Living with ALS (2024) / Chapter Skim
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Pages 35-52
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From page 35... ...
Ann Oliff is a caregiver for her spouse, Layne Oliff, who was diag nosed with primary lateral sclerosis in 2017 and then ALS in 2020 after lower motor neuron symptoms emerged. Ann retired from her career as a nurse and massage therapist to provide full-time care for Layne.
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From page 36... ...
The committee recommends actions Congress, NIH, CMS, ALS multidisciplinary care leaders, and community-based providers can take to build an inclusive and integrated care and research system, improve racial and ethnic equity in ALS care and research, align reimbursement to achieve the goals of the new system, and bolster VA clinical care, research, education, and informatics resources to further improve the comprehensiveness and reach of care for veterans.
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These entities can be the impetus for transforming the landscape of ALS care on which others can build. It will be incumbent on the ALS advocacy community working with people living with ALS, caregivers, genetic carriers, and more to push forward the committee's recommendations and create the momentum for change.
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2021b. Risk factors for amyotrophic lateral sclerosis: A regional United States case-control study.
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2020b. Environmental and occupa tional risk factors of amyotrophic lateral sclerosis: A population-based case-control study.
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cases in the United States and their proximity to multidisciplinary ALS clinics, 2013. Amyotroph Lateral Scler Frontotemporal Degener 19(1–2)
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2009. Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: Multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review)
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2021. Time to diagnosis and factors affecting diagnostic delay in amyotrophic lateral sclerosis.
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Mitsumoto, and C Pooled Resource Open-Access Als Clinical Trials.
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Guaranteeing equitable access to high-quality, multidisciplinary care for all individuals, regardless of socioeconomic status or geographical location, is of paramount importance. This would include providing affordable and equitable access to physical, occupational, speech, respiratory, and behavioral therapies; durable medical equipment, such as electric wheelchairs and noninvasive ventilators; and palliative care, all without having to prove 45
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From page 46... ...
This is likely to require discoveries in the pathogenesis of the disease, the development of effective biomarkers, a more responsive and effective clinical trials network, and other steps, as outlined in Chapters 5 and 6. Second, making ALS livable means helping all people with ALS and their families receive the current standard of care.
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From page 47... ...
There are also many care services and interventions that help people with ALS live better and longer. For example, reducing diagnostic delay, the early initiation of noninvasive ventilation, and the use of multidisciplinary care have significant effects on both survival and quality of life (de Almeida et al., 2021; Gwathmey et al., 2023; Witzel et al., 2022)
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The committee held public discussions with people living with ALS, people at genetic risk of developing ALS, and the individuals who care for and treat people with ALS (see Boxes 2-1 and 2-2)
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Asia created #AsiaDay in July 2020 where she does everything her heart desires, including a 90-minute massage, shopping, new restaurants, live events, or searching for the perfect mojito. -- Asia Jami, person living with ALSa a Presented by Jim Clingman, Paul Seifert, Desiree Galvez Kessler, Asia Jami, and Kristin Rankin at "Amyotrophic Lateral Sclerosis: Accelerating Treatments and Improving Quality of Life – public workshop" on August 23, 2023; Asia Jami's comment is a brief biography that was read out by study staff during the workshop.
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From page 50... ...
It also feels good to contribute to moving the science along, which I've heard from other people living with ALS, too." -- Kristin Rankin, person living with ALSc b Presented by Bruce Rosenblum at "Amyotrophic Lateral Sclerosis: Accelerating Treatments and Improving Quality of Life – public workshop" on August 10, 2023. c Personal communication received by the committee on February 8, 2024.
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We would do what ever we had to, and he was ready to do whatever we had to so we could keep a normal family unit as much as possible." -- Siobhan Pandya, caregiver for a person living with ALS "Our quality of life looked very different because Niesha was only 22 years old. To her, her quality of life was trying to accept what had happened and what was happening to her as a 22-year-old young adult, live with the fact that her body was changing, everything was changing and she didn't have any control over it, and make decisions for herself based on having a better quality of life." -- Vanessa Jackson, Mother/caregiver of person living/ passed away from ALS SOURCE: Presented by Siobhan Pandya and Vanessa Jackson at "Amyo trophic Lateral Sclerosis: Accelerating Treatments and Improving Quality of Life – public workshop" on August 23, 2023.
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From page 52... ...
Diagnostic Delays While advances have occurred over the past 20 years in understanding the genetic and environmental risk factors for ALS, delayed diagnosis remains a challenge (Falcão de Campos et al., 2021; Kraemer et al., 2010; Williams et al., 2013)
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