for suture ridges and soft spots (the fontanelles) as well as checking
for neck tightness and other deformities. The physician may also request
x-rays or computerized tomography (a CAT scan, a series of photographic
images of the skull). These images provide the most reliable method for
diagnosing premature suture fusion (craniosynostosis). In addition, the
physician may make (or order) a series of measurements from the child's
face and head [more on cranial anthropometry]. These measurements will
be used to assess severity and monitor treatment.
Is there any treatment?
To prevent your baby from developing a flattened skull, change his position
often. Put your baby on his tummy to play several times a day. Use a firm
play surface such as a carpeted floor or an activity mat on the floor.
"Tummy time" will also help your baby:
- Develop early control of his head
- Strengthen the muscles in the upper body
- Learn to roll over
- Reach for objects
- Learn to crawl
You can also put your baby on his side to play. To keep your baby on
his side, put a firm rolled-up towel or blanket behind his back.
Treatment for deformational
plagiocephaly
Specific treatment will be determined by your child's physician based
on the severity of the deformational plagiocephaly. Frequent rotation
of your child's head would be the first recommendation once your infant
has been diagnosed with plagiocephaly. Alternating your infant's sleep
position from the back to the sides, and not putting infants on their
backs when they are awake may also help prevent and treat positional plagiocephaly.
Some cases do not require any treatment and the condition may resolve
spontaneously when the infant begins to sit.
If the deformity is moderate to severe and a trial of re-positioning
has failed, your child's physician may recommend a cranial remodeling
band or helmet.
How does helmeting correct deformational plagiocephaly?
Helmets are usually made of an outer hard shell with a foam lining. Gentle,
persistent pressures are applied to capture the natural growth of an infant's
head, while inhibiting growth in the prominent areas and allowing for
growth in the flat regions. As the head grows, adjustments are made frequently.
The helmet essentially provides a tight, round space for the head to grow
into.
How long will my child wear a helmet?
The average treatment with a helmet is usually three to six months, depending
on the age of the infant and the severity of the condition. Careful and
frequent monitoring is required. Helmets must be prescribed by a licensed
physician with craniofacial experience.
For more information on Plagiocephaly visit:
- Lucile
Packard Children's Hospital at Stanford
- Geneva
Foundation for Medical Education and Research
- About
Kids Health
- Plagiocephaly.org |
<% Case "scoliosis"%>
Help for Patients and Caregivers : Scoliosis
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What is Scoliosis?
Scoliosis is not a disease – it is a descriptive term. All spines
have curves. Some curvature in the neck, upper trunk and lower trunk is
normal. Humans need these spinal curves to help the upper body maintain
proper balance and alignment over the pelvis. However, when there are
abnormal side-to-side (lateral) curves in the spinal column, we refer
to this as scoliosis.
What to look for?
There are several different "warning signs" to look for to
help determine if you or someone you love has scoliosis. Should you notice
any one or more of these signs, you should schedule an exam with a doctor.
- Shoulders are different heights – one shoulder blade is
more prominent than the other
- Head is not centered directly above the pelvis
- Appearance of a raised, prominent hip
- Rib cages are at different heights
- Uneven waist
- Changes in look or texture of skin overlying the spine (dimples,
hairy patches, color changes)
- Leaning of entire body to one side
What causes Scoliosis?
Doctors define scoliosis in a particular person based on a number of
factors related to the curve, including:
- Shape. Aside from appearing like the letter
C or S, a curve may occur in two or three dimensions. A nonstructural
curve is a side-to-side curve. A structural curve involves twisting of
the spine and occurs in three dimensions.
- Location. The curve may occur in the upper back
area (thoracic), the lower back area (lumbar) or in both areas (thoracolumbar).
- Direction. The curve can bend to the left or to
the right.
- Angle. Doctors figure out the angle of the curve
using the vertebra at the apex of the curve as the starting point.
- Cause. About 80 percent of scoliosis cases are
idiopathic, meaning the cause is unknown.
Many theories have been proposed regarding the causes of scoliosis.
They include connective tissue disorders, hormonal imbalance and abnormality
in the nervous system.
