FYI: Care Management in ALS (2023)


FYI: Care Management in ALS (1)
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1. Muscle Weakness/Skin Conditions

  • Evaluate
    • Exercise intensity is assessed; spastic relaxation is present.
    • Assess for the presence of contractures.
    • Assess the skin daily, especially in areas prone to breakouts.
  • Common Nursing Diagnosis
    • Potential injury associated with decreased physical mobility.
    • There is a lack of knowledge about injury prevention along with a lack of knowledge to promote mobility and self-care.
    • Change comfort.
  • manage
    • Promotes activity and exercise.
  • Encourage continuation of daily activities and activities.
  • Range of motion (ROM) exercises to prevent joint contractures and pain; first Active ROM, then passive. Consult a physical therapist for an exercise program and refer to the recommended passive exercise descriptions in Managing Amyotrophic Lateral Sclerosis (MALS) Handbook II.
  • See a physical therapist or occupational therapist when weakness in a limb begins to affect mobility, safety, or independence.
  • Promotes proper positioning to prevent pressure sores
  • Use as many different positions as possible while lying in bed. Change positions every two hours or as your skin tolerates. After each change of position, check for redness in the bones
  • Protrude and provide eggshell or circulating mattresses when stationary to prevent independent repositioning.
  • Reposition on the wheelchair according to the patient's skin tolerance. Use a wheelchair cushion to prevent skin breakage.
  • Proper positioning when walking or sitting in a wheelchair, i.e. using a sling when the upper limbs are weak.
  • Promotes adequate nutrient intake.

two. Urine function

  1. Evaluate
    • Assess voiding patterns and fluid intake patterns.
    • Assess the ability to move to the toilet or toilet, or the ability to stand in males.
    • Evaluate for signs and symptoms of UTI; frequency, urgency, painful urination, fever, etc. (UTI is rare in ALS).
  2. Common Nursing Diagnosis
    • 1. Decreased urination associated with:
  • gradual loss of mobility
  • dehydration
  1. manage
    • Unless contraindicated by ability to swallow, 2,500 cc of fluid per day is encouraged.
    • Contact your doctor if you have signs of a UTI.

3. Changes in intestinal function

  1. Evaluate
    • Assess for stool pattern (constipation, diarrhea, impaction.
    • Assess diet, fluid intake, and swallowing ability.
    • Assess activity levels.
  2. Common Nursing Diagnosis
    • Decreased intestinal excretion.
    • Gradual loss of mobility.
    • Dietary fiber is gradually reduced.
    • Usually mil/moderately dehydrated.
    • The muscles of the trunk gradually fail to support the normal posture that facilitates bowel movements.
  3. Management - ideally focused on preventive measures. Unlike neurogenic gut, patients with ALS have reduced gut motility.
  4. Encourage patients to keep a daily stool log (including consistency and quantity), especially if constipation changes or the number of bowel movements decreases.
  5. Unless contraindicated by ability to swallow, 2,500 cc of fluid per day is encouraged.
  6. Provide dietary guidance on the importance of fiber, bran, prune juice, etc. unless contraindicated by swallowing ability.
  7. Daily use of stool softeners and Metamucil is usually recommended. Laxatives can be used, but long-term use can damage the gut. Mineral oil should not be used due to the risk of inhalation.
  8. As mobility improves and/or changes in diet and fluid intake, a more aggressive daily or every other day bowel program may be required.


1. Nutritional requirements

A. Evaluation

1. Anthropometric measurements:
a) height
b) Premorbid "normal" weight
c) Current weight
d) Weight gain/loss pattern since disease onset
e) "Ideal Body Weight"

2. Laboratory Tests - Indicated if the patient has lost 10% or more of their body weight in the past two months, or 15% or more below their "ideal body weight."

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3. Hydration status – determined by carefully recording fluid intake and output and testing urine specific gravity. The average person needs 35cc of fluid/kg of body weight for adequate kidney function. This number can be used to calculate fluid requirements.

B. Dysphagia (dysphagia)

1. Evaluation
a) Assess gag, cough and swallow reflexes, and chewing.
b) Assess the patient's ability to swallow liquids and solids.
c) Continuous assessment of weight.

