Tracheostomy in motor neurone disease

2019 ◽  
Vol 19 (6) ◽  
pp. 467-475 ◽  
Author(s):  
Martin R Turner ◽  
Christina Faull ◽  
Christopher J McDermott ◽  
Annabel H Nickol ◽  
Jonathan Palmer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Ventilatory Support ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Complex Issue ◽  
Current Prevalence ◽  
Withdrawal Of Therapy ◽  
Lateral Sclerosis

Tracheostomy-associated ventilation for the respiratory insufficiency caused by amyotrophic lateral sclerosis (motor neurone disease (MND)) is a complex issue with practical, ethical and economic dimensions. This article considers the current prevalence of tracheostomy in MND, the evidence for its benefit both for survival and quality of life, and the practicalities of its implementation. The decision to request invasive ventilatory support is among the most challenging for those living with MND. Neurologists should be prepared to discuss this option openly and objectively: we suggest a framework for discussion, including withdrawal of therapy.

scholarly journals Palliative care in motor neurone disease: where are we now?

2019 ◽  
Vol 12 ◽  
pp. 117822421881391 ◽  
Author(s):  
David J. Oliver
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Ventilatory Support ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Multidisciplinary Assessment

Palliative care has a very important role in the care of patients with motor neurone disease and their families. There is increasing emphasis on the multidisciplinary assessment and support of patients within guidelines, supported by research. This includes the telling of the diagnosis, the assessment and management of symptoms, consideration of interventions, such as gastrostomy and ventilatory support, and care at the end of life. The aim of palliative care is to enable patients, and their families, to maintain as good a quality of life as possible and helping to ensure a peaceful death.

scholarly journals Independent home use of a brain-computer interface by people with amyotrophic lateral sclerosis

Neurology ◽  
2018 ◽  
Vol 91 (3) ◽  
pp. e258-e267 ◽  
Author(s):  
Jonathan R. Wolpaw ◽  
Richard S. Bedlack ◽  
Domenic J. Reda ◽  
Robert J. Ringer ◽  
Patricia G. Banks ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Brain Computer Interface ◽  
Computer Interface ◽  
It Use ◽  
Technical Problems ◽  
Rapid Disease Progression ◽  
And Performance ◽  
Lateral Sclerosis

ObjectiveTo assess the reliability and usefulness of an EEG-based brain-computer interface (BCI) for patients with advanced amyotrophic lateral sclerosis (ALS) who used it independently at home for up to 18 months.MethodsOf 42 patients consented, 39 (93%) met the study criteria, and 37 (88%) were assessed for use of the Wadsworth BCI. Nine (21%) could not use the BCI. Of the other 28, 27 (men, age 28–79 years) (64%) had the BCI placed in their homes, and they and their caregivers were trained to use it. Use data were collected by Internet. Periodic visits evaluated BCI benefit and burden and quality of life.ResultsOver subsequent months, 12 (29% of the original 42) left the study because of death or rapid disease progression and 6 (14%) left because of decreased interest. Fourteen (33%) completed training and used the BCI independently, mainly for communication. Technical problems were rare. Patient and caregiver ratings indicated that BCI benefit exceeded burden. Quality of life remained stable. Of those not lost to the disease, half completed the study; all but 1 patient kept the BCI for further use.ConclusionThe Wadsworth BCI home system can function reliably and usefully when operated by patients in their homes. BCIs that support communication are at present most suitable for people who are severely disabled but are otherwise in stable health. Improvements in BCI convenience and performance, including some now underway, should increase the number of people who find them useful and the extent to which they are used.

Quality-of-Life Assessments That Can Be Used for Patients Diagnosed With Amyotrophic Lateral Sclerosis: A Scoping Review

2021 ◽  
Vol 75 (Supplement_2) ◽  
pp. 7512500033p1
Author(s):  
Addie Broom ◽  
Hannah Prescott ◽  
Mallorie Savage ◽  
Addie Broom ◽  
Emily Crawford ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Scoping Review ◽  
Lateral Sclerosis

Coping strategies in relation to quality of life in amyotrophic lateral sclerosis

2011 ◽  
Vol 45 (1) ◽  
pp. 131-134 ◽  
Author(s):  
Sébastien Montel ◽  
Laurence Albertini ◽  
Elisabeth Spitz
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Coping Strategies ◽  
Lateral Sclerosis

scholarly journals AN AYURVEDIC CASE REPORT ON AMYOTROPHIC LATERAL SCLEROSIS

2021 ◽  
Vol 9 (11) ◽  
pp. 2903-2908
Author(s):  
Ambika. K ◽  
Arundhathi. K ◽  
Lekshmi G. Krishna
Keyword(s):  
Quality Of Life ◽  
Skeletal Muscle ◽  
Amyotrophic Lateral Sclerosis ◽  
Case Report ◽  
Lower Limbs ◽  
Skeletal Muscle Weakness ◽  
Treatment Principle ◽  
Severe Type ◽  
Lateral Sclerosis

Amyotrophic Lateral Sclerosis (ALS) is a common and most severe type of Motor Neuron Disease. It is characterized by progressive skeletal muscle weakness, wasting and fasciculations. Survival is for 3-5 years, and the death is from respiratory paralysis. The incidence of ALS is between 0.6 and 3.8 per 100000 persons per year. Males are predominantly affected. Here is a case report of 45yrs old male who presented with complaints of difficulty in walking since 3years, with an insidious asymmetric onset of weakness of bilateral lower limbs with wasting and fasciculations. In Ayurveda, the case was symptomatologically diagnosed as Mamsa Sosha, which occurs as the result of obstruction of Snayu and Rakthadhamanis (Mamsavaha srotomoolas). The assessment was done using ALSFRS-R Scale. The treatment was aimed at improving the quality of life and also decreasing the rate of disease progression. The treatment principle adopted was Srothosodhana (Ama- Avaranaghna cikitsa) and Brimhana. Promising results were obtained after treatment. Keywords: ALS, MND, Ayurveda, Avaranaghna cikitsa, Mamsa Sosha, Mamsa Kshaya

scholarly journals Amyotrophic lateral sclerosis patients' quality of life and their caregiver burden during COVID-19 pandemic

2021 ◽  
Vol 429 ◽  
pp. 117701
Author(s):  
Alessandro Bombaci ◽  
Silvia Giusiano ◽  
Laura Peotta ◽  
Barbara Iazzolino ◽  
Enza Mastro ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Caregiver Burden ◽  
Lateral Sclerosis
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