Materiały źródłowe

• #1

  https://myhealth.alberta.ca/Health/aftercareinformation/pages/conditions.aspx?hwid=zc1391

  Amyotrophic lateral sclerosis (ALS) is a gradual wasting away of nerve cells (motor neurons) in the brain and spinal cord. These nerve cells control the muscles that allow movement. As ALS gets worse, it often becomes harder to walk, speak, eat, swallow, and breathe. But some people live for many years, even decades, after they learn that they have ALS. […] Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse advice line (811 in most provinces and territories) if you are having problems. It’s also a good idea to know your test results and keep a list of the medicines you take. […] Exercise and stretch your muscles as long as you can. Talk to a physiotherapist about exercises you can do. […] Eat small, frequent meals. Choose soft foods that are easy to swallow. Try to sit up when you eat. Eat slowly.

• #2 Amyotrophic Lateral Sclerosis (ALS) | National Institute of Neurological Disorders and Stroke

  https://www.ninds.nih.gov/health-information/disorders/amyotrophic-lateral-sclerosis-als

  Amyotrophic lateral sclerosis (ALS), formerly known as Lou Gehrig’s disease, is a neurological disorder that affects motor neurons, the nerve cells in the brain and spinal cord that control voluntary muscle movement and breathing. […] ALS is progressive, meaning the symptoms get worse over time. […] The U.S. Food and Drug Administration has approved several drugs for ALS that may prolong survival, reduce the rate of decline, or help manage symptoms. However, there is currently no known treatment that stops or reverses the progression of ALS. […] A neurologist familiar with ALS can help a person get diagnosed early after symptom onset. […] There is no treatment to reverse damage to motor neurons or cure ALS at this time. However, some treatments may slow progression of the disease, improve quality of life, and extend survival.

• #3 Amyotrophic Lateral Sclerosis (ALS) | Cedars-Sinai

  https://www.cedars-sinai.org/health-library/diseases-and-conditions/a/amyotrophic-lateral-sclerosis-als.html

  ALS most often affects people between ages 40 and 70. But it can occur at a younger age. It affects people of all races and ethnic groups. […] For most people with ALS, the main treatment may include managing symptoms. This may include physical, occupational, speech, respiratory, and nutritional therapies. Some medicines and heat or whirlpool therapy may help ease muscle cramping. Exercise in moderation may help maintain muscle strength and function. […] There is no cure and no proven treatment for ALS. But the FDA has approved the medicines riluzole, edavarone, and sodium phenylbutyrate/taurursodiol. […] Coping with ALS and managing your symptoms is challenging for you, your caregivers, and your healthcare team. But its important to know that there are many community resources available for support and assistance.

• #4

  https://myhealth.alberta.ca/Health/aftercareinformation/pages/conditions.aspx?hwid=zc1391

  Amyotrophic lateral sclerosis (ALS) is a gradual wasting away of nerve cells (motor neurons) in the brain and spinal cord. These nerve cells control the muscles that allow movement. As ALS gets worse, it often becomes harder to walk, speak, eat, swallow, and breathe. But some people live for many years, even decades, after they learn that they have ALS. […] Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse advice line (811 in most provinces and territories) if you are having problems. It’s also a good idea to know your test results and keep a list of the medicines you take. […] Exercise and stretch your muscles as long as you can. Talk to a physiotherapist about exercises you can do. […] Eat small, frequent meals. Choose soft foods that are easy to swallow. Try to sit up when you eat. Eat slowly.

• #5 Home Care Needs and Current Nursing Status of Patients With Amyotrophic Lateral Sclerosis | NEALS

  https://neals.org/als-trials/nct04953481

  Amyotrophic lateral sclerosis (ALS) is the most common type of motor neuron disease. It is common in middle-aged and elderly people. Progressive skeletal muscle weakness, atrophy, fascicular fibrillation, bulbar paralysis and pyramidal tract sign are the main clinical manifestations. The survival time is usually 3-5 years. As the pathogenesis of ALS is not fully understood, there is no specific treatment for ALS. The clinical treatment mode of most patients with ALS is hospitalization at the end of the disease and maintenance treatment at home during the disease progression. […] At present, there are few reports on the home care needs and nursing status of ALS patients in China. This study is a cross-sectional survey. Based on consulting the relevant literature and consulting experts’ opinions, the researchers designed the questionnaire of home care needs and nursing status of ALS patients, The convenience sampling method was used to select 126-252 ALS outpatients, 126-252 ALS inpatients, and 126-252 ALS family members from a third class a general hospital in Beijing. The needs and status of home care of ALS patients in China were comprehensively investigated and analyzed, and the needs and status of home care were clarified, so as to provide reference for the development of home care service planning and policy measures for ALS patients.

• #6 ALS: amyotrophic lateral sclerosis and the trajectory of care

  https://www.myamericannurse.com/als-amyotrophic-lateral-sclerosis-and-the-trajectory-of-care/

  Amyotrophic lateral sclerosis care focuses primarily on palliation. […] Nurses must know how to identify symptoms, recommend treatment, coordinate care, and educate patients and families. […] An interprofessional team is essential in providing adequate care and comfort to patients and families. […] ALS care, which primarily focuses on palliation and helping patients adapt to physical changes, requires a wide range of resources and detailed coordination. Nurses play a critical role in identifying symptoms, making treatment recommendations, coordinating care, and educating patients and families. Nurse-led interprofessional care is essential for patient comfort and should begin as early as possible after diagnosis to ensure appropriate physical, psychosocial, and spiritual support. […] With increased education and awareness, nurses can serve as strong advocates and leaders on interprofessional teams caring for patients with ALS.

• #7 Amyotrophic lateral sclerosis: improving care with a multidisciplinary | JMDH

  https://www.dovepress.com/amyotrophic-lateral-sclerosis-improving-care-with-a-multidisciplinary–peer-reviewed-fulltext-article-JMDH

  Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease, leading to death within an average of 2-3 years. A cure is yet to be found, and a single disease-modifying treatment has had a modest effect in slowing disease progression. Specialized multidisciplinary ALS care has been shown to extend survival and improve patients quality of life, by providing coordinated interprofessional care that seeks to address the complex needs of this patient group. […] Care delivered and coordinated by multidisciplinary clinics (MDCs) specializing in ALS has been shown to extend survival and improve the quality of life for patients. […] Importantly, the roles of the patient, carer, and ALS support associations within the multidisciplinary team have not always been considered. A greater understanding of multidisciplinary care practices and of patients and families decision-making processes in ALS care can help generate more effective models of care.

• #8 Amyotrophic lateral sclerosis (ALS) – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/diagnosis-treatment/drc-20354027

  Our caring team of Mayo Clinic experts can help you with your Amyotrophic lateral sclerosis (ALS)-related health concerns […] Treatments can’t reverse the damage of ALS, but they can slow the progression of symptoms. They also can help prevent complications and make you more comfortable and independent. […] You might need a team of health care providers and doctors trained in many areas to provide your care. The team works together to prolong your survival and improve your quality of life. […] Your team works to select the right treatments for you. You have the right to choose or refuse any of the treatments suggested. […] When ALS affects your ability to breathe, speak and move, therapies and other forms of support can help. […] Your team typically works with you and your family members to ensure you are eating foods that are easier to swallow and meet your nutritional needs. You might choose to have a feeding tube placed when it becomes too hard to swallow.

• #9 Amyotrophic lateral sclerosis (ALS) – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/diagnosis-treatment/drc-20354027

  Your team might include a social worker to help with financial issues, insurance, and getting equipment and paying for devices you need. Psychologists, social workers and others may provide emotional support for you and your family. […] An integrated care team led by your neurologist usually is most appropriate for ALS care. Your team typically communicates with each other and is familiar with your needs.

• #10 ALS (Lou Gehrig’s Disease): Causes, Symptoms & Treatment

  https://www.healthline.com/health/amyotrophic-lateral-sclerosis

  Amyotrophic lateral sclerosis (ALS) is a degenerative disease that affects the brain and spinal cord. It causes a worsening loss of voluntary muscle control affecting movements like talking, swallowing, and walking. […] There is currently no cure for ALS. However, treatments are available that can reduce symptoms and may help people with ALS to live longer. […] Many different areas of functioning can be affected as control over voluntary movements declines. Treatments and supports are available to address most symptoms. […] A team of doctors and specialists often work together to treat people with ALS. Specialists involved in the ALS team might include: a neurologist who is skilled in the management of ALS, a doctor who specializes in physical medicine and rehabilitation (physiatrist), a dietitian, a gastroenterologist, an occupational therapist, a respiratory therapist, a speech therapist, a social worker, a psychologist, a pastoral care professional, a doctor who specializes in palliative care.

• #11 Amyotrophic lateral sclerosis: improving care with a multidisciplinary | JMDH

  https://www.dovepress.com/amyotrophic-lateral-sclerosis-improving-care-with-a-multidisciplinary–peer-reviewed-fulltext-article-JMDH

  Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease, leading to death within an average of 2-3 years. A cure is yet to be found, and a single disease-modifying treatment has had a modest effect in slowing disease progression. Specialized multidisciplinary ALS care has been shown to extend survival and improve patients quality of life, by providing coordinated interprofessional care that seeks to address the complex needs of this patient group. […] Care delivered and coordinated by multidisciplinary clinics (MDCs) specializing in ALS has been shown to extend survival and improve the quality of life for patients. […] Importantly, the roles of the patient, carer, and ALS support associations within the multidisciplinary team have not always been considered. A greater understanding of multidisciplinary care practices and of patients and families decision-making processes in ALS care can help generate more effective models of care.

• #12 ALS: amyotrophic lateral sclerosis and the trajectory of care

  https://www.myamericannurse.com/als-amyotrophic-lateral-sclerosis-and-the-trajectory-of-care/

  Amyotrophic lateral sclerosis care focuses primarily on palliation. […] Nurses must know how to identify symptoms, recommend treatment, coordinate care, and educate patients and families. […] An interprofessional team is essential in providing adequate care and comfort to patients and families. […] ALS care, which primarily focuses on palliation and helping patients adapt to physical changes, requires a wide range of resources and detailed coordination. Nurses play a critical role in identifying symptoms, making treatment recommendations, coordinating care, and educating patients and families. Nurse-led interprofessional care is essential for patient comfort and should begin as early as possible after diagnosis to ensure appropriate physical, psychosocial, and spiritual support. […] With increased education and awareness, nurses can serve as strong advocates and leaders on interprofessional teams caring for patients with ALS.

• #13 Amyotrophic Lateral Sclerosis (ALS) Nursing Care Plan & Management – RNpedia

  https://www.rnpedia.com/nursing-notes/medical-surgical-nursing-notes/amyotrophic-lateral-sclerosis-als-nursing-management/

  Amyotrophic lateral sclerosis (ALS) is a disease of unknown cause in which there is a loss of motor neurons (nerve cells controlling muscles) in the anterior horns of the spinal cord and the motor nuclei of the lower brain stem. […] The main focus of medical and nursing management is on interventions to maintain or improve function, well-being and quality of life. […] Symptomatic treatment and rehabilitative measures are employed to support the patient and improve the quality of life. […] Patients are encouraged to complete an advance directive or living will to preserve their autonomy in decision making. […] Nursing Diagnosis: Impaired mobility related to muscle wasting, weakness, and spasticity. […] Nursing Management: Maximize functional abilities, prevent complications of immobility, promote self-care, maximize effective communication, ensure adequate nutrition, prevent respiratory complications. […] Nursing Diagnosis: Ineffective Airway Clearance. […] Nursing Diagnosis: Impaired Physical Mobility. […] Nursing Diagnosis: Imbalanced Nutrition: Less Than Body Requirements. […] Nursing Diagnosis: Impaired Verbal Communication. […] Nursing Diagnosis: Deficient Knowledge.

• #14 Amyotrophic Lateral Sclerosis (ALS) Nursing Care Plan and Management ~ Nursing Path

  https://www.nursingpath.in/2017/01/amyotrophic-lateral-sclerosis-als.html

  Amyotrophic lateral sclerosis (ALS) is a disease of unknown cause in which there is a loss of motor neurons (nerve cells controlling muscles) in the anterior horns of the spinal cord and the motor nuclei of the lower brain stem. […] The main focus of medical and nursing management is on interventions to maintain or improve function, well-being and quality of life. […] Symptomatic treatment and rehabilitative measures are employed to support the patient and improve the quality of life. […] Nursing Diagnosis: Impaired mobility related to muscle wasting, weakness, and spasticity. […] Nursing Management: Provide intellectual stimulating activities, because the client typically experiences no cognitive deficits and retains mental abilities. […] Ensure adequate nutrition. […] Prevent respiratory complications: Promote measures to maintain adequate airway.

