Early Stages
Physical effects
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Muscles may be weak and soft or stiff, tight and spastic. Muscle cramping and twitching (fasciculations) occur, as does loss of muscle bulk (atrophy).
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Symptoms may be limited to a single body region or mild symptoms may affect more than one region.
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The person may experience fatigue, poor balance, slurred words, a weak grip, tripping when walking or other minor symptoms.
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Sometimes this stage occurs before a diagnosis is made.
Assistance needed
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The person may need help with some physical tasks, and might benefit from the use of a cane, leg brace or other simple device.
Caregivers should:
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Provide assistance when asked.
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Provide emotional support, including the assurance, “We’ll get through this together.”
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Look for helpful ways to adapt the environment for safety and independence.
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Review and update legal, financial, medical and other affairs, and investigate government and insurance benefits.
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Begin to share the news of the ALS diagnosis with children, relatives and friends.
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Middle Stages
Physical effects
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Symptoms become more widespread.
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Some muscles are paralyzed, while others are weakened or unaffected. Fasciculations may continue.
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Unused muscles may cause contractures, in which the joints become rigid, painful and sometimes deformed.
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If a fall occurs, the person may not be able to stand back up alone.
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Driving is discontinued.
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Weakness in swallowing muscles may cause choking and difficulty eating and managing saliva.
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Weakness in breathing muscles can cause respiratory insufficiency, especially when lying down.
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Some people experience bouts of uncontrolled and inappropriate laughing or crying (pseudobulbar affect).
Assistance needed
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Range-of-motion exercises, especially for the shoulders, help keep joints limber.
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Leg braces and hand and wrist splints help extremities remain stretched and in a good position.
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Feeding tubes end the fear of choking and keep weight stable.
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Noninvasive ventilation (i.e., a BiPAP by Philips Respironics) helps compensate for weak breathing, especially at night.
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Adaptive equipment becomes more valuable.
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Wheelchairs conserve strength, prevent falls and promote independence.
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Communication devices enable people to stay part of the conversation.
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Adaptive eating, writing and computer tools preserve independence.
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Shower chairs make hygiene easier and safer.
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Lift chairs and rising toilet seats help with getting up from a seated position.
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Transfer boards and mechanical lifts enable safer, less strenuous transferring from one location to another.
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Antidepressants and anti-anxiety medication help bolster coping skills.
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Several drugs help with uncontrolled laughing or crying (pseudobulbar affect).
Caregivers should:
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Ask for help; don’t try to do it all alone.
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Give physical assistance with eating, drinking, bathing, toileting, dressing, communicating and mobility.
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Ensure range-of-motion exercises are performed each day.
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Evaluate standing, walking and swallowing abilities, and make changes to ensure safety.
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Help obtain needed assistive equipment.
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As much as possible, help the person with ALS stay involved in the affairs of daily living, including decision-making and planning.
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Watch for signs of depression and discuss them with the doctor.
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Be aware of caregiver depression and/or anxiety. Discuss it with a doctor and work out coping strategies. Caregivers must keep on top of their own physical health.
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Learn how to operate assistive equipment and perform care tasks from nurses, therapists and others on the health care team.
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Late Stages
Physical effects
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Most voluntary muscles are paralyzed.
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The ability to move air in and out of the lungs is severely compromised.
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Extremely limited mobility; unable to care for own needs.
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Poor respiration may cause fatigue, fuzzy thinking, headaches and susceptibility to pneumonia.
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Speech may be no longer possible.
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Eating and drinking by mouth aren’t possible.
Assistance needed
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Power wheelchair, hospital bed, mechanical lift, and switches that enable any moving body part to operate computers, environmental control units and communication devices.
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Assisted ventilation, either noninvasive or invasive (tracheostomy).
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Feeding tube.
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Urinary catheters aren’t required but can make toileting easier.
Caregivers should:
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Find and train caregiving help.
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Oversee 24-hour care operations.
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Find ways to help the person with ALS stay socially and mentally active.
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Get into a routine that supports the caregiver as well as the person with ALS.
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Although this stage is all-consuming for caregivers, surprisingly many report great stability and satisfaction in their daily lives at this later stage of the disease.
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