Hugo Trevino: Staying on track with SMA care

Hugo Trevino, who has SMA type 3, provides tips that help with staying on top of scheduling appointments and care maintenance.

Before I decided to get treatment, I was only seeing my doctor once a year. And so it was very simple for me to kind of pick that time during the summer. I live in Chicago, so I try not to go out as much during the winter, even for doctor’s appointments if I can avoid it. Plus people are sick, so I don’t want to be in hospitals.

But now that I do go in every six months for my checkups and to make sure that my treatment is going well for me, I do try to make sure that whenever I see my doctor, I right away schedule my next appointment as I’m in there. And their schedule usually is open. My doctor’s schedule did open up like about a year in advance, or even six months in advance. And so I don’t leave my doctor’s appointment without scheduling another appointment.

If you’re someone that’s trying to get back into contact with speaking with your doctor, you can also put reminders on your calendar. Or with the change of the seasons, right? If you wanna go maybe every spring or fall where maybe it’s not too cold, not too hot, or if you don’t mind going right now — because I liked going in the summers, then I do end up going to a doctor now in the dead of winter. But again, remember, try to make sure that you pick times that kind of work out for you.

For me in Chicago, it’s really easy to remember with the change of the seasons. Thankfully, we do have, you know, different temperatures that remind me, OK, you know, I have to see my doctor now. But if you’re someone that lives in the South and it’s always the same temperature, then yeah, try to do other reminders on your phone or if you do have a physical calendar, put it on there.

Even though our disease technically does plateau, and if you are someone that doesn’t want treatment, you always wanna make sure that you are getting, you know, that your wheelchair’s staying up to date, that shower chair is — you know, I hear about shower chairs breaking all the time.

Or you want to make sure that your equipment is up to date and that your muscles or physical therapy — I don’t know, personally, I like to also get physical therapy and make sure that I get that for my insurance at least once a year, right, with however many visits.

So these are all important things to me for my upkeep. And then that’s why it also reminds me to make sure that I’m checking in with my doctor so I can get appropriate referrals to just stay healthier.