2. Common Nursing Diagnosis
a) Potential hazards.
b) Decreased nutritional status.
c) Lack of knowledge about dietary substitutions, food preparation and alternative procedures for complementary feeding.

3. Management
a) Discuss techniques for protecting the airway, ie. Sit up straight, place your chin on your chest when swallowing, and focus when eating. Avoid adding stimuli, i.e. chatting while eating.
b) Consult a dietitian to determine adequate nutrient intake for continued weight loss.

C. Nutritional Therapy for Patients with Dysphagia

1. Promotes Optimal Body Weight
a) Eat small meals frequently.
b) "Easy to eat" food, i.e. adapted to mechanical soft diet.
c) Increase daily activity through non-fatiguing exercise.
d) Liquid supplements between meals.


A. Evaluation

1. History: subjective symptoms (craving for air, shortness of breath and relationship to postural changes, fatigue).
2. Assess for: Changes from baseline respiratory rate, depth, pattern, chest expansion; adequate respiratory exchange and effort; intercostal retraction; abdominal breathing; diaphragmatic breathing; nasal expansion and use of cervical accessory muscles for breathing; color (cyanosis); cough, gag, and swallow reflexes.
3. Auscultation: Decreased breath sounds with additional or involuntary sounds (ie, wheezing, wheezing).
B. Common nursing diagnoses
1. Inefficient airway clearance associated with:
a) Decreased/absent gag reflex.
b) Decreased/absent swallowing reflex.
c) Decreased/absent cough/sneeze reflex.
2. Impaired gas exchange associated with:
a) Aspiration secondary to impaired/absent vomiting, swallowing, and cough/sneeze reflexes.
b) Atelectasis secondary to diminished cough/sneeze reflex and/or hypoventilation.
c) Inefficient breathing patterns.
3. Lack of knowledge:
a) Free airway and gas exchange.
b) considerations regarding mechanical life support.

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3. Management

1. Keep the airway open
a) Use a suction device to suck out secretions to prevent choking.
b) Use of medication (ie Elvail – 25 mg t.i.d. or 25-75 mg at hs to reduce secretion).
c) If the patient has had a tracheostomy, suction and tracheal care should be provided to prevent accumulation of secretions, possible obstruction and infection.

2. Ensure adequate ventilation
a) Deep breathing and coughing exercises and use of motivational spirometers to encourage lung expansion.
b) Chest physiotherapy: percussion, assisted coughing and postural drainage if indicated.
c) Oxygen, upon request.
d) Elevate the head of the bed with foam wedges or hospital beds to relieve shortness of breath and provide comfort while sleeping.
e) Help monitor and titrate medications that help provide comfort when air starvation is chronic and distressing.

3. Provide information and opportunities to discuss options for mechanical ventilation. In general, the patient and family should be helped to consider life support options if there are early signs of dysphagia, dyspnea, or after the patient has had time to adjust to his diagnosis. The important thing to remember is that the patient needs to think about these decisions before he/she needs them.

4. Provides information and opportunities to discuss medical orders (also known as living wills or medical enduring powers of attorney). The pros and cons of life support should be discussed in detail before the patient completes the medical instructions.


A. Evaluation
1. Assess loudness and intelligibility of speech. 2. Assess ability to communicate needs with family/significant others.

B. Common nursing diagnoses
1. Language communication impairment associated with:
a) Voice volume changed.
b) Changes in clarity of speech (dysarthria).
c) Loss of speech.

3. Management
1. Dysarthria or complete loss of speech and inability to use upper limbs.
2. There are many options for communication.
3. Refer to a speech and language therapist for assessment and intervention.

psychological adaptation

A. Evaluation
1. Assess the patient's and family's support systems and coping patterns and recognize that the patient and family will continue to grieve as the loss of independence continues.

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B. Common nursing diagnoses
1. Ineffective coping strategies
2. Lack of knowledge about mobility and comfort alternatives.
3. Reduced support system.

3. Management
1. Provide an accepting environment where patients and families can share concerns and fears with each other and with members of the healthcare team.
2. Help patients and families anticipate care needs and impacts.
3. Anticipating and supporting emotional responses to loss as normal responses allows families to more effectively receive information and process practical decision-making.
4. Offer encouragement and anticipate unasked questions.
5. Encourage realistic expectations about the disease whenever possible.
6. Consult with a counselor, psychiatrist, psychologist, or psychiatric clinical nurse specialist, if necessary.
7. If available, consult the ALS support team.

