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.
4 months ago