Jasmine Jackson shares her experience managing winter with SMA, navigating cold-related weakness, layering challenges, and energy drain. She reflects on the tools, adaptations, and self-advocacy that help her stay comfortable and supported through the toughest season.
Transcript
My name is Jasmine. I have SMA type 2. Winter is like my least favorite season for sure. It definitely affects me in a couple of ways.
The cold itself, it like, it makes my muscles do this cramp thing, where they kind of cramp up and clinch up. Which obviously makes it so I can’t function with my hands, like zippers and things like that. Eating, it makes eating and stuff difficult.
But on the other side, umm, when I’m trying to stay warm, that’s also a challenge because, you know, wearing a lot of layers, it, it drains my energy really fast, and it just makes me feel really weak throughout the day.
I try not to wear too many layers because, you know, like you said, you get tired and you can barely drive your chair. You know, I can barely lift my arms when I’m, you know, wearing too thick of a sweater or a coat. You know, so I definitely have to find something that’s like still warm, but thin at the same time. You know, I want warmth, not a workout. You know?
I use hand warmers. Those come in pretty handy. Gloves can be a little tricky. It’s hard to maneuver and kind of function with them on. Sometimes I’ll do, like, the one-hand glove where I’ll have my driving hand. I’ll wear a glove on that hand, and then I’ll just keep my left hand in my pocket with a hand warmer.
I also, I keep, I love a lap blanket. That’s a must. Like, I love a good lap blanket. And, yeah, when I’m at home, I love my, like, those space heaters. The fireplace space heaters. I got one of those in just about every corner of my house right now.
You know, and just making sure, I’m staying prepared, like inside, because I do spend a lot more time indoors, you know, in the winter, especially with my kids making sure that they’re, like, entertained. And we’ve got all the things, you know, to keep us, you know, not with the indoor blues.
I definitely agree with, like, being more independent in the summer and spring months. And then for sure, I definitely need more help, you know, in the winter months. I, I go to work in an office, and so, I have public transportation come and pick me up. And so I don’t have to travel, like, in the rain. In the snow. So that’s a plus.
And then I, I have a space heater on my desk as well, but I remember so many times, like, going into work and, like, being soaking wet, my jacket just being soaking wet before I started with public transportation and, you know, not really knowing, like, OK, what to do. Do I just dry off or not really having anyone to ask, you know, and so really having to advocate for myself and just, you know, speaking up for, like, what I need, you know, and just asking for help, you know, was a hurdle that I had to get over at work anyways, you know, so, so definitely having someone at work to be able to help me, you know, with my jacket and stuff is a big deal.
So just make winter just work for you, you know? I mean, winter is going to be tough for us with SMA, for sure. And just like I was saying earlier, just don’t be afraid to, you know, get your, you know, ask for adaptations or ask for help. Also just make your spaces comfortable. Just take it one day at a time, give yourself grace, you know?