Scoliosis runs in families and may involve genetic (hereditary) factors.
But researchers haven't identified the gene or genes that may cause scoliosis.
Doctors also recognize that spinal cord and brainstem abnormalities play
a role in some cases of scoliosis.
Is there any treatment?
There are three basic types of treatments for scoliosis: observation,
orthopaedic bracing, or surgery.
Observation is appropriate for small curves, curves
that are at low risk of progression, and those with a natural history
that is favorable at the completion of growth. These decisions are based
on the expected natural history of a given curve. For example, if your
child is diagnosed with a curve of 25 to 40 degrees and has completed
growth (i.e., boys older than 17, girls older than 15), then observation
is appropriate. Statistically, these curves are at low risk of progression
and are not likely to cause problems in adulthood. Follow-up x-ray once
per year for several years would then confirm that the curve is not progressing
after completion of growth. As an adult, an x-ray every five years, or
if there are symptoms, is sufficient.
Orthopaedic braces are used to prevent further spinal
deformity in children with curve magnitudes within the range of 25 to
40 degrees. If these children already have curvatures of these magnitudes
and still have a substantial amount of skeletal growth left, then bracing
is a viable option. It is important to note, however, that the intent
of bracing is to prevent further deformity – it is not to correct
the existing curvature or to make the curve disappear.
Surgery is an option used primarily for severe scoliosis
(curves greater than 45 degrees) or for curves that do not respond to
bracing. There are two primary goals for surgery: to stop a curve from
progressing during adult life and to diminish spinal deformity.
Until the last few decades, patients undergoing scoliosis surgery endured
intensive surgery, treatment and casting, as well as months of slow recuperation.
Since that time, spinal surgery pioneers such as Paul Harrington, Yves
Paul Cotrel and Jean Dubousset have made great strides in improving the
techniques and instruments used in surgery and post-operative care for
patients with scoliosis.
There are different techniques and methods used today for scoliosis
surgery. The most frequently performed surgery for adolescent idiopathic
scoliosis involves posterior spinal fusion with instrumentation and bone
grafting. This kind of surgery is performed through the patient's back
while the patient lies on his or her stomach. Two common instrumentation
techniques are called Cotrel-Dubousset (CD®) instrumentation (rod
rotation technique) and COLORADO™ instrumentation (translation technique).
During these types of surgery, the surgeon attaches a metal rod to each
side of the patient's spine by using hooks attached to the vertebral bodies.
Then, the surgeon fuses the spine with a piece of bone from the patient's
hip (a bone graft). The bone grows in between the vertebrae and holds
them together and straight. This process is called spinal fusion. The
metal rods attached to the spine ensure that the backbone remains straight
while the spinal fusion takes place.
The operation usually takes several hours. With recent advances in technology,
most people with idiopathic scoliosis are released within a week of surgery
and do not require post-operative bracing. Most patients are able to return
to school or work in two to four weeks after the surgery and are able
to resume all pre-operative activities within four to six months.
Another surgery option for scoliosis is an anterior approach, which
means that the surgery is conducted through the chest walls instead of
entering through the patient's back. The patient lies on his or her side
during the surgery. During this procedure, the surgeon makes incisions
in the patient's side, deflates the lung and removes a rib in order to
reach the spine. This approach allows the surgeon to operate higher up
in the spine than through posterior approaches, and studies have shown
favorable results with this type of surgery. Video-assisted thoracoscopic
surgery allows surgeons to enhance their vision of the spine and to conduct
a less invasive surgery than with an open procedure. The anterior spinal
approach has several advantages: better cosmetic results, quicker patient
rehabilitation, improved spine mobilization, and fusion of fewer segments.
Most patients require bracing for several months after this surgery.
What is the prognosis?
At this time, cerebral palsy cannot be cured, but due to medical research, many patients can enjoy near-normal lives if their neurological problems are properly managed.
For more information on Scoliosis visit:
- Mayo
Clinic
- www.iscoliosis.com
|
<% Case "spinal_cord_injury"%>
Help for Patients and Caregivers : Spinal Cord Injury
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What is Spinal Cord Injury?
