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The Complete Guide to Muscular Dystrophy

Muscular dystrophy occurs when a group of hereditary diseases weaken and damage your muscles over a period of time. The weakness and damage is the result of lack of a protein known as Dystrophin which is necessary for normal functioning of muscles. Deficiency of this protein can lead to problems with swallowing, walking, and muscle coordination.

There are over 30 types of muscular dystrophy and they vary in both symptoms and severity.

While most diagnoses happen in childhood, Muscular Dystrophy can come about at any age. It is more prevalent in boys than girls.

Diagnosis is dependent on the type of muscular dystrophy and severity of symptoms. Unfortunately, most of the people who suffer from muscular dystrophy lose the ability to walk eventually requiring a wheelchair. Muscular dystrophy has no known cure, however, there are certain treatments that can help.

Muscular Dystrophy Symptoms

As mentioned above, there are over 30 different kinds of muscular dystrophy, which have been placed under nine different categories to aid diagnosis.

Duchenne Muscular Dystrophy. This is commonly diagnosed in children, and particularly affects boys. Girls rarely develop. Symptoms include:

  • Mild intellectual impairment
  • Loss of reflexes
  • Swallowing problems
  • Trouble walking
  • Difficulty breathing
  • Difficulty in standing up
  • Lung and heart weakness
  • Poor posture
  • Scoliosis (abnormal curvature of the spine)
  • Bone thinning

The patient will usually need a wheelchair before reaching their teenage years and their life expectancy is late teens or 20s.

Becker Muscular Dystrophy. Becker Muscular dystrophy is comparable to Duchenne muscular dystrophy but less severe in nature. Just like the Duchenne, it is more prevalent in boys and the symptoms start to show between the ages of 11 and 25. The individual will experience muscle weakness in their arms and legs. Other symptoms include:

  • Muscle cramps
  • Frequent falls
  • Trouble rising up from the floor
  • Walking on your toes
  • frequent falls

A small percentage of Becker muscular dystrophy patients may never require a wheelchair while those do may not need to use it until they reach their mid-thirties or older. The patients will also live longer and get to middle age or past it.

Congenital Muscular Dystrophy. As the name suggests, this type of muscular dystrophy will occur anywhere between birth and by age 2. Parents will start noticing that the baby’s motor functions, as well as their muscle control, are not developing normally.

The symptoms vary and include:

  • Poor motor control
  • Inability to both stand or sit without support
  • Foot deformities
  • Muscle weakness
  • Scoliosis
  • Trouble when swallowing
  • Visual trouble
  • Speech problems
  • Respiratory problems
  • Intellectual impairment

Symptoms depend on mildness or severity of the disease, however, most congenital muscular dystrophy patients need help sitting or standing up. Life expectancy is varied and depends on the symptoms. There are patients who pass on at infancy stage while others can live to adulthood.

Myotonic Dystrophy. Myotonic is also known as dystrophia myotonica or Steinert’s disease and causes Myotonia which is the inability to relax muscles once they contract. It is worth noting that myotonia only occurs in this form of muscular dystrophy.

Myotonic dystrophy affects:

  • Central nervous system
  • Facial muscles
  • Adrenal glands
  • Thyroid
  • Heart
  • Eyes
  • Gastrointestinal tract

The first symptoms will most likely appear on your face and neck and will include

  • Difficulty swallowing
  • Ptosis or droopy eyelids
  • Drooping face muscles that produce a thin, haggard look
  • Poor vision including cataracts
  • Premature baldness in the frontal area of your scalp
  • Difficulty lifting your neck resulting from  weak neck muscles
  • Increased sweating
  • Loss of weight
  • increased sweating

This type of dystrophy causes testicular atrophy and impotence in men and irregular periods and infertility in women.

Myotonic dystrophy diagnoses often occur in adulthood affecting those in the ages 20s and 30s. While the symptoms will affect the quality of life that one lives, they are mostly non-life-threatening and a patient may live a long life.

Facioscapulohumeral. It also referred to as Landouzy-Dejerine disease and affects facial muscles, shoulders and upper arms. This type of muscular dystrophy may cause:

  • Slanted shoulders
  • Wing-like looking shoulder blades
  • Difficulty when chewing or swallowing
  • Crooked looking mouth

A small percentage of FSHD patients may develop respiratory and hearing problems.

