Hello :) My name is Greg and I was born in 1975. I am the second
child of my parents, I still have an older, healthy sister - Magda. I have been
afflicted with progressive Duchenne muscular dystrophy (DMD) since birth.
Currently, I am 43 years old, and the statistics show that patients with this
disease rarely live to this age. I would like to present my story to everyone
and share my and my parents' experience in the fight against the disease.
As I mentioned above, I was ill from birth, however, we learned much about the loss
of muscles when I was 7 years old and the symptoms that made my life difficult.
When I was born, I looked very prominently and there was nothing to indicate
that I was affected by a serious illness and that someday I would ride a wheelchair.
My parents were very happy about my birth, especially Dad thought he had a son
who would help him. I started to walk quite early. The first years of my life
passed me happily, I lived in a house on the outskirts of the city with a large
garden full of flowers my grandfather kept growing. He was a very good man and
I have not met a better one yet. In the summer I always traveled with my parents
and sister on holiday. I think that every person should have such a childhood.
Of course, not everything looked so rosy.
The first signs of weakness and illness began to appear timidly. Initially, they
were frequent colds that turned into bronchitis. In addition, I was a strangely
polite and calm child, I was able to sit and set all day blocks! There was also
an episode, namely during the holidays, when I was 3 years sitting on a bench without
a backrest, I lost my balance I fell back and quite heavily strained my spine. If I was
healthy, then such an event would not have taken place. In addition, while playing with
my peers I was always weaker and I did everything last. For example, I was able to enter
only the first step of the ladder, and then no longer. With time, the symptoms of
Duchenne dystrophy began to appear in accordance with the description in the medical
literature, but then we did not hear about the disease and did not notice its symptoms.
It is only from the perspective of time that I was already ill. About 3 years old I had
big calf muscles, due to their fibrosis and weakness. A s a result, these muscles were
shortened and Achilles tendon contracture appeared, which caused that I often fell over.
Doctors have said that I have flat feet and I have to wear orthopedic insoles. I walked
for two years, so unnecessarily in insoles. When I was 6 years old and changed
the kindergarten, my illness began to reveal seriously. This was first noticed
by my tutor because she had a comparison with other children. I had difficulties
with putting on winter coats, I could not keep up with the other children and I was
falling over and over again, I could not do all the gymnastics, I went like duck,
on my toes, with the belly forward. When my parents were informed about these problems,
my father made sure that I would practice intensively to improve my physical strength.
Unfortunately, with time, I was getting weaker, because the tired muscles were dying faster.
Then I started to visit the doctors in order to establish a diagnosis and to take
a possible treatment. After many adventures, I finally got to the Musculoskeletal
Diseases Clinic in Warsaw, where, after a preliminary diagnosis, I was directed
to study the level of enzymes (creatinine kinase - CPK and aldolase) in the blood.
To pick up the results, my dad went with me. The lady in the laboratory harshly
communicated to us - "sick, incurably, muscular dystrophy!" My Dad was very worried
about it until he was dizzy. However, at the time I did not know anything about it
and did not understand anything. Then with the results we went again to the
Musculoskeletal Diseases Clinic. Of course, the professor also confirmed the
diagnosis and reported that I have DMD for which there is no medicine and only special
rehabilitation is possible to delay the progression of the disease. My dad, however,
thought that there was some medicine after all and he wanted me to get it. So I started
to get various painful injections. One of these drugs turned out to be a deception after
years, and his producer was sent to prison. In addition, for the final confirmation
of the diagnosis, the professor wanted to refer me to a muscle biopsy, but my father
did not agree. As it turned out later he was right, because the biopsy is painful and
the symptoms of the disease were clear. Currently, it is easier, because there are available
DNA code tests. In addition, the professor warned us not to seek help from quacks and paramedics.
After ten years and several visits to quacks and herbalists who could not cure me,
it turned out that she was right.
During this difficult time, the parents of other children with the muscular dystrophy
who were in the waiting room of the Musculoskeletal Diseases Clinic were the ones who
most comforted us. They told my dad, that he would not worry too much, because the son
will not die so soon, you will still enjoy all this. At home everyone was sad when he
found out about my illness. My parents, my sister, my grandparents (my grandpa had always
had tears in his eyes when he talked about me) and distant relatives experienced my state
very much, and paradoxically I, least of all. I knew something was wrong, but I tried
not to think about it and thought it would not be that bad .. In the meantime, I started
studying at Primary School No. 4 in Wołomin. Unfortunately, my class was upstairs, so
I had to bother climbing the long and slippery stairs.
The first years of my life passed me happily, I lived in a house on the suburbs of the city with a large
garden full of flowers my grandfather kept growing.
I will present a continuation of my biography in the form of a calendar.
1983 (age 8) For me it was a turbulent year. First of all,
I started rehabilitation at the Bródnowski Hospital in Warsaw because there was a swimming
pool with hot water. For several years I drove there with Dad five times a week. During this
time I had a rehabilitation in the pool. In addition, at the beginning I went to a manual
massage, exercise classes and underwater massage. Doctor Mackiewicz dealt with me. Thanks
to him, I probably live for so long, because on the last visit he told my parents that
if I do not move, stand up and rest during the day lying down, when I sit in a wheelchair,
my kidneys, liver, digestive system and respiratory system will stop functioning at a rapid
pace and consequently endanger my death. My Dad decided not to let this happen.
In May, I went with Dad to the sea as part of health improvement. In addition to pleasant
moments from the sea, I remember some unpleasant moments. Well, walking along the promenade,
I sat on the way on every bench. Then I found a long pine stick with which it was easier for
me to walk. My dad warned me not to walk with it, because I would break my leg. I did not listen
and sprained my ankle. I stumbled over the stick, then the foot bent inward. Then I barely
walked for a few days and it hurt a lot. With time, I had such sprains more often and always
a week I was not able to walk.