Spinal Cord Injury (SCI) is damage to the spinal cord that results in
a loss of function such as mobility or feeling. Frequent causes of damage
are trauma (car accident, gunshot, falls, etc.) or disease (polio, spina
bifida, Friedreich's Ataxia, etc.). The spinal cord does not have to be
severed in order for a loss of functioning to occur. In fact, in most
people with SCI, the spinal cord is intact, but the damage to it results
in loss of functioning. SCI is very different from back injuries such
as ruptured disks, spinal stenosis or pinched
nerves.
A person can "break their back or neck" yet not sustain a
spinal cord injury if only the bones around the spinal cord (the vertebrae)
are damaged, but the spinal cord is not affected. In these situations,
the individual may not experience paralysis after the bones are stabilized.
What is the Spinal Cord and the Vertebra?
The spinal cord is about 18 inches long and extends from the base of
the brain, down the middle of the back, to about the waist. The nerves
that lie within the spinal cord are upper motor neurons (UMNs) and their
function is to carry the messages back and forth from the brain to the
spinal nerves along the spinal tract. The spinal nerves that branch out
from the spinal cord to the other parts of the body are called lower motor
neurons (LMNs). These spinal nerves exit and enter at each vertebral level
and communicate with specific areas of the body. The sensory portions
of the LMN carry messages about sensation from the skin and other body
parts and organs to the brain. The motor portions of the LMN send messages
from the brain to the various body parts to initiate actions such as muscle
movement.
The spinal cord is the major bundle of nerves that carry nerve impulses
to and from the brain to the rest of the body. The brain and the spinal
cord constitute the Central Nervous System. Motor and sensory nerves outside
the central nervous system constitute the Peripheral Nervous System, and
another diffuse system of nerves that control involuntary functions such
as blood pressure and temperature regulation are the Sympathetic and Parasympathetic
Nervous Systems.
The spinal cord is surrounded by rings of bone called vertebra. These
bones constitute the spinal column (back bones). In general, the higher
in the spinal column the injury occurs, the more dysfunction a person
will experience. The vertebra are named according to their location. The
eight vertebra in the neck are called the Cervical Vertebra. The top vertebra
is called C-1, the next is C-2, etc. Cervical SCI's usually cause loss
of function in the arms and legs, resulting in quadriplegia. The twelve
vertebra in the chest are called the Thoracic Vertebra. The first thoracic
vertebra, T-1, is the vertebra where the top rib attaches.
Injuries in the thoracic region usually affect the chest and the legs
and result in paraplegia. The vertebra in the lower back between the thoracic
vertebra, where the ribs attach, and the pelvis (hip bone), are the Lumbar
Vertebra. The sacral vertebra run from the Pelvis to the end of the spinal
column. Injuries to the five Lumbar vertebra (L-1 thru L-5) and similarly
to the five Sacral Vertebra (S-1 thru S-5) generally result in some loss
of functioning in the hips and legs.
What are the effects of SCI? The effects of SCI depend on the type of
injury and the level of the injury. SCI can be divided into two types
of injury - complete and incomplete. A complete injury means that there
is no function below the level of the injury; no sensation and no voluntary
movement. Both sides of the body are equally affected. An incomplete injury
means that there is some functioning below the primary level of the injury.
A person with an incomplete injury may be able to move one limb more than
another, may be able to feel parts of the body that cannot be moved, or
may have more functioning on one side of the body than the other. With
the advances in acute treatment of SCI, incomplete injuries are becoming
more common.
The level of injury is very helpful in predicting what parts of the body
might be affected by paralysis and loss of function. Remember that in
incomplete injuries there will be some variation in these prognoses.
Cervical (neck) injuries usually result in quadriplegia. Injuries above
the C-4 level may require a ventilator for the person to breathe. C-5
injuries often result in shoulder and biceps control, but no control at
the wrist or hand. C-6 injuries generally yield wrist control, but no
hand function. Individuals with C-7 and T-1 injuries can straighten their
arms but still may have dexterity problems with the hand and fingers.
