I’m behind, and August has barely started! It is SPINAL MUSCULAR ATROPHY month. Yes, it is still weird to me to celebrate a disease, but celebrating people who have rich and full lives with SMA is kind of cool.
In case you don’t know much about it, here is a decent article from a reputable website:
What is SMA from Cure SMA
You can also ask any question about living with a neuromuscular disorder. Feel free to put it in my comments. I will either answer privately or publicly.
Many tools are available to make life with SMA easier now than it was when I was younger. For example, breathing treatments have kept me from several rough situations that I faced. My tracheostomy tube is one of my best friends, pulling mucus out of my lungs when I sound like I have inhaled an aquarium.
It’s better than listening to my doctors predicting my death since I was 2 years old!
Some of the things are a little bit pricey. One of the lateral turning rotation beds would be a wonderful tool for my respiratory system and preventing blood clots. Unfortunately, it costs as much as a car. Still, you have got to look at this:
ProBed FREEDOM BED
Since it costs so much, I decided to treat it like a car and get a used vehicle. Then my church stepped in and is going to help with this: