Answered Questions is a monthly resource for the Spanish language Disability Community that fills an information need. This month’s question is: My dad was recently diagnosed with Amyotrophic Lateral Sclerosis (ALS). I would like more information and resources to help my dad. Can you point me in the right direction? This edition of Answered Questions includes items that define ALS and discuss a brain-computer interface to operate an augmentative and alternative communication system; quality of life perspectives of people with ALS and their caregivers; high-quality mobility devices and community involvement and independence; a system to help connect to social media; physical therapy; stem cell therapy; and the socioeconomic impact of ALS and similar disorders. More about Answered Questions.
What is ALS?
According to the National Institute of Neurological Disorders and Stroke (NINDS), amyotrophic lateral sclerosis (ALS) (in English), also known as Lou Gehrig’s disease, is a “group of rare neurological diseases that mainly involve the nerve cells (neurons) responsible for controlling voluntary muscle movement”. Chewing, walking, and talking are produced by voluntary muscle movements and are, thus, affected by ALS. ALS is progressive and, currently, there is no cure and no treatments to effectively reverse or halt the progression of ALS. Early symptoms of ALS may include muscle weakness or stiffness and all muscles under voluntary control are gradually affected.
The Centers for Disease Control and Prevention (CDC) estimated in 2016 that almost 16,000 Americans have ALS. ALS is a common neuromuscular disease around the world that affects people of all races and ethnic backgrounds. Risk factors for developing ALS include age – symptoms develop between the ages of 55 and 75; gender – men are slightly more likely to develop ALS than women, but the difference decreases as people age; and race/ethnicity – Caucasians and non-Hispanics are more likely to develop ASL. The causes of ALS include genetics and environmental factors; treatments include medication, physical therapy, speech therapy, nutritional support, and breathing support.
The ability to talk is affected by ALS. The project, Real World Testing of a Brain-Computer Interface to Operate a Commercial Augmentative and Alternative Communication System (in English) (90IFDV0002), is testing an augmentative and alternative communication (AAC) and brain-computer interface (BCI) prototype that advances the effectiveness of BCI communication and is improving in-home training and treatment necessary for successful daily communication through the use of AAC-BCI. The anticipated results include greater access to AAC options for people with ALS and other communication disabilities, their families, and professionals.
From the NARIC Collection:
The article, Quality of life perspectives of people with amyotrophic lateral sclerosis and their caregivers (in English) (J78837), discusses a study that explored the differences in perspectives on quality of life (QOL) between people with ALS and their caregivers. The concept of QOL is complex and is influenced by multiple factors; people with ALS and their caregivers may have different perspectives on QOL. The results of the study showed perspective differences and similarities between people with ASL and their caregivers, which highlight the importance of medical professionals emphasizing communication between people with ALS and their caregivers in regards to each other’s emotional well-being, spirituality, social wellness, and overall mental wellness.
Research In Focus:
Although ALS is a neurological disease, it may affect a person’s ability to walk and participation in the community. The Research In Focus article, For People with Mobility Disabilities, High-Quality Mobility Devices May Be Key for Community Involvement and Independence, discusses a study from the Rehabilitation Research and Training Center on Improving Measurement of Medical Rehabilitation Outcomes (in English) (90RT5008) that looked at the connections between users’ ratings of mobility device quality and their perceptions of how much their device benefited them, as well as between the ratings of mobility device benefit and their ability to participate in their communities. The researchers noted that mobility devices can both help and hinder participation in the community: When they function well, mobility devices can offer access and autonomy, but device malfunctions or maintenance needs can interfere with community participation.
The article, A system to assist people with disabilities in accessing social networks, discusses a development project at the University of Valladolid in Spain where researchers created a brain-computer interface that assists people with serious motor problems and difficulties speaking in accessing social networks, such as Twitter and Telegram – an instant messaging app, on their smart phones. During the testing phase of development, researchers found that 80.6% of users with disabilities were able to use the system with precision and that the users were satisfied with the system. The researchers suggest further research to look at possible challenges in the use of these systems faced by people with involuntary tremors or who have difficulties controlling where they look.
The blog post, Work from Physical Therapy in Amyotrophic Lateral Sclerosis from the LaSalle Functional Rehabilitation Institute (LaSalle IRF), discusses the history of ALS and describes what ALS is. It also discusses how physical therapy for people with ALS is based on soft aerobic exercises, such as walking; resistance exercises to improve cardiovascular health; and exercises that work on stretching and movement to help with spasticity. The blog post also discusses respiratory therapy, hydrotherapy, and other beneficial therapies.
Stem Cell Therapy:
The article, Cell therapy in amyotrophic lateral sclerosis: Science and controversy, discusses how stem cell therapy is seen as a possible alternative treatment of different degenerative diseases, such as ALS; however, the mechanism of action of the implanted cells and which cells to use is still unclear. Also, the article discusses how clinical trials with certain types of stem cells are not very conclusive and have not established stem cell therapy as an alternative treatment in ALS. Despite the scientific evidence, several clinical trials were conducted in the early 2000’s that offered stem cell treatments for diseases like ALS, which gave rise to “cellular tourism” and negative reactions within the scientific community.
The article, Report by the Spanish Foundation for the Brain on the social impact of amyotrophic lateral sclerosis and other neuromuscular disorders (I244836), discusses a study that reviewed current data on the epidemiology, mortality, and dependence rates, as well as the socioeconomic impact of ALS and other neuromuscular diseases in Spain; and recorded the way neurological care for these patients is organized. The researchers found that ALS and similar diseases cause considerable disability and dependence, which then directly affects health care and social costs and were calculated at about 50,000 euros per year per person.
- The ALS Association provides information in Spanish about ALS that includes the history of ALS, what it is, its symptoms and forms, and getting diagnosed. The Association also provides information on genetic tests for ALS, brochures and videos, and ways to find assistance in your community.
- The Spanish Foundation for the Promotion of Research of Amyotrophic Lateral Sclerosis (FUNDELA) was founded with the specific objective of encouraging research about ALS in Spain. The Foundation also disseminates information on the advances in scientific knowledge of ALS, in its multiple fields and aspects, by periodically preparing scientific bulletins, sharing information from international congresses, and sponsoring training activities and media interventions. FUNDELA also supports research by providing grants to Spanish and international research teams and supports social awareness ALS in order to increase the knowledge of ALS within the general public, as well as health professionals.
- The adEla Association, an ALS-related association in Spain, is a not-for-profit organization whose mission is to improve the quality of life of people affected by ALS or other neuromuscular diseases by providing information, guidance, advice and support to people with ALS and their families; offering physical therapy, speech therapy, and physiology services to people with ALS; conducting specific workshops for people with ALS and their caregivers in their office and at participants’ homes; and creating awareness in society about the effects of ALS and stimulating public support for research. The Association also provides news, blog posts, and links to organizations of interest to people with ALS, their families, and caregivers.
About Answered Questions
Each month, we look through the searches on our blog and through the information requests made by our patrons who speak Spanish and pick a topic that fills the largest need. Each resource mentioned above is associated with this month’s information need. We search the various Spanish language news sources and feeds throughout the month to bring you these articles. With the exception of the NIDILRR Projects, From the NARIC Collection, and Further Investigation, all the linked articles and resources are in Spanish – any that are in English will be clearly marked.