2 posts from May, 2007

PatientsLikeMe ALS Patient Spotlight: Edwin

Posted May 15th, 2007 by

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview a PALS each month to find out more about how he or she approaches life. This month we are pleased to feature Edwin, a three-star member.

What inspires you?
For me, it is not what but who, and the answers are completely different now than they were before my MND diagnosis, because prior to my diagnosis I let materialism rule my life. God inspires me in more ways than I can possibly say. With today’s technology we have the good fortune to not only be able to appreciate and enjoy all of the magic, splendors, and wonders of our own planet, but those of the universe too. Every morning I wake up and thank God for my creation/existence, knowing that this lifetime is an opportunity for me to experience, learn, and give, and that it is just “a blink of the eye” of my eternity. Many of my fellow humans on the planet inspire me. I speak of those who, without any hidden agenda, give of themselves for the betterment of others. I still have much to learn from these people as I strive (hopefully) to be like them.

What’s the funniest thing that has ever happened to you?
To set this up right, first you have to understand that while I enjoy having a good time, I’ve always been the kind of person (stiff) that has had to be in control at all times. Back in the early 1980s while we were living in Southern California, Patty (my wife/better half) and I were out on a Saturday driving around doing a bit of furniture shopping. I had an excellent sense for getting/driving around since at the time I was doing on-site computer fix-it stuff for a living. We had finished our shopping and were headed for home when I simply drew a blank on where I was and how to get home. So, I pulled to the curb, looked over at Patty and asked, “Where the hell am I, and how do we get home from here?” Think about it, guys never stop to ask for directions and here I was asking my wife! Through the years Patty has enjoyed telling this story to people that have gotten to know me. Of course now with what I have going, there will be plenty of opportunities along the way to ask for help and laugh about it (continuing learning opportunities/experiences for me).

What is your favorite place and why?
There is a stretch of road here in Colorado over in the southwestern part of the state that runs from Silverton to Ouray (part of US 550, also called the “Million Dollar Highway”). For some reason that I can not explain I have always felt closest to God when driving/riding this road. My intent when I’m gone is to have my ashes spread at Red Mountain Pass along this route.

What do you like best about PatientsLikeMe?
The fact that it gives all PALS the opportunity to share all of their experiences (profile of condition, treatments, and symptoms) while also providing an open forum for discussion and support of PALS and CALS. Who could possibly ask for more?


PatientsLikeMe Update: May 2007

Posted May 15th, 2007 by

This month is momentous because we’re celebrating a major milestone at PatientsLikeMe. We now have over 1,000 PALS in our community. Thank you for making PatientsLikeMe your home and spreading the word to other PALS. The more patients we have, the more we learn from each other.

We are also thrilled to announce the debut of two new communities for Parkinson’s disease and multiple sclerosis (MS). If you know people with either condition, invite them to join PatientsLikeMe. We want them to know what you’ve already learned – that when patients share their data, it empowers everyone.