• #15 Amyotrophic Lateral Sclerosis (ALS) Nursing Care Plan & Management – RNpedia

  https://www.rnpedia.com/nursing-notes/medical-surgical-nursing-notes/amyotrophic-lateral-sclerosis-als-nursing-management/

  Amyotrophic lateral sclerosis (ALS) is a disease of unknown cause in which there is a loss of motor neurons (nerve cells controlling muscles) in the anterior horns of the spinal cord and the motor nuclei of the lower brain stem. […] The main focus of medical and nursing management is on interventions to maintain or improve function, well-being and quality of life. […] Symptomatic treatment and rehabilitative measures are employed to support the patient and improve the quality of life. […] Patients are encouraged to complete an advance directive or living will to preserve their autonomy in decision making. […] Nursing Diagnosis: Impaired mobility related to muscle wasting, weakness, and spasticity. […] Nursing Management: Maximize functional abilities, prevent complications of immobility, promote self-care, maximize effective communication, ensure adequate nutrition, prevent respiratory complications. […] Nursing Diagnosis: Ineffective Airway Clearance. […] Nursing Diagnosis: Impaired Physical Mobility. […] Nursing Diagnosis: Imbalanced Nutrition: Less Than Body Requirements. […] Nursing Diagnosis: Impaired Verbal Communication. […] Nursing Diagnosis: Deficient Knowledge.

• #16 Amyotrophic Lateral Sclerosis ALS Nursing Diagnosis & Care Plan – NurseStudy.Net

  https://nursestudy.net/als-nursing-diagnosis/

  Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrigs disease, is a progressive neurodegenerative disorder affecting motor neurons in the brain and spinal cord. This nursing diagnosis focuses on identifying symptoms, managing complications, and providing comprehensive care to improve the quality of life for ALS patients. […] Patient will maintain optimal respiratory function […] Patient will demonstrate effective swallowing techniques […] Patient will maintain optimal nutrition status […] Patient will report adequate pain management […] Patient will demonstrate coping mechanisms […] Patient will maintain independence in ADLs as long as possible […] Patient and family will understand disease progression and management. […] Nursing Diagnosis Statement: Impaired Physical Mobility related to progressive neuromuscular weakness as evidenced by decreased muscle strength and difficulty performing ADLs.

• #17 Amyotrophic Lateral Sclerosis ALS Nursing Diagnosis & Care Plan – NurseStudy.Net

  https://nursestudy.net/als-nursing-diagnosis/

  Nursing Diagnosis Statement: Risk for Aspiration related to impaired swallowing mechanism as evidenced by dysphagia and weakened cough reflex. […] Nursing Diagnosis Statement: Ineffective Breathing Pattern related to respiratory muscle weakness as evidenced by dyspnea and decreased vital capacity. […] Nursing Diagnosis Statement: Risk for Compromised Family Coping related to progressive nature of disease as evidenced by expressed feelings of burden and stress. […] Nursing Diagnosis Statement: Impaired Verbal Communication related to bulbar muscle weakness as evidenced by dysarthria and difficulty speaking.

• #18 Amyotrophic lateral sclerosis (als) nursing care plan and management | PDF

  https://www.slideshare.net/slideshow/amyotrophic-lateral-sclerosis-als-nursing-care-plan-and-management/71134150

  Amyotrophic lateral sclerosis (ALS) is a progressive disease that causes the loss of motor neurons in the spinal cord and brainstem, leading to muscle weakness and atrophy. […] Currently, there is no cure and treatment focuses on managing symptoms to maintain function and quality of life for as long as possible. Nursing care involves managing mobility, communication, swallowing, and breathing impairments through exercise, nutrition support, respiratory treatments, and education to support patients and their families. […] The main focus of medical and nursing management is on interventions to maintain or improve function, well-being and quality of life. Symptomatic treatment and rehabilitative measures are employed to support the patient and improve the quality of life. […] Nursing Diagnosis Impaired mobility related to muscle wasting, weakness, and spasticity Impaired communication related to impairment of the muscles of speech High risk for aspiration related to impaired muscles of swallowing Ineffective breathing pattern related to impaired muscles of breathing.

• #19 Amyotrophic lateral sclerosis (als) nursing care plan and management | PDF

  https://www.slideshare.net/slideshow/amyotrophic-lateral-sclerosis-als-nursing-care-plan-and-management/71134150

  Nursing Management 1. Provide intellectual stimulating activities, because the client typically experiences no cognitive deficits and retains mental abilities. 2. Provide client and family teaching. 3. Promote measures to enhance body image. 4. Promote client and family coping as the client and his family deal with the poor prognosis and the grieving process 5. Provide referrals. 6. Maximize functional abilities o Prevent complications of immobility o Promote self-care o Maximize effective communication 7. Ensure adequate nutrition 8. Prevent respiratory complications o Promote measures to maintain adequate airway […] o Promote measures to enhance gas exchange, such as oxygen therapy and ventilator assistance. o Promote measures to prevent respiratory infection.

• #20 Amyotrophic Lateral Sclerosis (ALS) Nursing Care Plan and Management ~ Nursing Path

  https://www.nursingpath.in/2017/01/amyotrophic-lateral-sclerosis-als.html

  Amyotrophic lateral sclerosis (ALS) is a disease of unknown cause in which there is a loss of motor neurons (nerve cells controlling muscles) in the anterior horns of the spinal cord and the motor nuclei of the lower brain stem. […] The main focus of medical and nursing management is on interventions to maintain or improve function, well-being and quality of life. […] Symptomatic treatment and rehabilitative measures are employed to support the patient and improve the quality of life. […] Nursing Diagnosis: Impaired mobility related to muscle wasting, weakness, and spasticity. […] Nursing Management: Provide intellectual stimulating activities, because the client typically experiences no cognitive deficits and retains mental abilities. […] Ensure adequate nutrition. […] Prevent respiratory complications: Promote measures to maintain adequate airway.

• #21 Amyotrophic lateral sclerosis (als) nursing care plan and management | PDF

  https://www.slideshare.net/slideshow/amyotrophic-lateral-sclerosis-als-nursing-care-plan-and-management/71134150

  Nursing Management 1. Provide intellectual stimulating activities, because the client typically experiences no cognitive deficits and retains mental abilities. 2. Provide client and family teaching. 3. Promote measures to enhance body image. 4. Promote client and family coping as the client and his family deal with the poor prognosis and the grieving process 5. Provide referrals. 6. Maximize functional abilities o Prevent complications of immobility o Promote self-care o Maximize effective communication 7. Ensure adequate nutrition 8. Prevent respiratory complications o Promote measures to maintain adequate airway […] o Promote measures to enhance gas exchange, such as oxygen therapy and ventilator assistance. o Promote measures to prevent respiratory infection.

• #22 What To Expect From Your ALS Nursing Care Plan | Fedelta Home Care

  https://fedeltahomecare.com/home-care-blog/what-to-expect-from-your-als-nursing-care-plan/

  Amyotrophic lateral sclerosis, or ALS, is a neurodegenerative disease prevalent among older adults. Due to its increasingly devastating effects on physical mobility and capacity, it is critical to manage relevant care solutions as the disease progresses. A trained healthcare professional will work with you to determine the details of this management, so prepare yourself for those conversations and decisions. This is what to expect from your ALS nursing care plan. […] In light of these symptoms, people with ALS require attentive care every step of the way. […] Whatever the current symptomology is will impact the structure of the ALS nursing care plan. […] Preventative actions and counteractive measures are a key part of an ALS nursing care plan. […] At the core of a care plan will be preventative measures that work to build muscle strength and reduce muscle loss.

• #23 Amyotrophic lateral sclerosis (als) nursing care plan and management | PDF

  https://www.slideshare.net/slideshow/amyotrophic-lateral-sclerosis-als-nursing-care-plan-and-management/71134150

  Nursing Management 1. Provide intellectual stimulating activities, because the client typically experiences no cognitive deficits and retains mental abilities. 2. Provide client and family teaching. 3. Promote measures to enhance body image. 4. Promote client and family coping as the client and his family deal with the poor prognosis and the grieving process 5. Provide referrals. 6. Maximize functional abilities o Prevent complications of immobility o Promote self-care o Maximize effective communication 7. Ensure adequate nutrition 8. Prevent respiratory complications o Promote measures to maintain adequate airway […] o Promote measures to enhance gas exchange, such as oxygen therapy and ventilator assistance. o Promote measures to prevent respiratory infection.

• #24 Amyotrophic Lateral Sclerosis (ALS) | Cigna

  https://www.cigna.com/knowledge-center/hw/medical-topics/amyotrophic-lateral-sclerosis-hw179630

  Amyotrophic lateral sclerosis (ALS) is a gradual wasting away of nerve cells (motor neurons) in the brain and spinal cord. These nerve cells control the muscles that allow movement. As ALS gets worse, it often becomes harder to walk, speak, eat, swallow, and breathe. But some people live for many years, even decades, after they learn that they have ALS. […] Treatment may include: Physical and occupational therapy. These therapies can help you stay strong and make the most of the abilities you still have. […] Speech therapy. This can help you with coughing, swallowing, and talking after weakness in the face, throat, and chest begins. […] Supportive devices and equipment. These can help you stay mobile, communicate, and do daily tasks like bathing, eating, and dressing. Examples include a cane, a walker, a wheelchair, ramps, handrails, and foot or ankle braces.

• #25 Amyotrophic Lateral Sclerosis (ALS) | Cigna

  https://www.cigna.com/knowledge-center/hw/medical-topics/amyotrophic-lateral-sclerosis-hw179630

  Exercise and stretch your muscles as long as you can. Talk to a physical therapist about exercises you can do. […] Eat small, frequent meals. Choose soft foods that are easy to swallow. Try to sit up when you eat. Eat slowly. […] Consider joining a support group. Sharing your experiences with other people who have the same problem may help you learn more and cope better. […] As ALS symptoms get worse (progress), you may have to choose which treatments you want. For example, would you consider using a machine to help you breathe? Would you want a feeding tube placed in your stomach? How much treatment you want is a personal choice that only you and your loved ones can make.

• #26 Medical Management – Amyotrophic Lateral Sclerosis (ALS) – Diseases | Muscular Dystrophy Association

  https://www.mda.org/disease/amyotrophic-lateral-sclerosis/medical-management

  Medical interventions and technology have vastly improved the quality of life for people with ALS by assisting with breathing, nutrition, mobility, and communication. Proper management of symptoms and proactive use of medical interventions and equipment can make a positive difference in day-to-day living, and potentially may lengthen life. […] Managing the symptoms is the mainstay treatment for ALS; multidisciplinary care may improve quality of life. […] A pulmonologist and respiratory therapist typically are involved in managing the care of individuals with ALS. […] Regular measuring of respiratory muscle strength is an important part of ALS care. […] It is recommended that patients with ALS receive pneumococcal vaccination and annual seasonal influenza vaccination as they may have compromised ability to handle respiratory secretions and an increased risk of developing chronic pulmonary conditions.

• #27 Amyotrophic Lateral Sclerosis (ALS) | National Institute of Neurological Disorders and Stroke

  https://www.ninds.nih.gov/health-information/disorders/amyotrophic-lateral-sclerosis-als

  Nutritionists and registered dieticians can help plan small, nutritious meals throughout the day and identify foods to avoid. […] Noninvasive ventilation (NIV) is a type of breathing support that is usually delivered through a mask over the nose and/or mouth. […] As the person with ALS progresses in their disease, they will need more and more help with daily activities. […] It is important for caregivers take care of themselves and to seek support when needed.

• #28 Amyotrophic Lateral Sclerosis (ALS): What It Is & Symptoms

  https://my.clevelandclinic.org/health/diseases/16729-amyotrophic-lateral-sclerosis-als

  Your provider might recommend different types of therapy or rehabilitation, including: Physical therapy helps you stay independent and safe through gentle exercises that strengthen muscles and support overall health. Occupational therapy teaches strategies for daily tasks and using assistive devices like wheelchairs or braces without tiring yourself out. Speech therapy supports safe swallowing and communication, helping you speak as long as possible and conserve energy with nonverbal options. […] With ALS, it can be hard to eat and drink enough to meet your body’s needs. Swallowing difficulties may cause weight loss and make it harder to get essential vitamins and minerals. […] As ALS progresses, breathing may become difficult. Noninvasive ventilation (NIV), delivered through a mask over your nose and mouth, can make breathing more comfortable. You may start using it at night and eventually need it full time.

• #29 Advance Care Planning in Amyotrophic Lateral Sclerosis

  https://practicalneurology.com/articles/2021-july-aug/advance-care-planning-in-amyotrophic-lateral-sclerosis

  It is important that people with ALS and their caregivers understand the specifics of gastrostomy tube placement, NIV, IV, and hospice care. […] Another clinical decision faced by persons with ALS is whether to start NIV, such as bilevel positive airway pressure (BiPAP), to improve symptoms related to respiratory muscle weakness and hypoventilation. […] With progressive respiratory weakness, eventually NIV will be inadequate, and to further prolong life, IV will be required. […] For those who forgo IV, it is important to discuss hospice care. Many understand hospice care as a means of hastening death. It is important to explain that hospice focuses on symptom management and emotional needs rather than prolonging life. […] In this heuristic, Family refers to the fact that no patient decision occurs in isolation. Social support networks, financial resources, and insurance coverage play a significant role in decision making.

• #30 Nutritional Care of the Patient with Amyotrophic Lateral Sclerosis – Practical Gastro

  https://practicalgastro.com/2022/05/18/nutritional-care-of-the-patient-with-amyotrophic-lateral-sclerosis/

  Amyotrophic lateral sclerosis (ALS) is a progressive motor neuron disease with no effective treatment to cure, halt or reverse disease advancement. ALS can impact a persons ability to speak, eat, move, and breathe. Malnutrition is a common complication of ALS and is associated with reduced survival time. The objective of this review is to discuss the nutritional implications of ALS and supportive strategies. […] Malnutrition in PALS is common, with studies varying its prevalence from 16% to 55%. Malnutrition, lower weight, and weight loss are associated with reduced survival time. […] Malnutrition is a prognostic indicator for survival in PALS. […] The Subjective Global Assessment (SGA) and Global Leadership Initiative for Malnutrition (GLIM) should be considered when diagnosing malnutrition in PALS. Although these nutritional assessment tools incorporate some of the above criteria, malnutrition (as determined by SGA and GLIM) is noted to be an independent risk factor for reduced survival time.

• #31 Amyotrophic Lateral Sclerosis (ALS)

  https://www.caregiver.org/resource/amyotrophic-lateral-sclerosis-als/

  By working with physical and occupational therapists, PALS and their caregivers can identify appropriate devices to help maximize independence and reduce caregiver strain as changes in mobility occur. […] A speech therapist can help PALS maintain their speaking ability for as long as possible; however, the loss of speech does not mean the loss of the ability to communicate. […] As muscles weaken, breathing becomes more difficult and less effective in the person with ALS. […] It is important for people with ALS to receive proper nutrition and to maintain a normal weight. […] Gathering the appropriate resources to meet the challenges of ALS can be financially difficult for many families. […] It is important that the person with ALS and his or her primary caregiver get the information and support they need.

• #32 Amyotrophic Lateral Sclerosis (ALS): What It Is & Symptoms

  https://my.clevelandclinic.org/health/diseases/16729-amyotrophic-lateral-sclerosis-als

  Your provider might recommend different types of therapy or rehabilitation, including: Physical therapy helps you stay independent and safe through gentle exercises that strengthen muscles and support overall health. Occupational therapy teaches strategies for daily tasks and using assistive devices like wheelchairs or braces without tiring yourself out. Speech therapy supports safe swallowing and communication, helping you speak as long as possible and conserve energy with nonverbal options. […] With ALS, it can be hard to eat and drink enough to meet your body’s needs. Swallowing difficulties may cause weight loss and make it harder to get essential vitamins and minerals. […] As ALS progresses, breathing may become difficult. Noninvasive ventilation (NIV), delivered through a mask over your nose and mouth, can make breathing more comfortable. You may start using it at night and eventually need it full time.

• #33 Amyotrophic Lateral Sclerosis (ALS) | Cigna

  https://www.cigna.com/knowledge-center/hw/medical-topics/amyotrophic-lateral-sclerosis-hw179630

  Exercise and stretch your muscles as long as you can. Talk to a physical therapist about exercises you can do. […] Eat small, frequent meals. Choose soft foods that are easy to swallow. Try to sit up when you eat. Eat slowly. […] Consider joining a support group. Sharing your experiences with other people who have the same problem may help you learn more and cope better. […] As ALS symptoms get worse (progress), you may have to choose which treatments you want. For example, would you consider using a machine to help you breathe? Would you want a feeding tube placed in your stomach? How much treatment you want is a personal choice that only you and your loved ones can make.

• #34 Amyotrophic Lateral Sclerosis (ALS) | National Institute of Neurological Disorders and Stroke

  https://www.ninds.nih.gov/health-information/disorders/amyotrophic-lateral-sclerosis-als

  Supportive health care is best provided by integrated, multi-disciplinary teams of professionals that may include physicians, pharmacists, physical, occupational, speech, and respiratory therapists, nutritionists, social workers, clinical psychologists, and home care and hospice nurses. […] A treatment plan for ALS usually includes rehabilitation, which should be tailored to the persons individual needs and may include physical, occupational, and speech therapy. […] Physical therapy can help the person with ALS maintain function, including lowering their risk of falls and joint pain and maximizing their independence at different stages of the disease. […] Occupational therapists can help with activities of daily living and self-care. […] Speech therapists can help people with ALS learn strategies to speak louder and more clearly and help maintain the ability to communicate.

• #35 Amyotrophic Lateral Sclerosis (ALS)

  https://www.caregiver.org/resource/amyotrophic-lateral-sclerosis-als/

  By working with physical and occupational therapists, PALS and their caregivers can identify appropriate devices to help maximize independence and reduce caregiver strain as changes in mobility occur. […] A speech therapist can help PALS maintain their speaking ability for as long as possible; however, the loss of speech does not mean the loss of the ability to communicate. […] As muscles weaken, breathing becomes more difficult and less effective in the person with ALS. […] It is important for people with ALS to receive proper nutrition and to maintain a normal weight. […] Gathering the appropriate resources to meet the challenges of ALS can be financially difficult for many families. […] It is important that the person with ALS and his or her primary caregiver get the information and support they need.

• #36 ALS (Lou Gehrig’s Disease): Causes, Symptoms & Treatment

  https://www.healthline.com/health/amyotrophic-lateral-sclerosis

  Family members should talk with people with ALS about their care. As the condition progresses, some people may need support when making medical decisions. […] Connecting with a local ALS society can help people with ALS and their families access resources and support. […] Assistive devices like braces, mattresses, and wheelchairs can reduce pain by supporting the body in a more comfortable position. […] Some people may need nutritional support, like a feeding tube (enteral feeding). […] As speech becomes more difficult, communication tools provide another way to express thoughts and needs. Options include communication boards and electronic assistive communication devices. […] If you’re considering assistive devices, it’s best to consult with your healthcare team to find the right options for you.

• #37 Amyotrophic lateral sclerosis (ALS) – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/diagnosis-treatment/drc-20354027

  Your team might include a social worker to help with financial issues, insurance, and getting equipment and paying for devices you need. Psychologists, social workers and others may provide emotional support for you and your family. […] An integrated care team led by your neurologist usually is most appropriate for ALS care. Your team typically communicates with each other and is familiar with your needs.

• #38 What doctors wish patients knew about amyotrophic lateral sclerosis | American Medical Association

  https://www.ama-assn.org/delivering-care/population-care/what-doctors-wish-patients-knew-about-amyotrophic-lateral-sclerosis

  It breaks my heart whenever I reflect on the journey of an ALS patient who was devastated by the absence of a cure and had a hard time accepting the harsh reality, he said. […] Tragically, she fell into the trap of those who peddle false hope. […] Ultimately, she succumbed to the disease earlier than expected, Dr. Sabouri said. […] Its obviously extremely emotionally taxing recognizing that somebody is going to get worse as time goes on regardless of what you do for them, Dr. Hakimi said. […] What youre impacting as a family member is that trajectory of how quickly theyre worsening and also giving them emotional support. […] So, making sure that you keep a positive outlook for them and do whatever you can. […] Additionally, patients often get to the point that they need to be fed even though theyre adults. […] So, as a family member, ensuring that you sit with that person and very slowly feed them much like you would a child is important, Dr. Hakimi said. […] Families can help by being present to listen to their loved one with ALS, to support them physically and emotionally, Dr. Sabouri said.

• #39 What doctors wish patients knew about amyotrophic lateral sclerosis | American Medical Association

  https://www.ama-assn.org/delivering-care/population-care/what-doctors-wish-patients-knew-about-amyotrophic-lateral-sclerosis

  And there’s a number of other things, of course, that need to be considered. One is nutrition. For some of these patients, as the disease progresses, they will develop swallowing difficulty, Dr. Hakimi said. […] Therefore, one would consider putting a feeding tube in that individual to make sure that they get enough nutrition because if your muscles are already shrinking and becoming weak, not getting enough nutrition is surely going to affect that as well. […] There are medicines also to treat muscle spasms, weakness, depression and things like that. […] Consult with your neurologist or multidisciplinary clinic team before making any significant health-related decisions. Dr. Sabouri said. […] Be vigilant about businesses that may unfortunately exploit the vulnerability of those affected and steer clear of 'hope shops’ or 'miracle stores’ that offer expensive, yet unapproved treatments that may look scientific.

• #40 Amyotrophic Lateral Sclerosis (ALS)

  https://www.caregiver.org/resource/amyotrophic-lateral-sclerosis-als/

  By working with physical and occupational therapists, PALS and their caregivers can identify appropriate devices to help maximize independence and reduce caregiver strain as changes in mobility occur. […] A speech therapist can help PALS maintain their speaking ability for as long as possible; however, the loss of speech does not mean the loss of the ability to communicate. […] As muscles weaken, breathing becomes more difficult and less effective in the person with ALS. […] It is important for people with ALS to receive proper nutrition and to maintain a normal weight. […] Gathering the appropriate resources to meet the challenges of ALS can be financially difficult for many families. […] It is important that the person with ALS and his or her primary caregiver get the information and support they need.

• #41 Caregiving Tips – Amyotrophic Lateral Sclerosis (ALS) – VA Caregiver Support Program

  https://www.caregiver.va.gov/Tips_by_Diagnosis/ALS.asp

  Knowledge is empowering. Get as much information about ALS and caregiving as you can. The more you know, the better prepared you will be to provide care and support for the Veteran. […] Establish a regular schedule for respite care. Respite is very important because it gives you an opportunity to have time to recharge. […] Pay attention to your bodys signals of stress. In order to reduce stress, try practicing stress-management strategies, such as breathing exercises, yoga, and meditation. […] See a counselor or therapist if you are in need of more extensive mental health support. Make conscious decisions about how you want to spend your time; acknowledge your priorities and build your life around them. It is all right to say no to activities and commitments. You dont have to do everything.

• #42 Nursing Care Plan For Amyotrophic Lateral Sclerosis (ALS) – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-amyotrophic-lateral-sclerosis-als/

  Furthermore, patient and caregiver education is critical in the nursing care plan for ALS. By providing accurate information about the disease, its progression, symptom management, and available resources, nurses empower patients and caregivers to actively participate in their care, make informed decisions, and effectively cope with the challenges associated with ALS.

• #43 Nursing Care Plan For Amyotrophic Lateral Sclerosis (ALS) – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-amyotrophic-lateral-sclerosis-als/

  A comprehensive nursing assessment provides the foundation for developing an individualized care plan for individuals with ALS. It guides the selection of appropriate nursing interventions, facilitates effective symptom management, and promotes the overall well-being and quality of life of patients and their families. Regular reassessment is essential to monitor disease progression, identify emerging needs, and adapt the care plan accordingly. […] These nursing diagnoses provide a basis for identifying the specific needs and concerns of individuals with ALS. They guide the development of appropriate nursing interventions to address the identified problems and promote the patients well-being. […] These nursing interventions aim to address the specific needs of individuals with ALS, promote their well-being, and enhance their quality of life. It is crucial to tailor the interventions to the individual patients needs, regularly evaluate their effectiveness, and collaborate with the healthcare team to provide comprehensive and holistic care.

• #44 Amyotrophic Lateral Sclerosis (ALS) | National Institute of Neurological Disorders and Stroke

  https://www.ninds.nih.gov/health-information/disorders/amyotrophic-lateral-sclerosis-als

  Amyotrophic lateral sclerosis (ALS), formerly known as Lou Gehrig’s disease, is a neurological disorder that affects motor neurons, the nerve cells in the brain and spinal cord that control voluntary muscle movement and breathing. […] ALS is progressive, meaning the symptoms get worse over time. […] The U.S. Food and Drug Administration has approved several drugs for ALS that may prolong survival, reduce the rate of decline, or help manage symptoms. However, there is currently no known treatment that stops or reverses the progression of ALS. […] A neurologist familiar with ALS can help a person get diagnosed early after symptom onset. […] There is no treatment to reverse damage to motor neurons or cure ALS at this time. However, some treatments may slow progression of the disease, improve quality of life, and extend survival.

• #45 Amyotrophic Lateral Sclerosis (ALS) – Diseases | Muscular Dystrophy Association

  https://www.mda.org/disease/amyotrophic-lateral-sclerosis

  ALS results in muscles that are reduced in size (atrophic), weak, and soft, or muscles that are stiff, tight, and spastic. […] Medical interventions and technology have vastly improved the quality of life for people with ALS by assisting with breathing, nutrition, mobility, and communication. Proper management of symptoms, and proactive use of medical interventions and equipment, can make a positive difference in day-to-day living and potentially may lengthen life. […] In 1995, the glutamate blocker riluzole (Rilutek) became the first treatment approved by the U.S. Food and Drug Administration (FDA) to treat ALS. […] On May 5, 2017, the FDA approved edaravone (Radicava) for the treatment of ALS. […] On September 29, 2022, the FDA approved the neuroprotective therapy sodium phenylbutyrate and taurursodiol (Relyvrio) for the treatment of ALS. […] Most recently, on April 25, 2023, the FDA granted accelerated approval of tofersen (Qalsody) for the treatment of amyotrophic lateral sclerosis associated with mutation in the superoxide dismutase 1 (SOD1) gene (SOD1-ALS).

• #46 Amyotrophic Lateral Sclerosis (ALS): What It Is & Symptoms

  https://my.clevelandclinic.org/health/diseases/16729-amyotrophic-lateral-sclerosis-als

  ALS treatment includes therapies and medications to manage symptoms and slow the progression of the disease. […] Your care team might recommend the following: Medications, Therapies or rehabilitation, Nutritional support, Breathing support. […] No treatment can reverse ALS damage. But it may help delay the progression of symptoms and make you more comfortable. […] There are four medications approved by the U.S. Food and Drug Administration (FDA) to treat amyotrophic lateral sclerosis: Riluzole may reduce damage to motor neurons. It may extend survival by a few months. Edaravone can slow the decline in your muscle functioning. Sodium phenylbutyrate/taurursodiol can slow the progression of symptoms. Tofersen can decrease some damage to neurons. This may help if your provider finds a genetic change on the SOD1 gene.

• #47 Amyotrophic Lateral Sclerosis (ALS) – Diseases | Muscular Dystrophy Association

  https://www.mda.org/disease/amyotrophic-lateral-sclerosis

  ALS results in muscles that are reduced in size (atrophic), weak, and soft, or muscles that are stiff, tight, and spastic. […] Medical interventions and technology have vastly improved the quality of life for people with ALS by assisting with breathing, nutrition, mobility, and communication. Proper management of symptoms, and proactive use of medical interventions and equipment, can make a positive difference in day-to-day living and potentially may lengthen life. […] In 1995, the glutamate blocker riluzole (Rilutek) became the first treatment approved by the U.S. Food and Drug Administration (FDA) to treat ALS. […] On May 5, 2017, the FDA approved edaravone (Radicava) for the treatment of ALS. […] On September 29, 2022, the FDA approved the neuroprotective therapy sodium phenylbutyrate and taurursodiol (Relyvrio) for the treatment of ALS. […] Most recently, on April 25, 2023, the FDA granted accelerated approval of tofersen (Qalsody) for the treatment of amyotrophic lateral sclerosis associated with mutation in the superoxide dismutase 1 (SOD1) gene (SOD1-ALS).

• #48 Amyotrophic lateral sclerosis (ALS) Information | Mount Sinai – New York

  https://www.mountsinai.org/health-library/diseases-conditions/amyotrophic-lateral-sclerosis-als

  Amyotrophic lateral sclerosis, or ALS, is a disease of the nerve cells in the brain, brain stem and spinal cord that control voluntary muscle movement. […] There is no known cure for ALS. Two medicines are available that help slow the progression of symptoms and may help people live slightly longer: Riluzole (Rilutek) and Edaravone (Radicava). […] Physical therapy, rehabilitation, use of braces or a wheelchair, or other measures may be needed to help with muscle function and general health. Ongoing oversight by a physical medicine provider is helpful, given continuously changing symptoms. […] Emotional support is vital in coping with the disorder, because mental functioning is not affected. Groups such as the ALS Association may be available to help people who are coping with the disorder. […] Support for people who are caring for someone with ALS is also available, and may be very helpful.

• #49 Patient Care and Treatment in Amyotrophic Lateral Sclerosis | Ikeda | Journal of Neurology Research

  https://www.neurores.org/index.php/neurores/article/view/176/183

  The American Academy of Neurology (AAN) ALS Practice Parameter recommends consideration of noninvasive ventilation (NIV) when patients have orthopnea, SNIP 40 cm or maximal inspiratory pressure -60 cm, abnormal nocturnal oximetry or FVC 50%. […] Therefore, AAN Practice Parameter of ALS care recommends that NIV should be considered to treat respiratory insufficiency in ALS patients for lengthening survival and slowing FVC decline rate. […] In ALS patients, adequate nutrition is restricted insidiously and nutritional conditions worsen progressively. […] Early management of dysphagia contains dietary advice, modification of food consistency and patient education on special swallowing techniques. […] Physicians should emphasize to patients that PEG does not eliminate oral feeding. […] Riluzole is the only approved drug that has been shown to have a modest effect on prolonging survival in ALS patients. […] Cooperation between physicians and medical experts is required for better management and medication in ALS patients.

• #50 Amyotrophic Lateral Sclerosis: Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/1170097-overview

  Noninvasive ventilation (NIV) should be offered to treat respiratory insufficiency to prolong survival and slow the decline of FVC; NIV may be considered at the earliest sign of nocturnal hypoventilation or respiratory insufficiency. […] Invasive ventilatory support, requiring tracheostomy, may be considered in the following cases: Patients who present with respiratory failure and who are otherwise largely neurologically intact. […] Patients who want to be kept alive using long-term invasive ventilatory support as their disease progresses. […] Patients in whom secretions cannot be managed and who therefore cannot benefit from noninvasive ventilatory support (this occurs very rarely). […] Muscle relaxants to relieve spasticity. […] The combination of dextromethorphan and quinidine (Nuedexta) to decrease emotional lability (pseudobulbar affect).

• #51 Amyotrophic Lateral Sclerosis: Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/1170097-overview

  Anticholinergics and sympathomimetics for sialorrhea. […] Mucolytics for thickened secretions. […] Lorazepam for anxiety. […] Selective serotonin reuptake inhibitors (SSRIs) for depression. […] Nonsteroidal anti-inflammatory drugs (NSAIDs), tramadol (Ultram), ketorolac (Toradol), morphine (immediate or extended release), or transdermal fentanyl for pain.

• #52 What doctors wish patients knew about amyotrophic lateral sclerosis | American Medical Association

  https://www.ama-assn.org/delivering-care/population-care/what-doctors-wish-patients-knew-about-amyotrophic-lateral-sclerosis

  And there’s a number of other things, of course, that need to be considered. One is nutrition. For some of these patients, as the disease progresses, they will develop swallowing difficulty, Dr. Hakimi said. […] Therefore, one would consider putting a feeding tube in that individual to make sure that they get enough nutrition because if your muscles are already shrinking and becoming weak, not getting enough nutrition is surely going to affect that as well. […] There are medicines also to treat muscle spasms, weakness, depression and things like that. […] Consult with your neurologist or multidisciplinary clinic team before making any significant health-related decisions. Dr. Sabouri said. […] Be vigilant about businesses that may unfortunately exploit the vulnerability of those affected and steer clear of 'hope shops’ or 'miracle stores’ that offer expensive, yet unapproved treatments that may look scientific.

• #53 Amyotrophic Lateral Sclerosis (ALS) | National Institute of Neurological Disorders and Stroke

  https://www.ninds.nih.gov/health-information/disorders/amyotrophic-lateral-sclerosis-als

  Supportive health care is best provided by integrated, multi-disciplinary teams of professionals that may include physicians, pharmacists, physical, occupational, speech, and respiratory therapists, nutritionists, social workers, clinical psychologists, and home care and hospice nurses. […] A treatment plan for ALS usually includes rehabilitation, which should be tailored to the persons individual needs and may include physical, occupational, and speech therapy. […] Physical therapy can help the person with ALS maintain function, including lowering their risk of falls and joint pain and maximizing their independence at different stages of the disease. […] Occupational therapists can help with activities of daily living and self-care. […] Speech therapists can help people with ALS learn strategies to speak louder and more clearly and help maintain the ability to communicate.

• #54 Amyotrophic Lateral Sclerosis (ALS): What It Is & Symptoms

  https://my.clevelandclinic.org/health/diseases/16729-amyotrophic-lateral-sclerosis-als

  Your provider might recommend different types of therapy or rehabilitation, including: Physical therapy helps you stay independent and safe through gentle exercises that strengthen muscles and support overall health. Occupational therapy teaches strategies for daily tasks and using assistive devices like wheelchairs or braces without tiring yourself out. Speech therapy supports safe swallowing and communication, helping you speak as long as possible and conserve energy with nonverbal options. […] With ALS, it can be hard to eat and drink enough to meet your body’s needs. Swallowing difficulties may cause weight loss and make it harder to get essential vitamins and minerals. […] As ALS progresses, breathing may become difficult. Noninvasive ventilation (NIV), delivered through a mask over your nose and mouth, can make breathing more comfortable. You may start using it at night and eventually need it full time.

• #55 Amyotrophic Lateral Sclerosis (ALS): What It Is & Symptoms

  https://my.clevelandclinic.org/health/diseases/16729-amyotrophic-lateral-sclerosis-als

  Your provider might recommend different types of therapy or rehabilitation, including: Physical therapy helps you stay independent and safe through gentle exercises that strengthen muscles and support overall health. Occupational therapy teaches strategies for daily tasks and using assistive devices like wheelchairs or braces without tiring yourself out. Speech therapy supports safe swallowing and communication, helping you speak as long as possible and conserve energy with nonverbal options. […] With ALS, it can be hard to eat and drink enough to meet your body’s needs. Swallowing difficulties may cause weight loss and make it harder to get essential vitamins and minerals. […] As ALS progresses, breathing may become difficult. Noninvasive ventilation (NIV), delivered through a mask over your nose and mouth, can make breathing more comfortable. You may start using it at night and eventually need it full time.

• #56 Amyotrophic Lateral Sclerosis (ALS) | National Institute of Neurological Disorders and Stroke

  https://www.ninds.nih.gov/health-information/disorders/amyotrophic-lateral-sclerosis-als

  Supportive health care is best provided by integrated, multi-disciplinary teams of professionals that may include physicians, pharmacists, physical, occupational, speech, and respiratory therapists, nutritionists, social workers, clinical psychologists, and home care and hospice nurses. […] A treatment plan for ALS usually includes rehabilitation, which should be tailored to the persons individual needs and may include physical, occupational, and speech therapy. […] Physical therapy can help the person with ALS maintain function, including lowering their risk of falls and joint pain and maximizing their independence at different stages of the disease. […] Occupational therapists can help with activities of daily living and self-care. […] Speech therapists can help people with ALS learn strategies to speak louder and more clearly and help maintain the ability to communicate.

