Transcript
[AIMEE] Let me say this, that with my hair I struggle with my MG. Like looking at me right now, you wouldn’t even realize that I’m doing a technique right now to hold my arms so that they are not dropping like this. I’m bracing myself against my body and like literally isolating muscle groups right now just to keep my arms up, because I tend to talk with the hands. That’s like the arm strength or lack thereof because of MG is something major that I have to deal with all the time. The fact that I have curly hair makes it easier.
[AIMEE] For styling, first I brush through my hair—which, mind you, is not that easy. It’s called “brace myself against the doorframe” and then make my side part. Get it so it lays even, like brush on through. It’s literally like… because standing, it’s…
[MATILDE] It’s a little bit difficult.
[AIMEE] Standing is effort.
[AIMEE] The doorframe helps me because I lean into the doorframe. I use that to like help stabilize myself and then like do that, the brushing, get the curling cream, like up and through, and then get it to lay how I want, curl from… like scrunch and then bring it to one side, whatever, let it dry. Once it’s dry, then I can fluff up and like deal with it.
[AIMEE] You don’t know how frequent. You don’t know how long an area of weakness. You don’t know which areas of your body. You don’t know how long the weakness is going to last. Because sometimes it’s a short burst. Like my arm is burning. I feel weakness from brushing my hair. I drop my arm, I wait. The burning stops, and I can go back and continue. But there is also something with MG where it’s not just momentary that I rest and I’m better. Sometimes it’s a cumulative effect.
[MATILDE] Do you find it difficult to hold a brush when you’re brushing your hair?
[AIMEE] At times. I mean, I also like have issues with my hands too. When the weakness is really acting up, even keeping a grip on the brush can be hard.
[MATILDE] This is a brush that I wanted to show you. It might help. It might not help. One of the things that it does is you can put your hand straight through it. It might help when you did mention that it’s hard to grip a brush at times. This is something you would have to take small sections and start at the bottom, but it would usually help when you get out of the shower.
[AIMEE] Okay.
[MATILDE] Do you mind if I show you on my hair?
[AIMEE] Sure. Absolutely.
[MATILDE] You put your hand through it and always, when you’re detangling your hair, you have to start at the bottom so that you don’t rip through the tangles.
[AIMEE] Makes sense.
[MATILDE] Then you start working your way up, and this might help instead of like having to lift both arms. You’re doing one. Then, obviously, you did say that sometimes it gets a little bit difficult. You’re going with your left or your right. Sometimes it’s a little bit harder, but it would be extremely helpful.
[MATILDE] You can use it in the shower. If you need to do it afterwards too, always start at the ends.
