Hello everyone, I hope this new adventure I’m starting today is useful to someone. I've been thinking about writing this blog for some time, but never found the right moment. But I’m over that now, I had to come out to the world one way or another, so here I am. 4 Years ago I was diagnosed with a terminal illness, amyotrophic lateral sclerosis, also known as ALS. If you search for it on the Internet you will find what it is, but basically it’s a neurodegenerative disease that affects the motor system and gradually leaves you completely paralyzed and inevitably ends with death by a respiratory failure. The expectancy of life since the onset is 3 to 5 years, each person is different and there are people who last 2 years while others live for decades like Stephen Hawking, who has been living with it for almost 50 years since he was diagnosed, but it’s a rare case.
Unfortunately it has no cure and the causes are not known, I hope this will change soon, but since it’s a disease suffered by few people there’s not too much funding available for research, which says a lot about the people who are working hard to discover anything about it. On the other hand, being of unknown causes in most cases (if I recall it correctly, 10% is due to genetic causes, which is not my case), it's a lottery that anyone can win at any age (usually it was from 50 years up, but today this has changed and the age has dropped considerably) and in any place. By this, I mean we all have a ticket and nobody is safe, the statistics say there are 3 cases per 100,000 inhabitants a year. But surely that has significantly increased over the years. If you want to find out more about this there you have the Internet.
Returning to my case, despite being paralyzed from the neck down, I feel lucky. In first place for my family, whom I deeply love, they help me in everything they can, in the best way they know and with all the love in this world. Secondly, for the people around me, friends, neighbors, acquaintances, people surprise you very positively, because with this illness you learn not to expect anything from anyone, so you don’t get disappointed. The truth is that this topic deserves a post by itself because there’s too much to talk about it right now, so I’ll write about it in another post.
Thirdly, due to the wealth we have to cope with the costs that allow me to enjoy the comforts that most can’t, for example if I didn’t have enough money I wouldn’t be writing this, which leads me to launch a separate blog to let you all know about the technical aids we have available. I’ve been exploring them to choose the best that suit my needs. You can follow it here. Luckily I am a professional IT consultant and a person who likes to keep up with the latest advancements, which leads me to spend many hours a day on the Internet updating my knowledge and researching on things of my interest. This trained curiosity has led me to investigate the issues of accessibility and available solutions, because I think what we’re offered in institutions and hospitals is not enough.
Finally, I was fortunate enough that this disease began while living and working in the US. Over there this disease is well known thanks to a baseball star back in 1920-1930s who had to retire in 1939 and died shortly afterwards in 1941 due to this disease. Such was the shock suffered country-wide that today, more than 70 years after his death, is still referred by the name of Lou Gehrig's disease, one of the few athletes if not the only one inducted into the Baseball Hall of Fame while being an active player. This demonstrates how good this player was. This leads me to write about how advanced they are in the treatment of this disease compared to other countries like Spain. I lived in Chicago and fortunately again I found myself with one of the top recognized hospitals worldwide, which has an outstanding ALS unit, the Northwestern Memorial Hospital, which helped me a lot to say the least and a foundation, the Les Turner Foundation, which does a great commendable job, helping and guiding patients and family members throughout this painful journey. To them I’ll dedicate another post because we have a lot to learn in Spain and other countries, which is what I have seen, unfortunately patients and families find themselves lost and uninformed.
With this blog and the one dedicated to the assistive technology I hope to be able to make a change, and in fact, that motivated me to write this blog in the first place among other things. Before leaving this world I would like to share my knowledge and experience with the people who aren’t so lucky and have to go through this illness with great pain and suffering for this misinformation I was referring to earlier. My mother often says how lucky we were that my illness started over there in the States, because while confirming the diagnosis she felt completely lost, but as soon as it got confirmed, the hospital and the foundation took very good care of us in every possible way. Last November I had to take a real hard decision, stop working, I didn't want to but had to be honest with myself, it became very difficult to talk and keep up with the pace of work considering all the daily activities I had to do to stay healthy. I’d also like to dedicate a separate post to talk about how easy my company made it for me, I’m sure in a different country it would have not happened and they would have forced me to leave my job while in my company they said I could decide when it was the time to stop.
I hope it has not been a too long and tedious reading and you've been able to reach the end. A hug to all and until the next post.
I almost forgot, I’m sure the computer nerds like me will appreciate the title of this post, lol.