In order to regain health, I bathed in the hay and drank horrid nettle juice. At the time,
I was falling frequently, and in the summer I had heavily thrown legs full of scabs.
Then there was another trip to the sea, this time the whole family.
At the end of the year, my parents decided to send me to a rehabilitation sanatorium
in Ciechocinek because I needed treatments including the pool and I would not have
to commute to them. I did not want to go there because it was a trip without my parents.
However, I had no choice. I remember my stay there very badly. Besides, I did not do all
the treatments for fear of catching a cold. Therefore, Dad took me home before
the end of the stay.
1984 (age 9)) Dad gave up his full-time job and started to set up his own company to be close to me and take me to school. Mum still went to work full-time. In March, I fell down terribly hitting the floor with my nose. I experienced a spasm of the nasal septum and walked a month with a blue nose. In May I was to receive the sacrament of First Holy Communion, and therefore our priest was very much in charge of the presence of religion in the lessons. However, at my sight, he stated that if someone is so ill, he does not have to come. During the celebration of Holy Communion I had a special place near the bench in case I got tired and would fall over. Fortunately, everything happened without accidents.
In the meantime, I helped Dad in making bricks to build a workshop, i.e. I switched on concrete mixer and other equipment.
In the summer I went with my mother and sister to Bieszczady mountains. It was beautiful there and we walked a lot on different hills. I think now that I was walking too much and I was over-straining my muscles, which could have faded faster. Once we went on a trip to the open-air museum and I could not keep up with the trip at all and my mother had to carry me in the end.
From September, the beginning of 3rd grade, Dad took me to and from school every day, and in the middle of class he came and went to the toilet with me. In addition, at the request of my parents, my class was transferred to the ground floor, so that I would not have to go up the stairs.
By the end of the year, I was going worse and worse, and my falls were more frequent and heavier. My parents started talking about a wheelchair for me, but I did not want a wheelchair or even hear about it.
1985 (age 10) In 1984, a friend recommended that we visit a neurosurgeon who, in turn, directed me to the Children's Health Center. My parents also hoped that doctors would leave me there and implement treatment for muscle wasting. I, however, prayed that I would not stay in the hospital. The doctor made my parents realize that dystrophy is incurable and he can take me to the ward, but they will not do anything to me. My parents took me home and they were sad, and I was happy.
Finally, it's time to get a wheelchair. One day in March Dad brought a cart and I got offended and did not want to try it out. In the end, I let him talk and I liked it because I did not have to bother and tip over. However, the wheelchair was too small because the child and Dad exchanged for a bigger one. This exchange lasted for 3 months and maybe it's good because the later you sit on the wheelchair the later other unpleasant symptoms will appear. While waiting for a bigger cart, it seemed to me that I could not walk anymore - it was good for me on the wheelchair.
I also had an accident at the pool because I rolled over in the shower and cut open the beard that had to be sewn together. Fortunately, the pool was in the hospital, although at the beginning we were told to go to another hospital, but everything ended well. From then on I sat on the stool in the shower.
This year I did not have the strength to ride a bicycle anymore.
On the day of my birthday, May 3, I was doing very well and I think it was the last time (then I went worse). Grandma also ordered a Holy Mass. for my health, and from then on until her death, she always gave me a mass on my birthday. Grandma and grandpa prayed for my healing a lot. In addition, in May my grandmother organized prayers of the whole family for my health. I know that thanks to this I may not have recovered, but I have lived quite a long time and relatively healthy.
Then it was the end of the school year and for the first time I "stepped out" in a wheelchair, which caused the cheerfulness of my friends and colleagues. From the next school year, I moved on such a trolley permanently in school.
During the holidays, we visited the Marian sanctuary in Licheń, where we search to calm and heal me. Since then we have been making car pilgrimages to various sanctuaries and I believe that this also contributes to extending my life.
Then my parents arranged for me a wheelchair to move around the apartment with the help of the so-called legs. walker. I did not want him either and I took offense at my parents. Then I liked it. I used it at the beginning for verticalization too, until I got too weak and I did not have too much contracture.
Throughout this year, once a month, I drove with Dad to a bioenergotherapist who had some power, but only Dad felt it. Between visits I have been practicing a lot so that the energy of this master would work better. Unfortunately, there was no improvement, but rather a deterioration. So we gave up this therapy. In addition, Dad began to stretch my tendons in my feet and put them in the position closest to the correct one and I stayed there for a few hours. It was a rather painful and ineffective procedure, although contractures may have been slower.
At the end of the year I almost stopped walking and one day in the evening the following year, after a long break in walking, the last time in my life I went to the other room, which I did surprise my dad. Years later he told me that he thought then that I must go the last time in my life it got him sad. At the end of October I caught a cold and got seriously ill with bronchitis. By the end of the year, I took 5 different antibiotics and I was still sick.
1986 (age 11) At the beginning of the year I already had pneumonia and got the strongest antibiotic that was then on the market. I healed, but after another week there was another bronchitis. It was like this for spring, ie 2 weeks of illness, one week of health. At school I had a lot of arrears that I had to make up for at home. In the end, we went to another doctor, who gave me a weak antibiotic and something stronger to expectorate. After the expectorant, I vomited the whole day with a black secretion. I recovered quickly and was healthy until autumn. At the end of the year I finished rehabilitation in the pool because of colds and that I stopped walking and it was getting harder and harder to put me in the pool.
At that time, my parents had to start waking up at night because I stopped walking, so they had to take me to the toilet, toss, etc. At first I could not toss, but in my dream I could do it. Later, this skill also disappeared. On holidays and days that I went to school later, Granddaddy always dressed and fed me, helping in this way also my Dad, who had to work in the workshop. I owe much to Grandfather. In a difficult time, when I stopped walking, he carried me, sat with me, helped me, talked about old times, entertained etc.
