Improvements in range of motion, flexibility continue for SMA patient

Progress continues with hips, knees, ankles ahead of strength training

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by Emily Jones |

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Over the past several months, we’ve been focusing mostly on improving comfort and flexibility for Michael, my patient who has spinal muscular atrophy (SMA), in preparation for a potential new treatment from Scholar Rock called apitegromab, which is in a Phase 3 clinical trial. The experimental therapy is designed to improve motor function in patients with SMA. With the increasing attention and time spent solely improving his range of motion in preparation to begin strength training, Michael’s flexibility of his hips, knees, and ankles has continued to improve.

With the implementation of lymphatic drainage before mobilization and stretching each ankle into dorsiflexion, Michael has been able to reduce his lack of dorsiflexion, or toe-up movement of his ankles, from lacking about 50 degrees on each side to lacking from 15 to 20 degrees.

The reduction in swelling has led to an improved ability to reach an increased range of motion with reduced discomfort for Michael. Since we’ve been working on Michael’s feet for about five years now, the sensitivity has lessened and we had been able to push into new levels of mobility.

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Michael has exhibited improvements in knee extensions as well. He continues to experience an improved ability to extend his knees with increased tolerance to stretching into extension and joint mobilizations. Michael is unable to reach full extension, or strengthening of his knees, but this is largely due to the increased amount of time that he will continue to spend sitting in his wheelchair.

With the ability to function and perform his daily activities and other positions, the probability of his knee flexion ever reaching and maintaining full extension is unlikely. Although, as we continue to stretch and mobilize his lower extremities, his comfort continues to improve and his range of motion continues to increase, which will allow for larger ranges of motion to strengthen once we can reach that stage.

Michael is now able to tolerate a more aggressive stretch of his hip flexors due to increases in accessible range of motion. Although he hasn’t reached a neutral position of his hips and probably won’t for the same reasons as his knees, we can access much closer to neutral than previously and are now able to stretch him in a supine, or face-up, position.

This position allows for more localized stretching due to his body being blocked by the table. Previously, this stretch was performed in a side-lying position which allowed for his trunk to move and shift on the table. In a supine position, Michael’s body is unable to rotate due to the table providing support for his upper and lower body.

Over the past several years, we have been able to continue to progress Michael into new ranges in different joints and have been able to continue to improve his comfort and ability to perform daily activities. We will continue to progress as tolerated for increased comfort and to maintain what we have reached to reduce the risk of regression. This will all be continued with high hopes apitegromab will be approved and released within the next year or two to begin working toward strengthening.

Patient perspective

Over the past six years, I’ve seen a huge increase regarding my flexibility and range of motion. Patients with SMA, like myself, typically sit in our wheelchairs from 10 to 16 hours a day, and the majority of us do not have the ability to reposition ourselves. While some of us may have the ability to lean forward and from side to side, the amount of repositioning we can do is extremely limited. This inability to reposition, especially over a long period of time, can have devastating results to our muscles and joints. An able-bodied individual may stand up and walk around numerous times during the day, but this is a luxury that those of us with SMA do not have.

Physical therapy has helped me tremendously with not only my range of motion and flexibility, but more importantly, it’s helped me to be able to sit in my wheelchair all day without the discomfort that I had before beginning physical therapy. I consider myself one of the lucky ones who took advantage of being able to take physical therapy at the beginning of my Spinraza injections and, to be honest, I’m not sure where I would be if I hadn’t started physical therapy when I did.

Emily is not only an extraordinary physical therapist, she’s also a very close friend. From day one, I knew that she genuinely cared for not only me as a patient, but also as a friend. She knows my limitations, but she pushes me to achieve greater success, even when I think it’s impossible to do so.

If you are a physical therapist reading this article, please know that the work that you do with all of your patients, especially those with SMA, is having a positive impact on their life. As I said, I’m one of the lucky ones, and my hopes and prayers are that more SMA patients will take advantage of the miracle I call physical therapy.