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Bibliographies thématiques / FAMILIAL AMYOTROPHIC LATERAL SCLEROSIS / Livres

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Auteur : Grafiati

Publié le 11 septembre 2023

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1

Hiroshi, Mitsumoto, dir. Amyotrophic lateral sclerosis : A guide for patients and families. 3^e éd. New York, NY : Demos Health, 2009.

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2

Hiroshi, Mitsumoto, et Munsat Theodore L. 1930-, dir. Amyotrophic lateral sclerosis : A guide for patients and families. 2^e éd. New York : Demos, 2001.

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3

Massachusetts. Bureau of Environmental Health. Environmental Epidemiology Program. The Amyotrophic Lateral Sclerosis (ALS) Disease Registry : Frequently asked questions for patients and families. Boston, Mass.] : Massachusetts Department of Public Health, Bureau of Environmental Health, Environmental Epidemiology Program, 2009.

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4

Brown, Robert H., Michael Swash et Piera Pasinelli. Amyotrophic Lateral Sclerosis. 2^e éd. London : CRC Press, 2021. http://dx.doi.org/10.1201/9781003076445.

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5

Cosi, V., Ann C. Kato, W. Parlette, P. Pinelli et M. Poloni, dir. Amyotrophic Lateral Sclerosis. Boston, MA : Springer US, 1987. http://dx.doi.org/10.1007/978-1-4684-5302-7.

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6

MD, Brown Robert H., Swash Michael et Pasinelli Piera, dir. Amyotrophic lateral sclerosis. 2^e éd. Abingdon [England] : Informa Healthcare, 2006.

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7

National Institute of Neurological Disorders and Stroke (U.S.). Office of Communications and Public Liaison, dir. Amyotrophic lateral sclerosis. Bethesda, Md : U.S. Dept. of Health and Human Services, Public Health Service, National Institutes of Health, 2000.

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8

1949-, Chad David A., et Pioro Erik P. 1955-, dir. Amyotrophic lateral sclerosis. Philadelphia : F.A. Davis, 1998.

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9

Hiroshi, Mitsumoto, Przedborski Serge et Gordon Paul H, dir. Amyotrophic lateral sclerosis. Boca Raton : Taylor & Francis, 2006.

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10

Clifford, Rose F., dir. Amyotrophic lateral sclerosis. New York, N.Y : Demos, 1990.

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11

1947-, Brown Robert H., Meininger Vincent et Swash Michael, dir. Amyotrophic lateral sclerosis. London : Martin Dunitz, 2000.

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12

Returning to earth. New York : Grove Press, 2007.

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13

A, Murray Christine, dir. Amyotrophic lateral sclerosis : New research. New York : Nova Biomedical Books, 2006.

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14

1941-, Smith Richard Alan, dir. Handbook of amyotrophic lateral sclerosis. New York : Dekker, 1992.

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15

Ludwig, Gutmann, et Mitsumoto Hiroshi, dir. Advances in amyotrophic lateral sclerosis. Boston, Mass : Little, Brown, 1996.

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16

G, Farrell Jason, dir. New amyotrophic lateral sclerosis research. New York : Nova Biomedical Books, 2008.

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17

National Institute of Neurological Disorders and Stroke (U.S.). Office of Communications and Public Liaison. ALS (Amyotrophic lateral sclerosis) fact sheet. Bethesda, MD : National Institutes of Health, 2010.

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18

Motor neurone diseases : Amyotrophic lateral sclerosis. London : Chapman & Hall, 1995.

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19

author, Sands Michael 1962, dir. Hold on, let go : Facing ALS with courage and hope. [North Vancouver, British Columbia] : Influence Publishing, 2015.

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20

Behind those eyes : Our journey with ALS. Renfrew, Ont : General Store Publishing House, 2013.

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21

T, Caroscio James, dir. Amyotrophic lateral sclerosis : A guide to patient care. New York : Thieme, 1986.

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22

Respiratory management of ALS : Amyotrophic lateral sclerosis. Sudbury, Mass : Jones and Bartlett, 2009.

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23

Serratrice, Georges. Pathogenesis and therapy of amyotrophic lateral sclerosis. Philadelphia : Lippincott-Raven, 1995.

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24

Munsat, Theodore L., et Hiroshi Mitsumoto. Amyotrophic Lateral Sclerosis : A Guide for Patients and Families. Demos Medical Publishing, 2001.

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25

Amyotrophic Lateral Sclerosis : A Guide for Patients and Families. ReadHowYouWant.com, Limited, 2010.

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26

Mitsumoto, Hiroshi. Amyotrophic Lateral Sclerosis : A Guide for Patients and Families. Springer Publishing Company, Incorporated, 2009.