-- Excerpted from "Amyotrophic Lateral Sclerosis: A Teaching Manual for Health Professionals," Nancy Konikow, R.N., M.N., ALS Health Support Services, Kirkland, Washington.

Amyotrophic Lateral Sclerosis-Motor Neurone Disease Care Program

nursing intervention
weakness to flaccid paralysis
Emotional responses to diagnosis and prognosis (anxiety, fear, denial, anger).
Keep the patient as active as possible
prevent skin breakouts
Prevention of venous thrombosis and pulmonary embolism
Helping Patients Through the Grieving and Grieving Process
Helping Families Deal with Illness and the Grief Process

  • The active and passive range of motion of the affected limb was 3-4 times a day.
  • Turn and set every 2 hours.
  • Keep skin dry.
  • Wash and dry skin after each bowel movement or urination (especially in women).
  • Lotion drying areas.
  • Beds use air flotation or egg box mattresses.
  • Compression stockings (if ordered), especially when the patient is out of bed.
  • Encourage expressing feelings.
  • Accept behaviors at all stages of the grieving process and allow for grieving.
  • Talk to the family about the grieving process and encourage them to accept the patient's behavior and their own reactions.
  • Use a positive approach (asking patients and families what they know about the disease) when discussing progression.
  • Encourage being independent for as long as possible and doing things on your own as much as possible.
  • Teach your family to do the same.
  • Arranging transfer activities, overtime, etc. while in the hospital
  • Create the same family plan at home.

nursing intervention
Changing body image and self-esteem
(when bulbar symptoms occur)
respiratory insufficiency
difficulty swallowing and chewing
Help patients accept new body image and maintain self-esteem
Maintain adequate O2 delivery to patient; prevent complications of pneumonia-assisted cough
prevent aspiration
Make it easier for patients to eat
Ensure adequate nutrition and fluid balance

  • Discuss changes in body image and what it means for the patient.
  • Patients are encouraged to discuss this matter with their families.
  • Patients are encouraged to focus on positive aspects of themselves and to share these aspects of themselves with others.
  • Attract and maintain the patient's airway.
  • Manage 02 as needed.
  • Always raise the stove to at least 30 degrees
  • Auscultate the chest frequently to assess overall airway status.
  • Help the sick person to cough and breathe deeply at least every two hours.
  • Incentive spirometers or chest physical therapy can be used as needed.
  • Wear respiratory protection if necessary.
  • Assess the gag reflex before oral fluids or food.
  • Turn stove on high for ½ hour during and after meals.
  • Soft food, mechanical soft food or puree diet as needed.
  • High Protein, High CHO Diet
  • Fluid intake 3000 cc/day.
  • Consult a nutritionist for the basics of good nutrition and snacking.

nursing intervention
Difficulty speaking
Frequent urination or incontinence due to impingement
establish effective communication
Maintenance of normal bowel and bladder function (usually until advanced disease)

  • If the patient can use his hands, start using the magic board.
  • If you can't use a weapon, start using a word or letter board.
  • The electronic larynx can be used as it is for laryngectomy patients.
  • Consult a speech therapist and OT for assistance and further assessment of language needs and ways to meet them.
  • If possible, place the urinal/bedpan within the patient's reach.
  • Use effective means for the patient to communicate when the patient needs to urinate or have a bowel movement.
  • catheterization or as needed
  • External cat is useful for noc.
  • Affects desired bowel routine; Fleet enemas, Colace, Metamucil, liquids, suppositories if patient can tolerate high fiber diet.

Signs/symptoms of illness, notify the M.D. of:

  • Difficulty breathing
  • Signs of infection - cold, flu, increased temperature, chills
  • hard to swallow
  • Difficulty speaking
  • Sudden exacerbation of signs and symptoms of pre-existing conditions


How do you counsel someone with ALS? ›

Encourage them to keep participating in daily life, continue with hobbies, and engage with friends and family. Be specific when offering help. Life is busy, be honest about what you can and can't do to help. Run an errand, drop off a meal, or help drive kids around to activities.

