Flexibility necessary for physical therapists and SMA patients
As needs change and disease progresses, goals will have to adapt
Two people sit a table speaking and collaborating.
Physical therapy looks different for every patient with spinal muscular atrophy (SMA) because treatment changes throughout their life as the disease progresses and different medications become available. With Michael, a patient I work with who has SMA, we’ve had many changes in our goals and approaches throughout the course of his physical therapy journey. As SMA progresses in each patient, abilities shift and change as do goals.
Recently, Michael has been dealing with an increase in pain and inability to tolerate sitting for long periods since his transition to a new wheelchair more than a year ago. This is most likely because the cushion he was used to is no longer being made so he had to try a different one. After trying multiple activities to help with his pain and consulting with other experts, we have have been working on paperwork and requests to get approval from insurance for a new cushion for his wheelchair.
As a result, we have switched our focus from reducing hip pain to improving extensibility of hip and reducing pain and tension in his shoulders and upper back. Currently, our main goal is to improve Michael’s comfort.
He has recently switched pain medications and, unlike our approach with other patients, his goal isn’t necessarily to get off of it. We try to give these drugs time to work without performing many new activities so as not to alter the effects. We want to see what medication is most helpful while he works with his pain management doctor on dosage and other aspects.
Within the next few months, Michael should be getting his new cushion. There will be a few weeks after that where treatments are different and we alter our plan and activities to fit the changes he’s feeling with the new cushion. It is a bit of a waiting game to see what adjustments will need to be made and what soreness may adjust with time using the new cushion.
These are all examples of the flexibility required when working with a patient with SMA. This is a different approach than most orthopedic conditions seen in outpatient physical therapy clinics. Most of the time, there is a clear goal to work toward and once those are met, the patient is discharged and sent to work on their home exercise program.
For those with SMA, they will be seen for as long as they are able to get to the clinic and participate in activities. Their goals will change throughout the years and they will be maintenance patients. There may be goals to reach and then the goal changes to maintaining the progress that has been made.
Communication and being able to change plans in a moment has come into play so many times over the years while treating Michael. He is now comfortable with telling me what he wants to work on and what has been helpful and not helpful.
Being honest and open to suggestions makes his treatments best for him and most beneficial for the stage he is in at the moment. His comfort and discomfort change all of the time, as do our treatments. These will continue to change in the future and we will continue to adapt and give him the best care we possibly can.
Patient perspective
When I started physical therapy in September 2017, I never imagined the journey it would take me on. I’ve met so many incredible physical therapists over the years, and I count my blessings each and every day. Emily is not only easy to talk to, I feel she truly understands what I’m going through and what I’m experiencing.
They say honesty is the best policy, and there have been many times I’ve opened up and told her things I never thought I would discuss with another person. She’s told me that she would always be there for me no matter the day or time, and I do believe if I ever called her at 2:30 a.m. and told her that I needed her help, she would be standing on my doorstep by 2:45 a.m.
While the majority of my physical therapy has now developed into a maintenance program, I do believe this will change if Scholar Rock gets U.S. Food and Drug Administration approval for their muscle-targeting therapy. This experimental therapy, called apitegromab, is an add-on therapy designed to boost motor function. This may give me a chance to start targeting muscle mass and strength and has been the topic of many discussions with Emily. Until then, she is working diligently on keeping my muscles as flexible and elongated as possible.
I’ve always been quick to say physical therapy has changed my life, but I don’t know where I would be right now if it hadn’t been for physical therapy. I only get to do physical therapy with Emily once a week, typically Tuesdays, and it’s my favorite day of the week. I get to do something I know is good for me, and I also get to hang around and spend time with Emily and the other physical therapists at her outpatient PT clinic. These people are not only my physical therapists, they are also close friends who hold a special place in my heart.
If you’re a physical therapist, please know you impact people in many different ways, not just physical.
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