Friday, April 6, 2012


Parenting with a disability has its ups and downs, just as it does for all parents."No amount of written information can really prepare you for the birth of a baby. The most important thing you can do is to work out what you will need to care for your baby, both financially and in terms of how much physical help you will need. Make sure you will have enough support, for yourself and for the baby, once the baby arrives.

But being prepared can mean something different for everyone. The many books, articles, and videos on various aspects of pregnancy, adoption, childbirth, child development, and parenting may be good starting points. You may need to dig for more information, advice, and support that relate to your specific disability. The good news is that, increasingly, there are more materials available geared towards parenting with a disability.

Talking with other mothers, both with and without disabilities, may be a better strategy for some women. In as much as some people will give you that evil eye just because you have a disability and want to have your own child do not mind them because in this world no one is perfect.

Another way to stay ahead of the curve is to see your needs as a mother as an ongoing process. Your needs and your partner's will change throughout pregnancy, as your child grows, and also as your disability changes. One good way to start, according to the Parenting Book for Persons with a Disability, is to complete a Child Care Abilities Survey. This survey helps the prospective parent with a disability identify the specific skills they will need in order to care for a child, the adaptations they may need to make around the house, and how much extra physical support they will need.

Children and adapting

While you'll no doubt learn to adapt to your child's needs, your child will learn to adapt to your needs as well. Patti explained how her daughter also learned to adapt to her, "When she was a toddler and wanted me to hold her, she would go to the sofa and pat the cushion. She learned quickly that I needed to sit down in order to hold her."
Mothers with disabilities do face extra challenges; life does not get any simpler as children grow up.

Keeping up with errands and appointments for their children of Chasing and retrieving children
• Making recreation opportunities available to their children outside the home
• Finding accessible parking near child care, school activities, or events
Not only does a mother face challenges related to the physical aspects of getting her child from place to place in her busy life, but interpersonal issues around disability may come to light as she and her child grow together. Somewhere around the middle school years, things may change. Your child might feel both embarrassed by your disability and guilty. Children have to take on what society is teaching them about disability and also what they learn at home. They also have peer pressures and fears about being different.

For example, as your child grows he/she will never be bothered with your disability and will always be proud of you but when he/she reaches teenage years they will tend to shy away from you not because they do not love you but because of peer pressure, stigma from friends and society and society at large.

Children will become increasingly aware of your disability and have more and more questions as they mature. It is important to help your child understand about disability. Discussing this issue will likely become a recurring theme in your lives.

Keeping the lines of communication open, inviting children to talk about their feelings and discomfort, and telling them that you understand they may feel uncomfortable are techniques a parent can use to deal with difficult times.

Keep in mind that all children do not necessarily respond in the same way to a parent with a disability. On the positive side, it has been said that in families where a parent or parents have disabilities and differences are discussed, lived with and valued, children may have a better chance of developing a built-in open-mindedness about diversity.Overwhelmingly, parents reported that the greatest blessing is that their children have learned to be compassionate, accepting and open to diversity.

"Mommy, why do you walk with a cane or even use a wheelchair?"

What you say in response to your child's questions or what you choose to tell them must be in line with their developmental stage in order to get the right message across. Also, it's best to give some thought to how you approach the subject. You will want to be up front and comfortable with what you are saying as you won't want them to grow up with a sense of shame about your disability. Since we do not have children yet I get this question most of the time from my nephews and nieces especially when they ask me Aunt why do you sit the way you do, why do you need some one to help you stand up from a sitted position, why do you support your right hand with your left hand while eating? The questions never end but I thank God they are growing up and more understanding.

All ages - tell them:
Mom has a disability
• The name of the disability
• Your best understanding of how your disability affects your abilities and activities

Preschool age - explain the disability on their level
Use dolls or puppets to help
• Don't go past their attention span
• Don't go beyond their ability to understand

School age - tell them:
Nothing they did caused the disability
• They can't catch the disability from you
• Who will take care of their needs (if the disability is a progressive one)

Teen age

Give lots of detailed information
• Answer every question fully
• Make sure there is someone outside the family with whom they can talk on a regular basis
• Be prepared for anything

"When explaining disabilities to your children, you should be open and honest and tell them what the disability is and what caused it. Because if they know the truth, they will have an appreciation for your problem and will not feel indifferent towards you for it.
Parents do have a crucial role of letting their children understand more about disability and that is what I intend to tell my children when God finally blesses us with children

Wednesday, April 4, 2012


What Is Muscular Dystrophy?