Injuries at the thoracic level and below result in paraplegia, with the
hands not affected. At T-1 to T-8 there is most often control of the hands,
but poor trunk control as the result of lack of abdominal muscle control.
Lower T-injuries (T-9 to T-12) allow good truck control and good abdominal
muscle control. Sitting balance is very good. Lumbar and Sacral injuries
yield decreasing control of the hip flexors and legs.
Besides a loss of sensation or motor functioning, individuals with SCI
also experience other changes. For example, they may experience dysfunction
of the bowel and bladder,. Sexual functioning is frequently with SCI may
have their fertility affected, while women's fertility is generally not
affected. Very high injuries (C-1, C-2) can result in a loss of many involuntary
functions including the ability to breathe, necessitating breathing aids
such as mechanical ventilators or diaphragmatic pacemakers. Other effects
of SCI may include low blood pressure, inability to regulate blood pressure
effectively, reduced control of body temperature, inability to sweat below
the level of injury, and chronic pain.
What is Spinal Stenosis?
The spinal canal is like a tunnel which runs up and down the human spine.
This canal sits directly behind the bony blocks which make up the spine
(vertebrae) and contains the nerves (spinal cord and nerve roots) running
from the brain to all areas of the body
When something causes a narrowing of this canal then the nerves can become
irritated or squeezed. This can lead to a variety of symptoms ranging
from tingling, numbness, and weakness to severe pain and paralysis. Common
conditions which can narrow the spinal canal include a herniated disc
(often called a slipped disc), fracture of the spine, tumor, infection
and degeneration. A set of symptoms related to narrowing of the spinal
canal seen with aging and degeneration is called spinal stenosis. The
symptoms of spinal stenosis most commonly include a sensation of heaviness,
weakness and pain with walking or prolonged standing. At rest these symptoms
usually disappear. These symptoms are related to the irritation of the
nerves in the spinal canal which is worsened with standing or walking
due to mechanical compression or stretching of the nerves. Patients often
complain of a gradual decrease in their ability to walk, requiring more
frequent stops to rest their legs. The treatment for spinal stenosis is
dependant on the severity of symptoms. Generally, aerobic activities like
walking combined with a guided exercise program and weight loss (in overweight
patients) is recommended first.
When there is no relief, some specialists recommend injection treatments
although the effectiveness of this is limited. Surgery is indicated when
symptoms are severe, progressive and a specific area of narrowing in the
spinal canal has been discovered. The surgical procedure is aimed at freeing
up the nerves in the canal by removing pieces of bone and thickened tissues
such as the ligaments. A spinal fusion may also be necessary to stabilize
the spine
The spine consists of a series of bone blocks (vertebral bodies) which
are separated from one another by discs of soft tissue. Within the structure
of the spine sits a tunnel called the spinal canal. This tunnel contains
the neurologic structures including the spinal cord and nerve roots. Although
there is some free space between the neurologic structures and the edges
of the spinal canal, this space can be reduced by many different conditions
including injury to the spine. The canal is surrounded by bone and ligaments
and therefore can not expand if the spinal cord or nerves require more
room. Therefore, if anything begins to narrow the spinal canal, there
is risk for irritation or injury of the spinal cord or nerves. Conditions
which can lead to narrowing of the spinal canal include infection, tumors,
trauma, herniated disc, arthritis and degeneration.
Spinal stenosis refers to the condition of neurologic problems associated
with narrowing of the spinal canal due to degenerative changes in the
spine. Arthritis of the small joints in the spine (facets) as well as
thickening of ligaments and formation of bony spurs can all lead to gradual
squeezing and irritation of neurologic structures. This process is usually
gradual and can lead to symptoms such as pain with walking, a decreased
endurance for physical activities, heaviness in the legs, tingling sensations,
tightness and numbness in the legs with activity, and often associated
low back pains.
