Currently, as a speech language pathologist working with patients with ALS, patients are given feeding tubes, PEG tubes, and they’re given AAC devices. Really, the current state of play is they unfortunately have these crutches to help get them through, and it’s more palliative treatment.
Having worked in an ALS clinic for some time, I became frustrated with what we are not providing these patients. Given my neuroscience training background, when I started reading in the literature, I learned that there are some small animal studies that showed that engaging these transgenic ALS mice in exercise and actively getting them to intervene seemed to be neuroprotective and increased survival in these ALS mice.
I had the idea: Why don’t we try and see if doing some exercises that have been proven to be efficacious in other patient populations such as Parkinson’s disease and multiple sclerosis? Might we utilize those in this ALS patient population and see the effects?
It’s fairly controversial in this patient population. The big question is, “Is exercise neuroprotective for individuals with ALS?” Historically, exercise has been boohooed in this patient population, that it would hasten disease progression. However, there is no big empirical evidence to support that statement.
In the limb motor literature there have been a few clinical trials that have shown that exercise has been beneficial in individuals with ALS, but currently there has not been a large clinical investigation to ask the question, “Is exercise on bulbar dysfunction of speech and swallowing — could that be useful?” I think that’s where the excitement comes in with this particular project.
What will your current study test?
Essentially, for this study, it’s a randomized sham-controlled study. Patients will be randomized to either the active treatment group or to a sham group. The particular exercise we’re doing is expiratory muscle strength training, which Christine Sapienza at the University of Florida and Paul Davenport developed. They have shown that this exercise is efficacious in other patient populations.
Essentially, patients come in. They have their evaluation, and then they are randomized to the EMST, or active treatment group, or to the sham group. Obviously, we have the sham group to make sure we have a nice comparison across groups. Following eight weeks of treatment, the patients come in at the end and we re-evaluate them. The overall goal is to see if these is a significant treatment effect or improvement in individuals with ALS and their ability to generate maximum expiratory pressure, in addition to looking at indices of swallowing function, their ability to cough and protect their airway during swallowing, as well some quality of life indicators.
What are you most excited about in your work?
I think I’m most excited to be a part of moving the field forward with, particularly what I’m doing right now is a large randomized controlled trial in a patient population that’s never been done before. That’s super exciting to me. In general, as a field, I think we’re really starting to push some boundaries and to really get into a high level of evidence-based practice and medicine. It’s really exciting to be a part of that and to hopefully help provide that for clinicians.