FSHD progresses slowly. Symptoms may appear when a person is in their teens or at the age of 40. Many FSHD patients live a full life.

Limb-Girdle Muscular Dystrophy. Limb-girdle muscular dystrophy occurs in both men and women and will more often than not make a person disabled by the time they are 20 years old. Limb-girdle muscular dystrophy is responsible for muscle weakness. Normally, it starts with the shoulders and hips but can also begin in the neck and legs. A person may find it difficult to walk up the stairs, come downstairs, get up from a chair or carry heavy items. Most limb-girdle muscular dystrophy patients live a full life.

Oculopharyngeal Muscular Dystrophy. This type of muscular dystrophy leads to weakness of muscles in the face, neck, and shoulders. Other symptoms are:

  • Difficulty swallowing
  • Visual difficulties
  • Voice changes
  • Droopy eyelids
  • Walking difficulties
  • Heart problems

Oculopharyngeal muscular dystrophy develops in both men and women and diagnosis happens when individuals are in their 40s and 50s.

Distal Muscular Dystrophy. Also known as distal myopathy and it affects the following:

  • Hands
  • Forearms
  • Calves
  • Feet

Distal muscular dystrophy can affect heart muscles and the respiratory system. The symptoms progress slowly over time and can include difficulty in walking as well as loss of delicate motor skills. Distal muscular dystrophy occurs in both men and men and diagnosis mostly takes place when individuals are in their 40s to 60s.

Emery-Dreifuss. Emery-Dreifuss occurs mostly in childhood and is more prevalent in boys than girls.

Symptoms include:

  • Breathing problems
  • A weakeningof the muscles in the upper arms and lower leg
  • Shortening of neck, elbows, knees, ankles and spine muscles
  • Heart problems

Most Emery-Dreifuss patients do not live beyond mid-adulthood and cause of death is usually heart or lung failure.

Diagnosing Muscular Dystrophy

There are several tests that the doctor can conduct to diagnose a muscular dystrophy. These may include

  • Blood tests to check for enzymes issued by damaged muscles
  • Blood tests looking for muscular dystrophy genetic markers
  • Carry out an electromyography test using an electrode needle inserted into your muscle to check muscle electrical activity
  • Conduct Muscle biopsy where samples of your muscle are analyzed for muscular dystrophy

How Is Muscular Dystrophy Treated?

Unfortunately, there is no known cure for any type of muscular dystrophy. There are treatments available to help patients stay mobile much longer through the prevention or lessening of joint and spine problems. Treatment options include:

  • Physical therapy
  • Occupational therapy
  • Medication
  • Surgical and other procedures

Medications

Your doctor may recommend:

  • Food and Drug Administration approved its use to treat Duchenne Muscular dystrophy conditionally in 2016 by and it will subject to continual evaluation for an additional two years.
  • This medication appears safe however its effectiveness and how it really works is still not clear. It is worth noting that it does not cure DMD but in some patients, it may increase muscle strength. Eteplirsen works on particular gene variants that affect roughly one in every seven people with DMD.
  • Corticosteroids like prednisone can aid muscle strength and even delay progression of specific kinds of muscular dystrophy. Side effects of prolonged use of these drugs include weight gain and weakened bones that can increase the risk of fracture.
  • Beta Blockers, (ACE) Angiotensin-converting enzyme inhibitors and other heart medicine can be prescribed by a doctor if the muscular dystrophy starts damaging the heart.

Therapy

Muscular dystrophy patients can access different types of therapy as well as assistive devices in order to improve their quality of life and in some cases extended their lifespan. Examples of these include:

Stretching exercises and range-of-motion exercises: Muscular dystrophy can greatly limit flexibility and mobility of the joints. Often times the limbs will draw inwards and remain in that position. Range-of-motion exercises can be of great help by keeping the joints as supple as possible.

Exercise:Walking, swimming, and other low-impact aerobic exercises can help sustain mobility, strength, and health in general. There are particular strengthening exercises that can also help however it is very important to consult your doctor before embarking on any type of exercise to avoid causing more damage.

Braces:These can be used to keep both tendons and muscles stretched and flexible thereby slowing down contracture. Braces can also be used to provide support for weakened muscles by aiding mobility and function.