Treatment for spinal stenosis ranges from physical therapy to epidural
injections and finally surgery in certain cases. Since patients affected
by spinal stenosis are usually elderly, treatment must carefully consider
not only the disease in the spine but also the risks and benefits of treatment
in each individual. Although therapy and steroid injections into the affected
area of the spine can offer good relief in some patients, there are people
who will only get temporary relief if at all. In patients who have failed
non-operative treatment, surgery can sometimes be considered. Prior to
designing a treatment plan for any individual, careful diagnosis must
be made. This will often involve tests such as an MRI, CT scan, or myelogram
and plain X-rays. In those patients who are candidates for surgery, the
goal is to free up the constricted regions of the spinal canal to ensure
freeing the affected neurologic structures. Occasionally, in order to
stabilize a degenerated part of the spine, a fusion will be performed.
This involves laying down of bone over an area of the spine so that a
solid block is created where there was previously arthritis with pain
and an unstable spine.
Surgery for spinal stenosis has a high success rate in patients carefully
selected for this procedure. It remains a useful approach in treatment
when other options have been exhausted and after careful review of risks
and benefits with the patient.
What are the effects of SCI?
The effects of SCI depend on the type of injury and the level of the
injury. SCI can be divided into two types of injury - complete and incomplete.
A complete injury means that there is no function below the level of the
injury; no sensation and no voluntary movement. Both sides of the body
are equally affected. An incomplete injury means that there is some functioning
below the primary level of the injury. A person with an incomplete injury
may be able to move one limb more than another, may be able to feel parts
of the body that cannot be moved, or may have more functioning on one
side of the body than the other. With the advances in acute treatment
of SCI, incomplete injuries are becoming more common.
The level of injury is very helpful in predicting what parts of the
body might be affected by paralysis and loss of function. Remember that
in incomplete injuries there will be some variation in these prognoses.
Cervical (neck) injuries usually result in quadriplegia. Injuries above
the C-4 level may require a ventilator for the person to breathe. C-5
injuries often result in shoulder and biceps control, but no control at
the wrist or hand. C-6 injuries generally yield wrist control, but no
hand function. Individuals with C-7 and T-1 injuries can straighten their
arms but still may have dexterity problems with the hand and fingers.
Injuries at the thoracic level and below result in paraplegia, with the
hands not affected. At T-1 to T-8 there is most often control of the hands,
but poor trunk control as the result of lack of abdominal muscle control.
Lower T-injuries (T-9 to T-12) allow good truck control and good abdominal
muscle control. Sitting balance is very good. Lumbar and Sacral injuries
yield decreasing control of the hip flexors and legs.
Besides a loss of sensation or motor functioning, individuals with SCI
also experience other changes. For example, they may experience dysfunction
of the bowel and bladder,. Sexual functioning is frequently with SCI may
have their fertility affected, while women's fertility is generally not
affected. Very high injuries (C-1, C-2) can result in a loss of many involuntary
functions including the ability to breathe, necessitating breathing aids
such as mechanical ventilators or diaphragmatic pacemakers. Other effects
of SCI may include low blood pressure, inability to regulate blood pressure
effectively, reduced control of body temperature, inability to sweat below
the level of injury, and chronic pain
How many people have SCI?
Approximately 450,000 people live with SCI in the US. There are about
10,000 new SCI's every year; the majority of them (82%) involve males
between the ages of 16-30. These injuries result from motor vehicle accidents
(36%), violence (28.9%), or falls (21.2%).Quadriplegia is slightly more
common than paraplegia.
For more information on Spinal Cord Injury visit:
- Foundation
for Spinal Cord Injury Prevention, Care and Cure
- Spinal Cord Injury
Resource Center |
<% Case "vascular_diseases"%>
Help for Patients and Caregivers : Vascular Disease
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What is Vascular Disease?
The vascular system is the network of blood vessels that circulate blood
to and from the heart and lungs. Vascular diseases are very common, especially
as people age. Many people have these diseases and don’t know it,
because they rarely cause symptoms in the early stages. People with risk
factors or any signs or symptoms of vascular disease, should be evaluated
by a physician. Untreated vascular disease can lead to serious health
problems, such as tissue death and gangrene requiring amputation or other
surgery; chronic disability and pain; and weakened blood vessels that
may rupture without warning. Deadly complications can result, including
stroke (a clogged or narrowed blood vessel cuts the supply of blood to
the brain), and pulmonary embolism (a blood clot breaks loose and travels
to the heart and lungs).
