I have wanted to be involved in moving the research forward for MS. I received an email asking if I would like to participate in a clinical trial. I responded and met the criteria. I am now involved in the physical activity pilot intervention for persons newly diagnosed with multiple sclerosis. The purpose of this student is to examine the feasibility and influence of a remotely-delivered program for improve lifestyle physical activity and health among persons newly diagnosed with multiple sclerosis. This is a 12-week study through the Exercise Neuroscience Research Laboratory, Department of Physical Therapy at the University of Alabama, Birmingham. My coach is Le Thao (Lexi) Trinh Huynh, MPH. We have weekly Zoom sessions to discuss my activities, and I engage in reading the weekly newsletter and do my exercises and stretches.
Why do I value this opportunity? The resources from the newsletter are awesome. For example, the exercise videos and the pdf files that are presented are designed and led by persons with MS. For example, the stretches and exercises in the pdf entitled “Stretching for People with MS, An Illustrated Manual”.
When I was attending physical therapy, the therapist and I did many of these to ensure that my nerve channels were opened and my muscles limber. Having an illustrated guide is an awesome resource.
Furthermore, there are videos made by persons with MS and for persons with MS. This, too, is inspirational.
Medical research shows that exercise can reduce some of the pain and issues of MS. Plus, being active helps slow progression. From my point of view, these are key benefits of working with the team at the University of Alabama, Birmingham and doing this trial.
Finally, having a professional like Lexi who is working on rehab for persons with MS is critical because sometimes pure research does not have the eye of the patient. For example, try as I might to use the pedometer for tracking my steps, I was unable to open the cover of the device to set and reset my data. My feeling and sensations in my fingers simply could not do this fine motor task. Therefore, we accommodated; thank you Apple Watch health app. This can be insightful for researchers in the future to have more accessible devices or alternatives offered at the beginning of a trial.
These trials are beneficial for gathering patient and research perspectives. We can all contribute in small ways to a world with better outcomes for persons with MS. Get on a list for clinical trials through the National MS organization.
MS Fortunate 