What nursing interventions are most important for the ALS patient? ›

Provide intellectual stimulating activities, because the client typically experiences no cognitive deficits and retains mental abilities. Provide client and family teaching. Promote measures to enhance body image. Provide referrals.

What is the best care for ALS patients? ›

Engage in activities that reduce stress, like daily walks or yoga. Eat healthy foods and try not to use alcohol as a stress-reliever. Ask a back-up caregiver to care for your loved one while you schedule an activity for yourself.

How do you manage fatigue with ALS? ›

Strategies for managing fatigue

Stopping and resting often. Alternating activities with rest periods. Trying to establish a regular sleeping pattern. Avoiding prolonged bathing in warm water, as it can make muscle fatigue worse.

What are the challenges of caring for someone with ALS? ›

If you are caring for someone with ALS, it's common to feel a range of emotions including worry, fear, frustration, discomfort, and/or even anger. Many caregivers also feel guilt like they should or could be doing a better job or feelings of uncertainty about the future.

How do you help ALS patients communicate? ›

Eye-Gaze Devices

These devices use eye movement to “activate” a letter, word or phrase on a computer screen, which can then be spoken by the computer for communication purposes. To use eye-gaze devices, the person living with ALS needs to be able to use the muscles that control upper, lower and lateral eye movement.

What are the three priority nursing interventions? ›

Creating a safe environment, promoting good health practices, and listening closely to patients are daily nursing interventions you will perform and perfect throughout your career as a nurse.

What are 3 interventions that the nurse can help with and initiate? ›

Providing physical treatments, emotional support, and patient education are all examples of nursing interventions. Nurses typically perform these actions as part of a nursing care plan to monitor and improve their patient's comfort and health.

What are the top 5 nursing interventions that need to be considered with a patient with a heart failure? ›

Nursing Management
  • Relieving fluid overload symptoms.
  • Relieving symptoms of anxiety and fatigue.
  • Promoting physical activity.
  • Increasing medication compliance.
  • Decreasing adverse effects of treatment.
  • Teaching patients about dietary restrictions.
  • Teaching patient about self-monitoring of symptoms.

What are three treatments for ALS? ›

There are currently seven drugs approved by the U.S. Food and Drug Administration (FDA) to treat ALS and its symptoms: Qalsody, RELYVRIO, Radicava, Rilutek, Tiglutik, Exservan and Nuedexta. Please consult your doctor or health care professional about which ones may be right for you.

What is the latest ALS treatment? ›

FDA approved Qalsody (tofersen) to treat patients with amyotrophic lateral sclerosis (ALS) associated with a mutation in the superoxide dismutase 1 (SOD1) gene (SOD1-ALS). Qalsody is an antisense oligonucleotide that targets SOD1 mRNA to reduce the synthesis of SOD1 protein.

What is first line treatment for ALS? ›

Sialorrhea, excessive drooling, is a common complication of ALS that can be frustrating and embarrassing for patients. First-line treatments are anticholinergic drugs such as scopolamine, glycopyrrolate, atropine, hyoscyamine, and amitriptyline.

What helps ALS patients sleep? ›

Tylenol PM is one of the best sleep aids for those with ALS/MND. It's best to avoid the neuronal suppressing nature and other adverse effects of other, stronger sleep aids (such as Ambien, Ambien CR, Vicodin, Xanax, Lunesta, Sonata, Valium and other neuronal suppressing sleep assistive medications).

How to increase energy with ALS? ›

Anti-Fatigue strategies are:
  1. Learn methods of making every task easier. ...
  2. Pace yourself. ...
  3. Alternate activities with periods of rest. ...
  4. Get a handicapped parking sticker. ...
  5. Try to establish a regular sleeping pattern. ...
  6. Avoid prolonged bathing in warm water, as it may worsen muscle fatigue.

What daily activities does ALS affect? ›

Daily activities include eating and drinking, dressing, toileting, bathing, oral hygiene, grooming and recreation and sleep.

Can ALS patients be cared for at home? ›

The most commonly provided home health care services for people with ALS are nursing and assistive care (personal care based onyour eligibility); however, other services such as therapy and hospice are available as well.

