MSVirtual2020: Embracing resilience in MS—a new perspective from COVID-19 pandemic

[Suebee]

raspberry sound.
im a bit grumpy today, so please excuse. And having had MS for almost 15 yrs, I recommend that newly diagnosed MSers take this study with a grain of salt, or ...xanex. This race is a marathon, not a sprint. Resilance, coping techniques, grit, hope, faith, what ever builds you up,, fortifies you, do that. Will it always work. No. Does that mean you failed at being resilant? No. I dont understand why this type of study reincarnates itself with every new grad student class. I think such glib treatment of the psychological impact of living with chronic illness is not helpful. In my view, it also kind of puts blame on the chronically ill for not being resilant enough. Gasp! Our disease makes us feel frustrated and down??? The shame

Here is a list I personally think is more instructive to live your best life with MS written by Therese J. Borchard, who has a chronic illness:
8 Ways to Live With a Chronic Illness

1. Let go of the blame.
2. Distinguish your illness from yourself.
3. Address envy.
4. Honor your limitations.
5. Connect with universal suffering.
6. Use your pain for good.
7. Let go of expectations.
8. Find your tribe."

if you want more specifics, here is link to her article https://psychcentral.com/blog/8-ways...ronic-illness/

Since Im sticking my tongue out about the glibness of the article on resilance, I will offer some more topics. I think researching how support systems can help us MSers be more resilant would actually lead to helping improve our quality of life. Let's see, are there any areas that might improve MSers lives????? Off the top of my head: Work accomodations/ part-time/ telecommute; insurer supported strenght maintenance; ADA access to community public areas; occupational therapy for help to streamline ones responsibilites at the office and home and compensate for deficits (beyond using a chair to do the laundry . .). Making Accupuncture, massage, art, music, or Equestrian therapy available to more than the wealthy; hospital supported regular family group counseling for MSers and family; Apps that help us track our symptoms in a meaningful way without giving up our privacy; throwing out the slow and steady model and utilizing HIIT training; acknowledging that FES benefits MSers and making it insurer supported; making provigil on label rather than off label. Any other topics come to your minds?

[ActiveMSers]

LB1171 - Embracing resilience in Multiple Sclerosis: a new perspective from COVID-19 pandemic. (ID 1742)

Speakers
E. Sbragia
Authors
E. Sbragia E. Colombo C. Pollio M. Cellerino C. Lapucci M. Inglese G. Mancardi G. Boffa
Presentation Number
LB1171
Presentation Topic
Neuropsychology and Cognition

Abstract

Background
Coronavirus Disease 2019 (COVID-19), a severe acute respiratory syndrome due to Coronavirus 2 (SARS-CoV-2) infection, determined cross-sectional social and emotive consequences, representing an unprecedented social experiment. Past epidemiological experiences and recent studies dealing with COVID-19 pandemic and healthy population already showed the deep albeit heterogeneous psychological repercussions of pandemics. Nevertheless, little is known about the relationship between COVID-19 outbreak and patients with chronic diseases, Multiple Sclerosis (MS) in particular, and about the possible strategies for boosting resilience, a well-known protective and buffering instrument helping in facing the challenges of life.

Objectives
To assess the changes in mental distress during COVID-19 outbreak in patients with MS (pw-MS) and to identify predictive factors that could help in developing resilience and facing COVID-19 pandemic.

Methods
We enrolled 106 pw-MS (69 relapsing-remitting, 20 secondary-progressive and 17 primary-progressive) who had undergone neuropsychological assessment before outbreak (between January the 1st 2019 and March the 1st 2020): patients were previously tested with Brief International Cognitive Assessment for MS (BICAMS), Hospital Anxiety and Depression Scale (HADS) and patient-reported MS Neuropsychological Screening Questionnaire (MSNQ-P). All patients were asked to fulfill an online survey comprehensive of sociodemographic information (e.g. marital and employment status), HADS self-rating Scale, MSNQ-P Questionnaire and finally Connor-Davidson Resilience self-rating Scale (CD-RISC 25), in order to evaluate resilience. Statistical analyses (repeated-measures ANCOVA) were performed using SPSS 23.

Results
Even if no significant changes in HADS and MSNQ-P scores were detected during COVID-19 pandemic in our population, pre-existing lower HADS and MSNQ-P scores were found to be significantly (p<0.0001) and independently associated with a better resilience attitude; conversely, no demographic, disease- and treatment-related elements resulted predictive neither of anxiety, depression and perceived cognitive status nor of better resilient behaviour

Conclusions
Our study confirms the fundamental role of anxiety diagnosis and of neuropsychological evaluation in pw-MS, outlining its compelling role in predicting a resilient and positive response in case of pervasive commitment and the necessity of a comprehensive care for pw-MS.