WARNING!

The following methods are requiring consulting a doctor and physiotherapist before use, because it is very easy to cause the patient serious and permanent injuries. In addition, each case of disease is different and requires an individual approach. I present ways in which we struggle with muscular dystrophy. However, I do not answer for any injuries after practice these by other patients.

All types of muscular dystrophy are currently incurable, but there are intensive researches on the discovery of a cure for them, in many laboratories around the world. In anticipation for this event the main task is to maintain the patient in the best possible physical condition and the maximum prolongation of life. In realization of these objectives the most need to engage parents and the sick person, but physiotherapists and physicians should coordinate, advice, etc. Parents should give the patient a lot of attention and work. You have to spend time each day to several times a day with the patient to perform various exercises. Equally important is the patient relax during the day lying down. It should provide good patient care, but over-protectiveness is inadvisable. It must cooperate in the rehabilitation and have certain responsibilities. I and my parents struggle with the disease as follows:

• One of the most important thing is to fight off muscles contractures. Contractures are a typical symptom for all types of muscular dystrophy, and arise primarily as a result of unequal weakening of muscles acting in opposition. These relate to the hip joints, all joints of the legs and hands, and spine (especially in the cervical). Cause the premature loss of ambulation, distorted limbs, decreased range of motion the patient head, difficult to write and use a computer, etc. Starting with the fight off contractures you need to know that they will not completely eliminate. However, it can be significantly reduced, and I am living proof.

• My dad fights off my contractures in many ways. But the most effective of them is stretching the tendons. This must be done from an early age, regularly, as often as possible, at least three times a day, after at least ten movements. My dad is doing this to me in the morning and evening for many years. Prior to exercise, ensure that the patient's body was not cold. First he manually massages muscles responsible for contracture (from which goes tendon). Exercises he performs with feeling, not "force" and carefully not to break bones, do not twist the joint ligaments or strain tendons. Especially he is careful about elbows, because fracture around the elbow is very difficult to cure. Head, limbs, fingers, and every little part of your body movements perform in the fullest extent possible - as does a healthy man. For example, my hand he straightens up and clenches into a fist. Stretching we do slowly until the pain and then hold down for a few seconds in this position.
  Generally, a healthy person carries an enormous amount of movement and we cannot list them all. However, it is important to try to systematically carry out all of them.
  In addition to stretching patient should take care to avoid body position, which favor the formation of contractures. Other ways to fight, with contractures can be found in the literature on rehabilitation in diseases of the muscles.
        NOTE: Once the disease is already advanced, and contractures are strong and established, you cannot use the above exercise, because they can lead to serious injury. Therefore, rehabilitation should begin as soon as possible if the contracture is not yet or when they are small.

• Personally, I would not recommend the orthopedic surgery of Achilles tendon lengthening (tendon is located between the heel and calf). Many doctors and therapists highly encourage patients and their parents to do this surgery. They argue that after surgery the patient will longer walk before he sits on a wheelchair. Theoretically, it should be, but after such treatment is necessary to place the legs in a cast and the patient stay in the hospital for several weeks. During this time the legs are immobilized, and thus the muscles do not work and quickly killed (in accordance with the principle of healthy people that when muscles are not in use they disappears with time.) After removing the plaster it may be that the muscles have weakened significantly and irreversibly. In addition, every procedure carries a risk to health (e.g., bacterial infection, etc.). I think that this procedure is redundant and only improves the aesthetics of the legs. With me not performed such an operation, but I still went through 11 years of age and not have to be in the hospital. I know the number of patients with muscular dystrophy who build hope on the disease will stop as a result of tendon elongation. Later, they experienced the disappointment and the collapse, because the disease has progressed further.

• Another very important element in prolongation of life is the prevention of spinal curvatures. Curvature is caused by the atrophy of the muscles supporting the spine in proper position and long-stay patient in one - mostly sitting - position. When the patient begins to move only on a wheelchair, curvature increases. In dystrophy occur spinal curvature (scoliosis) and the arched curvature of the spine toward the ventral (lordosis). Scoliosis causes a reduction of lung vital capacity, which is causing respiratory problems. In addition, causes problems with digestion and makes it difficult to seat. And Lordosis, inter alia, makes that the head "flies" back and the patient starts to "look at the sky." This makes it difficult to look straight ahead and eating (swallowing). Besides, if the patient lies "on his back, his body is based on the head and the tailbone. These places are exposed to high pressure, pain, and (for long stayed in one position) pressure sores.