How can you prolong the life of ALS? ›

People with ALS who use an assisted-breathing device usually have increased life expectancy and may have better quality of life. Longer life expectancy is also likely for people with ALS who use a feeding tube known as a PEG tube, since nutrition plays a critical role in extending survival.

Is there any hope for someone with ALS? ›

There is no cure for amyotrophic lateral sclerosis (ALS), a usually fatal neurodegenerative disease that mainly strikes when a person is between 40 and 70 years old.

In what stage of ALS is speech affected? ›

Speech problems (dysarthria) are common and among the first symptoms of ALS. They occur during the early stages and usually worsen as the disease progresses.

Do all ALS patients lose their ability to speak? ›

In the paper, the researchers determined that while between 60%-70% of individuals with Bulbar-onset ALS will lose their functional speech in about three years after symptom onset, the majority of individuals with Spinal-onset ALS will retain their functional speech over five years since symptom onset.

What is voice banking for ALS? ›

GENERAL QUESTIONS Q: What is voice banking? A: Voice banking is a way for individuals living with ALS to create a synthesized version of their natural speaking voice. The benefit to voice banking is that individuals can use their personal synthesized voice with their speech generating device.

What are the 5 priorities of nursing care? ›

The five priorities focus on: recognising that someone is dying; communicating sensitively with them and their family; involving them in decisions; supporting them and their family; and creating an individual plan of care that includes adequate nutrition and hydration.

What are the 5 nursing interventions? ›

The nursing process functions as a systematic guide to client-centered care with 5 sequential steps. These are assessment, diagnosis, planning, implementation, and evaluation.

What is the nurse's first priority? ›

The first-level priority problems are health issues that are life-threatening and require immediate attention. These are health problems associated with ABCs; airway, breathing, and circulation, such as establishing an airway, supporting breathing, and addressing sudden perfusion and cardiac issues.

What are three 3 nursing actions that should be included in the plan of care for the client who has dysphagia? ›

Nursing Assessment and Rationales
  • Assess the ability to swallow by positioning the examiner's thumb and index finger on the patient's laryngeal protuberance. ...
  • Evaluate the strength of facial muscles. ...
  • Check for coughing or choking during eating and drinking.
Apr 20, 2023

What is an example of an appropriate nursing intervention? ›

Examples of nursing interventions include administering treatments, procedures and medications to patients. Educating patients or adjusting their resting position is also a nursing intervention.

What is an example of nursing management? ›

Nursing management examples include effective communication, negotiation and conflict resolution, resource management and team-building.

What are the 7 nursing interventions? ›

Based on the medical needs they cater to, nursing interventions are further classified into seven important categories: community, family, behavioral, physiological basic, physiological complex, safety, and health system.

What would your top 4 priority interventions be for a patient with respiratory distress? ›

Nursing Intervention

Administer oxygen as prescribed. Position client in high fowler's position. Restrict fluid intake as prescribed. Provide respiratory treatment as prescribed.

What are the key interventions used in the management of patients who are deteriorating? ›

There are six initial nursing actions that should be taken when responding to clinical deterioration. These include A-Call for Help, B-Collect More Data, C-Patient Positioning, D-Oxygen Therapy, E-Prepare for RRS/MET and F-Handover. Use the emergency call button in the patient's room to alert others that you need help.

What drugs should be avoided in ALS? ›

Antidepressants and a skeletal muscle relaxant, baclofen, were found to be associated with a higher risk of ALS. Reverse causation might be the main explanation for these associations as depression and muscle problems are also symptoms of ALS and the risk is decreasing with longer time before diagnosis [6, 22, 28].

What is the new treatment for ALS 2023? ›

Washington, D.C. (April 25. 2023) – The ALS Association commends the FDA for approving tofersen under the agency's accelerated approval pathway for the treatment of people living with ALS connected to mutations in the SOD1 gene.

What kind of pain do ALS patients have? ›

Primary pain in patients with ALS includes neuropathic pain and pain from spasticity or cramps.

What is the average ALS life expectancy? ›

Although the mean survival time with ALS is two to five years, some people live five years, 10 years or even longer.

How quickly does ALS progress? ›

ALS always worsens and tends to worsen quickly over the course of months, leading to severe disability within one to two years. The order in which different symptoms appear is not always consistent. However, for most people with ALS, all of the symptoms will eventually develop.