At that time, my sister's schoolmate urged me to participate in the religious community of people with disabilities "Faith and Light" in which he himself acted. Initially, I did not want to belong anywhere, because I did not feel disabled and I do not feel so far. In the end, I tried and liked it. I met new friends there, I went on trips, retreats and rehabilitation stays, and my parents exchanged experiences with others.
At the end of the summer, I received a hard-to-reach herbal medicine for immunization from my doctor. After it I was healthy all winter.
1987 (age 12) My parents started pinning me with seatbelt to the wheelchair, because one day I fell to the ground as a result of weak muscles. Fortunately, nothing great happened to me.
During the holidays, we were in the sanctuary of the Mother of God in Jasna Góra in Częstochowa. After returning from there, I got an appendicitis. I struggled for 2 days before the doctor recognized what was wrong with me. I came to the hospital with a broken appendage, which made the treatment last longer and was more difficult. At the hospital, I had to manage myself. Fortunately, my parents could be with me four hours a day, and besides, I was still physically quite fit. During the time I was in hospital, my sister renovated my wheelchair.
After leaving the hospital, I slowly recovered, and Dad started practicing me in the morning and evening. We do this gymnastics today. It involves moving my legs, arms, head and sitting down and massaging.
Then we went on holiday to the sea to Międzyzdroje.
In addition, this year my Dad was doing the changing sector of operation of his company, which was not easy or fast.
The aforementioned sister's colleague joined the seminary and often visited me, and I was very happy because then hardly anyone came to me.
1988 (age 13) In January, I slid off the wheelchair while lighting the light and I kneeled with all my strength on one knee. It hurt my knee for 2 weeks especially when I was exercising and getting into the car. Later, I understood what my illness was and began to worry about my future. What will happen to me, will I go to some school, what will be like my parents will not have the strength to lift me, etc.
In April, it turned out that my mother is seriously ill and must go to the hospital for surgery because she is at risk of cancer. My worries were even deeper, so I prayed for Mama's health a lot. Fortunately, the operation went well, and the tumor was benign. Then Mama slowly recovered and was at home on vacation. She walked with me for longer and longer walks, and I was glad that he was getting better.
In September, my grandmother got a stroke. Fortunately, thanks to quick help, after a month's stay in the hospital, she returned home in quite a good form.
1989 (age 14) I started to be interested in politics, the more so because in Poland the transition from communism to democracy began.
In the summer we were in the Marian sanctuary in Jasna Góra and on holiday in Darłówko by the sea.
In September I started the last grade of primary school, so I had to think about choosing a high school and study for exams.
During this time, the law changed and one of the parents could have taken early retirement to look after a disabled child. My mother took advantage of this law, but she did it very reluctantly, because she was still quite young at the time, and suddenly she had to become a pensioner.
1990 (age 15) At the end of January died my grandmother on the part of my mother, so my parents went to the countryside for a few days to organize a funeral. I was under the care of my sister, my grandparents and my godfather. Immediately on the first day, I fell off the trolley while descending the stairs. Fortunately, nothing happened to me, only my sister had to drag me onto the couch.
The time has come for me to choose a high school. We chose the First High School in Wołomin mainly because the school building had only one floor and most of the lessons were held on it. Thanks to this, I had to use steep stairs less often.
At Easter the grandmother got another stroke after which her health deteriorated a bit, but she was still doing quite well.
In June, I accepted the sacrament of confirmation in the church of St. Mary of Poland in Wołomin.
Then I also passed high school exams, which were successful and I was accepted.
In the summer I went to the Tatras for the first time with the community of the disabled "Faith and light" for a retreat with the priest. It was very nice and cheerful, there was a mass every day. and fun, bonfires at night and walks mainly in the mountain valleys.
In September, I began to study at the First High School in Wołomin. I was well received by my friends and colleagues. I met new friends with whom I keep contacts to this day.
At that time, Dad noticed that I had a lateral curvature of the spine (scoliosis), so he started supporting me with stiff pillows from the side because I had too wide wheelchair. Thanks to this I avoided serious curvatures. It turns out, however, that he started doing it two years too late. In addition, I lost the ability to move around with wheelchair with legs .
1991 (age 16) This year I lost the ability to raise my hands with a spoon or glass to the mouth. As a result, my parents had to start feeding me and I use a plastic straw to drink. I could brush my teeth with my backed hands.
In April, my father's company lost a lot of money as a result of economic changes in Poland and went bankrupt. Fortunately, there were no debts left. My father got heart disease then. He began to heal, and he had various tests throughout the year. As a result, it turned out that he had to go to the hospital for surgery. My worries deepened and I prayed for Dad's health a lot.
At that time my grandmother's acquaintance - Mrs. Wiesia - decided to start helping disabled people and brought in used rehabilitation equipment from abroad. I owe her a lot. So far, I have a wheelchair that I think is the best. In addition, she transformed the community of the disabled "Faith and Light" into a foundation. Organized equipment, trips, summer recreation, etc.
This year I also had a dog that unfortunately died in the summer. I survived it very much and decided that I would never have animals again.
Besides, Dad bought us the first computer for the last money.
1992 (age 17) In January my father had an operation and on the same day Granny got a stroke and they were in a hospital together. Then I was worried and prayed twice - for Grandma and Dad. Prayers have been heard. Dad's surgery was successful, and Grandma survived, though she had extensive complications. At that time, my mother and my sister took care of me, and my mother and my godfather went to the hospital. After returning from the hospital, Tata was ill for a long time because he had a cold in the post-operative room.
In May, my grandmother got 4 stroke and unfortunately died this time. I was wondering how it will be now, because my grandmother was always and knew everything. The grandfather experienced the most, because he lost all sense of life.