• Now I will describe what methods my Dad uses that I almost don’t have scoliosis, and lordosis ceased to deepen. To stop the scoliosis, when I sit on a wheelchair he puts me at two sides a special boards (up almost under my arm) and a rigid pillows from both sides of a body, rather with precision, in order to I do not rocked from side to side and sat on the side with a curved spine (see Gallery). Stabilization using boards and pillows we have started as soon as I started to consistently use a wheelchair (it is good, when the wheelchair is not too wide and has a strip of "security" for attaching a patient to it.) With time, we used under the arms plywood panel to increase the stability of the body (see gallery). Lordosis noted quite late and so I have it quite advanced. Due to different treatments stopped, however. While lying down "on my back" (in order to the head does not bend backwards) under the head I have two small pillows - hard underneath and soft on top and a soft pillow under my tailbone (see Gallery). At least two times a day I do myself a few bends my head forward (towards the chest). Similarly, my father bends my head towards the chest (very carefully, because damage to the cervical spine may cause permanent paralysis or death!).

• Some doctors and therapists recommend correcting the curvature of the spine an orthopedic corset first, and later, when the curvature is more advanced, the surgery of the spine by strengthening it along its entire length with special rods to restore physiological curvatures. The surgery is performed under general anesthesia.
  Orthopedic corsets do not hamper the deepening of the curvature of the spine and are poorly tolerated by patients. For these reasons, my parents after consultation with the doctor did not agree for corset.
  As for the spine stabilizing rod implantation I also do not have them, and yet I almost did not have scoliosis and respiratory problems occurred by me late (age 25 years). In general, I do not believe these rods because of their implantation surgery carries considerable risk (risk of infection, problems with awake from anesthesia, etc.). In addition, the bones in patients with muscular dystrophy are thinner and weaker.
  On the other hand, if the lateral curvature is large, surgery may be necessary.

• Major problems in patients with muscular dystrophy are respiratory disorders. They will appear imperceptibly and insidiously, as a result of respiratory muscles weakness, reduced mobility of the ribs and thoracic spine, chest deformities and scoliosis. Cause more frequent and more severe lung infection and bronchitis, and consequently lead to life-threatening.
  Now I will describe how my breathing troubles look, and how I live and fight with them. The first tentative signs began to appear at the age of 24. Until then, I carried out various breathing exercises. At the time of infection, which from year to year, it was increasingly difficult to cure, we had to contend with surging bronchial secretions (the procedure in case of infection in the next section). Classes were as follows: when I stopped walking was the rehabilitation on the pool and verticalisation and throughout practiced the abdominal muscles, vocal, deep inhalations and exhalations, often went out for walks, once a year, I traveled to the seaside for rehabilitation (special for patients with muscular diseases), where I learned many exercises, etc.

• The first harbinger of trouble breathing was spirometry that I had done accidentally (on rehabilitation holyday) at the age of 23. Vital capacity was less than a liter (below standards), measured after many attempts. Then I realized that soon will be serious problems with me. I was not mistaken.
  For a year I had little significant incident. I just went to an organ concert and I fell asleep right at the beginning. I woke up strangely tired after the end of the concert. Over the next year I explained myself that then music put me to sleep.
  When I achieved 25 years old I started more often fall asleep during the day (this was done in an uncontrolled manner). Also I changed some of my habits. Whereas previously I could never sleep during the day, so I started very readily and quickly fall asleep. On the skin, mouth and tongue began to gradually appear various inflammatory conditions probably associated with hypoxia of the body. After eating every meal hypoxia deepened for a time (the complaint repeats so far). As a result of belly filling food breathing became difficult. Every evening, just after the sleep seemed to me something that throws me, then I woke up panting and sweating. Morning, however, from day to day longer, my dad had to do gymnastics, i.e., bending on the bed from a lying to sitting, or else my heart was beating very fast, my head ached, I was sweaty and I spoke in gibberish. These exercises apparently served as the role of artificial respiration just that, then we did not really know about it.
  In 26 years old these symptoms have grown considerably, joined by me severe lung infections.
  The most difficult for me and my parents was to survive a night: I was losing the breath every 5 minutes; my Parents – on shifts- helped me by pushing my chest. But during the day I was sleeping and losing my breath, even during eating. Because of the sleepless nights I was sleepy and tired (so were my Parents), it made my state worse. Breathing problems were accompanying by the infections of the lungs. 
  In June 2001, I received the Sacrament of Anointing of the Sick with a weak belief in improving health ... and already in September I felt better. So why did I feel better? I believe and I'm sure that made it the power of God through the Sacrament of Anointing of the Sick. This power has contributed to my Dad, who made of publicly available parts the device that presses the lower ribs and thus enhances my breath. I feel much better, because my breathing is assisted. Unfortunately, I have to lie under this device throughout the night in one position.
  In this way, my life has been extended by more than 9 years and I returned almost to normal. In addition, during these years, my dad has done some other device to assist breathing. Two types of devices to a wheelchair and one to a car

• When I started to have problems with breathing, my parents went to the assistance of the Warsaw Hospice for Children. I receive from the hospice a great and invaluable help.

