The patient-provider relationship: Addressing all aspects of SMA

Kevin Schaefer, who lives with SMA type 2, and neurologist Edward Smith, MD, detail all the aspects of SMA care that they are sure to discuss in each clinic visit.

 

Kevin: As far as other topics that are important for me and others with SMA to discuss during appointments — you know, treatments are a big part of it, but you keep in mind that FDA-approved treatments only started at the end of 2016 and I was going to clinic well before then — so there are so many other factors that apply to my well-being.

That includes everything from sleeping well to, you know, energy levels during the day, any pain or fatigue, you know, respiratory issues — all of these factors that come into play. And, you know, those are all things I talk about at clinic and we assess — you know, I do PFTs with my pulmonologist and then, you know, that factors into respiratory issues, factor into my overall well-being.

And then I talk about, you know, if anything … if there’s significant disability progression going on or anything like that, those are all factors that, while treatments are very important, there are a number of other daily things, part of my life that I need to address at clinic.

And Dr. Smith, I don’t know if you have any others to add to that or like, you know, things you bring up with patients.

Dr. Smith: I think, obviously, yeah, the treatments are, the pharmaceutical treatments are amazing. I mean, that’s really revolutionized care, but it hasn’t made SMA go away entirely.

And I always approach clinic as an opportunity to hear from the patient or the family sort of what — “Is there anything in particular you’d like to address at this appointment? Is there anything that you think we might be able to help with?”

It’s a little tricky though, right, Kevin? Because a lot of things in SMA, especially type 2 and then more so in type 3, change relatively slowly compared to some other conditions.

And so it’s almost like, “Well, this is my norm. Maybe an OT or a PT could help out with a piece of equipment or something.” But you might not think about it because, “No, I just, you know, this was a gradual change, and I have compensated for that and this is how I deal with that,” when there might be a much better way or a better, yeah, a better way to, or easier way to deal with it, whatever the issue might be.