Tuesday, May 25, 2010


Before I get started, I want to make certain that everyone understands that my friend Julie is in no way influencing my decision to leave the hospital. It's something I've wanted for a LONG time. She has just given the in person support I needed and is helping me. I'm the one calling the shots.

The accomplishments I've achieved thus far are certainly not milestones by any stretch of the imagination. However, they are important steps to get the ball rolling on this MAJOR undertaking.

I've been talking with someone from my local Independent Living Center (ILC) since last year. They assigned a mentor to me shortly after getting in touch with them. Like myself, he has DMD, but he's younger than I and isn't vent dependent. He uses Non-Invasive Ventilation (NIV). His experience living independently has been very insightful thus far as well as his input. Having him involved in this process is definitely a plus.

About a month or so ago, I was assigned a new Resource Coordinator. I was a bit apprehensive about this at first because I thought it was going to be a setback bringing a new person up to speed with my case. I was pleasantly surprised to find out this woman knew exactly where things stand after meeting with her in person. She's a wonderful person that truly wants to see me succeed and feel completely comfortable doing so.

There are more accomplishments to share, but my eyes are getting tired. I will share more in my next post.



Monday, May 24, 2010

Moving Forward

The focus of my blog is going to change a bit. I plan on chronicling my step by step journey to leave an institution after 20 years to move into the community. I finally made the decision to stop being scared and move forward. Most of the support I've had has come from friends in the DMD community online, which has meant a lot because I really don't have family support except for maybe 2 people. A few other people in the rehab hospital I live in have voiced some degree of support, but nothing very motivating. The motivating force that has helped me gain the confidence I needed to make this BIG decision has come from a VERY special person that has only been in my life for about 4 months now. Those of you who are friends with me on Facebook have heard me mention my good friend Julie on several occasions. She is one of the most sweetest women I have ever had the honor and pleasure to meet. She has a heart of gold and is dedicated to helping me achieve my goal of getting out of this hospital that has been my home for FAR too long. Expect to see more post detailing my slow but steady progress on this journey.