Part of creating awareness for Pompe disease is getting to know the actual people suffering from it such as myself. I feel that if I only present clinical facts, symptoms or whatnots it wouldn’t really make that much of an impact on people. So with your indulgence, allow me to share a bit of myself. Get the know the human side of a Pompe patient. In time I will also try to get some other patients to share a part of their lives with you. But it has to start with me. As the saying goes.. “lead by example”.
My name is Juan B.K. Magdaraog. Most of my friends and family call me by my nickname Dickoy. Don’t ask me why my parents named me that. I did however get used to over the years. It’s a funny sounding name but a memorable one nonetheless since it’s not so common.
I’m a full time creative director for a small company called Sparkplug Studios that I, together with my brother and some friends own. I started out as a web/graphic designer before wearing the creative director hat. But since we’re a very small company I still do web and graphic work at the same time.
You must wonder why a creative director/designer uses Blogger for his blog.. Well putting simply I just didn’t have time to design and implement a custom blog. I wanted to get this project started. In time I’ll move this blog to my server and implement a custom design. For now this will suffice.
Do I love what I do now? Well I learned to love it. It wasn’t what I had in mind when I was a child. I wanted to become an architect or a lawyer. But since Pompe disease placed me in a unique situation, I had to shift to things I can physically do.
Technology has allowed me to work in a virtual world wherein physical strength while it still plays a role can be circumvented by technology. Through the use of computers , I am able to be productive in ways that I would have never thought possible.
Apart from my day job I am a sometimes writer… Meaning I write sometimes… 🙂 Every now and then I get a chance to write for a local publication called mph (mobile philippines). A gadget oriented magazine catering to the local market. I also had a chance to write for a book called Reflections From A Different Journery. I’m happy to have the chance to write. I can’t say I’m a particularly good writer. I write because I have something to say. Whether or not it turns out to be eloquent, well that’s another story.
Apart from the above mentioned one of my bigger passions is being a “ThisAbility” advocate. ThisAbility is a term I coined up to put a positive spin on having a disability. I’ll go into more detail about ThisAbility. Suffice to say that this is something I wish I could do on a full time basis. Unfortunately one has to earn a living. If I win the lottery, you can be assured that this is something I’ll do full time. Being a ThisAbility advocate means going around and talking to people about the positive side of having a disability. Explaining to people that even if a person has a disability, he/she can still be productive and live a meaningful life. It’s basically anchored on the principle of looking at the brighter side of life. The power of positive thinking.
I’m also like your average 20 something guy. I like going out with friends, although it’s becoming increasingly rare these days. I like movies, music and watching tv. I love all things Apple. I simply adore my Powerbook. I also love Ferrari. I love the cars, I love the formula 1 team. Two people I’d like to meet is Steve Jobs and Michael Schumacher.
I like girls… Pretty girls always have an effect on me.. Then again they have that effect on most guys…
I only have one dream that I would die for.. That’s to have a family of my own. I grew up in a very loving and caring family. I’ve seen how it is to have people around you who love you unconditionally. That’s something I eventually want to have. But if life has something else planned for me I’d have to accept that.
Well… that’s all I can think of now.. If you want to know anything more.. drop me a comment and I’ll try to answer your questions as much as possible.
Thanks for stopping by. Fight Pompe!