In June, my dad went to a new job, again full-time.
In the summer I went on holiday organized by Mrs Wiesia.
1993 (age 18) I celebrated my eighteenth birthday with school friends in my home.
In August, we were with Mrs. Wiesia in Wadowice, Kalwaria Zebrzydowska and Cracow.
1994 (age 19) This year I lost the ability to put a school briefcase from my knees to a bench. Colleagues have helped me in this from now on.
In January I fell ill with a serious flu that I cured only in June. At the end of January I had a pre-graduation ball on which I was not yet cured, but it was nice.
In May, I passed my final exams. I passed it successfully and in June it was the ceremonial end of high school. Everyone was urging me to go to university. However, I decided not to continue my education (for health reasons and life expectancy), only a little take advantage of my life. Besides, there was no university in my town.
In August, my sister was getting married. With the organization of the wedding and reception there was some confusion, but everything went well.
Then we left with a disabled group at the lake.
1995 (age 20) This year my Granddaddy was seriously ill and had to pay a lot of attention to him.
During the summer I had a car pilgrimage to Jasna Góra with my parents.
I've had dental problems all year long. These were not ordinary problems, but until now I wonder if they were not associated with muscular dystrophy. Well, the bottom one peeled off the gum and it hurt a lot. Before it turned out that I have too shallow the oral cavity it has been half a year. By the way, it turned out that I have 3 instead of 4 lower incisors and an open bite. Besides, I've had these problems for many years. I went through an unpleasant, costly, laser procedure for deepening the gums. Since then, the pain has stopped and I have no major teeth problems. Only the one without gum is getting dirty.
1996 (age 21) This year I lost the ability to use a computer keyboard, so I only had a mouse left. I made all the writings using a primitive virtual keyboard. I have been doing this so far with the difference that I have a very good keyboard.
In April, my niece Agnieszka was born. There was a lot of joy and happiness at that time.
My grandfather was still ill, so if he wanted to go somewhere in the summer, someone had to stay with him.
Therefore, once I went with Dad to a rehabilitation stay organized by the Muscle Disease Management Society (then for 3 years my Daddy acted a little in it) to the sea to Mrzeżyno, and the second time with Mama for a sanatorium to Busko - Zdrój. In Mrzeżyno, most of the patients moved with electric powered wheelchairs. Everyone was urging my dad to buy me such equipment. After returning, Dad started to look for such a wheelchair.
When I was traveling with my dad to the sea, the car broke down all the way, but driving 60 km / h we happily went both ways. Then there was repair and re-lapping the car. I really liked lapping and from now on I go with my parents for car entertainment around the area. Then I correct the maps on the computer by applying new roads.
Then there were the niece's christenings.
Then go with Mama to the sanatorium.
In December my grandfather died. Then there was a funeral at which, unfortunately, I could not be due to a cold.
1997 (age 22) At the beginning of the year, I received a damaged electric wheelchair from the foundation for disability relief. Dad found a company repairing wheelchairs in Warsaw. He bought a used driver there and ordered a used, but decent, off-road electric wheelchair. I started to drive around the apartment and I was glad that I could go wherever I want, although it's not the same as walking though. I made the wind and ripped the carpet. At the time, in order to make me sit and control better Dad made me a stabilization board to put together with the pillows on my sides. In May, Tata bought a second electric cart. Unfortunately, he had to put on the weaker spring for the driver, because I had no power to steer. In autumn, he warmed my hand, because when I was cold, I lost all my strength.
In the summer I was again in Mrzeżyno (with an electric trolley) and in Busko-Zdrój, moreover, we visited several Marian sanctuaries and other places. In the sanatorium, we got acquainted with Mama, a neighbor from Wołomin, who was there with her daughter. After returning, we met the rest of their numerous and singing family. Later, I often visited them on my own with an electric wheelchair and even went for walks.
1998 (age 23) In August, we were once again in the rehabilitation camp in Mrzeżyno. I met there wonderful physiotherapists, who were socializing me. In addition, they carried out a spirometry test, It all took an hour, because judging by the sad expression their face was going wrong. I left the office breathless and broken due to spirometry. Life capacity was less than a liter (much below the norm), measured only after many attempts. I realized then that probably more serious respiratory problems would begin soon.
1999 (age 24) This year I lost the skill of writing handwritten, brushing my teeth and moving my hands around the table (making it difficult to read books)
First of all, my nephew Wojtek was born. In August, I became his godfather . It was a big event for me, considering my condition.
Besides my Mum had to go to hospital for surgery in the summer. I was very worried about her and prayed for recovery. Everything, however, ended successfully and Mama returned to full strength.
In May, we were at the priestly ordination and the first mass of our friend helping the disabled people.
I was with my mother in Gdansk for a retreat with a priest. The above-mentioned neighbor persuaded us on this trip. I really liked it there. It was there that I fell asleep during the organ concert. Later it turned out that it was the beginning of my respiratory problems. At that time, in my father's home, he had to go to the hospital, but before our return he left and came for us with my brother-in-law. Later there was another trip to Mrzeżyno. This time we took a three-year-old niece and we had fun in.
2000 (age 25) This year I did not go anywhere because I got tired of rehabilitation stays. It turned out to be a mistake, because later my condition got very bad and I could not go anywhere. In return, we did one-day trips. We visited several Marian sanctuaries and other places. I also rarely used an electric wheelchair and it was harder and harder for me to do it.
In March, my godfather died.
In August my friend from high school invited me to a wedding. I was there and met other schoolmates.
