Lorenzo’s oil

First of all I‘d like to apologize for not writing earlier and leaving you all with the expectation of what next. It’s been 2 hectic months, specially this last month, a life changing month. It all changed on September the 20th, and I publicly thank that special person for entering my life and changing it forever. More on this to come on later posts but I assure you’ll be astonished with this story.

Now onto today’s topic. It was back on August 21st when all this unraveled. It was Sunday afternoon, I was scanning the tv guide for a movie, and I don’t know why I stopped on “Lorenzo’s oil”, in Spanish the direct translation is “Life’s oil”,. I didn’t know about this movie, never heard about it. Little I knew when I started watching it how I was going to feel, how touching it was going to be, what explosion of emotions I was going to have. Even today while writing this I have tears in my eyes, I can’t stop them. If you haven’t seen it I encourage you to watch it. For those who have, you already know what I‘m talking about. It’s a great true story, of courage, of love, of unselfishness, of hard work and dedication. Something we all have to learn about. It’s a “yes we can”, full of hope when everybody is telling you to subdue and accept it, when they tell you there’s nothing you can do. Well, that’s not true, there’s always something that can be done, and this true story is a proof of that.

While watching it and after I kept thinking on my condition, that something must be found, some breakthrough was around the corner. The next day my friend Steve sent me an sms, he was hearing the morning news while driving to work in Chicago. He told me there has been been a breakthrough in ALS, at my hospital. So I googled “ALS breakthrough” and there it was, the first result was what I was looking for. When opening the web page and reading the title I couldn’t stop crying with tears of joy. The day before it was just a dream but now it’s a reality. At home they didn’t know what was happening, they were trying to comfort me, but I really didn’t need comforting, I was elated with the news and I didn’t want to stop crying.

At first my thoughts went over the previous day, the movie, the emotions I felt and the dreams I had. Watching that movie on the date of the publishing of the paper in Nature wasn’t a coincidence at all. I could have switched channels and watched something else, but I felt I had to watch it. Then all my thoughts went to the people who made this possible. I felt so happy for them, it’s such a great feeling, such an accomplishment for all the hard work and dedication. And not just for the team of researchers, there’s a lot more people involved, from the nurses, to everyone at the Les Turner Foundation, and everyone in between. The whole team is exceptional, and you wouldn’t believe how many they are. I couldn’t stop crying with tears of joy for all of them and for all of us, the patients and families, although I know I might not benefit directly, a lot of people will. I can’t thank them enough for all their efforts and hard dedication, so a big THANK YOU goes to all of them. This is part of the team at the Northwestern Memorial Hospital:

Again, I feel extremely lucky, that team took very good care of me and my family, and I was able to participate in what they’ve accomplished with my little grain of salt, I donated blood and other fluids and tissue for study, that’s the least I' could do and I guess everyone would’ve done the same.

So going back to that day, the next thing I did was to write them a thank you email, I was exhilarated and had to write it as soon as possible. I leave you here the link to the news, it includes a short video: http://www.lesturnerals.org/finding-a-cure/les-turner-als-research-lab/research-breakthrough/

I hope it was an inspiring reading, it was a pleasure to write it and share it with you all. If you want to keep this research going consider donating to the Les Turner Foundation here.

I want to dedicate this post to my wife to be. She has encouraged me to continue with this blog, I‘ve been too lazy lately. She’s the best in my life, she’s my life.

Hello World

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.