What are the symptoms
of Vascular Disease?
What are the Symptoms of Vein Disease?
 |
| Swelling and discoloration of the leg is a sign of Deep Vein Thrombosis |
There may be no symptoms of venous disease caused by blood clots until
the clot grows large enough to block the flow of blood through the vein.
Symptoms may then come on suddenly:
- Pain
- Sudden swelling in the affected limb
- Enlargement of the superficial veins
- Reddish-blue discoloration
- Skin that is warm to the touch
What are the symptoms of Pulmonary Embolism?
- A sudden feeling of apprehension
- Shortness of breath
- Sharp chest pain
- Rapid pulse
- Sweating
- Cough with bloody sputum
- Fainting
If you experience the sudden onset of any of these symptoms,
contact your doctor or seek emergency treatment immediately!
Varicose veins , also called "varicoceles," result when the
valves that control the flow of blood in and out of veins fail to work
properly and the pull of gravity causes blood to pool in the legs or elsewhere.
Varicoceles in the scrotum may cause infertility in men. Varicoceles in
the veins of the ovaries may cause chronic pelvic pain in some women.
When valves fail in the legs, the superficial veins become enlarged
and twisted, where they appear as twisted, dark blue vessels just under
the skin’s surface. Smaller varicose veins are sometimes called
spider veins. Obesity, pregnancy, constriction of the veins with garters
or tight clothing, and an inherited tendency are among the contributing
causes of varicose veins. Usually, there are no symptoms. Varicose veins
are diagnosed by physical examination.
Women between the ages of 30 and 70 are most often affected by Varicose
Veins. In the United States, 10 percent of men and 20 percent of women
have varicose or spider veins. Treatment usually is not required. While
most treatment is sought for cosmetic reasons – to improve the appearance
of the veins in the legs – some varicose veins are painful and require
treatment for medical reasons.
Symptoms of Varicose Veins
Most varicose veins have no symptoms other than the appearance of purplish,
knotted veins on the surface of the skin. A physician should be consulted
and treatment may be required if there is:
- Pain or heaviness in the leg, feet and ankles,
- Swelling,
- Sores or ulcers on the skin, or
- Severe bleeding if the vein is injured.
Phlebitis is an inflammation of a vein that can be due to bacterial
infection, injury or unknown causes. Thrombophlebitis is inflammation
that results from the formation of a blood clot in an arm or leg vein.
It can occur in a superficial vein near the skin surface or in a deep
vein. Pain and inflammation are the most common symptoms. Unfortunately,
in the case of thrombophlebitis in the deep veins (see deep vein thrombosis)
there may be no symptoms unless the clot travels to the lungs, resulting
in a life-threatening pulmonary embolism.
Venous stasis disease also is caused by defective values in the veins,
but it is far more serious than varicose veins. If a damaged valve does
not close completely, pooled blood can build up in the veins causing pain,
swelling and tissue damage that may lead to painful sores or ulcers. Chronic
venous stasis disease can result in devastating disfigurement, disability
and a lifetime of treatments and hospital stays. Fortunately, early diagnosis
and treatment can avoid these long-term effects.
Diagnosing Vascular Disease?
Diagnosing Venous Disease and Pulmonary Embolism
Venous disease is diagnosed using one or more of the following techniques:
 |
| Ultrasound is a technique in which a "transducer" (a hand held device about the size of a computer mouse) is moved over the skin and harmless sound waves "bounce" back signals that are computerized to create an image. The technique is painless and has no known risk. Here, a "colorized" ultrasound image highlights the blood vessels. |
Duplex or Doppler Ultrasound – This non-invasive technique
uses ultrasound to "see" clots or other abnormalities in the
blood vessels.
CT Scan (Computed Tomography) is similar to an X-ray except
the images are computerized to appear as a series of slides. When viewed
together, the slices provide a three-dimensional image. Sometimes a special
dye, or contrast agent, is injected or swallowed before the exam to highlight
the images.
Venography is a type of X-ray (called angiography) in which
a thin, flexible tube, or catheter, is threaded into the blood vessels.