Slowly and imperceptibly, the respiratory problems grew during this year. I started to fall asleep more and more during the day (this took place in an uncontrolled way). Some of my habits have also changed. Whereas before I could never sleep during the day, then I started to fall asleep quickly and quickly. On the skin, lips and tongue began to gradually appear in my various infections (lichens, thrush, herpes, mycoses, etc.) probably associated with hypoxia of the body. After eating each meal hypoxia deepened for some time (this ailment is repeated so far). As a result of filling the abdomen with food, breathing became difficult. Every evening, immediately after falling asleep, it seemed to me that something was throwing me, and then I woke up breathless and sweaty. In the morning, on the other hand, from day to day, Daddy had to do gymnastics, i.e. bending on the bed from a lying position to a sitting one, because my heart was beating very quickly, my head ached, I was sweaty and I was saying stupid things. These exercises apparently had the role of artificial respiration only, that's when we did not know it at the time. I found it difficult to use the computer because it was worse for me and my head hurt. Imperceptibly, I began to reflexively support my breathing by rhythmically moving my head back and forth. However, it was possible only in a sitting position.
2001 (age 26) This year I lost the ability to control the electric wheelchair. I felt like I lost my ability to walk a second time.
This year the symptoms mentioned in the previous year have significantly increased. Also joined by heavy lung infections and problems with swallowing food, which often fell into my windpipe and strangled me. Anyway, I still have problems with this. In addition, my parents could not leave me alone, even for a moment.
Then I began to ask myself - is it the end of my life? Why now, at such an inopportune moment? I do not want!. Such thoughts haunted me despite the fact that I knew how hard I was ill and that my life was approaching eternal life.
My parents could not come to terms with my leaving. Particularly, Dad started looking for help at the Warsaw Hospice for Children, to which I was admitted. The very thought that I was so sick to die soon was unbearable. The word "hospice" aroused fear and reluctance in me. I remember myself saying to Dad, that he could still wait with this "giving" me to the hospice, that for sure these problems are temporary and I will be back to normal. However, I was positively surprised by the kindness and directness of the hospice's staff, unheard of in other institutions. Everyone at WHD wanted to get to know me and my problems to help me better, and I wondered why anyone had a relationship with such a "dead man"? Dad thought maybe they would use a respirator or other device.
When from the Internet and other media I learned how the respirator works and what the life of patients connected to this equipment looks like, I started to look for other solutions. Doctors from the hospice offered me the so-called oxygen concentrator. Unfortunately, the attempt to breathe oxygen in my case failed. My body reacted with impaired breathing, so I felt even worse.
The most difficult for me and my parents was to survive every night, because I was losing my breath every 5 minutes, and my parents helped my breath in a different way, squeezing my chest. However, during the day I fell asleep and losing my breath even when eating! Because of this night wake-up, I was notoriously sleepy (like my parents), which made my condition worse.
In June, I accepted the Sacrament of the Anointing of the Sick with poor faith in improving my health ... and already in September I felt better. Why, then, did I feel better? I believe and I am sure that this was done by the power of God through the Sacrament of the Anointing of the Sick and a prayer for many relatives and acquaintances for me (which I learned much later). This Power influenced my dad, who decided to make a device to support breathing (especially the exhalation). For this purpose, he went to a car junkyard to buy a wiper motor. The man from the scrap yard asked Dad why he needed these engines. When he found out, he was astonished and reluctant to accept the idea. He told Dad to take me to the doctors rather, but eventually he looked for these engines. Dad made of them and other available elements a device that presses the lower ribs and thus supports my breathing.
I must add that my Dad is an electronics. Someone may say that it was easier for him to do this invention. That's true, but after all this device did not have to help me.
I feel much better because my breath is helped. Unfortunately, I have to lie under the device like under the press all night in one position. Everyone from the hospice raved about this device. The first person from the hospice who saw them was a new chaplain, Father Benedykt. In an interesting way, so we met. At first, I lay only at night under this device, because I claimed I was still healthy and I do not need any support during the day. However, even during the day I needed to support the exhale and quickly started using it also during the midday rest.
In addition, since the improvement of my health and better oxygenation of the brain, everything has changed and I even regret that I have not become a protégé of the Warsaw Hospice for Children before. I will add that it is a home hospice, meaning a sick person lives at home, and doctors, nurses and other employees come to him.
Besides, my Dad retired.
In May, thanks to Mrs. Wiesia, I went to Dźwirzyno with my parents and niece to the sea. It was fun except that I fell ill, l had an antibiotic, suffocated and felt ill.
In July I fell ill even more seriously, and in August I went to Gdańsk again for the second time with Mrs. Wiesia and disabled friends from Wołomin. I felt much worse than in May, all friends thought that I did not have much life left.
When we started the journey by car, we stopped and we daddy. Finally, he wrapped me in a towel and told Mama to pull her towel from the backseat, thus oxygenating me. Unfortunately, the seat got torn, so for the next trip Mama made a belt instead of a towel from the car belt.
In November I met a patient of my hospice Kasia on the Internet. Kasia had a severe heart defect from birth and was daily on the verge of life and death. She was much more ill than I was, yet she studied and even traveled abroad. She was a person who was deeply believing in God. At the time when I met her, she wrote a master's thesis on the subject of human garbage. We planned to meet in person in the summer.
2002 (age 27) At the beginning of the year, I got sad news of Kasia's death. A few days earlier she had managed to defend her master's thesis. We will probably meet only in the afterlife. Then I read her work and learned more about her difficult life and how people treated death over the centuries and what cemeteries and burial rituals looked like.
Father Benedykt proposed to me that the cleric Tomek would visit me. I quickly agreed, and for several years Tomek came and talked about both difficult and trivial matters once a week. It was quite funny.
At the end of April, my father designed a breathing device for me by pressing on the diaphragm, into a wheelchair, because I did not feel well oxygenated when sitting. After all, I did not want to use it at first, because I thought I would manage myself.
In the summer I took up the creation of an electoral website for the mayor's candidate and his electoral committee. Everything was successful, because the mayor was elected.
