I think that MS is a lonely disease, for most days, outsiders do not see the toll MS carries. After 5 weeks of working with my clinical researcher, Lexi, I have to say that I have contributed a bit to her work by explaining how it feels to have and deal with MS. I believe most patients have neither the time or energy to educate others about what is or is not working in their lives. One example, I suggested the newseletter on self-efficacy could have more references, some commentary on mindset and metacognitive, and perhaps some videos on handling your own self-effficacy when your body does not want to obey your belief that you can do something.
In addition, from my work with Lexi, I have gained some interesting learning opportunities from the posted sites in the newsletter and her suggestion to attend an upcoming conference from The Michigan Holistic Health and Wellness Forum for MS, which I have signed up for.
Lexi is open to this type of sharing. I sense that the research work is fairly established in a linear fashion. This disease does not do linear. So having the opportunity to participate in a study from the Exercise Neuroscience Research Laboratory, Department of Physical Therapy at the University of Alabama is an opportunity for authentic give and take of information. I hope to contribute more to with work because the sense of facing MS along and with limited resources is not the outcome that most people desire. For Lexi and her research group, I am grateful.
MS Fortunate 