How close are we to curing ALS? ›

At present, there is no cure for ALS. However, there are several treatment options, including stem cell therapy, Riluzole, occupational therapy, and gene therapy, which may help manage symptoms and slow the progression of the disease, as well as ongoing research for potential cures and treatments.

What medication is used to slow down the progression of ALS? ›

There are only two approved medications to treat the symptoms of ALS in the U.S. One pill, called Rilutek, came on the market in 1995 and has been shown to extend life expectancy by two to three months. Another pill, sold as Radicava, was approved in 2017 and may slow down the disease's progression.

What is the slowest progressing ALS? ›

Flail leg syndrome (FLS) is a regional variant of amyotrophic lateral sclerosis (ALS) with the characteristics of slow progression and the symptoms confined to the lumbosacral region for extended periods.

Can ALS stop progressing? ›

It can also be variable within a given patient, with periods where the disease seems to speed up or slow down for a while. Less appreciated is the fact that ALS progression can stop (plateau) or even reverse with significant recovery of lost motor functions.

How do speech therapists help ALS patients? ›

Having strategies for communication that will reduce fatigue and increase communication efficiency. Communicating with people not in the immediate area via email, text message, phone, or other means. Independently setting up, customizing, and using all of elements of their communication system.

How can speech therapy help with ALS? ›

Therapy exercises may include slowing speech and exaggerating articulation to improve comprehension for others. Sentence and word phrasing exercises can help promote energy conservation. Tongue and diaphragmatic exercises also can improve articulation and voice projection.

What can you do to help ALS? ›

Although there is no known cure for ALS, the drug riluzole has been approved for treatment and may slow progression of the disease. It is expensive, however, and appears modestly effective. Generally, treatment is designed to help control symptoms. Drugs such as baclofen or diazepam may help control spasticity.

Can speech therapy help ALS patients? ›

As the ability to speak begins to deteriorate in ALS patients, SLPs will help them to use other forms of communication and devise ways in which the person can continue to use their own voice for as long as possible.

What treatment is recommended for speech and language impairment? ›

Anyone who needs help with speech or language skills can benefit from speech therapy. There's no age that's best or more correct to get help. Both pediatric speech therapy and speech therapy for adults can help anyone with a communication disorder.

How can I make my life easier with ALS? ›

Staying connected with others, prioritizing important relationships, building a support team, and taking good care of yourself are a few ways you can improve your quality of life.

How do you spend time with someone with ALS? ›

Offer to visit with the person with ALS so the caregiver can run errands, attend a support group meeting, do a favourite activity, or attend a religious service. Even if the caregiver does not leave the house, this will provide some personal time. Chances are the person with ALS will also enjoy your company.

What foods help fight ALS? ›

Remember to eat the recommended daily servings of beef, fish, poultry, milk, cheese, and eggs. Experiment with high protein plant based foods such as legumes, beans, and tofu. These foods are high in protein, which provides the building blocks for muscle.

Does massage help with ALS? ›

Massage therapy can be beneficial for patients with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease or motor neuron disease. Massage therapy can help the physical, emotional and psychological well-being of those with ALS, and can increase quality of life.

What professionals can help with ALS? ›

Those specialists may include experts in lung diseases (pulmonologists); ear, nose and throat specialists; interventional radiologists; clinical nurse specialists; specialists trained in physical medicine and rehabilitation (physiatrists); and supportive care (palliative medicine).


1. OT for people with ALS/MND: Adapting and adjusting to rapidly changing function
(The International Alliance of ALS/MND Associations)
2. Insurance & Benefits for People Living with ALS with Shannon Sullivan
(The ALS Association - Massachusetts Chapter)
3. Caregivers of Individuals with ALS & Cognitive and Behavioural Impairment Pilot Study
(Les Turner ALS Foundation)
4. EAT MORE in ALS by Dr. Anne-Marie Wills, MD MPH from Mass General, Harvard Medical School
(Everything ALS)
5. ALS (Lou Gehrig's Disease) - Health Matters
(University of California Television (UCTV))
6. How I'd start with no money (the McDonald's formula)
(Sorelle Amore Finance)


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