In September, a sad news reached me about the untimely death of Mrs. Wiesia, who helped many needy people. Over the following years, I learned about the death of many friends who prayed for my health in 2001. I wondered then why I am still alive and they are not.
2003 (age 28) In January, my father started to put in a daily breathing device for a household wheelchair with a handheld stand. In addition, the stroller adapted to set up this device.
In February I got serious flu. Immediately at the beginning of the bronchus I was blocked by a secretion, so I suffocated. At that time, the Warsaw Hospice for Children bought cough assistors, devices that would facilitate coughing up. Initially, this device was set up in accordance with the recommendations, but the anoxia increased. The doctor took my mother into the hallway so that I would not hear and say I could die. However, I guessed everything. At last one night I lost consciousness. Dad put an assistor so that he could draw air out of my lungs. Slowly the bronchi got stuck and in the morning of March 2 I woke up. Without the assistor, my life would end.
At that time, the hospice patient with DMD died. It was a depressing event for me.
In March my mother's auntie died, who before her death told my Mum to look after me very much.
In July my nephew Michał was born.
Then Dad made me a device to help breathing into the car. In this way Mama was released from oxygenating me, and even we can ride without her.
In September my niece started going to school.
At the end of the year, my nurse Kasia got married. I was with my parents at her wedding and I went out there covered with a blanket because it was very cold in the church.
2004 (age 29) In April a lot of volunteers came to the hospice, so Dominik started to come to me once a week. We talked a lot, watched films and went on long walks in the summer. Then another actress, Kasia Groniec, who changed my image of the actors, joined me. So I was very happy.
My nurse Kasia stopped taking care of me temporarily. During this year I had three more. Ultimately, Małgosia became my nurse.
Besides, Dad made a spare backup device for the wheelchair.
In May a friend from high school invited me to a wedding. It was a very beautiful ceremony on which I met many friends.
In the summer of my first nurse, a daughter was born. At that time, my dad's friend said she knew a boy suffering from muscular dystrophy who has a very sad life. Daddy for a time urged his mother to come to the Warsaw Hospice for Children, Przemek will be able to use life much more. Przemek was admitted and quickly became friends with other charges of the hospice - dystrophic sufferers - Karol. They were both brothers. They went together for matches, concerts, summer trips, trips and bonfires. Besides, they had a lot of friends.
From September, the nephews were more often with us because my sister came back to work.
In October I had an interview with the editor of the newspaper and, among other things, thanks to it, this web page was created.
In November, after the All Saints' Day, I got seriously cold and I was seriously ill for a whole month.
2005 (age 30) I slowly began to become a veteran of the hospice because I had passed the fourth year since I became his patient.
In May there was the sacrament of First Holy Communion, my niece, Agnieszka.
In June, Dominik offered me a second volunteer, Tomek. Tomek came with a very fast motorcycle and so I went with two volunteers for walks. Then most of the drivers passed us on the lanes.
In August we went with my parents to the aforementioned Karol who was sick with what I was. We met and talked a bit. Then a little less, because volunteers came to Karol Dominik, Tomek and Wojtek from the hospice. Later in a similar composition we were at the cinema in Warsaw. In September, all my volunteers visited me and we shared a walk. This was the last meeting in such a group. From the new year Dominik changed his job and did not have time Tomek probably did not have time either.
This year Kasia returned to work in the hospice and again became my nurse.
2006 (age 31) In May, Karol's parents organized a campfire for the muscle wasting patients who were under the care of the Warsaw Hospice for Children. I was there with my parents as well as Karol, Przemek, two Łukasz and a lot of volunteers. Then Karol and Przemek left for a pilgrimage to Rome.
In July, just two months after the campfire, I learned about Karol's death. We were at his funeral. Despite the beautiful weather, church and the priest's sermon, we were rather depressed.
In August, Dad made another device for me to help breathing on the wheelchair. This time pressing me on the ribs, because at the previous device at the end of the day I felt bad.
At the end of the year, I started to belong to a small group of 5 hospice patients who exceeded 2,000 days in his care.
2007 (age 32) In January my friend Przemek died. We did not know each other personally, but we had the same volunteers. Twice we saw each other quite close once at the campfire at Karol, and the second time at Karol's funeral. Besides, we knew each other from stories and TV reportage.
Later, the psychologist came to me with Gabriela, an intern from Romania. Gabriela works in a hospice for children with AIDS. We talked very well and we became friends. Then she visited me again before returning to her country and from then on we keep in touch.
At the end of March I underwent a serious cold and I was taking a strong antibiotic. In the middle of May, however, I brushed myself to death. It all started with abdominal pain and digestive problems. I was sick all day and night. In the morning a doctor came and at the time of the examination I vomited and everything fell straight into my lungs. My face was blue and I lost consciousness. Then Dad and the doctor began intensive resuscitation using a cough assistor and a mammal. They barely helped me, but for a few days I was on the edge of consciousness. I do not remember these few days. It turned out later that my kidney ached from her inflammation. Because of that, I had vomiting and finally I had my stones removed. I made all this a mess at home and in the hospice. Similar to that from 2001. After several weeks of health deterioration, I recovered.
In 2 weeks, at the descent from the curb, my head flew back and I strained the cervical spine. For over a month I was tired of pain and numbness in my hand. Dad decided to install a headrest for my wheelchair. First, he tried on a standard headrest from another wheelchair, but found that it took too much space and was put on for a long time. So he made the headrest from the ordinary plywood inserted behind the back (see Gallery). Again, it turned out that I should start using the headrest a few years earlier.
In June, I learned from Father Benek that he must leave the hospice and take care of other duties. It was a sad message for me, because he always supported me in difficult times and I have not met a second such priest. It was worth meeting him.
In July, for the first time in six years, I was able to spend a great holiday by the sea with my parents.
