Life with ALS

"You have ALS / Amyotrophic Lateral Sclerosis/ it is a fatal disease for which, unfortunately, there is no cure on this Earth"... Your motoneurons, muscles of the whole body, respiratory muscles will slowly die until death occurs by suffocation...

That's what it sounded like "judgement" for my beloved daddy last October 2022.

How did it all begin?

My father in his 70s was full of vitality, energy and zest for life, /even though he could relax and enjoy his retirement for several years/ he still went to work that he liked and that fulfilled him. He said that if God gives him good health, he will work until he is 75 years old and he will live until he is 100 years old...

" Mans means, God changes..." means in english Many plans are in a man's heart, but the purpose of the lord will Prevail.

At the beginning of 2022, dad started to feel tired, his whole body and joints hurt. He didn't rule like that. He used to go to work early in the morning and when he came back from work he didn't stop until the evening, his hobby was the garden and working around the house... But now after work he couldn't control it anymore, he came home, sat on the couch and turned on the TV. He never did that during 70 years. We thought that he has reached his age and is entitled to rest. But those who knew my father would not believe that he ever rests. He could do 5 things at once. When he didn't have a job, he helped others, for him, others always came first / family, friends, acquaintances, colleagues / he came last.

Every day he was more and more tired and the pain did not subside. So he went to the doctor, the doctor told him that he is already a nice age, maybe he too would live to be so many years old that he is fine from a neurological point of view. So they sent him to rheumatology, because he had elevated CK values in his blood, they gave him corticoids, which did not do him any good, he fainted, fell to the ground and couldn't get up, I had to lift him off the ground, allergic red spots broke out all over his body, so he stopped these meds…

It wasn't until October that he got examined at the Optional Hospital in Nitra, where the neurology doctor told him that it looked like ALS, but he had to stay in the hospital for examinations to confirm the diagnosis. After a few days, the official confirmation of the ALS disease came, which we all hoped in the corner of our hearts that it would not and could not be. After all, how can one person full of energy, vigor, a former football player, a person who never stopped. My dad didn't even know how to walk slowly, when you saw him walking down the street it was as if he had a "propeller" on his back that drove him forward all his life, he was a great fighter, he never seemed to fight, he always faced all the challenges and trials that life gave him with an open mind and he always brought everything to a "winning end", he did not know defeat... And suddenly he gets such an illness? Your whole body dies, you gradually lose the mobility of your arms and legs, your head falls, which you cannot bring back to an upright position by yourself, your voice goes away, you cannot speak, swallow, eat. You remain an invalid in a wheelchair dependent on the help of others with everything, feeding, dressing, showering, toileting, you are like a small child in an adult body. In the last stage, you remain a lying patient on devices and tubes. The only thing you can move is your eyes. You can only communicate with your loved ones through a special Tobii computer. Just like scientist Stephen Hawkings. And the worst thing about it all is that your head, brain still works at 100%. You are aware of everything that happens to you. Your soul, consciousness, thoughts remain trapped in your physical body which you cannot move. Basically, you are a "prisoner" in your own body... And knowing that there is no medicine that would save you from this enormous suffering!

I ask myself, how is it possible that in the 21st century they haven't invented any medicine that would cure this deadly disease? We had several types of vaccines for Covid in a few months, and for a disease that has been known for almost 155 years, we still don't have any medicine or knowledge of why this disease actually occurs, what are its causes? Some people get sick in their youth, others in middle age, or like my dad when he was supposed to be enjoying the quiet life of a pensioner. Someone has a rapid course of the disease, others live for 10-20 years. Or like Stephen Hawkings, who survived 55 years with ALS.

October 2022 changed the life of our family.

We went through a battle with cancer, heart attacks, stroke, diabetes in our family, but we really didn't expect this...

I have lived abroad for many years, but when the diagnosis was confirmed, I immediately went home to Slovakia. I left my job, my established life, because I knew that we were going to have a "hard fight".... us as a family, but the most difficult thing will be for my dad to accept, accept and "learn" to live with the diagnosis of ALS.

When the doctors give you a diagnosis of ALS, they immediately recommend consulting a psychologist, because it is a great pressure on the psyche, you will experience states of anxiety and depression. But our daddy refused any help from a psychologist. He was given the drug Riluzol, which should slow down the course of the disease. You will read on the leaflet that the medicine will extend your life for a few months. One of the medical professionals told him not to give up, that miracles do happen in life. To pray the rosary of Saint Mary of Pompeii.

Dad was a devout Christian-Catholic, until he ministered in the church for 19 years/ there was even a time when my grandmother wanted him to study to become a priest/. There wasn't a morning or evening when he didn't pray for all of us dear to his heart. But football was important to daddy, when he was young he would run from church to the football field from school. And while studying at university, he met the love of his life - my mother - on the train. He always described to us /even when he was already ill/ their meeting. "When I saw her on the train, she was so beautiful, she exuded kindness, she was like an Angel. She read books or studied during the trip. I sat opposite so that I could see her and took out a book as if I was studying, but the whole time I was looking at her how beautiful she is...", thus began the story of my parents' love, which lasted for 50 years, as they had written on their wedding announcement:

WE ARE TWO:

Two for everything - for Love,

For struggle and pain

Even for happy hours

Two for wins and losses

For life and for death - TWO.

To the point and to the letter, their life together drifted in the spirit of this motto. In good times and in bad, they always stood by each other, they were each other's main pillar. Life sometimes brings us difficult moments and life trials, but where there is true love, good always wins over evil.

To be continued in the second part....