Mobility Aids:Examples of these include wheelchairs, walkers, and canes which help a person stay independent longer and maintain mobility.

Breathing Assistance:The effect of muscular dystrophy on the respiratory system can bring about breathing problems. A sleep apnea device can help improve the delivery of oxygen into the body at night. Severe muscular dystrophy can call for a ventilator

Surgery. Spinal curvature can eventually bring about breathing problems among other health problems. Surgery may be required to correct the curvature

Preventing Respiratory Infections

During later stages of muscular dystrophy, respiratory infections can become problematic. People suffering from muscular dystrophy should get pneumonia vaccinations and influenza shots. It is also important to stay away from other people who are suffering from respiratory infections.

Clinical Trials. It helps to have knowledge of the disease. Stay abreast of studies testing new treatments, tests, and interventions as a way of preventing, detecting, managing or treating the disease.

Lifestyle and Home Remedies. Dietary changes have no impact on the progression of muscular dystrophy; however, access to proper nutrition can help minimize some of the symptoms. Limited mobility can easily translate into obesity, constipation and even dehydration. A diet rich in fiber and proteins and low in calories can help lessen these symptoms.

Coping and Support. It can be extremely hard to cope with a diagnosis of a muscular dystrophy. Some of the things you can do to cope include:

  •  Talk to someone. It can be a family member or a close friend – just make sure it is someone you feel comfortable talking to. In case you need a more formal group especially one which has people who share your type of disease then go for it.
  • Learn to talk about your child’s condition.As a parent of a child suffering from muscular dystrophy, seek advice from your doctor about the best ways to discuss the condition with your child. This way you won’t have to feel like you are walking on eggshells

 

Preparing for Your Appointment

It is always important to be prepared before meeting a muscular dystrophy specialist (and any other doctor for that matter). Some of the ways to prepare before the appointment include:

What You Can Do

  • Make a list of all the signs and symptoms you have experienced. Parents can write these down for their children
  • If you have photos or video recording that illustrate the symptoms then bring those along too
  • Note down all key medical information. This includes any pre-existing conditions, medicine, vitamins, and supplements.
  • Find out if anyone else in your family, including those who have passed on, has suffered from muscular dystrophy.

Questions to Ask the Doctor

  • What are the likely causes of the signs and symptoms?
  • What complications can arise?
  • Which tests need to be done?
  • Are there treatments that the doctor can recommend?
  • In terms of long-term outlook, what are you facing?
  • Is a meeting between a genetic counselor and the family necessary?
  • Any other questions that you may have in mind

5 Natural Remedies for Muscular Dystrophy

Managing the condition is key to keeping yourself or the patient safe, comfortable, healthy and possibly extend their life.

Below are several ways you can do this.

Exercise and Other Physical Activities

One of the key strategies when it comes to managing muscular dystrophy is keeping the muscles both strong and supple. Lack of exercise and generally leading a sedentary life can lead to worsening of the condition and even contribute to complications including emotional distress. The appropriate exercise can help a person maintain muscle strength longer. You can actively improve your mobility by using special shoes or inserts, a can, strollers, braces, electric scooters, walking assistants and manual or electric wheelchairs. Physical therapy goes a long way in maintaining flexibility and motor skills.

Stretching and exercising have proven valuable in dealing with trouble balancing or walking, joint pain, anxiety or depression as well as a reduced range of motion. You can online and find free videos on muscular dystrophy that will teach you how to do helpful stretches and other physical exercises.  Researchers from MDA Neuromuscular Disease Clinic, UC Davis, indicate that in as much as exercise is helpful for those suffering from muscular dystrophy, it is not usually recommended to a lot of patients unless they inquire about it. The reason behind this is, is that there have not been a lot of formal clinical trials to test the effectiveness of physical activities on muscular diseases.

According to research, exercises such as swimming or water sports, wheelchair sports, stretching, weight training, walking, cycling and using stretching bands have all been shown to be beneficial.

Therapy and Support When Dealing With Emotional Troubles

Chronic and other difficult illnesses are often times very hard to deal with and can result in emotional distress for both the patient and their caregiver. Speaking to the family therapist or a cognitive behavior therapist can be helpful for everyone i.e. patient and caregivers as well as the rest of the family. Both patients and caregivers can enroll in support groups to help themselves cope.