In September I had an unusual visit of a dentist from the clinic at the hospice in my home. She was repairing my tooth at home.
In October, a new chaplain, priest Rafał, started work in the hospice. I must admit that it was difficult at first, because everyone compared it with the predecessor. I got used to it quickly and before Christmas, the priest said Mass at my house. It was an interesting experience for me.
2008 (age 33) I wrote this biography throughout January.
In mid-February, a seemingly innocent cold caught me. It lasted a week. I had a cold and a headache. I got well and I was already happy. Then I suddenly got a fever that kept me for over a week. I did not have a cough or other symptoms, I was losing my respiratory capacity overnight. After a week, I almost stopped breathing. It turned out that I have to take an antibiotic. I slowly began to recover, but it took quite a long time. Besides, it was better for me to start after receiving Holy Communion.
Then came the spring and I started the "cruise season", details of which are in the gallery.
In May there was the First Holy Communion of my godson Wojciech.
Later I had another cold this time lighter. However, through them I lost many warm June days because I could not leave my house.
In August and September I was visited by a volunteer Ania.
At Christmas, Fr. Rafał celebrated Mass. This time, my nurse Kasia with her daughter and my sister and her family also took part in it.
2009 (age 34) This year I have exceeded 3,000 days under the care of the Warsaw Hospice for Children. Before Easter, Fr. Rafał celebrated Mass. in my house. Docent Tomasz Dangel from the hospice was an altar boy, and the chairman of the city council in Wołomin and we and my sister and her family participated in it. It was very solemn, beautiful and nice.
In June, I was visited by well-known film producer Peter Fudakowski (producer of the movie "Tsotsi") along with docent Dangel. Peter Fudakowski conducts charitable activities.
However, priest Rafał was appointed a parish priest, so he stopped working in the hospice. Now, the chaplain of the hospice is priest Wojciech.
In September, a psychologist with a doctor from Croatia came to me. In addition, I visited Fr. Rafał on the new parish.
This year I wasn't practically ill. This is due to doctors from the hospice who have scientifically and in a new way approached the body's immunity. They used appropriate dietary supplements for me, which I have been taking regularly and regularly for over 1.5 years.
In Christmas, priest Wojciech celebrated Holy Mass. especially for me.
2010 (age 35) This year, 25 years have passed as I move in a wheelchair. I must admit that I became accustomed to and became familiar with this vehicle and hardly notice it.
Swallowing problems have worsened, namely the loss of food into the lungs. Therefore, every meal has become stressful for me, I eat less and only at home, which makes any trips difficult. I eat most of the meals in ground form, and yet sometimes I choke.
In August, I was visited by docent Dangel with a mediator from Armenia, whom he met there during help for saving children after the earthquake in 1988. Docent was awarded for that.
By the way, the docent offered me to feed me through a special tube into the stomach. I agreed to try, so Kasia's nurse came and showed my parents how everything should be done. Overall, the test was successful, but you do not feel the taste, saliva is released, which I choked and is needed in digestion. To sum up, this is an unpleasant necessity, but for now I decided to avoid such feeding.
In October, a former Dominik volunteer spoke with a good news for me that he is going to be back. So from November, he started to visit me this time together with his wife. I like them very much.
2011 (age 36) During holidays, I had difficulty eating. I was fed up with choking and for 2 days I was eating through the tube. However, I wanted to eat normally and I would eat normally until May. Then a large part of the sandwich fell into my lungs and we struggled a long time to get rid of it. From that moment, I eat breakfasts, suppers and sometimes dinners by the tube. It changed our lives. My mother prepares every meal for me for half an hour, then my dad puts in a tube and my mother helps. Inserting the tube, however, is not a simple matter. He wraps around very often and enters the mouth, or worst and most unpleasant to the trachea. Then there is a terrible gag reflex. Sometimes you have to try putting in several times before you can. Then I'm very tired and choked with saliva. In conclusion, tube feeding is faster and I have almost clear airways and no food-related stress.
In May, 10 years have passed since I was a patient of the Warsaw Hospice for Children. I am very long and I am happy about it. On this occasion, I wrote an article to the WHD informant.
In July, I was fed away with a tube during a trip. Everything went well.
In addition, because of the increasingly shallow breathing, I have difficulty speaking. It's hard to understand me.
2012 (age 37) This year brought a certain stabilization of health. In June, I switched to feeding only by the tube, because I had difficulty swallowing. Since then I have sometimes tasted different foods :) I discovered that I can eat ice cream. We have already mastered the tube enough to sometimes go somewhere else.
Dominik and his wife visited me several times, this time with their little son :) Thanks to this I can watch how he develops.
2013 (age 38) Overall, this year was not bad, but it was not without unpleasant incidents. They were mainly related to problems with speaking, because so far if there was any failure of the device supporting breathing, switching off the power, or something was not right, I was able to let you know. In June it turned out that in this situation I cannot call anyone. There was a power failure and after a few minutes I lost consciousness. At this moment, my nephew noticed this and started to save me, then my parents. It ended happily.
Over the summer I had several similar events with other devices. Dad repaired them in connection with this. Besides, my parents and everyone now have to watch me very carefully. In addition, by the bed I have an infant breathing sensor. I owe this idea to my nurse Kasia from the hospice. I am very grateful to her because I do not have to worry about a failure during sleep.
In March Maciek, a new volunteer from the hospice, came to me. It's very nice when he comes. He tells me various interesting things, we were on a walk, etc.
2014 (age 39) This year, problems with speaking intensified again. I can utter short words only with breathing support, and it's hard to understand them anyway.
After each feeding I have to lie down and remove the secretions from the bronchi. Therefore, I cannot eat during trips and therefore I travel 100 km from home for a few hours. In addition, because I do not swallow saliva, sometimes I choke on her. Especially when sitting at the computer.
