I thought that I’d do one more Q&A post for SMA Pride Month. I got a few questions from Instagram and comments on other blog posts, so I wanted to answer those questions and not just the general ones I did earlier this month. I’ll have one more post for SMA Pride Month next Monday, and then that’ll be it for my dedicated SMA posts.
Is it painful, intrinsically, to have SMA?
It is not! SMA in itself isn’t painful. Now, that’s not to say that people with SMA aren’t sometimes in pain – our muscles are weak, so depending on which muscles aren’t doing their jobs properly, that can cause things to hurt. For example – if the muscles around your spine aren’t strong enough, you can get back pain. I’m not typically in pain – I’ll occasionally get some back pain, but nothing typically in my day-to-day life. I think the biggest thing is needing to be supported properly to be comfortable. In my wheelchair or in bed – things can get painful if I’m not situated juuuuust right.
Do you spend all day in your chair, or do you transfer to a sofa/armchair?
I spend all day (or at least, the waking part of my day) in my chair. Very, very rarely, I will lay on the couch if I’m watching a movie, but honestly, my chair is more comfortable for me than most other places. I need a lot of support to be comfortable, so it’s often easier to just stay in my wheelchair where I already have that support.
Are there exercises or things you can do to try to keep your physical abilities from declining as fast?
Some people with SMA do physical therapy, but I haven’t done anything formal in years and years. I basically figure that the things I do normally on a day to day basis – lifting a cup up to my mouth, doing my makeup, reaching for something on a table, typing on my laptop – are actually a workout for me and my muscles! Exercises may help some, but they still won’t stop the decline.
Do all muscles in your body get affected (eventually) or just the larger muscles?
All muscles in my body could be affected. SMA tends to differ from person to person – even my sister and I have different strengths and weaknesses, and we’re pretty similar overall in terms of “severity.” Even now, while I have decently good dexterity in my fingers (so I can type on a laptop), my muscle strength in my hands and fingers is weak. So SMA doesn’t discriminate based on muscle size!
Do you get medical/dental exams from your chair, or do you move to the exam table/chair?
I typically stay in my chair. It tilts back, so I can get pretty close to the same position as I would on an exam table! Sometimes, of course, I have to get out – things like x-rays, CT scan, gyno appointments – but when I can stay in my chair, I do. Not only is it annoying and time-consuming to get transferred and re-positioned in and out of my wheelchair, but most exam tables and chairs don’t really have the support that I need.
What do you wish people would ask about SMA?
This question is really interesting to me, because the person asked if it was a cop out question but it’s actually something that I have never really thought about! I’m going to flip this a little bit and talk about what I wish people KNEW about SMA.
First – I wish people knew that SMA affects basically every single aspect of my life. What time I get up, what I wear, where I live, where I travel, what my job is – those are all impacted, one way or another, by me having SMA. But the second thing that I wish people knew, which is equally important, is that I don’t actually think about SMA very much on a daily basis. It’s such an intrinsic part of me that I just kind of take it for granted. I’ve never known a life without SMA, so I think about it probably about as much as you think about… breathing. You know it’s there, and happening, but it’s not something that you actively think about.