• #57 What doctors wish patients knew about amyotrophic lateral sclerosis | American Medical Association

  https://www.ama-assn.org/delivering-care/population-care/what-doctors-wish-patients-knew-about-amyotrophic-lateral-sclerosis

  Additionally, social workers provide emotional and psychological support, and assistance with social and financial matters as needed by patients or their families. […] While there is no cure for ALS, the main management is lifestyle modification, so things like exercise, Dr. Hakimi said. […] And if you know that youre going to develop some element of weakness, maximizing your capability to have strength, coordination, muscle control and things like that with exercise before the disease has progressed very far is very good. […] The other lifestyle modifications include just making sure your home is safe, using assistive devices like a cane or walker, he said. […] And in some cases, once it involves your respiratory situation, using things like a BiPAP, which are like the CPAP machinesimilar concept, but the machine helps you breathe so that you dont develop oxygen problems.

• #58 Amyotrophic Lateral Sclerosis (ALS) Care | Kettering Health

  https://ketteringhealth.org/services-treatments/neurorehab-balance/amyotrophic-lateral-sclerosis-als/

  Our Approach to ALS Care […] While no proven treatment or cure exists yet for ALS, the NeuroRehab and Balance Center can help you manage symptoms and maintain your quality of life with the help of occupational therapists, physical therapists, and speech-language pathologists. A case manager and exercise physiologist are also available to help you recover. […] An occupational therapist can help with accessibility recommendations: Your therapist can recommend home modifications and adaptive technology to help you with everyday life. […] A physical therapist can help you with strength training: Your therapist can help you build strength and improve your joint flexibility. […] Your therapist will teach you how to conserve energy and manage fatigue during recovery. […] A speech-language pathologist can help you with communication problems: Your speech-language pathologist can address any issues with talking and language comprehension. […] You may benefit from speech-generating or alternative speech devices, and your speech-language pathologist can help you determine the best option. […] Your therapist can complete an assessment to provide safe feeding recommendations.

• #59 Amyotrophic Lateral Sclerosis (ALS) | National Institute of Neurological Disorders and Stroke

  https://www.ninds.nih.gov/health-information/disorders/amyotrophic-lateral-sclerosis-als

  Supportive health care is best provided by integrated, multi-disciplinary teams of professionals that may include physicians, pharmacists, physical, occupational, speech, and respiratory therapists, nutritionists, social workers, clinical psychologists, and home care and hospice nurses. […] A treatment plan for ALS usually includes rehabilitation, which should be tailored to the persons individual needs and may include physical, occupational, and speech therapy. […] Physical therapy can help the person with ALS maintain function, including lowering their risk of falls and joint pain and maximizing their independence at different stages of the disease. […] Occupational therapists can help with activities of daily living and self-care. […] Speech therapists can help people with ALS learn strategies to speak louder and more clearly and help maintain the ability to communicate.

• #60 Amyotrophic Lateral Sclerosis (ALS): What It Is & Symptoms

  https://my.clevelandclinic.org/health/diseases/16729-amyotrophic-lateral-sclerosis-als

  Your provider might recommend different types of therapy or rehabilitation, including: Physical therapy helps you stay independent and safe through gentle exercises that strengthen muscles and support overall health. Occupational therapy teaches strategies for daily tasks and using assistive devices like wheelchairs or braces without tiring yourself out. Speech therapy supports safe swallowing and communication, helping you speak as long as possible and conserve energy with nonverbal options. […] With ALS, it can be hard to eat and drink enough to meet your body’s needs. Swallowing difficulties may cause weight loss and make it harder to get essential vitamins and minerals. […] As ALS progresses, breathing may become difficult. Noninvasive ventilation (NIV), delivered through a mask over your nose and mouth, can make breathing more comfortable. You may start using it at night and eventually need it full time.

• #61 Amyotrophic Lateral Sclerosis (ALS) Care | Kettering Health

  https://ketteringhealth.org/services-treatments/neurorehab-balance/amyotrophic-lateral-sclerosis-als/

  Our Approach to ALS Care […] While no proven treatment or cure exists yet for ALS, the NeuroRehab and Balance Center can help you manage symptoms and maintain your quality of life with the help of occupational therapists, physical therapists, and speech-language pathologists. A case manager and exercise physiologist are also available to help you recover. […] An occupational therapist can help with accessibility recommendations: Your therapist can recommend home modifications and adaptive technology to help you with everyday life. […] A physical therapist can help you with strength training: Your therapist can help you build strength and improve your joint flexibility. […] Your therapist will teach you how to conserve energy and manage fatigue during recovery. […] A speech-language pathologist can help you with communication problems: Your speech-language pathologist can address any issues with talking and language comprehension. […] You may benefit from speech-generating or alternative speech devices, and your speech-language pathologist can help you determine the best option. […] Your therapist can complete an assessment to provide safe feeding recommendations.

• #62 Amyotrophic Lateral Sclerosis (ALS)

  https://www.caregiver.org/resource/amyotrophic-lateral-sclerosis-als/

  By working with physical and occupational therapists, PALS and their caregivers can identify appropriate devices to help maximize independence and reduce caregiver strain as changes in mobility occur. […] A speech therapist can help PALS maintain their speaking ability for as long as possible; however, the loss of speech does not mean the loss of the ability to communicate. […] As muscles weaken, breathing becomes more difficult and less effective in the person with ALS. […] It is important for people with ALS to receive proper nutrition and to maintain a normal weight. […] Gathering the appropriate resources to meet the challenges of ALS can be financially difficult for many families. […] It is important that the person with ALS and his or her primary caregiver get the information and support they need.

• #63 Amyotrophic Lateral Sclerosis (ALS): What It Is & Symptoms

  https://my.clevelandclinic.org/health/diseases/16729-amyotrophic-lateral-sclerosis-als

  Your provider might recommend different types of therapy or rehabilitation, including: Physical therapy helps you stay independent and safe through gentle exercises that strengthen muscles and support overall health. Occupational therapy teaches strategies for daily tasks and using assistive devices like wheelchairs or braces without tiring yourself out. Speech therapy supports safe swallowing and communication, helping you speak as long as possible and conserve energy with nonverbal options. […] With ALS, it can be hard to eat and drink enough to meet your body’s needs. Swallowing difficulties may cause weight loss and make it harder to get essential vitamins and minerals. […] As ALS progresses, breathing may become difficult. Noninvasive ventilation (NIV), delivered through a mask over your nose and mouth, can make breathing more comfortable. You may start using it at night and eventually need it full time.

• #64 Amyotrophic Lateral Sclerosis (ALS) | National Institute of Neurological Disorders and Stroke

  https://www.ninds.nih.gov/health-information/disorders/amyotrophic-lateral-sclerosis-als

  Supportive health care is best provided by integrated, multi-disciplinary teams of professionals that may include physicians, pharmacists, physical, occupational, speech, and respiratory therapists, nutritionists, social workers, clinical psychologists, and home care and hospice nurses. […] A treatment plan for ALS usually includes rehabilitation, which should be tailored to the persons individual needs and may include physical, occupational, and speech therapy. […] Physical therapy can help the person with ALS maintain function, including lowering their risk of falls and joint pain and maximizing their independence at different stages of the disease. […] Occupational therapists can help with activities of daily living and self-care. […] Speech therapists can help people with ALS learn strategies to speak louder and more clearly and help maintain the ability to communicate.

• #65 Amyotrophic Lateral Sclerosis (ALS)

  https://www.caregiver.org/resource/amyotrophic-lateral-sclerosis-als/

  By working with physical and occupational therapists, PALS and their caregivers can identify appropriate devices to help maximize independence and reduce caregiver strain as changes in mobility occur. […] A speech therapist can help PALS maintain their speaking ability for as long as possible; however, the loss of speech does not mean the loss of the ability to communicate. […] As muscles weaken, breathing becomes more difficult and less effective in the person with ALS. […] It is important for people with ALS to receive proper nutrition and to maintain a normal weight. […] Gathering the appropriate resources to meet the challenges of ALS can be financially difficult for many families. […] It is important that the person with ALS and his or her primary caregiver get the information and support they need.

• #66 Amyotrophic Lateral Sclerosis (ALS) Care | Kettering Health

  https://ketteringhealth.org/services-treatments/neurorehab-balance/amyotrophic-lateral-sclerosis-als/

  Our Approach to ALS Care […] While no proven treatment or cure exists yet for ALS, the NeuroRehab and Balance Center can help you manage symptoms and maintain your quality of life with the help of occupational therapists, physical therapists, and speech-language pathologists. A case manager and exercise physiologist are also available to help you recover. […] An occupational therapist can help with accessibility recommendations: Your therapist can recommend home modifications and adaptive technology to help you with everyday life. […] A physical therapist can help you with strength training: Your therapist can help you build strength and improve your joint flexibility. […] Your therapist will teach you how to conserve energy and manage fatigue during recovery. […] A speech-language pathologist can help you with communication problems: Your speech-language pathologist can address any issues with talking and language comprehension. […] You may benefit from speech-generating or alternative speech devices, and your speech-language pathologist can help you determine the best option. […] Your therapist can complete an assessment to provide safe feeding recommendations.

• #67 Amyotrophic Lateral Sclerosis (ALS): What It Is & Symptoms

  https://my.clevelandclinic.org/health/diseases/16729-amyotrophic-lateral-sclerosis-als

  Your provider might recommend different types of therapy or rehabilitation, including: Physical therapy helps you stay independent and safe through gentle exercises that strengthen muscles and support overall health. Occupational therapy teaches strategies for daily tasks and using assistive devices like wheelchairs or braces without tiring yourself out. Speech therapy supports safe swallowing and communication, helping you speak as long as possible and conserve energy with nonverbal options. […] With ALS, it can be hard to eat and drink enough to meet your body’s needs. Swallowing difficulties may cause weight loss and make it harder to get essential vitamins and minerals. […] As ALS progresses, breathing may become difficult. Noninvasive ventilation (NIV), delivered through a mask over your nose and mouth, can make breathing more comfortable. You may start using it at night and eventually need it full time.

• #68 Advance Care Planning in Amyotrophic Lateral Sclerosis

  https://practicalneurology.com/articles/2021-july-aug/advance-care-planning-in-amyotrophic-lateral-sclerosis

  It is important that people with ALS and their caregivers understand the specifics of gastrostomy tube placement, NIV, IV, and hospice care. […] Another clinical decision faced by persons with ALS is whether to start NIV, such as bilevel positive airway pressure (BiPAP), to improve symptoms related to respiratory muscle weakness and hypoventilation. […] With progressive respiratory weakness, eventually NIV will be inadequate, and to further prolong life, IV will be required. […] For those who forgo IV, it is important to discuss hospice care. Many understand hospice care as a means of hastening death. It is important to explain that hospice focuses on symptom management and emotional needs rather than prolonging life. […] In this heuristic, Family refers to the fact that no patient decision occurs in isolation. Social support networks, financial resources, and insurance coverage play a significant role in decision making.

• #69 Amyotrophic Lateral Sclerosis: Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/1170097-overview

  Noninvasive ventilation (NIV) should be offered to treat respiratory insufficiency to prolong survival and slow the decline of FVC; NIV may be considered at the earliest sign of nocturnal hypoventilation or respiratory insufficiency. […] Invasive ventilatory support, requiring tracheostomy, may be considered in the following cases: Patients who present with respiratory failure and who are otherwise largely neurologically intact. […] Patients who want to be kept alive using long-term invasive ventilatory support as their disease progresses. […] Patients in whom secretions cannot be managed and who therefore cannot benefit from noninvasive ventilatory support (this occurs very rarely). […] Muscle relaxants to relieve spasticity. […] The combination of dextromethorphan and quinidine (Nuedexta) to decrease emotional lability (pseudobulbar affect).

• #70 Medical Management – Amyotrophic Lateral Sclerosis (ALS) – Diseases | Muscular Dystrophy Association

  https://www.mda.org/disease/amyotrophic-lateral-sclerosis/medical-management

  Medical interventions and technology have vastly improved the quality of life for people with ALS by assisting with breathing, nutrition, mobility, and communication. Proper management of symptoms and proactive use of medical interventions and equipment can make a positive difference in day-to-day living, and potentially may lengthen life. […] Managing the symptoms is the mainstay treatment for ALS; multidisciplinary care may improve quality of life. […] A pulmonologist and respiratory therapist typically are involved in managing the care of individuals with ALS. […] Regular measuring of respiratory muscle strength is an important part of ALS care. […] It is recommended that patients with ALS receive pneumococcal vaccination and annual seasonal influenza vaccination as they may have compromised ability to handle respiratory secretions and an increased risk of developing chronic pulmonary conditions.

