State care for ALS patient

We had to learn to live and adapt to the new situation. We knew that we had a tough fight ahead of us. And no one will give you any instructions on how to handle it all. I was looking for information on how to help or at least make life easier for patients with ALS, but I didn't find much on Slovak websites. I drew from foreign sites where they have more patients and experience with ALS.

Our daddy's hands were the first to leave, first the left, then the right. His legs obeyed him in the beginning, even though he used a walker. But his legs were strong, maybe thanks to the fact that he used to be a football player... Every day he tried to walk around the house with a walker and cycled on a stationary bike for a few minutes a day.

As a patient diagnosed with ALS, you will not receive much help from the state in Slovakia. You are not entitled to a rehabilitation stay / even though ALS patients are recommended to undergo rehabilitation and to keep themselves in adequate movement/, unfortunately they do not allow you to use them in Slovakia. If you need a positioning bed - until you are a fully reclining patient you are not entitled / you have to buy it yourself - of course if you have the finances for it/. If you want physio-rehabilitation at home, you have to pay for it yourself because the health insurance company won't pay for it, a personal assistant - since you've only worked all your life, you'd have to pay for it yourself.....and I could go on...

When daddy's leg mobility worsened. We brought him to physio-rehabilitation to prescribe a wheelchair. The doctor didn't even want to see him, she told us to leave daddy in the corridor. I thought: "Seriously?!? How can a doctor determine what a patient needs when he cannot physically see the patient's condition and leave him sitting in the corridor?!" So I pushed my father to the ambulance on the walker.

I tried to explain to the doctor that an electric wheelchair would probably be suitable for daddy, because he cannot control a mechanical wheelchair as he has lost the mobility of his arms. The doctor informed us that the electric wheelchair will definitely not be approved for us. She wanted to prescribe him only an ordinary wheelchair, I explained to her that his head is falling, he cannot lift it back to an upright position by himself, that he needs to have his back supported and a headrest. She started looking through the wheelchair catalog, found one mechanical reclining wheelchair, and added with a note that they wouldn't approve that one either. I told her that unless she tries it, she won't find out whether we will approve it or not...

Imagine how my daddy felt. Man university educated, 46 years working in a responsible position / paying taxes, social security, health insurance/. A man who saw no obstacles in life was able to solve things that seemed unsolvable to others. He always helped others even those who did not ask him for help. He didn't know the words: "No. I do not know. I can't." And suddenly you fall ill with a fatal disease and you are not entitled to anything, there is no treatment, the state will not approve anything for you because you are no longer a "prosperous citizen"? It's disgraceful and frustrating. You study, work, chase all your life, and when you need help, you are not entitled to anything. I remember when we left the ambulance, how his outlook on life and illness changed. At that moment, he didn't want to continue living and fighting such a severe disease.

My mother and I also left home disgusted...

My story is not about criticism and fault-finding, I took our story with ALS more "spiritually"...

To be continued in part 3 ....