When working with a patient with SMA, you will most likely find that their sitting balance is not optimal while sitting unsupported, due to a lack of core strength. While every patient has different strengths and weaknesses, as well as abilities and disabilities, it is important to maximize their comfort in everyday positions, as well as their independence with daily activities.
We have been working on these things with our patient with SMA, Michael. We first started out sitting in his power chair and working on core strength using resistance bands leaning into flexion, extension, and side bending both ways, focusing on both concentric and eccentric motions to increase strength and independence with wheel chair mobility, as well as to carry over to improved sitting balance.
Since then, we have progressed to sitting on uneven surfaces and recovering with perturbations. We have now progressed to sitting in a long sitting position unsupported. We have performed this exercise by using a therapy table that has the ability to incline and decline. We first lay Michael supine, and then raise up the incline portion of the table. From there, we stretch out Michael’s legs and get them in a comfortable position for Michael to sit up.
Next, we assist Michael in leaning forward and getting into a long sitting position with a therapist on each side of him to maintain a safe and comfortable environment. This position allows his lower extremities to stretch out, while maintaining a comfortable position for Michael. Increasing his independence in this position allows him to have a wider variety of available positions he has to rest in at home. This position also allows him to sit without having his feet in a gravity dependent position, decreasing swelling in his ankles and feet.
In this position, he is also able to perform more stretches for his lower extremities with assistance at home. To increase the stretch in his hips, we then placed his lower extremities in a cross-legged position, to allow additional stretching for his hip rotators.
When we first tried this position about two months ago, Michael was only able to control sitting independently for approximately 15 seconds. Now, he is able to maintain this position for approximately 10 minutes before he requires a break to rest. To progress this exercise, we will use perturbations as well as resistance bands and uneven surfaces, to further challenge his core strength to therefore carry over to increased independence in this position.
======================== Patient Perspective ========================
On Thursday, May 7th, I went for my weekly workout session with my physical therapists. We’ve been working on balance exercises to not only give me the ability to sit unassisted, it’s also great for core strengthening. Over the past couple weeks, we’ve been working on something called “long sitting”, which for me, means that I’m sitting on the therapy table with my legs in front of me.
During this exercise on Thursday, Emily and Laura wanted to see if I could sit with my feet in a crossed leg position. Since both Emily and Laura have been working on my range of motion and flexibility in my legs, knees, hips, ankles and feet, we wanted to see just how much flexibility I had.
To our surprise, I was able to cross my legs and sit almost perfectly balanced without them having to help me keep my balance. I know that it may not be a big deal to 99.99% of the population, but for someone with SMA, like myself, regaining this ability was very exciting. (By the way, in the pictures that I’ve uploaded in Emily’s article, it looks like Emily and Laura have their hands on my back, but they are in no way touching me. They just keep their hands back there just in case I do start to lose my balance.) It’s been nearly 40 years since I’ve had the ability to do this, so while it doesn’t warrant any kind of trophy or medal, these little achievements mean so much to me.
I lost my mother 12 years ago, and my father passed away 5 years ago. I can tell you that they would both cry if they saw me being able to sit like this again. 10 years ago, I knew that if I reached the age of 55, it would mean that I would be coming to the end of my life. Now, with medical technology, and a lot of hard work by some incredibly gifted and talented people, I feel like my life is just now getting started.