In the summer of 2021, he was still running, cycling and working full time. In the fall, he stopped talking, lost thirty pounds and started having trouble walking. He could no longer breathe properly in the winter. This too is ALS: amyotrophic lateral sclerosis. An incurable and mysterious disease from which my dad died in February 2022 at the age of sixty-one.
ALS is a neurological disease. Patients’ muscles gradually weaken and the disease ends with suffocation. It is a very cruel diagnosis that does not give any hope. You can fight her, but you can’t win.
The disease is also full of mysteries. Unfortunately, it is not known how it arises or how it will proceed with whom. It starts inconspicuously. For example, problems with fine motor skills: Our dad, for example, could not fasten the small buttons on his shirt.
He found out about the diagnosis only after a long trip to the doctors, more precisely after a year and a half. And that too in a completely inappropriate way: He googled the number of the illness, which he found in the medical report.
Disease faster than the authorities
About (mis)communication in the Czech healthcare system some other time, now back to ALS: Patients lose control over their bodies, but their mental capacity does not weaken in any way. So they are very aware of what is happening to them. However, they are trapped in a body that does not listen to them.
ALS affects about 200 people a year in the Czech Republic, the first known patient was ex-politician Stanislav Gross. About a third of ALS patients are men, and it often (but not usually) affects very active people. In many cases, former top athletes become ill, for example, soccer player Marian Číšovský battled ALS for six years. After all, our dad was also a top athlete, a former several-time national champion in canoeing.
ALS disease has still not entered the general consciousness, even among many doctors. It is also problematic because people wait a long time just for the diagnosis itself. And what awaits patients and their families afterwards is challenging.
Patients are thrown overboard by the system. They end up at home and care is left to their families. In practice, this means that, as a rule, a member has to leave work and take full care of the sick person.
There are no relief services available. In addition, people are fighting a fierce battle with bureaucracy and lack money. Simply put: It takes a long time to develop a degree of disability – and the disease progresses in the meantime. It is much faster than the authorities.
My personal intercession
Why am I writing all this? Last week, the Medicast podcast was released on e15, where we talk to a patient with ALS. The worst thing is that I am dependent on the help of others, says Jiří Lupómech, who cannot move due to the disease, a former policeman who is 52 years old. Due to the disease, he is now completely immobile and dependent on the care of his family. His wife and son take care of him. Mr. Jiří breathes with the help of non-invasive pulmonary ventilation, he wears a device 14 hours a day that blows air into his lungs. He was still going to work a year ago.
VIDEO: The worst thing is that I am dependent on the help of others, says Jiří Lupómech, who cannot move due to illness
• e15
He is a nice man who maintains optimism despite his illness. But he needs help with basic things: buy a car that can accommodate a wheelchair, or pay for rehabilitation. That’s why his family announced a fundraiser. The target amount is not high, but not enough money has been raised yet. This text is my personal intercession. I know that there are many collections, but in this case I know from my own experience that the money is really needed.
A little is enough and we can at least make Mr. Jiří’s life easier. Here is a direct link to the collection. In the video where we offer an interview with Mr. Jiří, you will also find QR codes with specific small amounts. At the same time, every crown counts. You can also donate to the ALSA association, which helps patients.
There is an intensive search for a cure for ALS. According to the experts I talked to about it, it will hopefully be found soon. Until then, let’s not turn a blind eye to the disease and let’s not let the patients and their families suffer.
