IamA 23 year old girl with a neuromuscular disease that has confined me to a wheelchair all of my life. AMA!
My Bio: My name is Gabrielle, and I am 23 years old. I have a neuromuscular disease called Spinal Muscular Atrophy Type II. It is one of the 40 diseases of Muscular Dystrophy. I have been in a power wheelchair since the age of 2. The disease causes extreme muscle weakness in all areas of my body, due to muscle death. I also have muscle tightening in many places of my body. My muscle weakness has lead to scoliosis, hip dysplasia, muscle contractions, and bladder problems. I have had multiple surgeries, including a spinal fusion and an appendicovesicostomy (I know it's a mouthful haha).
I live with my parents and boyfriend (as well as our silly kitty). My dad and my boyfriend care for all of my needs. I was attending college for Forensic Science and Biology, but had to leave due to medical problems. I hope to go back eventually, once these problems are straightened out.
I'm a pretty shy person, but love to talk once I get to know you. This will be a great opportunity for me to get out of my shell, and talk to all of you! Plus it's always nice to be able to educate people about this disease. I love spending time with my boyfriend, listening to music and going to concerts, watching movies/tv/anime, playing video games, drawing, and learning new things.
Feel free to ask any kinds of questions, and I'll do my best to answer them all! Please understand that I type slower than most, therefore my response might take some time. My boyfriend (/u/uncashregistered) will also be here if you have any questions for him as well.
Also, as a side note, if you know/are someone who is a specialist in hip orthopedics, I would love to discuss Girdlestone's operation with them/you.
Edit: Thank you so much for everyone's thoughtful questions! This has been a very exciting day! I'm going to be away for a couple hours, but I'll be back to finish answering the rest of your questions! haven't gotten to
Edit 2: Wow, I had no idea how much this would blow up!! Thank you for the gold as well! I'm back to finish answering everyone's questions. If I haven't gotten to yours yet, I'm sorry, but I will in time.
Edit 3: I might have to stop soon, but only for the night. I know it's ambitious and/or ridiculous, but I would like to try to respond to every question! As I said before, if I haven't answered yet, I will ASAP. Thank you again!