”My name is József Szegő, I am 41 years old and I live in Cluj, Romania. Father of a wonderful 7 year old girl and a loving wife I had everything I wished for and considered important in life. This was until last September when my life literary turned upside down.
In August 2018 I started to notice strange fasciculations first on my right, then soon after on my left thigh. I did not give much importance to them at first, but in September, when I started having difficulty climbing the stairs 2 steps at a time, I knew there was something more serious. My neurologist first mentioned the possibility of ALS on September 21st, the day this whole calvary started for me and my family. A whole range of expensive medical investigations followed, which meant to rule out ALS.
In October walking became more and more difficult and I could climb the stairs leading to our 3rd floor apartment only by pulling myself up with my arms. In November my medical condition worsened. With financial help from our friends we made a complete genetic testing, called WES. It costed 2850 euros and its` result was expected in January. In the meantime my condition got so bad that I had to use a crutch and then a walking cane, and I could not climb the stairs anymore. Thus, we were forced to move out of our apartment.
January 1st was the last time I drove my car. My legs got so weak that I could not push the break pedal anymore. I started using a manual wheelchair. We received the results of the genetic testing from Germany and they confirmed the terrible diagnosis: I had ALS.
There are two accredited medications for this very rare disease, but none of them offers a cure, they only prolong the life of a patient with a few months. One of these in called Edaravone, an infusion not accredited in Europe, but only in the USA, Canada, Japan, India. We decided to give it a try, so we ordered them from India. The cost of a one month dose is about 800 lei. After a 6 months treatment I stopped taking them, because I did not notice any positive effect, on the contrary. So, I continued to take the only medication accredited in Europe for ALS, that is Rilutek. It is given for free in Romania, but the irony is that it is very difficult to find. We are lucky we have pharmacist friends able to help us. Beside this medication, I have a kinetotherapist and a masseur coming home twice a week. Of course their expenses are not covered by the state insurance.
We rent 3 types of wheelchairs: a smaller one that is collapsible and necessary for when I must go on hospital visits, another bigger and more comfortable one that I use all the time and a bathroom chair. The state insurance offers a one-time amount of 850 lei to buy a wheelchair. In March we have bought an electric wheelchair, which I was unfortunately able to use only for a short period of time. Because of massive muscle loss, I did not have the power to hold myself in it.
In February-March the progression of my disease seemingly slowed down, but in April I started having breathing difficulties. They got so bad that in early May I spent 1 week at the Pneumology where, after thorough testing, I was prescribed a BIPAP ventilating machine. Another huge expense for 607 lei/month, as it is not covered by the medical insurance. In the hospital we were faced with many difficulties as they are not prepared for physically impaired patients. Luckily my friends were there to help me: they put me from bed into the wheelchair and vice versa. The staff of the hospital was very nice and helpful.
By this time, we realized how “abandoned” ALS patients are in Romania. While in Western countries there is a group of doctors taking care of them and following the course of this disease (neurologist, pneumologist, nutritionist, psychiatrist, kinethotherapist, social worker etc.), here every doctor focuses or is able to focus only on his/her own field. The need of a collaboration between a neurologist and a pneumologist would be a MUST, because the main cause of death of an ALS patient is respiratory failure.
The poor quality of the Romanian medical system lead to another dreadful week spent in a hospital bed, this time at the Cardiology, after I developed deep vein thrombosis. The first question I was asked at the ER and then at the Cardiology was that nobody told me I should be taking anticoagulants? I was prescribed a special type of medication, that does not require regular blood analysis. The price of this medicine is 220 lei/month.
Resolving this issue, I had to face another big challenge: as my diaphragm got weaker, I was unable to cough on my own and mucus started to gather on my bronchus. With the help of my pneumologist we managed to get a so-called Cough Assist machine. This, we also have to rent for 900 lei/month. It is of great help as I’m forced to use it daily, and without it I would surely have to spend every other week in the hospital.
Now a few words about my present condition: my legs are totally paralyzed, but I can still move my fingers on my arms a little. My whole body muscle is almost totally wasted, without the BIPAP machine I can breathe only for a few minutes. I need help in every activity, so my wife is there with me all the time. Also, I am lucky to have my mother, friends and colleagues helping me, for which I am very grateful. Grateful that they find the time to help me get in and out of bed, to just spend time with me and try to make me feel as comfortable as I can in the given situation. I could not imagine my days without them.
After moving out of our apartment, we were able to stay at my workplace, but this situation probably cannot go on for long now, so we will have to start looking for a new place to stay. Our 3rd floor apartment, for which we pay a monthly loan, is out of the question, as most apartments, where there is just not enough space to move around with a wheelchair.
At the end of July I filed for medical pension and the state awarded my almost 20 years of work with the ridiculous amount of 950 lei/month.
With my personal story I would like to raise awareness on how “abandoned” ALS patients in Romania are, how little is known about this disease, how there are no specialized doctors in ALS, there is no ALS center, no collaboration between doctors, no guidance, no HOPE.
If this story helps only one ALS patient in Romania, then we achieved our goal.
If anyone feels they would like to financially help us, we would be mostly grateful.
There is also a Facebook page with more pictures and details about Jozsef:
Dacă ești în Cluj luni, 11 noiembrie 2019, și vrei să le întinzi o mână de ajutor lui Jocó și familiei sale hai în Euphoria Music Hall, intrarea e pe bază de donație și banii strânși vor merge către nevoile lor.
PS. Din păcate..