Other ways to manage fear and sadness include practicing meditation and visualization, educating oneself on the disease and making plans for the future. Joining a support group allows one to meet and speak to other people who are dealing with the same problems. An excellent place to find this kind of support or get help when one is handling the stress that comes from managing the disease is the Muscular Dystrophy Association.

A Healthy Diet For Maintaining Energy

The theory behind nutrigenomics indicates that the choices you make regarding what foods to eat may influence the impact of your genes on your health and determine whether you will develop a particular disease. There are specific dietary chemicals known to affect the human genome and end up altering genetic structure or gene activities. What this means is that these chemicals can trigger the start and progression of a chronic disease including its severity. It is important to note that what you consume alongside your genotype can work together to prevent, alleviate and possibly cure diseases.

Inflammation levels in your body can also be impacted by your diet. Several factors can contribute to worsening inflammation including highly processed foods, low-nutrient diets, and exposure to toxins, environmental pollution, sedentary lifestyles, and high-stress levels. These factors affect your immunity. They hinder the body’s ability to defend itself from cell alterations, signs of aging, degeneration of cells, digestive system issues, bone mineral density loss as well as death.

Diet alone may not prevent or treat the disease but it will lower inflammation levels in your body. Consuming a healthy and healing diet can actually slow the progression of the disease. Try as much as possible to eat whole foods especially superfoods, fresh vegetables, and other nutrient-dense foods. In addition, try to use natural household and beauty products, reduce using products that contain harsh chemicals in them, stay away from smoking and smokers, stay physically active and do your best to manage stress.

Supplements To Support Healthy Muscle Tissue

Supplements do not necessarily work for everyone; however, there are those who find them helpful. Muscular dystrophy supplements include

  • Antioxidants such as vitamin C and E contain anti-aging properties and useful for joints, muscles and the heart.
  • Match green tea, as well as green tea, extracts to provide energy and anti-inflammatory effects.
  • Omega 3 fish oil which is great for minimizing inflammation.
  • Amino acids such as coenzyme Q10, carnitine, and creatine. These form proteins which help sustain muscle tissue.
  • Probiotics which help with digestive functions.
  • Glucosamine and chondroitin that help manage joint pain

Essential Oils For Joint And Muscle Pain

Essential oils help minimize pain, swelling and other symptoms linked to degeneration of muscle, tissue, cartilage as well as joints. Examples of essential oils that decrease pain naturally include frankincense, turmeric, peppermint, ginger, and myrrh.

Other essential oils known to naturally reduce depression or anxiety, indigestion or fatigue include lavender, orange, grapefruit, and chamomile.

Placing a diffuser by your bed to diffuse essential oils as you sleep can improve the quality of sleep and help relieve pain and inflammation. Carrier oil can be blended with essential oils and applied topically to the places where you are experiencing pain

Precautions When Treating Muscular Dystrophy

It is always important to note that muscular dystrophy treatment will not work the same way for all patients and that each patient is unique. Keeping tabs on individual reactions, symptoms progress and possible warning signs of complications is crucial. In the end, the healthcare team in conjunction with the patient will determine the best course of treatment for the patient. As with any other disease, early intervention will help reduce the chances of worsening symptoms. It is crucial to consult a doctor or your child’s doctor if detect any signs of muscular degeneration or disease. The signs include sudden weakness, loss of balance, trouble walking, reduced flexibility, slurred speech and numbness in the upper body or face.

The Right Diet for Muscular Dystrophy Patients

Proper nutrition is crucial for people suffering from neuromuscular diseases as they can help them live as normally and as healthily as a person with muscular dystrophy can. According to research, a well nutritious and well-balanced diet can notably improve the quality of life especially for patients suffering from Duchenne muscular dystrophy. There are many considerations surrounding caloric intake including the use of steroids, the capacity of ambulation and physical activity, however, most experts recommend a daily caloric uptake of up to 80% for anyone who does not have Duchenne MD. Other recommendations include reducing salt intake and including more calcium.