• We must at all costs not allow to colds, which weakens the body esteem of the patient. When you cough up it strains respiratory muscles and accelerates their atrophy. We have to take care of those muscles to as late as possible you have problems breathing. It is important to protect the patient against infection from the ill people and against a cold. Particularly vulnerable to cold are ill people, who need to use a wheelchair because they move less and therefore have a decreased blood flow. When walking in cold weather, the patient should dress warm clothes and not to worry too much about the aesthetics (see Gallery). In particular, care should be taken to secure the head and legs.
  In order to increase the immunity I was leaving every year, in summer the sea, and from autumn to spring among others ate onion, garlic and lemon. When after all I fell ill, I first used home treatment methods, and when they did not help then I went to the doctor.
  During the cold the most important and most difficult is to fight off secretion surging lungs. Parents are doing it together with me in many ways, which we have developed by trial and error procedure. Among other things parents beat my lungs on the front, rear and sides of the hand (omitting the kidney, spine and shoulders). They use manual cough assist, for example when I am lying "on my back' they are pushing vigorously with hands my lower ribs at the time of expiration, and I am coughing. However, in a sitting position they are clutching my chest in the front and rear. As a last resort my Dad used a grip used in first aid for choking up.
  With disease progression, these treatments are no longer enough. However, thanks to the Warsaw Hospice for Children received an expensive device called Cough Assist, which simulates the action of coughing. It pumps air into the respiratory tract, then sucks them sliding down secretions to your throat, where it is easier to remove. I know that this device has saved my life a few times.

• Immune system depends on many factors, but the most important is proper nutrition. In today's world we eat highly processed foods, with many harmful additives, but we do not eat what is necessary for us.
  The basic condition of a high resistance is to have suitable bacterial flora in the gastrointestinal tract, mostly lactic acid bacteria. If you have bowels populated by beneficial microorganisms, then for any harmful bacteria, fungi and viruses, there is simply no longer a place there. These bacteria are among others in kefir, pickled cucumbers, and sour cabbage. There are also pharmaceutical preparations containing live bacteria, especially needed for indigestion, weakened organism and antibiotic therapy. I take them every day. The best are multi-bacterial preparations. A beneficial effect on the development of these bacteria is fiber, which we consume too little.
  Fiber is found in vegetables, fruits, bran cereal, porridge, natural cereal flakes, wholegrain breads, legumes, etc. Fiber also leads among others to accelerate gastrointestinal motility, reduced absorption of cholesterol and triglycerides, decrease in blood glucose levels, reduce feelings of hunger, removal of toxins and heavy metals.
  These bacteria are killed most of the time you take antibiotics. Then comes to the rapid growth of fungi, mainly yeasts namely Candida albicans in the bowels, which attack the whole body and mycosis arises. For example, oral thrush, pneumonia, etc. Symptoms of mycosis include: digestive disorders, flatulence, weakness, fatigue, sleep disturbances, sweating, mood swings, general unwillingness to act, lowered immunity and constant colds, irritability, and all states inflammation. The growth of fungi promotes sugar (yeasts feed on sugars and produce alcohol), weakening the body, alcohol, steroid, hormones and antibiotics. There are antibiotics to combat fungi, but the problem is that the yeast rapidly more resistant to their action. Therefore, use the appropriate diet and strengthen immunity to the organism itself fought against fungi. You must not eat sugar and sweets, white flour products and wheat, even fruit initially. In addition, garlic is an excellent vegetable fungicide (also bactericidal and lowering cholesterol) and should be eaten daily.
  A major role in strengthening immunity have Omega 3 fatty acids. Unfortunately, we eat them too little because they are unstable and decompose at too high a temperature. These acids are found in linseed oil, soybean oil and oily fish, cold sea water. Too low Ω 3 fatty acids in the body cause chronic inflammation, immune self-harm, atherosclerosis and promotes development of cancer.
  Now I will describe what supplements I use to enhance immunity, prescribed by doctors from the hospice:

• The juice of wild rose, rich in vitamin C, lycopene, and bioflavonoids. It helps in colds and flu, inflammation of blood vessels, bleeding gums, kidney failure and biliary disorders and anemia (improves absorption of iron).

• Garlic, kills fungi and bacteria, and strengthens the body

• Citrosept (grapefruit seed extract) supplements the diet with natural bioflavonoids with antioxidant properties to capture free radicals and showing synergistic (mutually reinforcing) with vitamin C and protect it against oxidation.

