1 posts tagged “Doing Ironman with ALS”

Raising MS Awareness: Meet Ramilla…

Posted March 18th, 2010 by

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we interview members each month in our newsletter to find out more about how they approach life.  In honor of MS Awareness Month, we are pleased to share with you our recent interview with Ramilla, a three-star member of our MS community.  Here’s what Ramilla had to say…

2166 (Amy) What keeps you motivated?
79060 (Ramilla) I keep motivated by focusing on the progress that I still make every day. Even on the hard days, when I don’t feel so well, I manage to take something from it that I feel good about, and those hard days make me appreciate the good days so much more.

I am also motivated by the people I meet. I have met so many people over the years who have been affected by MS, and many more who don’t know anything about MS. I like that I can motivate the people I meet to be more active, both able bodied, and people with chronic conditions like MS.

I imagine that by running the races I do, and talking to people about the benefits of a healthy and active lifestyle, that I might motivate a few people to become more active themselves. I mostly want people who like me have MS, but are still capable of being active, to know that it might help their symptoms and make them more comfortable.

2166 (Amy) Who do you admire and why?
79060 I admire a lot of people who have touched my life since I was diagnosed. I found inspiration from Michael J. Fox, Montel Williams, and Mitch Albom with their books about the conditions they and their friends have faced.

The person who I admire the most these days, and who I think about every time I finish a race, and every time I feel like I don’t want to go for a run, is Jon (Blazeman) Blais. Jon was diagnosed with ALS in 2005, and in October that year, he ran the Ironman in Kona, Hawaii.
He rolled across the finish line with a determination that inspired me to try a triathlon myself and has inspired athletes of all levels to finish their races with a roll across the line in his memory. His parents are fierce advocates for ALS, and he is remembered every year at the Ironman World Championships. Here is a video about him on YouTube.

2166 (Amy) How has your condition affected your work life?
79060 (Ramilla) My work life is affected by my MS every day. I notice my energy levels change through out the day, and there are a lot of distractions. Sometimes I get confused and lose track of what I am doing. I plan my day to take advantage of when my mind is the clearest to be the most productive, to tackle the complicated projects that I work on day to day.

It has also affected how I plan for my career in the future. Not to sound morbid, but I think it would be silly of me to plan of having a long career with an active, physically demanding job. I am going back to school to upgrade some of my high school courses, and looking at going to college, and maybe university. I think it may be better to plan on a knowledge-based job rather than a physical one. My hope is that I can manage to maintain a career and be self sustainable for the long term.

2166 (Amy) What’s your favorite aspect of PatientsLikeMe?
79060 (Ramilla) I love that through PatientsLikeMe I can connect with so many more people who are fighting MS. Already I have been in contact with people who were active pre-diagnosis, and had not considered that they could still be active. The encouragement I get from the people I have met on the site has been a great help to my training.

While this site has really opened my eyes to many of the less inspiring aspects of MS, it has re-affirmed my belief that life goes on, and it is up to me to live it to the best of my ability. PatientsLikeMe gives me hope, and that is one of the most important things you can keep when you have a condition like this.

2166 (Amy) Thanks for sharing your story with us, Ramilla!