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27

Lulé, Dorothée, Albert C. Ludolph et Andrea Kübler. Psychological morbidity in amyotrophic lateral sclerosis : Depression, anxiety, hopelessness. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780198757726.003.0003.

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Amyotrophic lateral sclerosis is a devastating condition with progressive loss of movement, speech, and respiratory function, and no available cure. Following the development of clinical symptoms and after receiving a diagnosis, patients may develop psychological morbidity, such as depression, anxiety, and hopelessness. However, many patients adjust successfully in the course of the disease and maintain good psychological well-being, so that a decline in psychological well-being does not necessarily accompany loss of physical function. There are several major determinants of good psychological adjustment to chronic and terminal disease—intrinsic factors such as coping strategies and internal locus of control, and extrinsic factors such as high (perceived and actual) social support by families and multidisciplinary professional teams. Providing care with a holistic view of the patient is probably the most effective approach to supporting patients’ psychosocial adjustment to the disease and minimizing depression, anxiety, and hopelessness.

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28

Watermeyer, Tamlyn J., et Laura H. Goldstein. Psychological research in amyotrophic lateral sclerosis : Past, present, and future. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780198757726.003.0001.

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This chapter, of particular interest to those interested in psychological treatments for people with amyotrophic lateral sclerosis (ALS), outlines earlier work that sought to identify correlates of reduced well-being and quality of life in people with ALS and delineates possible targets for intervention. In this context, the chapter then evaluates several studies that have investigated psychological interventions for optimizing well-being in people with ALS and their caregivers. The chapter reviews current efforts to address the paucity of interventional research in this patient group, focusing on five therapies that have so far been evaluated for treatment efficacy. These therapies include hypnosis, mindfulness, cognitive behavioural therapy, expressive disclosure therapy, and dignity therapy. The main findings from these studies and their clinical implications for people with ALS and their families are discussed. Recommendations for future research are considered, together with a discussion of the implementation of such interventions in therapeutic or multidisciplinary settings.

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29

Mitsumoto, Hiroshi. Amyotrophic Lateral Sclerosis : A Guide for Patients and Families, Third Edition. Springer Publishing Company, Incorporated, 2009.

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30

Amyotrophic Lateral Sclerosis : A Guide for Patients and Families, 3rd Edition. ReadHowYouWant.com, Limited, 2011.

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31

Briggs, John, Jerry Beller, Beller Health et Brain Research. Amyotrophic Lateral Sclerosis : Guide for Patients, Families, Caregivers, and Medical Professionals. Independently Published, 2020.

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32

Rice, Ed. If They Could Only Hear Me : A collection of personal stories about ALS and the families that have been affected. BookSurge Publishing, 2005.

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33

Aguirre, T. Genetic and Functional Studies of the Cu/Zn Superoxide Dismutase Gene in Belgian Patients with Familial or Sporadic Amyotrophic Lateral Sclerosis. Leuven University Press, 1998.

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34

I Found My Tribe. Penguin Random House, 2018.

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35

I Found My Tribe. Charnwood, 2018.

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36

I found my tribe. 2018.

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37

Fitzmaurice, Ruth. I Found My Tribe. Penguin Random House, 2017.

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38

Hamri, Sanaa, et Craig Brewer. Empire. 2017.

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39

1972-, Williams Jennifer, et Suggs Rob, dir. Tenacious : How God used a terminal diagnosis to turn a family and a football team into champions. 2013.

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40

Hayertz, Marchelle. Amyotrophic Lateral Sclerosis Treatment : Amyotrophic Lateral Sclerosis Treatment and Management : Amyotrophic Lateral Sclerosis Pronunciation. Independently Published, 2021.

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41

Mitsumoto, Hiroshi, Serge Przedborski et Paul H. Gordon. Amyotrophic Lateral Sclerosis. Taylor & Francis Group, 2005.

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42

Pagnini, Francesco, et Zachary Simmons, dir. Amyotrophic Lateral Sclerosis. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780198757726.001.0001.

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Amyotrophic lateral sclerosis: Understanding and optimizing quality of life and psychological well-being presents a comprehensive and up-to-date review of the enhancement of the lives of people with amyotrophic lateral sclerosis (ALS) and their caregivers. ALS is a progressive, fatal neurodegenerative disorder. No current medical therapy can reverse or stop its progression, and the promotion of quality of life and psychological well-being is a central component of ALS care. Health care professionals who work in this field should incorporate attention to psychological, emotional, and relational aspects of the disease into their approach to care. This book provides some of the knowledge and direction necessary for optimizing the quality of care for individuals with ALS and their caregivers. Topics discussed include an ALS-centred view of quality of life, depressive features, anxiety, resilience, cognitive impairment, complementary and alternative medicines, and psychological research. Specific elements of ALS, such as end-of-life concerns and bulbar dysfunction, are described through the lens of their psychological impact. There is extensive discussion of the development of new psychological treatments, as well as the impact and incorporation of new technologies, with the goal of fostering optimal quality of life and psychological well-being as key parts of a holistic approach to care for the patients and for those who are close to such individuals.