On May 18, I was at the ceremony of 25 priesthood priests Rafał, a former hospice chaplain. A wonderful ceremony and will remain in my memory for a long time.
On May 31st I was at the Spartakade of disabled people, of course as a fan. I met many friends from the help foundation with disabled people from my city. It was very cheerful and nice.
In September I was at Mass. on the occasion of the 20th - the anniversary of the Warsaw Hospice for Children. It was very beautiful, I met many friends at once. I was happy and satisfied and I will not ever forget it. On the way, at one of the intersections, I met my volunteer Maciek, who directed the guests to the place of the ceremony. The meeting was a nice touch.
2015 (age 40) This year I celebrated my birthday more solemnly. That's why because of the fact that I suffer from Duchenne dystrophy, the achievement of this age is a great success. I invited the closest family and a few people from the hospice. It was funny and affecting. I felt very happy.
Because I am a railway enthusiast, in May I went with my parents to a train trip to Warsaw. We traveled by Fast City Rail from Sulejówek to the Chopin airport. I was very pleased. By the way, we visited the airport and watched the planes.
In June, on the other hand, we made a trip with a newly built second metro line in Warsaw. We got off at Nowy Świat - Uniwersytet and visited Krakowskie Przedmieście and watched a change of guard at the Tomb of the Unknown Soldier
I also had some health problems. Well, from April to September I had trouble sleeping. From the evening to 3 o'clock in the morning, I hardly slept. I woke up every 10 minutes, choked with a secretion that had to be removed. As a result, my parents and I were still sleepy and very tired.
Finally, one night in September my father decided to watch me while I was sleeping. Then it turned out that I had sleep apnea caused by the inertia of the tongue (with the mouth open) and the clogging of the airways. In addition, I sleep only on the back, which promotes the formation of apnea. A few days we were wondering what to do with my nurse Kasia. Kasia came up with the idea to somehow push my lower jaw forward. At night, my father first manually pulled out and closed my jaw. I started to sleep peacefully, without apnea! Then he temporarily tied my beard with a string and rubber. I slept the rest of the night peacefully without waking up. The next day, my father improved the fixing of the device. See photo next. From now on, problems with apnea have ended and I am eager to sleep in this equipment.
2016 (age 41) This year, two health problems have intensified.
First, I lost my voice. I speak only single words in a whisper only when breathing support is on. Because of that I have difficulty communicating. Even parents often do not understand what I mean.
Secondly because I cannot swallow anything even saliva, so everything is getting in my throat. Often when attempting to expectorate the secretions, it falls into the trachea. Then in a dozen or so minutes I start to choke. The only salvation is physical therapy using a cough assistor, preferably on the bed at home.
On June 12, I experienced such an event 15 km from the house in a supermarket. I choked out still in the store. In the car I began to choke and I lost consciousness. While driving, while I was unconscious, my father would stop every few kilometers and put a heavy strain on my chest, but the secretion blocked the trachea and only slightly moved up and down blocking the air flow. I regained consciousness only at home on my bed when my dad reanimated me with an assistor. I felt bad for the evening, my head and ribs ached and I was very cold despite the warm weather.
After this event, I was afraid to leave the house and even go out for a walk. Fortunately, the hospice came with help again. I received a cough assistor battery-powered. Therefore, after a month I dared to take a car trip. Nevertheless, I must be careful not to choke.
Despite these unpleasant events, I went with my parents on a train trip to Warsaw. We traveled by Fast Urban Railway from Legionowo to Chopin Airport. In addition, I managed to make several trips by car or bike and a lot of walks.
In November I met a new volunteer from the hospice. From that moment, Artur began to visit us. He is a good and interesting man.
2017 (age 42) This year, my health has stabilized, i.e. there was no significant deterioration. Other events, on the other hand, made it the worst year in my life and my family. Especially spring and summer.
Well, in the middle of May, my mother found out that she has advanced cancer and it is in a place that excludes treatment. Left her a few months of life :( Still, thinking about me, she wanted to use palliative chemotherapy to extend her life a little, for this purpose (from the perspective of time looking absolutely unnecessary) she had to undergo a major surgery to take a tumor and check what chemotherapy to use
After a series of tiring tests, it turned out that my mother's health was too low for chemotherapy. After mid-August my mother suffered a stroke and lost her sight, so she went to the hospital where she spent the last two weeks of life. In spite of everything, I was hoping for a miracle of healing and praying a lot.
She died at the beginning of September and had a nice funeral, as she wished. However, it does not comfort me. She left a void, sadness, sorrow and longing. I still cannot believe what happened.
It's getting hard, dad has to work for two, and given my condition, he cannot even leave the house. Fortunately, there are people who helped us with our mother's illness and continue to help. First of all, my sister, brother-in-law, nephews and the whole Warsaw Hospice for Children and volunteers - Maciek and Artur.
Then there were the first Christmas without mother. I was afraid they would be terribly sad. Fortunately, it was not too bad. Probably because the Christmas Eve was organized by our sister and she came with her famil. Then on a visit to the cemetery during the holidays. Now I'm afraid what the next year will bring ...
It was getting harder and harder for me to press the computer mouse button, so I was in danger of losing my computer skills. Therefore, Dad has constructed a device that allows me to press the mouse with the beard. He used, among other things, the old mouse and headphones. See photo next. I still use a regular mouse to move the cursor. Now I work much faster on the computer.
2018 (age 43) It was not an easy year. Because of Dad's health problems, we had to make a difficult decision that fundamentally changed our lives. However, I will skip the details.
In May, the Warsaw Hospice for Children made my life easier by making a ramp to the door. Thanks to it, I can safely, quickly and often leave the house for walks.
Despite the problems, we often went with Dad for walks and ride a bike. However, we rarely used a car because of my health and other difficulties. We were on one trip by car.