• Cleansing mixture, I take it in the morning on an empty stomach, half an hour before eating (5ml of aloe vera, 5 ml of evening primrose oil, 5 ml of lemon juice, and 5 ml of water). The task of this mixture is the systematic elimination of erosions in the bowels. By erosion, i.e. intestinal leaks toxins penetrate the body, which are the cause of all diseases. Oil blocks the absorption, aloe heals erosions and gives beneficial effect on the skin and lemon juice dissolved deposits.

• Bacteria of lactic acid

• Linseed oil.

• Cranberry juice. Compounds in cranberries reduce the adhesion of E. Coli bacteria to urinary tract epithelial cells and reduce their proliferation. Therefore, the cranberries are used in the treatment of cystitis and mild infections of the urinary tract. 

• MGO Manuka Honey from New Zealand. It has antibacterial impact, arising from the contents of the active compound - methylglyoxal - which arises naturally in the nectar of manuka plant.

Otherwise I resigned to sweeten the tea, drinking juice from the carton (and other from shop) and I limited the consumption of sweets. 
We eat too much sugar, and for their digestion, the body produces plenty of insulin. Over time, diabetes can occur. There is also a curiosity, have you ever seen anyone to have invaded in the sugar some insects? The flour or gruel indeed.
There is one more compound which I use instead of antibiotics during the light colds. This is the Ag 100 colloidal silver. You have to be careful with this, do not give to children, and first check if you are not allergic to silver. Long-term consumption or in large quantities, may cause permanent, gray tint of the skin. Silver compounds were used during World War I in order to prevent infection, before there were antibiotics. Silver blocks the propagation, and destroyed more than 650 pathogenic bacteria, fungi and viruses. Microorganisms are not more resistant to silver.

• To diagnose muscular dystrophy I hadn’t performed muscle biopsy. My dad would not agree to it, because it is quite painful. So we were satisfied with the determination of the level of enzymes (creatine kinase - CK, aldolase and transaminase levels), family history and analysis of clinical symptoms. With time, it turned out that I really have progressive muscular dystrophy. It is now easier, because there are tests for defects in the DNA that can unequivocally confirm the diagnosis.

• Very early we started to rehabilitate on the pool with warm water (temperature about 36 ° C). Exercise in the pool requires less effort by the force of buoyancy and in warm water contractures relax and improves the efficiency of the respiratory and circulation. I am with my Dad as a guardian attended for a swimming pool every day, five days a week, from 8 to 11 years old. I finished the rehabilitation due to more frequent colds, and the fact that I started to move in a wheelchair and it was increasingly difficult to put me into the pool. During the rehabilitation I did not carry any special training, simply slide around the pool, I inhaled of much air and plunged down the ladder to the bottom then exhaling and was floating on the water on my back, etc..

• Another thing is rehabilitation every day at home. While I walked, the doctors sent me to study exercise, which then I handle them. Of course, now when I move in a wheelchair and the disease is advanced, daily exercise is completely different and does it mainly my dad.

• Take care that the patient is regularly defecated. In order to facilitate digestion, I am doing various abdominal exercises. Parents massage my belly in different ways, tilting me to erect position etc. Previously, when I did not have respiratory problems, I was often lying on my stomach, which speeded up the digestion. In addition, I eat plenty of fruits and vegetables.

• My education was as follows. The first and second grade of primary school I graduated almost normally, because I walked yet. In the meantime, Dad gave up paid employment, and founded his own company, to be near me and drive me to school. From 3 grade Dad drove me daily to and from school, and in middle classes came and went with me to the toilet. Besides the schools I attended were not adapted for disabled guests. That was 10 years (until the completion of secondary school). Then I finished high school diploma, and education. In addition to learning the school I had contact with my peers, so I met many friends with whom I keep in touch. I have not continued to study for medical reasons, and besides, there was no university in my town. Now it is better because the schools are inclusive and accessible for people with disabilities.

• Four years I have used a wheelchair with electric drive. I felt celebrate if I could move independently. With time, I had to "say goodbye" from such wheelchair, because of hypoxic. Besides, with the same reason I quickly lost a lot of power. I regret that I started so late (22 years old) to ride an electric wheelchair. Unfortunately, earlier in Poland, these wheelchairs almost did not exist, or were very expensive.

• For a long time we were looking for help from quacks and herbalists. Of course they did not help, because it is impossible to repair genetic defects with herbs. In addition, it was a waste of precious time that could be used for rehabilitation of the real event. Additionally quacks and herbalists are often ordinary swindlers, and even if they have some power that they did not know whether and how it affects other people. It is better to celebrate pray for the patient in accordance with his professed religion. It really helps to fight the disease. I know something about this because I experience the same support.

• Do not smoke in rooms where persons with muscular dystrophy live, because cigarette smoke weakens the immune system and poisons the body. The more patients can not smoke.

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