• #71 Amyotrophic Lateral Sclerosis (ALS): What It Is & Symptoms

  https://my.clevelandclinic.org/health/diseases/16729-amyotrophic-lateral-sclerosis-als

  Your provider might recommend different types of therapy or rehabilitation, including: Physical therapy helps you stay independent and safe through gentle exercises that strengthen muscles and support overall health. Occupational therapy teaches strategies for daily tasks and using assistive devices like wheelchairs or braces without tiring yourself out. Speech therapy supports safe swallowing and communication, helping you speak as long as possible and conserve energy with nonverbal options. […] With ALS, it can be hard to eat and drink enough to meet your body’s needs. Swallowing difficulties may cause weight loss and make it harder to get essential vitamins and minerals. […] As ALS progresses, breathing may become difficult. Noninvasive ventilation (NIV), delivered through a mask over your nose and mouth, can make breathing more comfortable. You may start using it at night and eventually need it full time.

• #72 Nutritional Care of the Patient with Amyotrophic Lateral Sclerosis – Practical Gastro

  https://practicalgastro.com/2022/05/18/nutritional-care-of-the-patient-with-amyotrophic-lateral-sclerosis/

  A multidisciplinary team approach is optimal to identify and address nutrition barriers, with each team member having a unique role. […] Inadequate oral intake compounds disease-related muscle mass loss. If in line with goals of care, gastrostomy tubes (G-tubes) and enteral nutrition (EN) are recommended for PALS unable to meet nutrition needs by mouth. G-tubes can provide safe and consistent delivery of nutrition, hydration, and medications. […] The benefit of G-tubes on QoL in PALS is debatable. […] Together, the multidisciplinary team can offer supportive strategies to enhance nutrition status in PALS.

• #73 Patient Care and Treatment in Amyotrophic Lateral Sclerosis | Ikeda | Journal of Neurology Research

  https://www.neurores.org/index.php/neurores/article/view/176/183

  The American Academy of Neurology (AAN) ALS Practice Parameter recommends consideration of noninvasive ventilation (NIV) when patients have orthopnea, SNIP 40 cm or maximal inspiratory pressure -60 cm, abnormal nocturnal oximetry or FVC 50%. […] Therefore, AAN Practice Parameter of ALS care recommends that NIV should be considered to treat respiratory insufficiency in ALS patients for lengthening survival and slowing FVC decline rate. […] In ALS patients, adequate nutrition is restricted insidiously and nutritional conditions worsen progressively. […] Early management of dysphagia contains dietary advice, modification of food consistency and patient education on special swallowing techniques. […] Physicians should emphasize to patients that PEG does not eliminate oral feeding. […] Riluzole is the only approved drug that has been shown to have a modest effect on prolonging survival in ALS patients. […] Cooperation between physicians and medical experts is required for better management and medication in ALS patients.

• #74 Amyotrophic Lateral Sclerosis (ALS)

  https://www.caregiver.org/resource/amyotrophic-lateral-sclerosis-als/

  By working with physical and occupational therapists, PALS and their caregivers can identify appropriate devices to help maximize independence and reduce caregiver strain as changes in mobility occur. […] A speech therapist can help PALS maintain their speaking ability for as long as possible; however, the loss of speech does not mean the loss of the ability to communicate. […] As muscles weaken, breathing becomes more difficult and less effective in the person with ALS. […] It is important for people with ALS to receive proper nutrition and to maintain a normal weight. […] Gathering the appropriate resources to meet the challenges of ALS can be financially difficult for many families. […] It is important that the person with ALS and his or her primary caregiver get the information and support they need.

• #75 Palliative Care and ALS (Amyotrophic Lateral Sclerosis)

  https://getpalliativecare.org/whatis/disease-types/als-palliative-care/

  ALS amyotrophic lateral sclerosisis a disease that causes nerve cells in parts of the brain and spinal cord to die. […] Palliative (pronounced pal-lee-uh-tiv) care is specialized medical care for people facing serious illnesses like ALS. […] Palliative care teams work in partnership with you, your neurologist and other doctors to manage your symptoms, communication and to oversee the coordination of your care. […] A common concern of people with amyotrophic lateral sclerosis has to do with the loss of function. […] Your palliative care team can help you with all this and more. […] Evidence suggests that people living with ALS who receive palliative care have improved survival compared with those who receive care only from general neurology clinics.

• #76 Amyotrophic lateral sclerosis: improving care with a multidisciplinary | JMDH

  https://www.dovepress.com/amyotrophic-lateral-sclerosis-improving-care-with-a-multidisciplinary–peer-reviewed-fulltext-article-JMDH

  Multidisciplinary care in ALS encompasses the provision of care to the ALS patient and their family by a range of health care disciplines and support services. […] Given the multitude of physical problems (eg, loss of mobility, respiratory failure, dysarthria, and dysphagia) and psychosocial problems (eg, depression, loss, bereavement, and family distress) posed by ALS, patients and their families engage with a variety of health care disciplines. […] The role of palliative care in multidisciplinary ALS care is essential for patients with ALS and their families to ensure their symptoms and issues are clearly identified and appropriately managed and to improve the quality of life for patients and their carers. […] Palliative care is appropriate from the time of diagnosis, especially as the extended duration between symptom onset and diagnosis means many patients are severely disabled by the time they are diagnosed.

• #77 Advance Care Planning in Amyotrophic Lateral Sclerosis

  https://practicalneurology.com/articles/2021-july-aug/advance-care-planning-in-amyotrophic-lateral-sclerosis

  Focusing on feelings, facts, and family is useful in shared decision making. In the absence of highly effective disease-modifying therapies, much of the relationship between clinicians and patients with amyotrophic lateral sclerosis (ALS) centers on ensuring patients understand the cause of their symptoms, gain understanding and ability to manage their functional impairments, and receive help to anticipate and manage disease progression. Advance care planning (ACP) involves the early discussion of patients preferences regarding medical care. Although ACP is common in ALS multidisciplinary clinics, approaches to these discussions are quite variable. […] A thoughtful approach to the medical decisions facing persons with ALS and their families is a critical part of establishing a therapeutic alliance.

• #78 Advance Care Planning in Amyotrophic Lateral Sclerosis

  https://practicalneurology.com/articles/2021-july-aug/advance-care-planning-in-amyotrophic-lateral-sclerosis

  Discussions regarding ACP are, instead, initiated at follow-up visits and may be introduced by the physician, the patient, a caregiver, or any member of the multidisciplinary team. The discussion of ACP should include clarification of issues surrounding power of attorney and a living will. […] Even with these simplified forms, however, a structured ACP discussion is warranted as the decisions faced by people with ALS and their caregivers can be nuanced and complex. […] We typically focus our discussions on the specific interventions most individuals with ALS will face to mitigate worsening bulbar and respiratory muscle weakness (eg, gastrostomy tube placement, noninvasive ventilation [NIV], tracheostomy with mechanical or invasive ventilation [IV] and hospice). […] Patients often have intuitions about procedures that may be based upon prior personal experience or media exposure. It is helpful to understand a patients point of view on medical procedures before attempting to review any specific details.

• #79 Advance Care Planning in Amyotrophic Lateral Sclerosis

  https://practicalneurology.com/diseases-diagnoses/neuromuscular/advance-care-planning-in-amyotrophic-lateral-sclerosis/31809/

  Discussions regarding ACP are, instead, initiated at follow-up visits and may be introduced by the physician, the patient, a caregiver, or any member of the multidisciplinary team. The discussion of ACP should include clarification of issues surrounding power of attorney and a living will. […] Even with these simplified forms, however, a structured ACP discussion is warranted as the decisions faced by people with ALS and their caregivers can be nuanced and complex. […] We typically focus our discussions on the specific interventions most individuals with ALS will face to mitigate worsening bulbar and respiratory muscle weakness (eg, gastrostomy tube placement, noninvasive ventilation [NIV], tracheostomy with mechanical or invasive ventilation [IV] and hospice). […] It is important that people with ALS and their caregivers understand the specifics of gastrostomy tube placement, NIV, IV, and hospice care.

• #80 2021 MIPS Measure #386: Amyotrophic Lateral Sclerosis (ALS) Patient Care Preferences | MDinteractive

  https://mdinteractive.com/mips_quality_measure/2021-mips-quality-measure-386

  Percentage of patients diagnosed with Amyotrophic Lateral Sclerosis (ALS) who were offered assistance in planning for end of life issues (e.g., advance directives, invasive ventilation, hospice) at least once annually […] This measure is appropriate for use in outpatient and long term care (e.g., nursing home, ambulatory). For each of these settings, there should be documentation in the medical record(s) that advance care planning was discussed or documented. […] Patients who were offered assistance in planning for end of life issues (e.g., advance directives, invasive ventilation, or hospice) at least once annually […] Assistance with end of life issues assessment of patient concerns, desires and needs relating to end of life issues. Bases on patients disease progression this may include discussions regarding invasive ventilation, advance directives and hospice.

• #81 Advance Care Planning in Amyotrophic Lateral Sclerosis

  https://practicalneurology.com/articles/2021-july-aug/advance-care-planning-in-amyotrophic-lateral-sclerosis

  It is important that people with ALS and their caregivers understand the specifics of gastrostomy tube placement, NIV, IV, and hospice care. […] Another clinical decision faced by persons with ALS is whether to start NIV, such as bilevel positive airway pressure (BiPAP), to improve symptoms related to respiratory muscle weakness and hypoventilation. […] With progressive respiratory weakness, eventually NIV will be inadequate, and to further prolong life, IV will be required. […] For those who forgo IV, it is important to discuss hospice care. Many understand hospice care as a means of hastening death. It is important to explain that hospice focuses on symptom management and emotional needs rather than prolonging life. […] In this heuristic, Family refers to the fact that no patient decision occurs in isolation. Social support networks, financial resources, and insurance coverage play a significant role in decision making.

• #82 Advance Care Planning in Amyotrophic Lateral Sclerosis

  https://practicalneurology.com/diseases-diagnoses/neuromuscular/advance-care-planning-in-amyotrophic-lateral-sclerosis/31809/

  For those who forgo IV, it is important to discuss hospice care. […] In this heuristic, Family refers to the fact that no patient decision occurs in isolation. […] Without highly effective disease-modifying therapies, people with ALS and their caregivers require a unique approach to advanced care planning to ensure decisions regarding nutritional and respiratory support are not left until a crisis occurs.

• #83 2021 MIPS Measure #386: Amyotrophic Lateral Sclerosis (ALS) Patient Care Preferences | MDinteractive

  https://mdinteractive.com/mips_quality_measure/2021-mips-quality-measure-386

  Palliative care should be adopted from the time of diagnosis. Many patients are not adequately informed about advance directives and end of life decision making and many hospice workers are not familiar with ALS. […] Initiate early referral to hospice or home care teams well in advance of the terminal phase of ALS to facilitate the work of the hospice team. […] Discuss options for respiratory support and end-of-life issues if the patient has dyspnea, other symptoms of hypoventilation or VC 50%.

• #84 Amyotrophic Lateral Sclerosis (ALS) | Cigna

  https://www.cigna.com/knowledge-center/hw/medical-topics/amyotrophic-lateral-sclerosis-hw179630

  Medicines. These may help slow the progression of ALS, relieve your symptoms, and keep you comfortable. […] A feeding tube. This can help you get enough nutrition to stay strong as long as you can. […] Breathing devices. They can help you breathe more easily as your chest muscles weaken. […] Palliative care is a type of care for people who have a serious illness. It’s different from care to cure your illness, called curative treatment. Palliative care provides an extra layer of support that can improve your quality of life not just in your body, but also in your mind and spirit. […] Palliative care can help you manage symptoms, pain, or side effects from treatment. It may help you and those close to you better understand your illness, talk more openly about your feelings, or decide what treatment you want or don’t want.

• #85 FF #477 Analgesic Strategies in Patients with Amyotrophic Lateral Sclerosis | Palliative Care Network of Wisconsin

  https://www.mypcnow.org/fast-fact/analgesic-strategies-in-patients-with-amyotrophic-lateral-sclerosis/

  Fast Fact Number: 477 […] Background: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disorder leading to impairments in limb movement, speaking, swallowing, and breathing. In a subset of patients with hereditary forms, frontotemporal dementia can occur, as well. There is no cure for ALS, and it is invariably a life-shortening illness. […] Experts promote an interprofessional approach for optimal analgesic management. […] Primary disease-mediated pain: Spasticity is common, particularly in upper motor neuron (UMN)-predominant disease. […] Non-pharmacological interventions: physical therapy (PT) and occupational therapy (OT) consultation for stretching and range of motion (RoM) exercises. […] Pain with neuropathic features such as burning, tingling, shooting, or allodynia has been reported in ALS, but it is not thought to be common. […] Secondary nociceptive pain: most frequently due to joint pain (especially neck and back) from reduced mobility and spinal muscle weakness. Pain from soft tissue injury from immobility is also common.

