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.
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
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.
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
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.
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.
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.
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!).
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
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
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.
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
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
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
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.
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
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.
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
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:
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).
kills fungi and bacteria, and strengthens the body
(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.
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.
of lactic acid
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
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.
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.
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.
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..
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.
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.
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.
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.
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.
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.