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When to stop using a stander?
Hello! My 15 year old daughter (Callie, SMA 2) has been using a stander basically since her diagnosis. It’s never been fun for her but since she’s been a teen it’s been harder and harder. She transitioned from homeschool to public school this past year, so the school day took all her energy and we didn’t even try to get her in her stander when she got home. Now that she’s home for the summer she wanted to try again, but was not able to tolerate the pressure on her knees or heels. She’s had a hard time getting AFOs that fit correctly as well. Any physical therapist we’ve talked to has told us to continue for as long as she can, but I wonder if we’re getting to the point where we should stop trying. I’m not asking permission, but I’m curious to know if/when other stander users decided to stop, or if you’ve continued using it into adulthood. Any advice on how to make it more comfortable? She has a pretty bougie sit-to-stand one, so I don’t think it’s an issue of the equipment itself needing to be replaced. Maybe adjusted? I don’t knows. I’m kind of at a loss. She also hasn’t been in PT in a couple years. Open to any advice/commiseration!
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1 Reply
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Hey Aimee –
Sorry to hear about Callie’s difficulties with a stander. So, a few thoughts on this, for whatever they might be worth. I’m a type 3, 62 years old, diagnosed at 16, who started using a powerchair full time 10 years ago. My condition had progressed to where walking was extremely laborious, fatiguing, and honestly, too risky for me. A bad fall in 2011 required more than 10 stitches in my forehead. The final straw was me falling and shattering my left tibia in June of 2015. So, I guess I could add “painful” to the above list. 🤣
Please keep in mind this was before any treatments were approved. I started Spinraza in mid 2018 and stayed on that until the Fall of 2024, when I switched to Evrysdi. I lost so much ability in those 3 years from using the chair full time as recognized in my PT sessions that I’ve been doing once or twice a week since October 2016. I do a clinic PT session and an aqua PT session each week. The progression, at least for me, was offset by me doing things like standing. I also have a very dedicated daily exercise regimen lasting about 2 hours.
So, my suggestions are to work with a good PT – not just any will do. Mine specializes in neuromuscular therapy, and specifically SMA. How fortunate is that? So, how do you find a good PT? My thought on that would be that hopefully you have Callie doing at least annual visits to an MDA clinic. If your clinic has a comprehensive care team, a PT will be part of that group. If they don’t have a comprehensive care team, talk with her neurologist to get suggestions on a PT or PT group affiliated with the hospital or clinic to get some suggestions. That PT/PT group should be able to work with Callie to assess where the pain is concentrated and how best to alleviate that. They can also work with her/you on AFOs or other devices that might help or evaluate Callie in her stander device to make suggestions or tweaks.
If your PT has aqua therapy available, pursue that. If they do not, and you or another family member or caregiver has the availability, check into local pools or community centers that may have therapy pool access (assuming she needs it). I use a transfer chair that lowers and lifts me out of the pool for my sessions. If you can do this, standing or moving in the pool is safe and much less stressful or painful.
And finally, encourage Callie to not give up and to try her best to push through this pain if at all possible. Standing has well documented physical, emotional, and mental benefits, so even brief standing sessions are better than none. Along with this is the recognition that these steps may help position her in a better place as new and better treatments, several already in the pipeline, are made available.
Best wishes to Callie – and you!
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