• #86 FF #477 Analgesic Strategies in Patients with Amyotrophic Lateral Sclerosis | Palliative Care Network of Wisconsin

  https://www.mypcnow.org/fast-fact/analgesic-strategies-in-patients-with-amyotrophic-lateral-sclerosis/

  Non-pharmacological interventions: RoM exercises, warm and cold compresses, transcutaneous electrical stimulation (TENS). […] Pharmacological strategies: first line agents are typically NSAIDs, acetaminophen, and topical agents like diclofenac gel and lidocaine. […] Opioids may be needed in the advanced stages. A cohort study suggested that they can effectively relieve pain and dyspnea in advanced ALS.

• #87 Amyotrophic Lateral Sclerosis: Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/1170097-overview

  Anticholinergics and sympathomimetics for sialorrhea. […] Mucolytics for thickened secretions. […] Lorazepam for anxiety. […] Selective serotonin reuptake inhibitors (SSRIs) for depression. […] Nonsteroidal anti-inflammatory drugs (NSAIDs), tramadol (Ultram), ketorolac (Toradol), morphine (immediate or extended release), or transdermal fentanyl for pain.

• #88 Caring for a Loved One with ALS: Tips and Support

  https://www.templehealth.org/about/blog/how-do-you-take-care-someone-with-als

  In my work with patients who are diagnosed with amyotrophic lateral sclerosis (ALS), I find that even though one person has the condition, it affects their whole circle of friends and family, too. […] If you’re the one who is going to take care of someone with ALS, there’s a heavy burden to not only learn about the disease itself, but also to understand how you can best help your friend or family member. It’s definitely a full-time job. […] Just to clarify, an ALS caregiver is a person who helps someone with ALS take care of the things they can’t take care of themselves. As a caregiver, you may help the patient with: Completing daily living tasks, Taking them to appointments, Keeping them company, Assisting them in making decisions that impact their care. […] Caregiving can often be rewarding, but over time, it can take a physical and emotional toll. To prepare yourself to be an ALS caregiver, try to learn all you can about the condition, and talk to your friends or family about the role you’d like to play in their care. More importantly, don’t lose focus on yourself!

• #89 Caring for a Loved One with ALS: Tips and Support

  https://www.templehealth.org/about/blog/how-do-you-take-care-someone-with-als

  Your loved one’s healthcare team will work together to develop an initial treatment plan that may include the following: ALS medications, Physical therapy, Occupational therapy, Skilled nursing. […] At some point, you might also look into skilled nursing visits to help you take care of your loved one in the home. This may involve scheduled visits by a nurse who is trained in caring for those with ALS. […] Caregiving is a selfless act, but it can also take a heavy toll on you. As a caregiver, you want to support your loved one as much as possible. Part of that support means taking care of yourself, too. […] Caregiver burnout can lead to emotional and physical problems that, over time, can affect your outlook and your own quality of life. […] Caregivers are often the patient’s biggest advocate and become a trusted part of Temple’s extended care team. […] Caregivers are truly irreplaceable when it comes to ALS treatment.

• #90 Caregiving Tips – Amyotrophic Lateral Sclerosis (ALS) – VA Caregiver Support Program

  https://www.caregiver.va.gov/Tips_by_Diagnosis/ALS.asp

  Many treatments for ALS are designed to relieve symptoms and improve the quality of life for patients. Teams of health care professionals can design individualized plans of medical and physical therapy and provide equipment to patients to keep them as mobile and comfortable as possible. […] Being a Caregiver of someone with ALS is a very important role. The role will require increased responsibility, a large time commitment, high energy, patience, and knowledge about ALS treatment, support, and resources. Caring for someone with ALS can also cause lots of worry and concern due to the level of care the Veteran may need. […] While most Caregivers are proud to be providing care and support, it can still be very challenging to balance everything. Recognizing that certain tasks and expectations can take a toll on you can help to avoid heading down the path to burnout. Developing a plan for your own selfcare can enhance your quality of life and the quality of life of the Veteran. The more relaxed and fulfilled you feel, the more easily you will be able to provide the necessary care to the Veteran.

• #91 Caregiving Tips – Amyotrophic Lateral Sclerosis (ALS) – VA Caregiver Support Program

  https://www.caregiver.va.gov/Tips_by_Diagnosis/ALS.asp

  Knowledge is empowering. Get as much information about ALS and caregiving as you can. The more you know, the better prepared you will be to provide care and support for the Veteran. […] Establish a regular schedule for respite care. Respite is very important because it gives you an opportunity to have time to recharge. […] Pay attention to your bodys signals of stress. In order to reduce stress, try practicing stress-management strategies, such as breathing exercises, yoga, and meditation. […] See a counselor or therapist if you are in need of more extensive mental health support. Make conscious decisions about how you want to spend your time; acknowledge your priorities and build your life around them. It is all right to say no to activities and commitments. You dont have to do everything.

• #92 Amyotrophic Lateral Sclerosis (ALS) Caregivers: You’re Not Alone (article)

  https://www.caregiver.org/resource/amyotrophic-lateral-sclerosis-als-caregivers-youre-not-alone-article/

  As a caregiver, you may experience many different emotions over time. […] In the early stages, its very important to find support to cope with these feelings even before you think you need it. […] These activities can help you stay well and build resiliency. […] This includes you as the caregiver, the person with ALS, their relatives, and friends. Each will require their own kind of support. […] You both should keep dates with friends, keep up with interests and hobbies, and do the things that fill you with joy as much as possible. […] One common question that caregivers ask, is what will happen to the person I care for if something happens to me? […] This is a good time to encourage the person with ALS to make or update their legal and financial arrangements. […] If you or the person diagnosed with ALS is employed, it is important to contact the Human Resources department to learn about eligible benefits, such as long-term disability and paid and unpaid family leave options.

• #93 Amyotrophic Lateral Sclerosis (ALS) Caregivers: You’re Not Alone (article)

  https://www.caregiver.org/resource/amyotrophic-lateral-sclerosis-als-caregivers-youre-not-alone-article/

  In the middle stage, a person with ALS may experience: Widespread severe muscle weakness, Muscle paralysis, Difficulty breathing, Swallowing, eating, or chewing become harder at this stage. […] As symptoms progress, it is common for the caregiver to feel isolated as you deal with new stages of grief and loss. […] If youre feeling depressed, anxious, or angry, know that these emotions are hard to deal with on your own. […] Safety becomes more important during the middle stage of ALS. […] A PT can complete an in-home safety evaluation and suggest modifications such as bathroom grab-bars for getting in and out of the shower. […] During late-stage ALS, the person you care for, will need assistance with most or all of their personal care: Speaking, eating, and drinking may not be possible, Mobility will be extremely limited, Respiration becomes more difficult.

• #94 Caregiving Tips – Amyotrophic Lateral Sclerosis (ALS) – VA Caregiver Support Program

  https://www.caregiver.va.gov/Tips_by_Diagnosis/ALS.asp

  Knowledge is empowering. Get as much information about ALS and caregiving as you can. The more you know, the better prepared you will be to provide care and support for the Veteran. […] Establish a regular schedule for respite care. Respite is very important because it gives you an opportunity to have time to recharge. […] Pay attention to your bodys signals of stress. In order to reduce stress, try practicing stress-management strategies, such as breathing exercises, yoga, and meditation. […] See a counselor or therapist if you are in need of more extensive mental health support. Make conscious decisions about how you want to spend your time; acknowledge your priorities and build your life around them. It is all right to say no to activities and commitments. You dont have to do everything.

• #95 Amyotrophic Lateral Sclerosis (ALS) Caregivers: You’re Not Alone (article)

  https://www.caregiver.org/resource/amyotrophic-lateral-sclerosis-als-caregivers-youre-not-alone-article/

  The goal of this article is to help you care for someone living with Amyotrophic Lateral Sclerosis, better known as ALS, or Lou Gehrigs disease. […] In this article, well look at the early, middle, and late stages of ALS, and focus on caregiving information and recommendations related to each stage. […] They will need you or another friend or family member to be with them more often for safety. […] For the person who is newly diagnosed and for their family, participating in a support group can help ease anxiety and teach pro-active coping skills. Individual counseling for you and the person you care for can also be very helpful. […] Learn all you can about ALS. […] Although there are no cures for ALS yet, there are ways to treat, manage, and slow the progression of symptoms. […] Social workers can help connect you to resources and referrals in your community and provide you with supportive counseling.

• #96 Amyotrophic Lateral Sclerosis (ALS) Caregivers: You’re Not Alone (article)

  https://www.caregiver.org/resource/amyotrophic-lateral-sclerosis-als-caregivers-youre-not-alone-article/

  As a caregiver, you may experience many different emotions over time. […] In the early stages, its very important to find support to cope with these feelings even before you think you need it. […] These activities can help you stay well and build resiliency. […] This includes you as the caregiver, the person with ALS, their relatives, and friends. Each will require their own kind of support. […] You both should keep dates with friends, keep up with interests and hobbies, and do the things that fill you with joy as much as possible. […] One common question that caregivers ask, is what will happen to the person I care for if something happens to me? […] This is a good time to encourage the person with ALS to make or update their legal and financial arrangements. […] If you or the person diagnosed with ALS is employed, it is important to contact the Human Resources department to learn about eligible benefits, such as long-term disability and paid and unpaid family leave options.

• #97 Amyotrophic Lateral Sclerosis (ALS)

  https://www.caregiver.org/resource/amyotrophic-lateral-sclerosis-als/

  By working with physical and occupational therapists, PALS and their caregivers can identify appropriate devices to help maximize independence and reduce caregiver strain as changes in mobility occur. […] A speech therapist can help PALS maintain their speaking ability for as long as possible; however, the loss of speech does not mean the loss of the ability to communicate. […] As muscles weaken, breathing becomes more difficult and less effective in the person with ALS. […] It is important for people with ALS to receive proper nutrition and to maintain a normal weight. […] Gathering the appropriate resources to meet the challenges of ALS can be financially difficult for many families. […] It is important that the person with ALS and his or her primary caregiver get the information and support they need.

• #98 Amyotrophic Lateral Sclerosis (ALS) Caregivers: You’re Not Alone (article)

  https://www.caregiver.org/resource/amyotrophic-lateral-sclerosis-als-caregivers-youre-not-alone-article/

  Talk with the medical team about all the possible ways to help reduce pain and/or suffering and increase comfort. […] Hospice services are designed to support individuals towards the end of life. […] The goal of hospice is making the patient as comfortable as possible. […] Your presence and advocacy will help to ensure that proper care is provided.

• #99 ALS In Home Care | Amyotrophic Lateral Sclerosis Care, Lou Gehrig’s Disease Care

  https://www.liveinhomecare.com/care2/amyotrophic-lateral-sclerosis-als-care/

  Because of the high demands, having in-home care benefits both people with the disease and their family members. For one, the person with ALS will not have to leave the comforts of home and move to an unfamiliar setting for care. Also, an in-home team of caregivers understands the unique needs of each person and can deliver comprehensive services to meet those needs. […] Live-In Home relieves the caregivers burden by offering a range of services that helps families and their loved ones with ALS who are in need of consistent care. […] FCP Live-In is a Live-In Home Care company with over two decades of experience specializing in elderly care needs within the home. Our live-in caregiver staff provides an insurance policy of safe and supportive care, along with a 24/7 professional support system that is there for the client and the live-in caregiver at all times.

• #100 Amyotrophic Lateral Sclerosis (ALS) | Cedars-Sinai

  https://www.cedars-sinai.org/health-library/diseases-and-conditions/a/amyotrophic-lateral-sclerosis-als.html

  Your ability to move and breathe independently will be affected, but your intelligence and ability to think is usually not. You and your family will work closely with your healthcare provider to manage symptoms as they develop. […] Support groups, such as the ALS Association, may help you cope with the disease. […] Treatment of ALS focuses on managing or reducing symptoms as much as possible.