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43

Ferraiuolo, Laura, et Stephen J. Kolb. Amyotrophic Lateral Sclerosis. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780199937837.003.0026.

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An overriding mystery of ALS pathogenesis orbits around the molecular basis of selective motor neuron vulnerability and clouds our view. There are likely mechanisms involved in the initiation of motor neuron loss and mechanisms involved in the progression of motor neuron loss once initiated. Motor neuron vulnerability is likely related to the unique biological characteristics of these cells. This chapter introduces central molecular pathways that appear to be involved in the pathogenesis of ALS, and highlights why dysregulation of these mechanisms could lead to motor neuron death. Indeed, there are likely mechanisms involved in the initiation of motor neuron loss and mechanisms involved in the progression of motor neuron loss once initiated. Our task is to determine those mechanisms that are relevant to ALS pathogenesis that may be targeted therapeutically to prevent onset and/or halt progression.

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44

Harms, Matthew B., et Timothy M. Miller. Amyotrophic Lateral Sclerosis. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780199937837.003.0027.

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Recent advances in sequencing technologies have dramatically expanded the number of genes associated with amyotrophic lateral sclerosis, including rare but highly penetrant causative mutations as well as common risk alleles. This chapter discusses these gene discoveries and how they have implicated a diverse array of biological pathways essential for motor neuron health and have begun to inform our understanding of ALS pathogenesis as a heterogeneous and multistep process. Insights from these discoveries are leading to a new generation of targeted therapies directed at specific genes and are poised to inform how patients with amyotrophic lateral sclerosis are evaluated and treated in the clinic.

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45

Wainger, Brian J. Amyotrophic Lateral Sclerosis. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780199937837.003.0028.

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Mouse and cellular models of ALS including stem cells have revealed tremendous insight into the molecular processes that lead to ALS. Models of ALS and other neurodegenerative diseases have led to emergent molecular themes that span several diseases. Future models must account for neuronal subtype specificity of different neurodegenerative diseases, particularly between tightly related diseases such as FTD and ALS. Human iPSC-derived motor neurons offer promise both with regard to the use of human cells and in particular the ability to model sporadic disease, which is critically important given the overwhelming abundance of sporadic disease in ALS and other neurodegenerative diseases.

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46

Harris, Brent T., Galam A. Khan et Saed Sadeghi. Amyotrophic Lateral Sclerosis. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780199937837.003.0029.

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Although the basic gross and microscopic pathological changes in amyotrophic lateral sclerosis (ALS) have been known for more than 100 years, emerging technology and research into the cellular and molecular changes found in this disease are challenging our understanding about the pathogenesis and pathophysiology. All cell types of the CNS/PNS as well as circulating immune cells have been implicated in the pathology of ALS. Numerous genes, their proteins, and environmental factors have also been associated. However, we still do not understand the specific gene-environmental interactions that bring about and drive this devastating disease in most cases. This short chapter does not address the causal factors and molecular pathogeneses that have been hypothesized and actively researched in the pathology of ALS-as these are discussed in other sections of this text. Here, it shows and discusses the basic pathological changes at the tissue and cellular levels that help to establish the pathological diagnosis of ALS at autopsy.

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47

Mitsumoto, Hiroshi, Serge Przedborski et Paul H. Gordon, dir. Amyotrophic Lateral Sclerosis. CRC Press, 2005. http://dx.doi.org/10.1201/b14133.

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48

Sattler, Rita, et Jeffrey Rothstein. Amyotrophic Lateral Sclerosis. Oxford University Press, 2013. http://dx.doi.org/10.1093/med/9780199794591.003.0063.

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This is a digitally enhanced text. Readers can also see the coverage of this topic area in the second edition of Neuroglia. The second edition of Neuroglia was first published digitally in Oxford Scholarship Online and the bibliographic details provided, if cited, will direct people to that version of the text. Readers can also see the coverage of this topic area in the ...

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49

Araki, Toshiyuki, dir. Amyotrophic Lateral Sclerosis. Exon Publications, 2021. http://dx.doi.org/10.36255/exonpublications.amyotrophiclateralsclerosis.2021.

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50

1952-, Brown Robert H., Meininger Vincent et Swash Michael, dir. Amyotrophic lateral sclerosis. London : Martin Dunitz, 2000.

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