HOW YOU SPEND YOU DAY
Hello everyone,
I’m a 20-year-old with SMA type 3, using a wheelchair, and I had scoliosis surgery that unfortunately made things worse for my body. I often wonder how people like me manage their everyday routines. And I mean the more sensitive parts too, like how you go to the toilet, how you wake up, how you prepare your food, how you shower, and things like that. These are questions we feel shy about asking, but sometimes just knowing others go through the same things can make us feel a bit more comfortable.
I’ll start with my situation: I basically can’t do anything on my own, unfortunately. I need a family member to help me with almost everything, getting up, changing clothes, going to the bathroom, showering, preparing food (thank God I can eat on my own).
Recently, I tried to find a solution for the toilet issue (at least for peeing). I thought about getting special pants that open easily and can be closed again, but I couldn’t find something that really suits me, and it also requires a bit of strength to use. (This might be an idea for people who have a bit more arm movement.) I also saw a device called the JACO robotic arm, and I’m seriously thinking about getting it since it seems very useful.
I also want to continue studying abroad, but as I mentioned, I can’t really do anything by myself. So if anyone here is living independently, please let me know how you manage. I’ve also heard there are agencies that can take care of you at home, which could be really helpful. Keep in mind I’m from Tunisia, and if there’s a chance to study abroad, it would most likely be in France.
That’s all I have. I know I didn’t really provide solutions, I’m still looking for them myself. So please share your experiences with me. It would help me and others a lot.