Regardless of the condition a person is in, a good diet is essential in stabilizing your health. Parents Project Muscular Dystrophy states that it is important for a patient’s diet to be high in protein and low in carbohydrates and fats. Maintaining normal body weight is vital so as to not overburden weakening muscles. Further, immobility and weak abdominal muscles can bring about constipation. A diet high in proteins, fresh fruits and vegetables and high in fluid fiber can aid the digestive process and metabolism.

Foods recommended for muscular dystrophy contain high levels of proteins and fibers and are low in carbohydrates. Some of these foods include eggs, tuna, steak, Greek yogurt, oats, peas, and broccoli. Meats can be a little difficult for patients to chew therefore both patients and caregivers must be watchful especially if the patients have trouble swallowing.

Eggs. Eggs, particularly egg whites are high in protein. In fact, overall, eggs are considered very nutritious and healthy. For a little extra boost and creativity, try eating your eggs with cheese.

Round Steak. Steak, specifically one that is lean provides a lot of protein. For every 7 calories, there is 1 gram of protein. In addition, lean cuts are quite economical

Oats. Oats are healthy grains and an excellent source of protein. You will find them included in many dietary meals. Oats are also easy to find as they are highly available in supermarkets

Pumpkin Seeds. Yes, pumpkin seeds are edible and are a great source of zinc, iron, and magnesium. In addition, they provide proteins of up to 14% from calories.

Broccoli. Now you know why mama always added broccoli to your plate! This superfood is a good source of proteins, vitamins, and potassium. It is also high in fiber.

Tuna. Tuna is 94% protein. It’s no wonder that tuna is extremely popular in diets and tasty too.

Chicken Breast. Chicken breast is a good source of protein, especially when eaten without the skin. Most of the calories in the chicken breast come from proteins so there is really no risk of getting excessive calories.

Greek Yogurt. Greek yogurt is also a good source of protein and contains far more proteins than other yogurts out there. It is also high in calcium which will aid bone strength.

Green Peas. A cup of peas contains up to 8 grams of protein making peas a worthy source of much-needed proteins. Proteins are both delicious and inexpensive.

Cottage Cheese. Cottage cheese contains casein proteins that provide amino acids the body needs for growing muscles. ½ cup serving can yield 14 grams of protein.

Lentils. You can never go wrong with greens foods. These tasty greens are rich in protein – they are actually 27% protein.

Quinoa. Quinoa grain/seed has plenty to offer. It is high in protein and contains fiber, minerals, vitamins, and antioxidants. It is a valuable addition to one’s diet.

Octopus. Seafood choices just got even better. Every 3oz. of serving contains 25grams of protein. You can find tasty and healthy recipes online to make your octopus meal even more delectable.

Milk. Milk is healthy and delicious. Aside from being an excellent source of calcium, one glass of milk provides 8 grams of protein. As much as possible, try to obtain organic milk from grass-fed cows so as to maximize on the protein and calcium levels.

Other Things to Keep in Mind

Having tackled nutrition and proper foods, let us look at other things that one needs to keep in mind:

  • It’s crucial for a patient to take their vitamins and supplements without fail.  Daily intake of supplements and calcium are vital to patient’s condition. It is important to get information on when, where and how these supplements are to be taken. It is also important to note that the body cannot handle too much calcium so working hand in hand with a physician will help you come up with a plan that will suit the patient’s body.
  • Experts at the University of Maryland Medical Center indicate that anyone suffering from DMD should stay away from refined foods such as pasta and white bread. They should also shun stimulants as well as coffee. Whenever patients experience food allergies they should steer clear of foods that contain additives and preservatives.
  • Sugar exacerbates DMD symptoms and for this reason, anyone suffering from muscular dystrophy should remove sugar and sugary foods from their diet.
  • Fiber is an important part of your diet. The Academy of Nutrition and Dietetics proposes that women below the age of 50 should consume at least 25 grams of fiber while men should take 38 grams.
  • One of the best pieces of advice given to DMD patients is to go green. Green leafy vegetables offer unequaled nutrition that will work wonders for your body. Greens are essential for the wellbeing of a DMD patient.
  • Just as greens are important, so is water. Drinking 8 glasses of water on a daily basis will help muscular dystrophy patients stay hydrated at all times

The post The Complete Guide to Muscular Dystrophy appeared first on Positive Health Wellness.

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