Wheelchair
A teen girl with a disability sits in a wheelchair and is helped by a doctor who approaches her in an empathetic way.

Society’s view of disability has undergone a tectonic shift over the last century or so. Where once disability was feared and imagined to be the result of divine wrath, disability is now increasingly normalized in society. 

We see hallmarks of this in everyday life: special lifts for those who are less mobile, as well as sign language interpreters during speeches and concerts. In the Malaysian language, the official term for those who are disabled have been changed from “people with disability” to “people with a different set of abilities.” 

There has also been a movement towards ensuring that disabled persons are well-represented in clinical trials. Much of clinical research is focused on preventing individuals from acquiring disability; however, it is only ethical that research is also conducted on how to improve the quality of life of patients who have already acquired some form of disability. 


Continue Reading

“Making space for and improving the experience for people with disabilities, neurodiversity, or a mental health condition requires the active investment of all facets of science: labs, institutions, and funding bodies; this includes our own practices as journals and publishers,” an editorial published in Communications Biology stated. 

In academic terms, disability refers to the loss of functional abilities that renders one dependent on others for activities of daily living. Although the world has made notable progress in normalizing disability and helping disabled persons fully integrate into the life of a society, disability remains a benchmark of clinical deterioration in many diseases.

Disability and Multiple Sclerosis 

Multiple sclerosis is a rare disease in which some form of disability can be expected at its very onset. However, the mechanism in which disability is acquired in multiple sclerosis differs slightly from that in other neurodegenerative diseases. 

Take Duchenne muscular dystrophy, for example. Its disease progression is relatively straightforward: progressive muscle weakness that eventually affects the respiratory muscles, causing death. 

Read about multiple sclerosis etiology 

In multiple sclerosis, there are 2 mechanisms in which disability are acquired. The first is a stepwise accumulation of disability due to inadequate recovery from a relapse episode. The second is the accumulation of disability independent of relapse activity. 

“While the former is considered to be the main source of permanent disability in relapsing multiple sclerosis, the latter is thought to drive the insidious progression typical in primary and secondary progressive multiple sclerosis,” Lublin and colleagues wrote in Brain. 

There is some debate over the role that relapses play in driving disability. Certainly, relapses often put a huge dent in patients’ quality of life. However, the extent to which the frequency of relapses drive disability in a patient with multiple sclerosis is still not fully elucidated. 

The recent introduction of disease-modifying therapies further complicates the picture on how disability is acquired in light of these powerful drugs. Studies have indicated that disease-modifying therapies improve long-term outcomes; however, what impact, if any, do they have on prolonging the time to the manifestation of disability? 

The answer to this question remains unclear, and medical researchers are currently investigating just how effective disease-modifying therapies are at prolonging time to disability (or stopping it altogether). 

What is considered “disability” varies according to disease type; in multiple sclerosis, “disability” is broadly defined as losing the ability to walk independently, coordinate hand movements successfully, or any other activity-limiting motor disturbances. The onset of disability often results in unemployment, an inability to fully participate in social settings, and the onset of depressive symptoms. 

Dealing With Disability 

Many governments around the world have some sort of safety net for patients acquiring disabilities. These initiatives should be wholeheartedly supported by the medical community, since we know that the acquisition of disability can have a nuclear effect on one’s quality of life and perception of one’s place in the world. 

In the medical literature on disability associated with multiple sclerosis, there have been a number of studies that look into how disability can be improved, if not reversed. 

One such study was conducted by Kalb and colleagues on the relevance of exercise and physical activity in improving outcomes in patients with multiple sclerosis throughout the disease course. They sought to “review the literature and reach consensus on optimal exercise and lifestyle physical activity recommendations for individuals with [multiple sclerosis] across major categories of disability on the [Expanded Disability Status Scale] and identify and address barriers and facilitators of participation,” they wrote. 

Their study divided exercise recommendations according to the patient’s EDSS score. Physical activity and exercise are recommended even in patients who have an EDSS score between 8 and 9 (signifying severe disability).

Read more about multiple sclerosis treatment 

For example, patients who have already acquired significant disability can still practice breathing and flexibility exercises on a daily basis. Exercise training involving the upper extremities, such as arm cycling, is likewise recommended. Patients who find it difficult to conduct active range of motion exercises can opt for passive range of motion exercises of all joints with evidence of restriction. 

The most important factor in carrying out these exercise routines is having adequate support — physical, social, and behavioral/cognitive. The message here is one of hope: even when significant disability is acquired, patients still have the means to get better, and adequate support can translate to a more meaningful participation in society. 

References

Disability shouldn’t limit accessibility in scienceCommun Biol. Published online July 16, 2021. doi:10.1038/s42003-021-02411-8

Lublin FD, Häring DA, Ganjgahi H, et al. How patients with multiple sclerosis acquire disability. Published online February 1, 2022. doi:10.1093/brain/awac016

Kalb R, Brown TR, Coote S, et al. Exercise and lifestyle physical activity recommendations for people with multiple sclerosis throughout the disease courseMult Scler. Published online April 23, 2020. doi:10.1177/1352458520915629