A local anesthetic is given to numb the skin where the catheter is inserted,
and X-rays are used to guide the catheter. A contrast agent, or dye, is
injected through the catheter to highlight the blood vessel and call attention
to any abnormalities. This procedure is performed by an interventional
radiologist – a specialist who diagnoses and treats many vascular
diseases and other conditions without surgery.
Magnetic Resonance Angiography (MRA) is a noninvasive exam in
which a magnetic resonance (MR) scanner uses harmless but powerful magnetic
fields and radio waves to create detailed images of the blood vessels.
Diagnosing Pulmonary Embolism
V/Q Scan (sometimes called a V/P or ventilation/perfusion scan)
is a nuclear medicine test in which short-acting radioactive particles
are injected through a vein or breathed into the lungs. If there are areas
of the lung that do not “take up” the particles, it is an
indication that there may be a blood clot. Computed tomography (CT), chest
X-rays or venography also may be used to diagnose blood clots in the lung.
What Causes Vascular
Disease?
Risk Factors that increase the chances of venous disease include:
- A family history.
- Increasing age that results in a loss of elasticity in the veins
and their valves
- Pregnancy
- Illness or injury
- Prolonged periods of inactivity – sitting, standing or bed
rest.
- Hypertension, diabetes, high cholesterol
- Other conditions that affect the health of the cardiovascular system
- Smoking
- Obesity
Preventing
Vascular Disease
The best way to prevent vascular disease is to live a “heart healthy”
lifestyle – don’t smoke; eat nutritious, low fat foods; exercise;
control risk factors and maintain a healthy weight.
Life style changes. The single most effective steps you can take to prevent
vascular disease are to quit smoking and control high blood pressure,
high cholesterol, diabetes and other factors that contribute to vascular
disease. Regular exercise, eating a balanced diet and maintaining a healthy
weight also are important.
For more information on Vascular Disease visit:
- Vascular Disease Foundation
- National
Heart, Lung, and Blood Institute
- American
Heart Association
- Society
Of Interventional Radiology |
<%
Case Else
End SELECT
%>
|
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10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don’t delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
5. There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
6.Trust your instincts. Most of the time they’ll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.
Tips for Family Caregivers from Doctors
- Write questions down so you won’t forget them
- Be clear about what you want to say to the doctor. Try not to ramble.
- If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
- Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
- Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
- Recognize that not all questions have answers—especially those beginning with “why.”
- Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
- Appreciate what the doctor is doing to help and say thank you from time to time.
Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is “yes,” you’re not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.
What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:
- Gathering information from healthcare providers;
- An assessment of your care recipient and the home environment;
- Research into available public and/or private services and resources to meet your loved one’s needs; and
- Ongoing communication between all parties to keep information up to date and services appropriate and effective.
Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one’s health and safety.
Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you’ll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control — a goal well worth working toward.
Educate yourself on the nature of the disease or disability with which you’re dealing. Reliable information is available from the health agency that deals with your loved one’s condition and the National Institutes of Health. When using the Internet, stick with wellknown medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.
Write down your observations of the present situation including:
- Your loved one’s ability to function independently, both physically and mentally.
- The availability of family and/or friends to form a support network to share the care.
- The physical environment: Is it accessible or can it be adapted at reasonable cost?
- Your other responsibilities — at work, at home, and in the community.
- Your own health and physical abilities.
- Your financial resources, available insurance, and existence of healthcare or end-of-life documents.
This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you’ve learned along the way.
Hold a family conference. At least everyone in the immediate family should be told what’s going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.
Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one’s care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.
Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you’ll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn’t family caregivers?
Start advance planning for difficult decisions that may lie ahead. It’s never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.
Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you’ll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.
Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.
Approach some of your hardest caregiving duties like a professional. It’s extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.
©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650
Seating & Mobility - As a caregiver, you need to be very understanding to the individuals needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. Getting them involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manor. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.
How do you care for your mobility device?
The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.
When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.
Additional Resources
It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs such office on disabilities, elder affairs, or material and child health.
Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.
National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site: http://www.thefamilycaregiver.org
e-mail: info@thefamilycaregiver.org
The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.
Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.
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