As a physiatrist, I often reflect on the construct of disability. Setting aside definitions set forth by agencies providing financial or other material support to adult individuals (when and where such programs are available), various disability models have been proposed. The ones I am most familiar with are the medical model and the social model. The International Classification of Functioning, Disability, and Health (ICF), often used by rehabilitation providers and researchers, proposes to combine these 2 models in its conceptual framework (body functions and structures, activity, participation, environmental, and personal factors). By design, the ICF is primarily focused on health, which is consistent with its purpose.
Alternatively, I have recently become acquainted with the work of Elizabeth Barnes, PhD, professor of philosophy at the University of Virginia, pertaining to physical disability. Barnes proposes a “mere-difference” view of physical disability, which takes into account “intrinsic loss(es)” (akin to alterations of body functions or structures, which health care professionals are well acquainted with) while postulating that disability does not systematically make someone worse off. To me, this view does not deny the anguish and suffering experienced by our patients with multiple sclerosis (MS), or the need for concerted efforts to treat and cure MS. At the same time, it opens the door to some of the positive aspects of living with a disability spontaneously brought up by some of my patients, and it may help account for the fact that, in some studies, quality of life does not seem to uniformly decline as physical disability worsens. At a minimum, it encourages me to be cautious of my own ableism and to listen to my patients more carefully.
Can a seldom-assessed alteration in body function, made famous by the ongoing pandemic, become a marker of the MS disease process? In their scoping review, Todd and colleagues summarize evidence from longitudinal studies of measures of olfactory function in MS. Associations between changes in olfactory function and markers of inflammation or neurodegeneration suggest a potential for its use as a biomarker, pending additional evidence. Educational credit is offered in relation to this article.
Exercise and physical activity prescription is generally recommended in the management of MS as a health promotion and self-empowerment strategy; however, patients often seek specific exercise recommendations from providers. Santoyo-Medina and colleagues propose outdoor Nordic walking as an exercise modality that is feasible, safe, and possibly effective on both physical and emotional status.
The use of nonconventional treatments in MS is also often related to empowerment and self-efficacy. Krogh and colleagues offer insight into why highly educated women with MS turn to complementary and alternative therapies. The interest in a holistic approach to MS management and the strong reliance on the personal experiences of self or others need to be kept in mind in our conversations regarding treatment options and preferences. Rainka and colleagues add to the growing body of evidence on the use of cannabis to manage pain and spasticity related to MS. Unfortunately, as with many other conventional and alternative treatments, cost prevented continued use for some.
I have come to realize that I often underestimate the role of environmental factors on the health and well-being of individuals with MS, and as a consequence, I do not include them as often as I should in treatment decisions. What we call “environment” encompasses a bewildering variety of elements, such as the “health care ecosystem,” as illustrated in the article by Tabatabaei-Jafari and colleagues on the provision of health care services in the Australian Capital Territory. The impact of the human environment is not to be ignored either, including social support (Eizaguirre and colleagues) and the distress level of care partners (Douglas and Plow).
It always brings me special pleasure to write the editorial that coincides with the annual meeting of the Consortium of Multiple Sclerosis Centers. For me, attending this meeting brings to life the reality and vibrancy of our community, united under the common mission of providing optimal comprehensive care to individuals with MS. I hope all our readers who will be able to attend in person have a safe and enriching experience, and I encourage them to connect with our team at our exhibit booth.