• #101 Oral Care of a Patient with Amyotrophic Lateral Sclerosis (ALS)

  https://www.gavinpublishers.com/article/view/oral-care-of-a-patient-with-amyotrophic-lateral-sclerosis-als

  Amyotrophic Lateral Sclerosis (ALS) is a Motor Neuron Disease (MND). It is a progressive motor nerve atrophy which will cause progressive neuromuscular atrophy and disability. […] The cause of ALS is still uncertain. This study intends to introduce the oral problems caused by ALS in the patient, as well as how to use oral care approaches to achieve the maintenance of oral health of patients with ALS and alleviate the infections and discomforts caused by oropharyngeal dysfunction in such patients. […] Dysphagia is the most significant clinical change and problem of oropharynx in patients with ALS. […] Trismus is also an oral problem that perplexes patients with ALS, and is usually associated with masticatory muscle. […] Therefore, it is difficult for patients to maintain oral hygiene and they may experience decreased appetite.

• #102 Oral Care of a Patient with Amyotrophic Lateral Sclerosis (ALS)

  https://www.gavinpublishers.com/article/view/oral-care-of-a-patient-with-amyotrophic-lateral-sclerosis-als

  To maintain good oral health, the most important approach is to implement oral care. […] The oral care methods for people with special needs are proposed as follows: […] Because the patient suffered from severe trismus, it is impossible to clean tongue side, biting surface, and proximal surface of abutment surface. […] The author also advised family members to provide the patient with milk, egg, beans, and vegetables. […] To patients with special needs, in addition to taking care of their physical health, as a matter of fact, it is also necessary to pay more attention to their oral health because it is closely related to comfort and quality of life. […] Although ALS is one of the 5 major incurable diseases in the world, it is hoped that this study can help maintain oral health of patients with ALS, as well as alleviate the oral and dental diseases and discomforts caused by oropharyngeal dysfunction through the oral care methods proposed for patients with special needs.

• #103 Oral Care of a Patient with Amyotrophic Lateral Sclerosis (ALS)

  https://www.gavinpublishers.com/article/view/oral-care-of-a-patient-with-amyotrophic-lateral-sclerosis-als

  To maintain good oral health, the most important approach is to implement oral care. […] The oral care methods for people with special needs are proposed as follows: […] Because the patient suffered from severe trismus, it is impossible to clean tongue side, biting surface, and proximal surface of abutment surface. […] The author also advised family members to provide the patient with milk, egg, beans, and vegetables. […] To patients with special needs, in addition to taking care of their physical health, as a matter of fact, it is also necessary to pay more attention to their oral health because it is closely related to comfort and quality of life. […] Although ALS is one of the 5 major incurable diseases in the world, it is hoped that this study can help maintain oral health of patients with ALS, as well as alleviate the oral and dental diseases and discomforts caused by oropharyngeal dysfunction through the oral care methods proposed for patients with special needs.

• #104

  https://myhealth.alberta.ca/Health/aftercareinformation/pages/conditions.aspx?hwid=zc1391

  Amyotrophic lateral sclerosis (ALS) is a gradual wasting away of nerve cells (motor neurons) in the brain and spinal cord. These nerve cells control the muscles that allow movement. As ALS gets worse, it often becomes harder to walk, speak, eat, swallow, and breathe. But some people live for many years, even decades, after they learn that they have ALS. […] Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse advice line (811 in most provinces and territories) if you are having problems. It’s also a good idea to know your test results and keep a list of the medicines you take. […] Exercise and stretch your muscles as long as you can. Talk to a physiotherapist about exercises you can do. […] Eat small, frequent meals. Choose soft foods that are easy to swallow. Try to sit up when you eat. Eat slowly.

• #105 Amyotrophic Lateral Sclerosis (ALS): What It Is & Symptoms

  https://my.clevelandclinic.org/health/diseases/16729-amyotrophic-lateral-sclerosis-als

  Contact your healthcare provider if you: Have trouble performing your daily routine, Notice symptoms getting worse, Aren’t able to move around independently, Experience side effects from treatment. […] These symptoms can lead to respiratory failure, where you aren’t breathing in enough oxygen to support your body. This is life-threatening. Contact emergency services if you have trouble breathing.

• #106

  https://myhealth.alberta.ca/Health/aftercareinformation/pages/conditions.aspx?hwid=zc1391

  Consider joining a support group. Sharing your experiences with other people who have the same problem may help you learn more and cope better. […] Be safe with medicines. Take your medicines exactly as prescribed. Call your doctor or nurse advice line if you think you are having a problem with your medicine. […] If you have not already done so, prepare an advance care plan. This is instructions to your doctor and family members about what kind of care you want if you become unable to speak or express yourself. […] Call your doctor or nurse advice line now or seek immediate medical care if: You have frequent coughing periods. You feel like you are choking or have problems swallowing. You have trouble breathing. You have a fever.

• #107 Amyotrophic Lateral Sclerosis (ALS) | Cigna

  https://www.cigna.com/knowledge-center/hw/medical-topics/amyotrophic-lateral-sclerosis-hw179630

  Amyotrophic lateral sclerosis (ALS) is a gradual wasting away of nerve cells (motor neurons) in the brain and spinal cord. These nerve cells control the muscles that allow movement. As ALS gets worse, it often becomes harder to walk, speak, eat, swallow, and breathe. But some people live for many years, even decades, after they learn that they have ALS. […] Treatment may include: Physical and occupational therapy. These therapies can help you stay strong and make the most of the abilities you still have. […] Speech therapy. This can help you with coughing, swallowing, and talking after weakness in the face, throat, and chest begins. […] Supportive devices and equipment. These can help you stay mobile, communicate, and do daily tasks like bathing, eating, and dressing. Examples include a cane, a walker, a wheelchair, ramps, handrails, and foot or ankle braces.

• #108 ALS (Lou Gehrig’s Disease): Causes, Symptoms & Treatment

  https://www.healthline.com/health/amyotrophic-lateral-sclerosis

  Family members should talk with people with ALS about their care. As the condition progresses, some people may need support when making medical decisions. […] Connecting with a local ALS society can help people with ALS and their families access resources and support. […] Assistive devices like braces, mattresses, and wheelchairs can reduce pain by supporting the body in a more comfortable position. […] Some people may need nutritional support, like a feeding tube (enteral feeding). […] As speech becomes more difficult, communication tools provide another way to express thoughts and needs. Options include communication boards and electronic assistive communication devices. […] If you’re considering assistive devices, it’s best to consult with your healthcare team to find the right options for you.

• #109 What doctors wish patients knew about amyotrophic lateral sclerosis | American Medical Association

  https://www.ama-assn.org/delivering-care/population-care/what-doctors-wish-patients-knew-about-amyotrophic-lateral-sclerosis

  Additionally, social workers provide emotional and psychological support, and assistance with social and financial matters as needed by patients or their families. […] While there is no cure for ALS, the main management is lifestyle modification, so things like exercise, Dr. Hakimi said. […] And if you know that youre going to develop some element of weakness, maximizing your capability to have strength, coordination, muscle control and things like that with exercise before the disease has progressed very far is very good. […] The other lifestyle modifications include just making sure your home is safe, using assistive devices like a cane or walker, he said. […] And in some cases, once it involves your respiratory situation, using things like a BiPAP, which are like the CPAP machinesimilar concept, but the machine helps you breathe so that you dont develop oxygen problems.

• #110

  https://www.advocatehealth.com/health-services/brain-spine-institute/brain-care-center/conditions-treatments/neuromuscular-disorders/als

  Amyotrophic lateral sclerosis is a neuromuscular disease that causes muscle weakness that gradually gets worse. […] Treatments are aimed at managing ALS symptoms, extending survival and maintaining your quality of life. […] Rehabilitation and physical therapy are important parts of ALS treatment. […] Occupational therapists provide strategies to help with activities of daily living and can suggest assistive devices to help people maintain independence. […] Many people who have ALS use assistive devices such as powered wheelchairs, wheelchair ramps, breathing aids, and speech generating computer apps or devices.

• #111 ALS: amyotrophic lateral sclerosis and the trajectory of care

  https://www.myamericannurse.com/als-amyotrophic-lateral-sclerosis-and-the-trajectory-of-care/

  Amyotrophic lateral sclerosis care focuses primarily on palliation. […] Nurses must know how to identify symptoms, recommend treatment, coordinate care, and educate patients and families. […] An interprofessional team is essential in providing adequate care and comfort to patients and families. […] ALS care, which primarily focuses on palliation and helping patients adapt to physical changes, requires a wide range of resources and detailed coordination. Nurses play a critical role in identifying symptoms, making treatment recommendations, coordinating care, and educating patients and families. Nurse-led interprofessional care is essential for patient comfort and should begin as early as possible after diagnosis to ensure appropriate physical, psychosocial, and spiritual support. […] With increased education and awareness, nurses can serve as strong advocates and leaders on interprofessional teams caring for patients with ALS.

• #112 Nursing Care Plan For Amyotrophic Lateral Sclerosis (ALS) – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-amyotrophic-lateral-sclerosis-als/

  The nursing care plan for individuals with Amyotrophic Lateral Sclerosis (ALS) is designed to provide comprehensive and individualized care to address the unique needs and challenges associated with this progressive neurodegenerative disease. By implementing evidence-based nursing interventions, collaborating with the healthcare team, and promoting patient education and support, nursing professionals play a crucial role in optimizing the quality of life and well-being of individuals with ALS. […] Regular reassessment and evaluation are essential to monitor the patients changing needs, adjust interventions accordingly, and provide timely support. Collaboration with other healthcare team members, such as physical therapists, speech therapists, nutritionists, and respiratory therapists, ensures a holistic and coordinated approach to care.

• #113 Nursing Care Plan For Amyotrophic Lateral Sclerosis (ALS) – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-amyotrophic-lateral-sclerosis-als/

  A comprehensive nursing assessment provides the foundation for developing an individualized care plan for individuals with ALS. It guides the selection of appropriate nursing interventions, facilitates effective symptom management, and promotes the overall well-being and quality of life of patients and their families. Regular reassessment is essential to monitor disease progression, identify emerging needs, and adapt the care plan accordingly. […] These nursing diagnoses provide a basis for identifying the specific needs and concerns of individuals with ALS. They guide the development of appropriate nursing interventions to address the identified problems and promote the patients well-being. […] These nursing interventions aim to address the specific needs of individuals with ALS, promote their well-being, and enhance their quality of life. It is crucial to tailor the interventions to the individual patients needs, regularly evaluate their effectiveness, and collaborate with the healthcare team to provide comprehensive and holistic care.

• #114

  https://www.nursingcenter.com/journalarticle?Article_ID=5221346&Journal_ID=606913&Issue_ID=5221341

  Amyotrophic lateral sclerosis: Nursing care and considerations […] This neurodegenerative disease is rapidly progressive and always fatal. […] This article includes the etiology and pathophysiology of, signs and symptoms of, diagnosis of, and treatment for ALS, and special critical care nursing considerations to help patients at end of life.

• #115 Nursing June 2020: Amyotrophic lateral sclerosis: Nursing care and considerations

  https://www.qgdigitalpublishing.com/article/Amyotrophic+lateral+sclerosis%3A+Nursing+care+and+considerations/3673703/659978/article.html

  Amyotrophic lateral sclerosis (ALS) is a rapidly progressive neurodegenerative disease that is always fatal, although treatment can help slow disease progression. […] This article provides information on the etiology, pathophysiology, and signs and symptoms of ALS, as well as nursing considerations to help patients at the end of life. Although treatment can slow disease progression, it is not curative. […] Nurses are well situated to provide holistic, individualized end-of-life care to patients with ALS and their families. […] Patients with ALS often retain the mental capacity to make decisions even when close to death. However, the disease can impair their communication abilities, so patients and families must plan for end-of-life care before these abilities deteriorate. […] Comprehensive nursing care along with holistic elements (focusing on mind, body, spirit, and emotional well-being) can help nurses positively impact patients with ALS at the end of life.

• #116 Nursing June 2020: Amyotrophic lateral sclerosis: Nursing care and considerations

  https://www.qgdigitalpublishing.com/article/Amyotrophic+lateral+sclerosis%3A+Nursing+care+and+considerations/3673703/659978/article.html

  Keeping communication channels open between clinicians, the patient, and family is critical to delivering optimal patient care at the end-of-life phase of ALS. […] The challenges associated with a loss of independence can be exacerbated if their healthcare providers are not giving clear information in a sensitive and respectful manner. […] Encouraging patients to participate in the decision-making process early gives them a sense of control over their end-of-life process.

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