Overweight Motor Neurone Disease Patients with Bulbar Dysfunction: High Risk Gastrostomy Tube Insertion

2020 ◽  
Author(s):  
Angela Reddy ◽  
Shauna Sheridan ◽  
Reegan Puthussery ◽  
Joerg Steier ◽  
Eui-Sik Suh ◽  
...  
Keyword(s):  
High Risk ◽  
Motor Neurone ◽  
Gastrostomy Tube ◽  
Motor Neurone Disease ◽  
Tube Insertion ◽  
Bulbar Dysfunction

scholarly journals Traumatised, angry, abandoned but some empowered: a national survey of experiences of family caregivers bereaved by motor neurone disease

2021 ◽  
Vol 15 ◽  
pp. 263235242110385
Author(s):  
Samar M. Aoun ◽  
Kerrie Noonan ◽  
Geoff Thomas ◽  
Bruce Rumbold
Keyword(s):  
High Risk ◽  
Family Caregivers ◽  
National Survey ◽  
Service Providers ◽  
Risk Group ◽  
Complicated Grief ◽  
High Risk Group ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Clinical Narrative

Background: There are few illnesses as disruptive as motor neurone disease, a fatal neurodegenerative condition, where diagnosis introduces a clinical narrative of inevitable decline through progressive immobilisation into death. Recent evidence suggests that bereaved motor neurone disease family caregivers are more likely to be at moderate or high risk of complicated grief. Methods: Qualitative data from an anonymous national survey of bereaved motor neurone disease caregivers ( n = 393) was examined through thematic analysis to explore the experiences of people who are at low, moderate, and high risk of complicated grief. Up to 40% responded to three open-ended questions: How caregivers viewed their coping strategies; the advice they had for others and what had been positive about their experience. Results: Ten themes informed the narratives of illness and loss. All three groups shared similar experiences but differed in their capacity to address them. The low-risk group seemed to recognise the uncertainty of life and that meaning needed to be created by them. For the moderate-risk group, while motor neurone disease was a major disruption, they could with support, regroup and plan in different ways. The high-risk group did not have many resources, external or internal. They felt let down when professionals did not have answers and could not see or did not know how to change their ways of responding to this unwanted situation. Conclusion: The differences in these three profiles and their narratives of loss should alert health and community service providers to identify and address the caregivers’ support needs early and throughout the caregiving journey. Motor Neurone Disease Associations are involved throughout the illness journey and need to invest in a continuum of care incorporating end-of-life care and bereavement support. Community grief literacy and enhancement of social networks are keys to improved support from families and friends that can enable the focus to be on feelings of empowerment rather than abandonment.

Occupational Exposure to Electric Shocks and Extremely Low-Frequency Magnetic Fields and Motor Neurone Disease

2020 ◽  
Author(s):  
Grace X Chen ◽  
Andrea’t Mannetje ◽  
Jeroen Douwes ◽  
Leonard H Berg ◽  
Neil Pearce ◽  
...  
Keyword(s):  
Occupational Exposure ◽  
Magnetic Fields ◽  
Low Frequency ◽  
Population Based ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Cumulative Exposure ◽  
Spine Injury ◽  
Extremely Low Frequency ◽  
Electric Shocks

Abstract In a New Zealand population-based case-control study we assessed associations with occupational exposure to electric shocks, extremely low-frequency magnetic fields (ELF-MF) and motor neurone disease using job-exposure matrices to assess exposure. Participants were recruited between 2013 and 2016. Associations with ever/never, duration, and cumulative exposure were assessed using logistic regression adjusted for age, sex, ethnicity, socioeconomic status, education, smoking, alcohol consumption, sports, head or spine injury and solvents, and mutually adjusted for the other exposure. All analyses were repeated stratified by sex. An elevated risk was observed for having ever worked in a job with potential for electric shocks (odds ratio (OR)=1.35, 95% confidence interval (CI): 0.98, 1.86), with the strongest association for the highest level of exposure (OR=2.01, 95%CI: 1.31, 3.09). Analysis by duration suggested a non-linear association: risk was increased for both short-duration (<3 years) (OR= 4.69, 95%CI: 2.25, 9.77) and long-duration in a job with high level of electric shock exposure (>24 years; OR=1.88; 95%CI: 1.05, 3.36), with less pronounced associations for intermediate durations. No association with ELF-MF was found. Our findings provide support for an association between occupational exposure to electric shocks and motor neurone disease but did not show associations with exposure to work-related ELF-MF.

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