Muscular dystrophy (MD) is a group of inherited diseases in which the muscles that control movement (called voluntary muscles) progressively weaken. In some forms of this disease, the heart and other organs are also affected.

There are nine major forms of muscular dystrophy:

• Duchenne
• Becker
• Limb-girdle
• Facioscapulohumeral
• Congenital
• Oculopharyngeal
• Distal
• Emery-Dreifuss

Muscular dystrophy can appear in infancy up to middle age or later, and its form and severity are determined in part by the age at which it occurs. Some types of muscular dystrophy affect only males; some people with MD enjoy a normal life span with mild symptoms that progress very slowly; others experience swift and severe muscle weakness and wasting, dying in their late teens to early 20s.
The various types of MD affect more than 50,000 Americans. Through advances in medical care, children with muscular dystrophy are living longer than ever before.

The Major Forms of Muscular Dystrophy

Myotonic (also called MMD or Steinert's disease). The most common form of muscular dystrophy in adults, myotonic muscular dystrophy affects both men and women, and it usually appears any time from early childhood to adulthood. In rare cases, it appears in newborns (congenital MMD). The name refers to a symptom, myotonia -- prolonged spasm or stiffening of muscles after use. This symptom is usually worse in cold temperatures. The disease causes muscle weakness and also affects the central nervous system, heart, gastrointestinal tract, eyes, and hormone-producing glands. In most cases, daily living isn't restricted for many years. Those with myotonic MD have a decreased life expectancy.

Duchenne. The most common form of muscular dystrophy in children, Duchenne muscular dystrophy affects only males. It appears between the ages of 2 and 6. The muscles decrease in size and grow weaker over time yet may appear larger. Disease progression varies, but many people with Duchenne (1 in 3,500 boys) need a wheelchair by the age of 12. In most cases, the arms, legs, and spine become progressively deformed, and there may be some cognitive impairment. Severe breathing and heart problems mark the later stages of the disease. Those with Duchenne MD usually die in their late teens or early 20s.
Becker. This form is similar to Duchenne muscular dystrophy, but the disease is much milder: symptoms appear later and progress more slowly. It usually appears between the ages of 2 and 16 but can appear as late as age 25. Like Duchenne muscular dystrophy, Becker muscular dystrophy affects only males (1 in 30,000) and causes heart problems. Disease severity varies. Those with Duchenne can usually walk into their 30s and live further into adulthood.

Limb-girdle. This appears in the teens to early adulthood and affects males and females. In its most common form, Limb-girdle muscular dystrophy causes progressive weakness that begins in the hips and moves to the shoulders, arms, and legs. Within 20 years, walking becomes difficult or impossible. Sufferers typically live to middle age to late adulthood.

Facioscapulohumeral. Facioscapulohumeral refers to the muscles that move the face, shoulder blade, and upper arm bone. This form of muscular dystrophy appears in the teens to early adulthood and affects males and females. It progresses slowly, with short periods of rapid muscle deterioration and weakness. Severity ranges from very mild to completely disabling. Walking, chewing, swallowing, and speaking problems can occur.  and most live a normal life span.

Congenital. Congenital means present at birth. Congenital muscular dystrophies progress slowly and affect males and females. The two forms that have been identified -- Fukuyama and congenital muscular dystrophy with myosin deficiency -- cause muscle weakness at birth or in the first few months of life, along with severe and early contractures (shortening or shrinking of muscles that causes joint problems). Fukuyama congenital muscular dystrophy causes abnormalities in the brain and often seizures.

Oculopharyngeal. Oculopharyngeal means eye and throat. This form of muscular dystrophy appears in men and women in their 40s, 50s, and 60s. It progresses slowly, causing weakness in the eye and face muscles, which may lead to difficulty swallowing. Weakness in pelvic and shoulder muscles may occur later. Choking and recurrent pneumonia may occur.

Distal. This group of rare diseases affects adult men and women. It causes weakness and wasting of the distal muscles (those farthest from the center) of the forearms, hands, lower legs, and feet. It is generally less severe, progresses more slowly, and affects fewer muscles than other forms of muscular dystrophy.
Emery-Dreifuss. This rare form of muscular dystrophy appears from childhood to the early teens and affects only males. It causes muscle weakness and wasting in the shoulders, upper arms, and lower legs. Life-threatening heart problems are common and can also affect carriers -- those who have the genetic information for the disease but do not develop the full-blown version (including mothers and sisters of those with Emery-Dreifuss MD). Muscle shortening (contractures) occurs early in the disease. Weakness can spread to chest and pelvic muscles. The disease progresses slowly and causes less severe muscle weakness than some other forms of muscular dystrophy.

What Are the Causes of Muscular Dystrophy?

Muscular dystrophy is caused by defects in certain genes, with type determined by the abnormal gene. In 1986, researchers discovered the gene that, when defective or flawed, causes Duchenne muscular dystrophy. In 1987, the muscle protein associated with this gene was named dystrophin. Duchenne muscular dystrophy occurs when that gene fails to make dystrophin. Becker muscular dystrophy occurs when a different mutation in the same gene results in some dystrophin, but it's either not enough or it's poor in quality. Scientists have discovered and continue to search for the genetic defects that cause other forms of muscular dystrophy.
Most of the muscular dystrophies are a form of inherited disease called X-linked disorders or genetic diseases that mothers can transmit to their sons even though the mothers themselves are unaffected by the disease.
Men carry one X chromosome and one Y chromosome. Females carry two X chromosomes. Thus, in order for a girl to become affected by muscular dystrophy, both of her X chromosomes would have to carry the defective gene -- an extremely rare occurrence, since her mother would have to be a carrier (one defective X chromosome) and her father would have to have muscular dystrophy (since men carry just one X chromosome, the other is a Y chromosome).
A female who carries the defective X chromosome can pass the disease to her son (whose other chromosome is a Y, from the father).
A few muscular dystrophies aren't inherited at all and occur because of a new gene abnormality or mutation.

What Are the Symptoms of Muscular Dystrophy?

The symptoms of muscular dystrophy include:

• All forms: muscle weakness
• Myotonic: muscle spasms or stiffening after use, hand weakness, foot drop (inability to raise the front of one or both feet)
• Duchenne and Becker: clumsiness, frequent falling, difficulty getting up, waddling gait, curvature of the spine

How is Muscular Dystrophy Diagnosed?

Muscular dystrophy (MD) is diagnosed through a physical exam, a family medical history, and tests. These might include:
A muscle biopsy (the removal and exam of a small sample of muscle tissue)
• DNA (genetic) testing
• Electromyography or nerve conduction tests (which use electrodes to test muscle and/or nerve function)
• Blood enzyme tests (to look for the presence of creatine kinase, which reveals deterioration of muscle fibers)
For Duchenne and Becker muscular dystrophies, the most common types of MD, a muscle biopsy may show whether dystrophin, a muscle protein, is missing or abnormal, and DNA testing is used to analyze the condition of the related gene. Genetic testing also is available for some forms of muscular dystrophy.

What Are the Treatments for Muscular Dystrophy?

There is no cure for any form of muscular dystrophy, but medications and therapy can slow the course of the disease. Human trials of gene therapy with the dystrophin gene are on the near horizon. For instance, scientists are researching ways to insert a working dystrophin gene into the muscles of boys with Duchenne and Becker muscular dystrophies.
Researchers are investigating the potential of certain muscle-building drugs to slow down or reverse the progression of muscular dystrophy. Other trials are looking into the effects of the dietary supplements creatine and glutamine on muscle energy production and storage.
Conventional Medicine for Muscular Dystrophy
Symptoms of muscular dystrophy often can be relieved through exercise, physical therapy, rehabilitative devices, respiratory care, and surgery:

• Exercise and physical therapy can minimize abnormal or painful positioning of the joints and may prevent or delay curvature of the spine. Respiratory care, deep breathing, and coughing exercises are often recommended.
• Canes, powered wheelchairs, and other rehabilitative devices can help those with MD maintain mobility and independence.
• Surgery can sometimes relieve muscle shortening. In Emery-Dreifuss and myotonic muscular dystrophy, it's often necessary to surgically implant a cardiac pacemaker.
In some cases of MD, disease progression can be slowed or symptoms relieved with medication:
• In Duchenne muscular dystrophy, corticosteriods may slow muscle destruction.
• In myotonic muscular dystrophy, phenytoin, procainamide, or quinine can treat delayed muscle relaxation.
Medications also can be prescribed for some muscular dystrophy-related heart problems.

Can You Prevent Muscular Dystrophy?

If you have a family history of muscular dystrophy, you may want to consult a genetic counselor before having children. The odds of passing the disease on to your children range from 25% to 50%. Carriers -- typically sisters and mothers of those with MD -- usually don't have the disease, but they may exhibit mild symptoms that give hints of it. They can pass the disease on to their children; their sons will get the disease and half the time, their daughters become carriers. For Duchenne and Becker muscular dystrophies, protein and DNA tests can identify carriers, and DNA probes can provide prenatal diagnosis. Tests for carriers of other forms of muscular dystrophy are under development.

Follow by Email